- DEPARTMENT OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2019

[Senate Hearing 115-709]
[From the U.S. Government Publishing Office]

DEPARTMENT OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2019

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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 departmental and nondepartmental witnesses. The
statements and letters of those submitting written testimony
are as follows:]

DEPARTMENTAL WITNESSES

Prepared Statement of the America's Public Television Stations and the
Public Broadcasting Service
On behalf of America's 170 public television licensees, we
appreciate the opportunity to submit testimony for the record on the
importance of Federal funding for local public television stations and
PBS. We urge the Subcommittee to support funding of at least $455
million in 2-year advance funding for the Corporation for Public
Broadcasting (CPB) in fiscal year 2021, $20 million for the Public
Television Interconnection System in fiscal year 2019 and $30 million
for the Ready To Learn program at the Department of Education in Fiscal
Year 2019.
corporation for public broadcasting: at least $455 million (fiscal year
2021), 2-year advance funded
Local stations and PBS are committed to serving the public good in
education, public safety, civic leadership, and other essential areas
of society. Federal funding for CPB makes these services available to
all Americans, including those in rural and underserved areas, and this
funding enjoys the overwhelming support of the American people.
In a January 2017 bipartisan Hart Research Associates/American
Viewpoint poll, 76 percent of American voters, including majorities of
Republicans, Independents, and Democrats, support Federal funding for
public television and want it maintained at current levels or
increased. Over 70 percent of Federal funding for CPB goes directly to
local stations, creating a successful public-private partnership of
locally-controlled, broadly trusted, highly valued community servants.
Education
Local public television stations are America's largest classroom,
meeting their communities' lifelong learning needs by providing the
highest quality educational content and resources on multiple media
platforms and in-person. Public television's exceptional content is
available to nearly every household in America and has helped more than
90 million pre-school age children get ready to learn and succeed in
school.
PBS, in partnership with local public television stations, has
created PBS LearningMedia, an online portal where almost 2 million K-12
educators and users employ more than 100,000 standards-based,
curriculum-aligned interactive digital learning objects created from
public television content, as well as material from the Library of
Congress, National Archives and other high-quality sources.
Overall, PBS LearningMedia helps teach an estimated 40 million
students, including 33,000 homeschoolers, every day. Public television
stations also provide distance learning services that bring high-
quality instruction in specialized fields to remote areas.
In January of 2017, local public television stations throughout the
country partnered with PBS to bring a new, first-of-its kind, free PBS
KIDS 24/7 channel and live stream to their communities--providing kids
throughout the country with the highest level of educational
programming, available through local stations any time, day or night,
over-the-air and streaming.
Public television stations are also leaders in adult education.
Public television operates the largest nonprofit GED program in the
country, helping tens of thousands of second-chance learners earn their
high school equivalency degree. In addition, public television stations
are leaders in workforce development, including the retraining of
American veterans by providing digital learning opportunities for
training, licensing, continuing education credits and more.
Partners in Public Safety
Public broadcasting stations throughout the country are leading
innovators and essential partners to local public safety officers. In
partnership with FEMA, the public television interconnection system
provides the necessary redundant path for the Warning Alert and
Response Network that enables cell subscribers to receive geo-targeted
text messages in the event of an emergency--reaching citizens wherever
they are.
This digital infrastructure and public television's spectrum also
enable stations to provide State and local officials with critical
emergency alerts, public safety, first responder and homeland security
services and information during emergencies through a process known as
datacasting. Datacasting uses broadcast spectrum to send encrypted data
and video to first responders with no bandwidth constraints.
In partnership with local public television stations and local law
enforcement agencies, the U.S. Department of Homeland Security (DHS)
has conducted several pilots in Houston, Chicago, Boston and Washington
State, demonstrating the efficacy of this technology for expanding
emergency communications capabilities.
The pilots were such a success that the DHS Science and Technology
Directorate signed an agreement with America's Public Television
Stations to maximize and promote the technology and partnerships with
local public television stations on a nationwide basis.
To support this nationwide effort, local public television stations
have committed to reserve up to 1 megabit per second of their spectrum
for the First Responder Network Authority (FirstNet). Additionally,
stations are increasingly partnering with their local emergency
responders to customize and utilize public television's infrastructure
for public safety in a variety of critical ways, with many serving as
their States' Emergency Alert Service (EAS) hub for weather and AMBER
alerts.
Providing Civic Leadership
Public television strengthens the American democracy by providing
citizens with access to the history, culture and civic affairs of their
communities, their States and their country. Local public television
stations often serve as the State-level ``C-SPAN'' covering State
government actions. Local stations also provide more public affairs
programming, local history, arts and culture, candidate debates,
agricultural news, and citizenship information of all kinds than anyone
else. What truly sets public television stations apart is that stations
treat their viewers as citizens rather than as consumers.
Public Broadcasting is a Smart Investment
All of this public service is made possible by the Federal funding
to CPB that amounts to about $1.35 per year, per American. This Federal
investment sustains the public service missions of public television,
which are distinct from the mission of commercial broadcasting and will
not be funded by private sources, as the Government Accountability
Office concluded in a 2007 study commissioned by the Congress.
The need for Federal investment is particularly acute in small-town
and rural America, where less population density, a lack of corporate
and philanthropic support, and challenging topography make the
economics of local television and public service more challenging. As a
result, public broadcasters can be the only local broadcaster serving
rural communities--and only with the help of the Federal investment.
For all stations, Federal funding is the ``lifeblood'' of public
broadcasting, providing indispensable seed money to stations to build
additional support from State legislatures, foundations, corporations,
and ``viewers like you.''
For every dollar in Federal funding, local stations raise six
dollars in non-Federal funding, creating a strong public-private
partnership providing a valuable return on investment and supporting
approximately 20,000 jobs across America.
And yet this critical funding has remained flat for almost a
decade, forcing stations to make difficult programming, staffing and
service decisions as operational costs rose with inflation, while CPB
funding did not. Despite this severe financial constraint, local public
television stations have continued their deep commitments to the
communities they serve. If CPB funding had kept up with the rate of
inflation over this time period, CPB would be funded at more than
$500,000,000 annually.
In recognition of the fiscal austerity required of all Federal
programs over the last several years, public television has never asked
for an increase in CPB funding during this time. While public
television recognizes continued budget constraints, the pressure on
local public television stations after almost a decade of level funding
necessitates the request of an increase of at least $10 million, an
important first step toward the eventual restoration of inflation-
adjusted funding.
This request is both prudent and necessary for the continued health
of local stations and the public broadcasting system as a whole--and
for long-delayed enhancements of the essential education, public safety
and civic leadership services described above.
Two-Year Advance Funding
Two-year advance funding is essential to the mission of public
broadcasting. This longstanding practice, 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 and accompanying educational materials--all of which
contribute to extraordinary levels of public service and public trust.
For the fifteenth consecutive year, the American people have ranked PBS
as one of the most trusted national institutions.
Local stations 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 the seed money
for fundraising efforts at every local station, no matter its size.
Advance funding also benefits the partnership between States and
stations since many States operate on 2-year budget cycles.
Finally, the 2-year advance funding mechanism gives stations and
producers, both local and national, the critical lead time needed to
raise the additional funds necessary to sustain effective partnerships
with local community organizations and engage them around high-quality
programs. Producers like Ken Burns spend years developing programs like
The Vietnam War, and future programs such as a 16-hour history of
country music. It would be impossible to produce this in-depth
programming and the curriculum-aligned educational materials that
accompany it without the 2-year advance funding.
public television interconnection: $20 million
The public television interconnection system is the infrastructure
that connects PBS and national, regional and independent producers to
local public television stations around the country. The
interconnection system is essential to bringing public television's
educational, cultural and civic programming to every American
household, no matter how rural or remote. Without interconnection,
there is no nation-wide public media service. The interconnection
system is also critical for public safety, providing key redundancy for
the communication of presidential alerts and warnings, and ensuring
that cellular customers can receive geo-targeted emergency alerts and
warnings.
Congress has always provided Federal funding for periodic
improvements of the interconnection system. In fiscal year 2018,
Congress moved to fund interconnection for public broadcasting on an
annual, rather than decennial, basis to enable dynamic, incremental
upgrades in accord with increasingly rapid advances in technology.
Public television seeks level funding of $20 million for
interconnection in fiscal year 2019.
ready to learn: $30 million (department of education)
The Ready To Learn (RTL) competitive grant program, reauthorized in
the Every Student Succeeds Act, uses the power of public television's
on-air, online, mobile, and on-the-ground educational content to build
the literacy and STEM skills of children between the ages of two and
eight, especially those from low-income families.
Through their RTL grant, CPB and PBS are delivering evidence-based,
innovative, high-quality transmedia content to improve the math and
literacy skills of high-need children. CPB and PBS, in partnership with
local stations, have been able to ensure that the kids and families
that are most in need have access to these groundbreaking and proven
effective educational resources.
The additional funds will continue to help close a shortfall
created when the Department of Education awarded grantees amounts that
fully funded their submitted project budgets but exceeded annual
appropriations levels, compromising grantees' abilities to execute on
activities and fulfill the congressional intent of the program.
Results
RTL is rigorously tested and evaluated to assess its impact on
children's learning and to ensure that the program continues to offer
children the tools they need to succeed in school. Highlights of recent
studies show that:
--use of PBS KIDS content and games by low-income parents and their
preschool children improves math learning and helps prepare
children for entry into kindergarten;
--use of RTL content has been associated with a 29 percent
improvement in reading ability in children grades K-2; and
--parents who used RTL math resources in the home became considerably
more involved in supporting their children's learning outcomes.
In combination, RTL games, activities and videos provide early
learners with the critical math and literacy skills needed to succeed
in school.
An Excellent Investment
In addition to being research-based and teacher tested, RTL also
provides excellent value for our Federal dollars. In the last 5-year
grant round, public broadcasting leveraged an additional $50 million in
non-Federal funding to augment the $73 million investment by the
Department of Education for content production. RTL exemplifies how the
public-private partnership that is public broadcasting can change lives
for the better.
conclusion
Americans across the political spectrum rely on public broadcasting
on television, on the radio, online, and in the classroom--because we
provide essential local education, public safety, and informed
citizenry services that are not available anywhere else. And none of
this would be possible without the Federal investment in public
broadcasting. A 2007 GAO report concluded that CPB's federally
appropriated Community Service Grants to public television stations are
an irreplaceable source of revenue for public broadcasting, and a 2012
study conducted by an independent third party for CPB at Congress's
request came to the same conclusion.
Federal funding is the great equalizer that ensures that the best
of public broadcasting is available in both urban centers of our great
cities and in Native American communities in America's heartland.
Federal funding for CPB is what ensures that young children in
Appalachia have the same access to the unparalleled PBS KIDS content as
their counterparts in Los Angeles. And Federal funding is what ensures
that all households, regardless of their ability to pay for cable have
access to local programming and the best of NOVA, Masterpiece,
NewsHour, Great Performances, and so, so much more.
Public broadcasters are the only broadcasters that reach nearly 99
percent of U.S. households, and it is CPB funding that makes this
possible.
For all of these reasons we request that Congress continue its
commitment to the highly successful, hugely popular public-private
partnership that is public broadcasting by providing at least $455
million in fiscal year 2021 for CPB, an incremental increase for the
first time in almost a decade, in addition to $20 million in fiscal
year 2019 for the Public Television Interconnection system and $30
million in fiscal year 2019 for the Ready To Learn Program.
______

Prepared Statement of the Corporation for Public Broadcasting
Chairman Blunt, Ranking Member Murray and distinguished members of
the subcommittee, thank you for allowing me to submit this testimony on
behalf of America's public media service--public television and public
radio--on-air, online and in the community. The Corporation for Public
Broadcasting (CPB) requests funding of $455 million for fiscal year
2021, $20 million in fiscal year 2019 for the replacement of the public
broadcasting interconnection system and $30 million for the Department
of Education's Ready To Learn program.
Fifty years after passage of the Public Broadcasting Act, this
uniquely American public-private partnership continues to keep its
promise--to provide high-quality, trusted content that educates,
inspires, informs and engages in ways that benefit our civil society.
Through the nearly 1,500 locally owned and operated public radio and
television stations across the country, public media reaches 99 percent
of the American people from big cities to small towns and rural
communities. At approximately $1.35 per citizen per year, it is one of
America's best infrastructure investments--paying huge dividends in
education, public safety and civic leadership for millions of Americans
and their families.
The Federal investment in public media enables universal access and
is indispensable to sustaining the operations and public service
mission of local public broadcasting stations. CPB serves as the
steward of the Federal appropriation, ensuring that 95 cents of every
dollar it receives goes to support local stations and the programs and
services they offer to their communities; no more than five cents of
every dollar goes to the administration of funding programs and
overhead.
Education.--From early childhood through adult learning--is the
heart of our mission. Through public television stations' broadcast of
the PBS 24/7 Kids Channel, 95 percent of all kids age two to eight
receive educational content and services that are proven to prepare
them for school, especially low-income and underserved children who do
not attend or cannot afford pre-school. An excellent example of how
public media brings together high-quality educational content with on-
the-ground work in local communities is CPB's work with the Department
of Education's Ready To Learn program. In addition to creating content
for broadcast, Web and mobile platforms, local stations work with
community partners to extend our high-quality children's content
through engagement with Head Start centers, daycare facilities, local
health centers, faith-based organizations and others. No other media
organization has both national reach coupled with local deployment of
resources specifically charged with serving underserved, low-income and
rural communities. In 2015, Congress reaffirmed its strong bipartisan
support of Ready To Learn, furthering public media stations' and
producers' work in connecting STEM and literacy learning experiences
for children across multiple platforms and outlets.
Our work does not end with early learning. Through CPB's ``American
Graduate'' initiative, public media is addressing the crisis of one
million young people failing to graduate from high school every year.
Since 2011, more than 125 public media stations in 49 States have
worked with 1,800 partners to raise awareness, attract mentors for
young people and create local solutions for long-term success. Public
media, with its unique position as a trusted resource and important
partner in local communities, provides an important service helping
youth stay on a path to graduation and post-graduation, job
opportunities.
This year, American Graduate is addressing the Nation's workforce
skills gap. Through CPB support, local stations will partner with
businesses, education and workforce related organizations to create
content about the state of the workforce, identify job opportunities
and skills required to meet local business and industry needs. In
addition, we are continuing to work with local stations on behalf of
veterans returning to civilian life who are seeking career and job
training opportunities. CPB funding makes it possible for public
television to operate the largest not-for-profit Graduate Equivalency
Diploma program in the country, serving hundreds of thousands of
second-chance learners and adult students.
CPB's investments are guided by our commitment to innovation,
diversity and engagement. As good stewards, we are always investing in
innovation so that stations can deliver public media programming over
multiple media platforms--free of charge and commercial free--available
to our audience where, when, and how they choose to access our content.
Our commitment to diversity includes geographic, socio-economic,
political, ethnic, and cultural--at all levels of public media. Our
stations, trusted in the community, also act as conveners, fostering
constructive engagement on issues of importance locally and nationally.
Over the past 4 years CPB, working with public television and radio
stations, launched Veteran's Coming Home, an initiative designed to
support veterans' re-entry into civilian life. Public media recognizes
the contribution and sacrifices of the men and women serving in our
Armed Forces through content such as ``Going to War,'' which delivers
an intimate look at a soldier's combat experience and its aftermath
told through the stories of veterans of various conflicts, as well as
StoryCorps' Military Voices initiative and the annual Memorial Day and
Fourth of July concerts broadcast and streamed by PBS to millions.
Public broadcasters have retained the trust of the American people
for accurate, balanced, objective, fair, transparent, and thoughtful
coverage of news and public affairs--the essential resources for an
informed citizenry and the foundation upon which a well-functioning
democracy depends. In this disruptive and fragmented media environment,
public media's commitment to serving as a trusted source of
information--providing more than a sound bite when it comes to news and
fact-based information, as well as a civil place for the exchange of
ideas locally and nationally--is more important and relevant to
people's lives than ever.
CPB seeks to increase the capacity of public radio and television
stations to create high-quality original and enterprise journalism by
supporting collaborations that will establish reporting partnerships
between multiple station newsrooms in a State or region. The objectives
of these collaborations are to leverage public media's network of
stations to provide a stronger local news service to the public media
audience and to increase the flow of locally-produced content of
general interest to the signature national programs.
When it comes to public safety, locally owned and operated public
media stations are essential partners with public safety officials,
schools, businesses and community leaders, providing real-time support
in times of crisis. Public media stations broadcast crucial warnings
about severe weather, send out AMBER alerts, and through data-casting
capabilities, they work with first responders to deploy public media's
infrastructure in a variety of life-saving ways. The Florida Public
Radio Emergency Network (FPREN), a collaboration of 13 public radio
stations, provides statewide multimedia updates during hurricanes or
other emergencies to stations across the State, their websites, social
media channels and on mobile devices via the Florida Storms app. In
Houston, Texas, Houston Public Media, through its partnership with the
U.S. Department of Homeland Security, proved it can deliver secure,
encrypted IP data and communications to targeted, multiple emergency
responders while continuing its television broadcast service.
interconnection infrastructure
Interconnection is the backbone of the public media system,
delivering content every day from public media producers to public
television and radio stations in communities throughout the country.
Without it, there is no nationwide public media service. Recognizing
its importance, Congress has always funded public media's
interconnection system; providing a separate, periodic appropriation
for interconnection since fiscal year 1991. CPB appreciates Congress'
support of moving the interconnection infrastructure to an annual, on-
going funding cycle. This smaller, annual appropriation allows CPB the
agility to contract for incremental upgrades as innovations in
technology are realized and costs come down. These efficiencies and
technological improvements will advance the public media system and
benefit the American people.
conclusion
CPB's fiscal year 2021 request of $455 million and fiscal year 2019
requests of $20 and $30 million for interconnection and Ready To Learn,
respectively, provides crucial support to stations--particularly those
serving rural, minority and other underserved communities--and enables
innovation and technological advances. Federal funding remains an
irreplaceable part of the fabric of the national-local, public-private
partnership that is the foundation of public media's success. With your
support, CPB will continue to serve as a trusted steward of the Federal
appropriation; by investing these taxpayer dollars in ways that
strengthen the health of our civil society--helping to educate our
youth, making Americans more aware of our Nation's challenges and
opportunities, connecting to our history and engaging our citizens in
their communities. Mr. Chairman and members of the subcommittee, thank
you for allowing me to submit this testimony, and I appreciate your
consideration of our funding request.

[This statement was submitted by Patricia de Stacy Harrison,
President and CEO, Corporation for Public Broadcasting.]
______

Prepared Statement of the Railroad Retirement Board
Mr. Chairman and Members of the Committee:
The President's fiscal year 2019 proposed budget for the Railroad
Retirement Board (RRB) is $115.225 million. The RRB is requesting
$131.725 million. Appropriations for RRB operations are derived from
the railroad retirement trust fund system and not the general fund.
Appropriations language authorizes the RRB to access available funding
from the trust funds to administer comprehensive retirement/survivor
and unemployment/sickness insurance benefit programs for railroad
workers and their families under the Railroad Retirement (RRA) and
Railroad Unemployment Insurance (RUIA) Acts. The RRB also administers
certain benefit payments and Medicare coverage for railroad workers
under the Social Security Act.
Last year, the RRB paid $12.6 billion, net of recoveries and
offsetting collections, in retirement/survivor benefits to about
548,000 beneficiaries, including $1.6 billion in benefits paid to about
116,000 beneficiaries on behalf of the Social Security Administration.
Further, the RRB paid $104.6 million in unemployment-sickness benefits
net of recoveries and offsetting collections to about 28,000 railroad
workers.
The railroad employers and employee contributions are held in trust
funds to pay railroad benefits and support RRB operations.
Appropriations enacted for the RRB's administrative budget require no
actual funds from the general fund. Enacted appropriations language
authorizes the RRB to access the funds available in the railroad
retirement trust fund system in order to finance operations. The
Association of American Railroads and the Rail Labor Division of the
Transportation Trades Department continue to support increased
appropriations to address the urgent information technology and
staffing needs of the agency.
president's proposed funding for agency administration
The RRB's risk of mission failure is increasing substantially due
to antiquated IT systems and insufficient staffing levels. The
President's proposed budget would provide $115.225 million for agency
operations, to include IT initiatives, and support 757 full-time
equivalents (FTEs). The RRB requests an additional $16.5 million above
the President's proposed $115.225 million for a total of $131.725
million to be derived from the railroad retirement trust fund system
(not the general fund). Of the additional $16.5 million, $11.7 million
would be used for continued IT investment initiatives and $4.8 for
increased staffing. The remainder of this testimony will focus on these
critical priorities with a few additional topics in conclusion.
critical priority: information technology (it)
We are grateful for the $10 million designated for IT Investment
Initiatives provided under Public Law 115-141, Consolidated
Appropriations Act, 2018. These additional funds will allow the RRB to
make significant progress on its top two mission critical IT
investments (Mainframe Applications Re-platform Services and Legacy
Systems Modernization Services), and to continue to work with GSA on
contracts necessary to implement the mandated Enterprise Infrastructure
Solutions.
For fiscal year 2019, the President's proposed budget provides
$115.225 million for normal agency operations and IT Modernization
initiatives. The RRB's IT systems were built 40 years ago and support
200 mission-critical applications. The RRB's obsolete IT hardware and
software systems are difficult to maintain and do not meet current
Federal Information Security Modernization Act (FISMA) mandates,
increasing the risk of a cybersecurity breach and mission failure. An
additional $11.7 million above the President's proposed amount of
$115.225 million, designated for IT initiatives will allow for
continued progress on the RRB's ongoing critical modernization
projects. Additional investment of $11.7 million in the RRB's IT
modernization efforts will facilitate compliance with cybersecurity and
privacy mandates; improve and expand our data analytical capabilities
to reduce the risk of fraud through stronger program integrity
measures; and ultimately create a more effective and efficient
organization capable of achieving the mission with fewer people.
critical priority: agency staffing
For fiscal year 2019, the President's proposed budget provides
$115.225 million for normal operating costs of which seventy percent is
for labor. From 1993 through 2017, the RRB has reduced staffing levels
by half. Additionally, 58 percent of our current workforce will be
eligible for retirement by fiscal year 2019. Under the President's
proposed budget the RRB could fund 757 FTEs, which is 93 less than the
minimum, 850 FTEs, needed to sustain mission critical operations.
Operating with less than 850 employees has and will continue to
significantly decrease available customer service and office hours in
the RRB's 53 field offices, resulting in unpredictable temporary office
closures. As a result, railroad beneficiaries will continue to
encounter significant delays in receiving assistance for benefits and
counseling. Further, the growing backlog in retirement, survivor, and
disability casework will continue to increase as a result of
insufficient staffing. This will have a direct impact on payment of
benefits. The $4.8 million above the President's proposed budget will
increase the staffing level to 850 FTEs that is necessary until
modernized technology can sustain organization performance at lower
staffing levels in the future.
legislative proposals
In connection with these workforce planning efforts, the
President's budget request includes a legislative proposal to enable
the RRB to utilize various hiring authorities available to other
Federal agencies. Section 7(b) (9) of the Railroad Retirement Act
contains language requiring that all employees of the RRB, except for
one assistant for each Board Member, must be hired under the
competitive civil service. We propose to eliminate this requirement,
thereby enabling the RRB to use various hiring authorities offered by
the Office of Personnel Management. Our budget request includes two
additional legislative proposals. The first is to amend the RRA and the
RUIA to include a felony charge for individuals committing fraud
against the agency. The second is to amend the Social Security Act to
provide access for the RRB to the National Directory of New Hires
(NDNH). Access to NDNH supports the RRB's program integrity efforts to
prevent improper payments.
financial status of the trust funds
Railroad Retirement Accounts.--The RRB continues to coordinate its
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 for the payment of benefits. 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, 2017, was approximately $26.5 billion, an increase of almost $1.35
billion from the previous year. Through January 1, 2018, the Trust had
transferred approximately $21.920 billion to the RRB for payment of
railroad retirement benefits.
The RRB's latest report required by the Railroad Retirement Act of
1974 and Railroad Retirement Solvency Act of 1983 was released in June
2017. The overall conclusion is, barring a sudden, unanticipated, large
decrease in railroad employment or substantial investment losses, the
railroad retirement system will experience no cash flow problems during
the next 25 years. The report recommended no change in the rate of tax
imposed on employers and employees. The tax adjustment mechanism will
automatically increase or decrease tax rates in response to changes in
fund balance. Even under a pessimistic employment assumption, this
mechanism is expected to prevent cash flow problems for at least 25
years.
Railroad Unemployment Insurance Account.--The RRB's latest annual
report required by Section 7105 of the Technical and Miscellaneous
Revenue Act of 1988 was issued in June 2017. The report indicated that
even as maximum daily benefit rates are projected to rise approximately
46 percent (from $72 to $105) from 2016 to 2027, experience-based
contribution rates are expected to keep the unemployment insurance
system solvent. 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.

[This statement was submitted by Vacant, Chairman, Walter A.
Barrows, Labor Member, and Steven J. Anthony, Management Member,
Railroad Retirement Board.]
______

Prepared Statement of the Inspector General, Railroad Retirement Board
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 2019 would provide
$8,437,000 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 2019, 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 four
domicile investigative offices located in Virginia, Florida, Texas, and
California. 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 OA 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 2019, 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 six broad areas of potential audit
coverage: financial accountability; Railroad Retirement Act and
Railroad Unemployment Insurance Act benefit program operations; RRB
contracts and contracting activities; Railroad Medicare program
operations; security, privacy, and information management; and Improper
Payments Elimination and Recovery Act of 2010 (IPERA) oversight.
OA must also accomplish the following mandated activities in fiscal
year 2019: audit RRB's financial statements pursuant to the
requirements of the Accountability of Tax Dollars Act of 2002; audit
RRB's compliance with IPERA; audit RRB's compliance with the Digital
Accountability and Transparency Act of 2014 (DATA Act); evaluate RRB's
risk in compliance with the Government Charge Card Abuse and Prevention
Act of 2012; identify performance and management challenges for fiscal
year 2019; conduct applicable semiannual reporting in accordance with
the Inspector General Act of 1978, as amended; and evaluate information
security pursuant to the Federal Information Security Management Act
(FISMA). Beginning in fiscal year 2018, OA began utilizing contract
services to conduct the annual FISMA evaluation.
During fiscal year 2019, OA will complete the audit of the RRB's
fiscal year 2018 financial statements and begin its audit of the
agency's fiscal year 2019 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. OA also conducts audits of
individual computer application systems, which are required to support
the annual FISMA evaluation. OA's work in this area is targeted toward
the identification and elimination of security deficiencies and system
vulnerabilities, including controls over sensitive personally
identifiable information.
The portion of OA resources dedicated to conducting mandated audits
continues to increase substantially. In fiscal year 2017, over 65
percent of direct audit time was spent completing mandated audits,
which increased by over 15 percent from the prior fiscal year; largely
attributable to the DATA Act mandated audit conducted in fiscal year
2017, another of which is required in fiscal year 2019. While mandated
work results in important audit findings and increased agency
oversight, it also limits other audits that can be undertaken without
an increase in resources. Increased resources will make it possible for
OA to provide additional oversight of RRB programs that represent
billions in taxpayer dollars, while still meeting the important
mandates of the Congress.
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 utilizes a strategic planning
process to focus on areas affecting program performance, the efficiency
and effectiveness of agency operations, and areas of potential waste,
fraud and abuse. OA also considers staff availability, current trends
in management, and Congressional and Presidential concerns.
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, civil
penalties, or administrative recoveries/actions.
OI initiates cases based on information from a variety of sources
including through RRB computer matching programs. OI also receives
allegations of fraud through the OIG Hotline; contacts with State,
local, and Federal agencies; and information developed through fraud
detection projects initiated by investigative staff. The OIG will
continue their commitment to proactively design projects aimed at
promoting economy, efficiency, and effectiveness in the RRB's program
and operations. In addition to identifying potential targets previously
undetected through the RRB's standard program integrity measures, OIG
will make the necessary recommendations to resolve identified program
weaknesses and prevent future occurrences.

OI INVESTIGATIVE RESULTS FOR FISCAL YEAR 2017
------------------------------------------------------------------------
Indictments/ Financial
Civil Judgments Informations Convictions Accomplishments
------------------------------------------------------------------------
11 29 39 \1\ $149,800,000
------------------------------------------------------------------------
\1\ The total amount of financial accomplishments reflect fraud amounts
related to programs administered exclusively by the RRB and fraud
amounts from other Federal programs such as Medicare or Social
Security that were included in investigative dispositions.

OI anticipates an ongoing caseload of approximately 275
investigations in fiscal year 2019. During fiscal year 2017, OI opened
213 new cases and closed 155. As of March 31, 2018, OI had 281 cases
open with an estimated fraud loss of more than $552 million. Disability
and Railroad Medicare fraud cases represent the largest portion of OI'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.
The OI continues to work joint cases with other Inspector General
offices and Federal law enforcement agencies that have responsibility
for healthcare fraud matters. Railroad Medicare fraud investigations
currently represent approximately 23 percent of OI's total caseload and
more than $334 million in potential fraud losses.\2\ OI's collaborative
joint investigative efforts ensure that RRB beneficiaries are protected
from sham medical practitioners, and that the Railroad Medicare
program's interests are safeguarded from fraudulent schemes.
---------------------------------------------------------------------------
\2\ This reflects potential fraud amounts related to the Railroad
Medicare program and other healthcare related programs, such as
Medicare, which have been identified during OI's joint investigative
work.
---------------------------------------------------------------------------
OI will also investigate retirement fraud which typically involves
the theft and fraudulent cashing of U.S. Treasury checks or the
withdrawal of electronically deposited RRB benefits. OI will continue
their use of the Department of Justice's Affirmative Civil Enforcement
program to recover trust fund monies from cases that do not meet U.S.
Attorney's guidelines for criminal prosecution.
During fiscal year 2019, 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. Findings will be conveyed to
agency management to alert officials of operational weaknesses that may
result in fraud against RRB programs. OI will also continue to work
with RRB program managers to ensure appropriate and timely referral of
fraud matters to the OIG.
conclusion
In fiscal year 2019, 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 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.

[This statement was submitted by Martin J. Dickman, Inspector
General, Railroad Retirement Board.]

NONDEPARTMENTAL WITNESSES

Prepared Statement of the Academy for Radiology & Biomedical
Imaging Research
Mr. Chairman and Members of the Subcommittee, my name is Dr. Hedvig
Hricak, and I am privileged to serve as the President of the Academy
for Radiology & Biomedical Imaging Research (``the Academy''), formerly
known as the Academy of Radiology Research. I am testifying today to
thank you for your dedicated support to medical imaging, and to
strongly support an increase in funding for the National Institutes of
Health to no less than $39.3 billion, with a proportionate increase for
the National Institute of Biomedical Imaging and Bioengineering
(NIBIB).
In my ``day job'' I am the Chair of the Department of Radiology at
Memorial Sloan-Kettering Cancer Center in New York City, New York. I
also hold a senior position within the Program of Molecular and
Pharmacology Therapeutics at the Sloan-Kettering Institute and am a
Professor of Radiology at the Weill Medical College of Cornell
University as well as a Professor at the Gerstner Sloan Kettering
Graduate School of Biomedical Sciences. I have helped develop
applications in ultrasound, MR, and CT for gynecological cancers as
well as MR and MR spectroscopy for prostate cancer. I continue to
investigate diagnostic methods for cancer detection, staging, and
management, including approaches for molecular imaging of cancer.
On behalf of the Academy, I would like to begin by thanking you for
your generous support for the National Institutes of Health in the
recently passed bipartisan fiscal year 2018 omnibus appropriations
bill. This money will contribute to the important work of improving our
biomedical research infrastructure while also ensuring that the United
States remains the leader in medical innovation and technology.
As this subcommittee knows well, funding for NIH is spread
throughout the country. Approximately 84 percent of the amount
appropriated is used for peer-reviewed intramural grants to researchers
at universities, hospitals, and institutes in all 50 States. Another 9
percent funds very high-end research and patient care on the NIH
campus. Only about 7 percent of funding is used for administrative
purposes, maximizing the return on the investment. Nowhere is the
return on investment more significant than in the growing field of
biomedical imaging.
Our requests of this Subcommittee are critically important to the
physical and economic health of the Nation, and I would like to state
them clearly here:
--Please fund the NIH at not less than $39.3 billion for fiscal year
2019.
--Please increase NIBIB funding by not less than a proportionate
amount.
Mr. Chairman, medical imaging plays a unique role in the healthcare
delivery process, both as an instrumental part of the medical delivery
and management ecosystem and as a catalyst for innovation and
technological advancement in service of patient care. Imaging performs
central and irreplaceable roles in early disease detection, diagnosis,
treatment planning and monitoring. Precise and personalized care and
treatment plans are often developed based on decisions made through
imaging analysis and review. The Subcommittee's investment in NIH and,
in NIBIB in particular, helps make this possible. NIBIB's imaging and
bioengineering research and development create the vital methodology
and tools utilized in so many areas of biomedical research by other
institutes, let alone in America's healthcare delivery system. Imaging
research is a significant component of the work of many institutes of
the NIH, including the National Cancer Institute, National Institute of
Diabetes, Digestive and Kidney Diseases, and the National Institute of
Neurological Disorders and Stroke, among others. NIBIB research itself
has led to an impressive number of patents. In a study covering the 14-
year period from 2000 to 2013, Battelle et al. found that for every
$100 million of research funding, NIBIB generated 25 patents and more
than $575 million in resulting economic activity and growth.
For nearly every patient--nearly every constituent--who receives a
cancer diagnosis, suffers a head injury, or experiences any of
thousands of other medical issues, or who cares for family members
experiencing such difficulties, the health benefits of imaging research
are profoundly felt. Few medical conditions do not already benefit from
any of the wide range of clinical imaging modalities, from x-rays to
MRI, CT, PET, fluoroscopy, angiography, and ultrasound. Furthermore,
scientific discoveries and technological innovations are rapidly
expanding the power of biomedical imaging to improve medical care. In
the area of cancer, for example, emerging techniques for molecular
imaging will play a key role in realizing the dream of molecularly
targeted treatment, as, unlike biopsies, they can give a picture of the
biological heterogeneity of cancer within and across all tumors in a
patient. Moreover, progress is accelerating in the use of computer
tools to analyze both anatomical and molecular images and identify
mathematically defined features, not perceptible to the human eye,
which can predict the presence of cancer, its genetic profile, and how
well it is likely to respond to specific treatments.
The Academy is involved in a broad effort to help maximize the
efficiency with which medical imaging is applied in research and
patient care. In 2015, we were privileged to work with the Office of
Science Technology Policy (OSTP) in the White House to help develop the
Interagency Working Group on Medical Imaging (IWGMI). The IWGMI was
formed to coordinate the Federal investment in medical imaging research
and develop a strategic plan for future development. Last year, the
Working Group published a roadmap focused on ``advancing high-value
imaging'' through four key objectives:
--Standardizing image acquisition and storage,
--Applying advanced computation and machine learning to medical
imaging,
--Accelerating the development and translation of new, high-value
imaging techniques,
--Promoting best practices in medical imaging.
The Academy is working closely with allies across academia,
government, and industry to develop steps to implement the Working
Group's roadmap. As part of this effort, the Academy has convened
leaders in biomedical imaging and bioengineering to work together to
develop a ``Diagnostic Cockpit'' that integrates advanced imaging and
other diagnostic tools to improve diagnosis and thereby enhance the
precision and efficiency of care delivery. These necessary investments
will be made possible by a consistent and robust investment in
biomedical imaging research. The sooner we invest, the sooner your
constituents benefit.
Mr. Chairman, innovation is what keeps America healthy--both
physically and economically--and the NIH is a major contributor to our
strength. Since its creation, NIBIB has proven itself to have a
significant impact on real people and the American economy.
Thank you again for the opportunity to present this testimony to
you on behalf of the Academy. The Academy welcomes the opportunity to
work with the Congress in helping to assure that the American people
benefit from their investment in research and have access to the best
technology to address their imaging needs.

[This statement was submitted by Hedvig Hricak, M.D., Ph.D.,
Academy for Radiology & Biomedical Imaging Research.]
______

Prepared Statement of the Academy of Nutrition and Dietetics
The Academy of Nutrition and Dietetics appreciates the opportunity
to submit outside witness testimony for the fiscal year 2019
appropriations bill. The Academy, which represents over 100,000
credentialed professionals throughout the Nation and is the world's
largest organization of food and nutrition professionals, is committed
to improving the Nation's health through healthy and safe food choices.
As Congress begins work on fiscal year 2019 appropriations, we urge you
to invest in Federal nutrition programs, which will provide an
investment that will help prevent costly healthcare expenses due to
chronic diseases.
administration for community living funding
The Academy supports the appropriation of $996.7 million for the
Title III Nutrition Programs of the Older Americans Act, which is a
$100 million increase from the fiscal year 2018 omnibus levels. These
nutrition services help millions of older adults receive the necessary
meals to help them stay healthy and decrease the risk for disability.
The Academy also supports allocating $19.8 million for Preventive
Health Services under the Older Americans Act. These services support
activities that educate older adults on the importance of healthy
lifestyles and promote healthy behaviors. We also support the
appropriation of $8 million from the Prevention and Public Health Fund
for Chronic Disease Self-Management Programs within the Administration
on Aging, which is a low-cost, evidence-based disease prevention model
that engages older Americans to be able to manage their diseases, which
improves their health statuses and reduces more costly care such as
hospital care and readmissions.
The Academy supports allocating $31.2 million for Alaska Natives
and Native American Nutrition and Supportive Services, the same as the
fiscal year 2017 enacted level. These funds will provide approximately
6.1 million meals and 760,000 rides for Alaska Natives and Native
American seniors to critical daily activities such as meal sites,
medical appointments, and grocery stores.
The Academy supports the appropriations of $12 million for Elder
Rights Support Activities. This will allow for the expansion of ACL's
Elder Justice/Adult Protective Services activities to help fulfill the
promise of the Elder Justice Act of 2009. Funding will support the
implementation of a nationwide Adult Protective Services data system,
and fund research and evaluation activities. This program also provides
funding for resource centers and activities that provide information,
training, and technical assistance on elder rights issues to the
national Aging Services Network.
centers for disease control and prevention funding
The Academy supports a funding level of $8.445 billion to the
Centers for Disease Control and Promotion. Investing in evidence-based
nutrition and public health programs is vital to our Nation's security,
and the Federal investment in public health has failed to keep pace
with inflation. Increasing CDC's budget is critical to ensuring that
the Nation's health is protected from both communicable and non-
communicable disease threats.
Chronic diseases, due in part to lifestyle choices, account for
seven out of 10 causes of death in the U.S. As of 2012, almost half of
adults had one or more chronic health conditions. We encourage funding
the Division of Nutrition, Physical Activity and Obesity at $92.420
million, which would allow the 18 remaining States and Washington D.C.
to receive enhanced Section 1305 funding, and would fund two additional
High Obesity sites. This funding level includes $8 million for
breastfeeding support efforts, and $4 million for Early Child Care
initiatives.
national institutes of health funding
The Academy supports allocating $2.165 billion to the National
Institute of Diabetes and Digestive and Kidney Diseases. NIDDK supports
discovery, clinical and translational research, as well as targeted
training, aimed at understanding the impact of nutrition on diabetes,
kidney and digestive diseases. The requested funding increases show a
commitment to investing in nutrition research to prevent chronic
diseases, and we applaud this commitment. NIDDK also is leading the
Nutrition Research Task Force, and the Academy applauds this continued
partnership.
______

Prepared Statement of the Ad Hoc Group for Medical Research
The Ad Hoc Group for Medical Research is a coalition of more than
200 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
strengthening the Federal investment in biomedical, behavioral, social,
and population-based research conducted and supported by the National
Institutes of Health (NIH).
The Ad Hoc Group is deeply grateful to the Subcommittee for its
long-standing and bipartisan leadership in support of NIH, as
demonstrated by the consecutive above-inflation increases for NIH in
the final fiscal year 2017 and 2018 spending bills, and by the
Subcommittee's tireless efforts to continue this budget trajectory with
the historic $3 billion increase for NIH in fiscal year 2018.
In fiscal year 2019, the Ad Hoc Group recommends at least $39.3
billion for the NIH, including funds provided to the agency through the
21st Century Cures Act for targeted initiatives. This funding level,
supported by more than 225 stakeholder organizations, would continue
the momentum of recent years by enabling meaningful base budget growth
above inflation to expand NIH's capacity to support promising science
in all disciplines, and also would ensure that the Innovation Account
supplements the agency's base budget, as intended, through dedicated
funding for specific programs. Given the abundance of scientific
opportunity, this recommendation represents a minimum investment to
sustain progress that only would be amplified through an even more
robust commitment.
We believe that science and innovation are essential if we are to
continue to meet current and emerging health challenges, improve our
Nation's physical and fiscal health, and sustain our leadership in
medical research. As the Subcommittee has recognized, to remain a
global leader in accelerating the development of life-changing cures,
pioneering treatments, and innovative prevention strategies, it is
essential that Congress sustain robust increases in the NIH budget.
NIH: A 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 translate this knowledge into the next
generation of diagnostics, therapeutics, and other clinical
innovations. More than 80 percent of the NIH's budget is competitively
awarded through more than 50,000 research and training grants to more
than 300,000 researchers at over 2,500 universities and research
institutions located in every State and D.C. The Federal Government has
an essential and irreplaceable role in supporting medical research. No
other public, corporate or charitable entity is willing or able to
provide the broad and sustained funding for the cutting edge basic
research necessary to yield new innovations and technologies of the
future.
NIH has supported biomedical research to enhance health, lengthen
life, and reduce illness and disability for more than 100 years. The
following are a few of the many examples of how NIH research has
contributed to improvements in the Nation's health.
--NIH-supported researchers continue to work toward strategies to
better prevent, identify, and treat pain and substance use
disorders. These efforts build on past NIH-supported work, such
as the development of a naloxone nasal spray, the first easy-
to-use, non-injectable version of a life-saving treatment for
opioid or heroin overdoses, and development of the drug
buprenorphine, the first drug for opioid addiction that could
be prescribed in a doctor's office instead of requiring daily
visits to a clinic.
--The death rate for all cancers combined has been declining since
the early 1990s for adults and since the 1970s for children.
Overall cancer death rates have dropped by about 1.5 percent
per year, or nearly 15 percent in total from 2003--2012.
Research in cancer immunotherapy has led to the development of
several new methods of treating cancer by restoring or
enhancing the immune system's ability to fight the disease.
--Deaths from heart disease fell 67.5 percent from 1969 to 2013,
through research advances supported in large part by NIH. The
Framingham Heart Study and other NIH-supported research have
identified risk factors for heart disease, such as cholesterol,
smoking, and high blood pressure. This work has led to new
strategies for preventing heart disease.
--Since 1950, the stroke mortality rate has decreased by 79 percent,
due in part to NIH-funded research on treatments and
prevention.
--Despite the increasing prevalence of diabetes in the U.S., from
1969 to 2013 the death rate for adults with diabetes declined
by 16.5 percent. Between 1990 and 2010, the rates of major
diabetes complications dropped dramatically, particularly for
heart attacks, which declined by 68 percent, and stroke, which
declined by 53 percent. These improvements are due largely to
clinical trials supported by NIH.
--Today, treatments can suppress HIV to undetectable levels, and a
20-year-old HIV-positive adult living in the United States who
receives these treatments is expected to live into his or her
early 70s, nearly as long as someone without HIV.
--In 1960, 26 of every 1,000 babies born in the United States died
before their first birthday. By 2013, that rate had fallen to
under 6 per 1,000 babies, thanks in large part to NIH research
on reducing preterm births, neonatal mortality, and other
complications.
--The haemophilus influenza type B (Hib) vaccine has reduced the
cases of Hib, once the leading cause of bacterial meningitis in
children, by more than 99 percent.
--In the mid-1970s, burns that covered even 25 percent of the body
were almost always fatal. Today, people with burns covering 90
percent of their bodies can survive. NIH-funded research on
wound cleaning, skin replacement, infection control, and other
topics has greatly improved the chances of surviving
catastrophic burns and traumatic injuries.
For patients and their families, NIH is the ``National Institutes
of Hope.''
Sustaining Scientific Momentum Requires Sustained Funding. The
leadership and staff at NIH and its Institutes and Centers have engaged
the broader community to identify emerging research opportunities and
urgent health needs and to prioritize precious Federal dollars to areas
demonstrating the greatest promise. Sustained robust increases in NIH
funding are needed if we are to continue to take full advantage of
these opportunities to accelerate the development of pioneering
treatments and innovative prevention strategies.
One long-lasting potential impact of investments in NIH is on the
next generation of scientists. The Federal commitment to NIH sends a
strong signal to these aspiring researchers about the stability of a
long-term career in medical research. Of particular interest is
maintaining a cadre of clinician-scientists to facilitate translation
of basic research to human medicine. Additional funding is needed if we
are to strengthen our Nation's research capacity, ensure a biomedical
research workforce that reflects the racial and gender diversity of our
citizenry, and inspire a passion for science in current and future
generations of researchers.
NIH is Critical to U.S. Competitiveness. Our country still has the
most robust medical research capacity in the world; however, other
countries have significantly increased their investment in biomedical
science, which leaves us vulnerable to the risk that talented medical
researchers from all over the world may return to better opportunities
in their home countries. We cannot afford to lose that intellectual
capacity, much less the jobs and industries fueled by medical research.
The U.S. has been the global leader in medical research because of
Congress's bipartisan recognition of NIH's critical role. To continue
our dominance, we must reaffirm this commitment to provide NIH the
funds needed to maintain our competitive edge.
NIH: An Answer to Challenging Times. The research supported by NIH
drives local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries. Multiple studies
have found that NIH investments catalyze increases in private sector
investment. For example, a $1 increase in public basic research
stimulates an additional $8.38 investment from the private sector after
8 years. Similarly, a $1 increase in public clinical research
stimulates an additional $2.35 investment from the private sector after
3 years. Additionally, according to a report released by United for
Medical Research, in 2017, NIH-funded research supported an estimated
380,000 jobs all across the United States and generated more than $65
billion in new economic activity.
The Ad Hoc Group's members recognize the tremendous challenges
facing our Nation and acknowledge the difficult decisions that must be
made to restore our country's fiscal health. Strengthening our
commitment to medical research, through robust funding of the NIH, is a
critical element in ensuring the health and well-being of the American
people and our economy.
Therefore, for fiscal year 2019, the Ad Hoc Group for Medical
Research recommends that NIH receive at least a $39.3 billion to
continue the momentum in our Nation's investment in medical research.
______

Prepared Statement of The Adoption Exchange
The Adoption Exchange offers the following testimony requesting
increased funds for the following five programs under the supervision
of the Administration for Children and Families (ACF): Child Welfare
Services (CWS), Promoting Safe and Stable Families (PSSF), the Adoption
and Kinship Incentives Fund, and the Adoption Opportunities Act.
In February, Congress passed the Family First Prevention Services
Act (P.L. 115-123). The legislation has potential to expand services
that can prevent the placement of children into foster care. It
challenges States to reduce the number of children and youth in
congregate placements. It will be a challenge to States to build the
capacity and access to services (mental health, substance use, and in-
home services) and to build the infrastructure of services and
providers.
The challenge is against a backdrop of ever increasing foster care
numbers driven by the opioid epidemic in parts of the country. Since
2012 the number of children in foster care has increased by 10 percent
to 437,000 in 2016. The Adoption Exchange believes it is critical for
Congress to fully fund six programs to both build capacity to
effectively implement the Family First Act and help address the crisis
many communities are facing as foster care placement demands explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care, but does not fund services to
prevent child abuse and neglect. Child welfare strategy must
significantly increase funding for child abuse prevention.
The Adoption Exchange calls on Congress to fully fund Child Welfare
Services from $269 million to $325 million and Promoting Safe and
Stable Families from $99 million in discretionary funding to $200
million; increase funding to the Adoption Opportunities Act to $60
million; fully fund the Adoption and Kinship Incentives Fund at $75
million.
impact of opioids on child abuse and neglect and foster care
Earlier this year HHS through the Secretary of Planning and
Evaluation conducted an analysis of child welfare data and supplemented
that work with field level research. Some of the key findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate, and a 10
percent increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While in past, drug epidemics family and communities could fill
some of the gaps, today agencies report that family members
across generations may be experiencing substance use problems
forcing greater reliance on State custody and non-relative
care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history, and addressing
substance abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children longer in care which keeps existing homes
full and unable to accept new placements.
family first act
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community- based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post- discharge services for children
leaving institutional care. Child welfare agencies need to find and
support more family-based foster care homes. These four funds can help
States develop evidence-based services that will meet the laws ``well-
supported,'' ``supported,'' and ``promising'' standards and can assist
the coordination of community based behavioral health and human
services.
child welfare services, title iv-b part 1
We ask for $325 million for Child Welfare Services, the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet these evidence standards.
promoting safe and stable families, title iv-b part 2
We also asking for full funding of $200 million for Promoting Safe
and Stable Families. Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
the adoption opportunities act
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services,
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently, to promote adoptions of
older youth in foster care, and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post adoption services to families.
the adoption and kinship incentive fund
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014, it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. Your 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018,
this September, there will be $25 million remaining. That will likely
fall short to fully fund the incentives. And we again ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services. These
funds can be used by States to build both the evidence-based adoption
services including post-adoption counseling and services that can
prevent and reduce adoption disruption. The Adoption Exchange thanks
you for this consideration and stands ready to respond to your
questions and concerns.

[This statement was submitted by Lauren Arnold, CEO, The Adoption
Exchange.]
______

Prepared Statement of Advance CTE
This testimony was prepared for the Senate Subcommittee on Labor,
Health and Human Services, Education and Related Agencies regarding the
fiscal year 2019 Federal Investment in the Perkins Basic State Grant
Administered by the U.S. Department of Education
Advance CTE is the longest-standing national non-profit that
represents State Directors and State leaders responsible for secondary,
postsecondary and adult Career Technical Education (CTE) across all 50
States and U.S. territories. Advance CTE works to support an innovative
CTE system that prepares individuals to succeed in education and their
careers and poises the United States to flourish in a global, dynamic
economy through leadership, advocacy and partnerships. On behalf of our
members, Advance CTE is pleased to submit written testimony about the
Federal investment in the Perkins Basic State Grant (authorized under
Title I of the Carl D. Perkins Career and Technical Education Act
(Perkins)) for fiscal year 2019 (fiscal year 2019) that is administered
through the U.S. Department of Education. In order to meet the
increased demand for CTE and fully support the CTE system and the 11.8
million learners it serves across the Nation, we request that Congress
double the Federal investment in the Perkins Basic State Grant to $2.4
billion.\1\
---------------------------------------------------------------------------
\1\ Refers to Program Year 2015-16. Source: https://perkins.ed.gov/
pims/DataExplorer/CTEParticipant.
---------------------------------------------------------------------------
Now is the right time to invest in CTE.
In fiscal year 2018 (fiscal year 2018), the Perkins Basic State
Grant was increased by $75 million to nearly $1.2 billion. This is a
very welcome step in the right direction and reflects Congress'
understanding of the critical role CTE plays in helping our Nation's
learners and employers close the skills gap. However, this was the
first significant increase in CTE funding in nearly 30 years and there
is a long way to go to restore all previous cuts to the Federal
investment in CTE and meet today's demand for CTE. Furthermore, this
increase still left six States and two territories behind: Iowa,
Louisiana, Mississippi, Nebraska, Oklahoma, West Virginia, Puerto Rico
and the Virgin Islands will receive the same size Perkins Basic State
Grant for fiscal year 2018 as they did in fiscal year 2017.\2\ This is
in part due to the fact that the Federal investment in Perkins has not
kept pace with increasing demand in a growing economy. In fact, over
600,000 additional secondary learners were enrolled in CTE in 2015-2016
compared to 2011-2012 and a 2017 survey of school districts offering
CTE found that the top barrier to offering CTE in high school was
``lack of funding or high cost of programs''.\3,4\
---------------------------------------------------------------------------
\2\ Refers to 2017 and 2018 State Allocations. Source: https://
cte.ed.gov/grants/state-allocations.
\3\ Refers to Program Years 2011-2012 and 2015-16. Source: https://
perkins.ed.gov/pims/DataExplorer/CTEParticipant.
\4\ https://nces.ed.gov/pubs2018/2018028.pdf.
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As the chart below demonstrates, between fiscal year 2004 and
fiscal year 2017, Perkins funding declined by over $77 million dollars,
the equivalent of $427 million inflation- adjusted dollars (i.e., 28
percent in inflation-adjusted dollars). Taking a longer view, before
fiscal year 2018, Perkins had been relatively flat funded since 1991,
and without being tied to inflation, the program's buying power had
fallen by approximately $933 million in inflation-adjusted dollars
since 1991--a 45 percent reduction over a quarter century.\5\ This
trend must be reversed if we are to make progress toward closing the
skills gap.
---------------------------------------------------------------------------
\5\ Calculated using the Bureau of Labor Statistics' CPI Inflation
Calculator. Source: https://data.bls.gov/cgi-bin/cpicalc.pl.

An Investment in CTE is an Investment in America's Economy.
By doubling the investment in the Perkins Basic State Grant, more
resources would be directed to high-quality CTE programs that can
strengthen the talent pipeline by supporting a workforce that is ready
to meet the demands of tomorrow's jobs. More than half of all jobs (53
percent) in the U.S. today are middle-skill jobs--they require
education beyond high school like certificates, associates degrees or
some college. Yet only 43 percent of workers are trained to the middle-
skill level, leading to a skills gap that leaves employers searching
for qualified talent and many workers without job opportunities.\6\ In
fact, in 2016, 46 percent of employers cited difficulty finding skilled
talent, and six out of the ten hardest-to-fill positions are in
technical fields or require a CTE background.\7\ Furthermore,
businesses forego 11 percent of earnings and 9 percent of revenue
because they can't find qualified workers.\8\ High-quality CTE programs
directly connect learners in high school and postsecondary with
employers, providing a clear pipeline of talent and unique
opportunities for students to engage in internships, apprenticeships
and other meaningful on-the-job experiences.\9\ By doubling the Federal
investment in Perkins, these opportunities can be continued and
expanded to serve more learners.
---------------------------------------------------------------------------
\6\ http://www.nationalskillscoalition.org/resources/publications/
2017-middle-skills-fact-sheets/file/United-States-MiddleSkills.pdf.
\7\ http://www.manpowergroup.com/talent-shortage-2016.
\8\ http://aedfoundation.org/wp-content/uploads/2017/01/AEDF-
CollWMStudyII-Part1.pdf.
\9\ For examples of high-quality CTE programs, see https://
careertech.org/excellence-action-award.
---------------------------------------------------------------------------
The Investment in CTE is Worth It.
Learners enrolled in CTE are increasingly high performers, with
higher than average graduation rates and impressive postsecondary
enrollment rates. The graduation rate for CTE concentrators is about 93
percent, approximately 10 percentage points higher than the national
average.\10\ For example, in Massachusetts, students who were admitted
to a vocational/technical high school had a nearly 100 percent
probability of graduating on time compared to a rate of about 60
percent for students who just missed the admission cutoff and attended
traditional high schools.\11\
---------------------------------------------------------------------------
\10\ U.S. Department of Education, Perkins Data Explorer. https://
perkins.ed.gov/pims/DataExplorer/Performance.
\11\ http://www.doe.mass.edu/research/reports/2014/03EdLines-
CTEimpact.pdf.
---------------------------------------------------------------------------
Not only are students who concentrate in CTE more likely to
graduate from high school, they find success afterward as well. In
Missouri, 96 percent of students who concentrated in a CTE program were
enrolled in college, enlisted in the military or working within 6
months of graduation.\12\ And a recent study in Arkansas found that,
``Students with greater exposure to CTE are more likely to graduate
from high school, enroll in a 2-year college, be employed, and earn
higher wages.'' \13\ It is also important to highlight that CTE
learners are not the only ones accruing the many benefits of CTE--
taxpayers are also seeing a high return on investment (ROI). For
example, in Washington, secondary CTE sees a ROI of $7 for every one
dollar of investment.\14\ In fact, the estimated impact of achieving a
90 percent graduation rate nationwide (calculated for the Class of
2015) is a $5.7 billion increase in economic growth and $664 million in
additional Federal, State and local taxes.\15\ With double the Federal
investment in CTE, these types of outcomes and more would be possible
across the country.
---------------------------------------------------------------------------
\12\ U.S. Department of Education, Perkins Data Explorer. https://
perkins.ed.gov/pims/DataExplorer/Performance.
\13\ https://edexcellence.net/publications/career-and-technical-
education-in-high-school-does-it-improve-student-outcomes.
\14\ http://www.wtb.wa.gov/CTE2018Dashboard.asp.
\15\ Refers to the Graduating Class of 2015: http://
graduationeffect.org/US-GradEffect-Infographic.pdf.
---------------------------------------------------------------------------
CTE Parents and Students See the Value and Promise of CTE.
With the many opportunities and benefits that CTE offers, it is no
surprise that CTE parents and students are highly satisfied with their
CTE experience.\16\ Research commissioned by Advance CTE in 2017 found
that:
---------------------------------------------------------------------------
\16\ https://careertech.org/recruitmentstrategies.
---------------------------------------------------------------------------
--Students in CTE programs and their parents are three times as
likely to report they are ``very satisfied'' with their and
their children's ability to learn real-world skills as part of
their current education compared to parents and students not
involved in CTE.
--80 percent of parents of students in CTE are satisfied with their
ability to participate in internships, compared to only 30
percent of prospective parents.
--91 percent of parents of students in CTE believe their child is
getting a leg up on their career, compared to only 44 percent
of prospective parents.
--86 percent of parents and students want real-world, hands-on
opportunities as part of their high school experience.\17\
---------------------------------------------------------------------------
\17\ https://cte.careertech.org/sites/default/files/
Value%26Promise_FastFacts.pdf.
---------------------------------------------------------------------------
If we are serious about providing learners with the real-world
skills, hands-on opportunities and real options for college and
rewarding careers that come with CTE and making progress toward closing
the skills gap, then there is no better time than now to double the
Federal investment in the Perkins Basic State Grant for fiscal year
2019.
Please feel free to contact Kimberly A. Green
([email protected]), Advance CTE's Executive Director, should you
have any questions about our written testimony.

[This statement was submitted by Kimberly A. Green, Executive
Director,
Advance CTE.]
______

Prepared Statement of the AIDS Alliance for Women, Infants, Children,
Youth & Families
Dear Chairman Blunt and Members of the Subcommittee: AIDS Alliance
for Women, Infants, Children, Youth & Families was founded in 1994 to
help respond to the unique concerns of HIV-positive and at-risk women,
infants, children, youth, and families. AIDS Alliance conducts policy
research, education, and advocacy on a broad range of HIV/AIDS
prevention, care, and research issues. We are pleased to offer written
testimony for the record as part of the fiscal year 2019 Labor, Health
and Human Services, Education, and Related Agencies appropriations
measure.
ryan white part d funding request
Sufficient funding of Ryan White Part D, the program funded solely
to provide family-centered primary medical care and support services
for women, infants, children, and youth with HIV/AIDS has successfully
identified, linked, and retained these vulnerable populations in much
needed care and treatment, resulting in optimum health outcomes. We
thank the Subcommittee for its continuous support of the Ryan White
Program and respectfully request that the Subcommittee maintain its
commitment to the Ryan White Part D and increase funding for Part D of
the Ryan White Program by $9.9 million in fiscal year 2019.
ryan white part d background and history
Congress first acted to address pediatric cases in 1987 by
providing $5 million for the Pediatric AIDS Demonstration Projects in
the fiscal year 1988 budget. Those demonstration projects became part
of the Ryan White CARE Act of 1990 and today are known as Ryan White
Part D and have served approximately 200,000 women, infants, children,
youth and family members. Since the program's inception in 1988, Part D
programs have been and continue to be the entry point into medical care
for women and youth. The family-centered primary medical and supportive
services provided by Part D are uniquely tailored to address the needs
of women, including HIV positive pregnant women, HIV exposed infants,
children and youth. Part D programs are the only perinatal clinical
service available to serve HIV-positive pregnant women and HIV exposed
infants, when payments for such services are unavailable from other
sources. Ryan White Part D programs have been extremely effective in
bringing the most vulnerable populations into and retained in care and
is the lifeline for women, infants, children and youth living with HIV/
AIDS. The Part D programs continue to be instrumental in preventing
mother-to-child transmission of HIV and for ensuring that women,
including HIV- positive pregnant women, HIV exposed infants, children
and youth have access to quality HIV care. The program is built on a
foundation of combining medical care and essential support services
that are coordinated, comprehensive, and culturally and linguistically
competent. This model of care addresses the healthcare needs of the
most vulnerable populations living with HIV/AIDS in order to achieve
optimal health outcomes.
In 2017, Part D provided funding to 116 community-based
organizations, academic medical centers and hospitals, federally
qualified health centers, and health departments in 39 States and
Puerto Rico. These federally, directly-funded grantees provide HIV
primary care, specialty and subspecialty care, oral health services,
treatment adherence monitoring and education services pertaining to
opportunities to participate in HIV/AIDS- related clinical research.
These grantees also provide support services which include case
management (medical, non-medical, and family-centered); referrals for
inpatient hospital services; treatment for substance use, and mental
health services. Part D grantees receive assistance from other parts of
the Ryan White Program that help support HIV testing and linkage to
care services; provide access to medication; additional medical care,
such as dental services; and key support services, such as case
management and transportation, which all are essential components of
the highly effective Ryan White HIV care model. This model has
continuously provided comprehensive quality healthcare delivery systems
that have been responsive to women, infants, children, youth and
families for two decades.
a response to women, infants, children, and youth
The Ryan White Program has been enormously successful in meeting
its mission to provide life-extending care and services. Yet, even
though we have made significant progress in decreasing HIV-related
morbidity and mortality, much work remains to be done. While accounting
for less than 5 percent of Ryan White direct care dollars (minus ADAP
and Part F), Ryan White Part D programs have been extremely effective
in bringing our most vulnerable populations into care and developing
medical care and support services especially designed to reach women,
children, youth, and families.
Part D funded programs played a leading role in reducing mother-to-
child transmission of HIV-from more than 2,000 newborn infections
annually more than a decade ago to an estimated 174 in 2014 through
aggressive efforts to reach out to pregnant women. Appropriate funding
is critical to maintain and improve upon this success, as there are
still approximately 8,500 HIV-positive women giving birth every year in
the United States that need counseling, services and support to prevent
pediatric HIV infections. According to the Centers for Disease Control
and Prevention (CDC), Black women represented 59 percent of women
living with HIV infection at the end of 2014 and 61 percent of HIV
diagnosis among women in 2015. Additionally, youth aged 13-24 accounted
for more than 1 in 5 new HIV diagnoses in the US in 2014. Most new HIV
infections in youth (about 55 percent) occur in young Black gay and
bisexual males. Of the new HIV infections among youth, 80 percent are
among young women of color. Ryan White Part D programs are the entry
point into medical care for many of these HIV positive women and youth
and lead the Nation's effort in recruiting and retaining these
populations in comprehensive medical care and support services.
According to the Health Resources and Services Administration, more
than 27 percent of women living with HIV infection were served by the
Ryan White program in 2016. Ryan White Part D provides medical and
supportive services to a significant number of these women as well as a
large number of women over 50 who are heading into their senior years
as HIV survivors. This is a testament to the high standard of care
provided to Ryan White Part D programs. Support and care through the
Ryan White Part D program was and continues to be funding of last
resort for the most vulnerable women and children, who often have
fallen through the cracks of other public health safety nets.
effective model of care
Ryan White Part D programs have been extremely effective in
retaining our most vulnerable populations in care and treatment. The
comprehensive coordinated medical care and supportive services provided
by Part D are uniquely tailored to address the needs of women,
including HIV positive pregnant women, HIV exposed infants, children
and youth living with HIV/AIDS and are central components of a highly
effective model of care designed to achieve optimal health outcomes.
The family-centered primary medical and supportive services provided by
Part D funded programs have enabled these funded programs to
successfully engage and retain vulnerable populations in much needed
care and treatment, resulting in positive health outcomes.
Part D is extremely cost effective relative to the care and
treatment services provided to populations highly impacted by HIV and
AIDS and is a critical component of the Ryan White Program.
Additionally, Part D funded programs across the country and their vast
networks of service providers are fully engaged in addressing and
meeting the critical healthcare needs of women, infants, children and
youth with HIV/AIDS.
conclusion
While we recognize the considerable fiscal constraints Congress
faces in allocating limited Federal dollars, the requested increase of
$9.9 million in fiscal year 2019 will enable Ryan White Part D programs
to continue to deliver life-saving HIV/AIDS care and treatment to
women, infants, children and youth with HIV infection to ensure that
these populations are recruited and retained in care thereby closing
the existing gaps in the HIV Care Continuum. Without the Ryan White
Part D program, many medically-underserved women, infants, children and
youth with HIV would not receive the vital medical care and support
services provided to them for the last two decades.
On behalf of the women, infants, children, and youth living with
HIV/AIDS and the Ryan White Part D funded programs across the country
that serve them we sincerely thank the members of the Subcommittee for
all that you do to ensure that our most vulnerable populations receive
the much needed medical care, treatment and supportive services needed
to sustains their lives.
Thank you.

[This statement was submitted by Dr. Ivy Turnbull, Deputy Executive
Director, AIDS Alliance for Women, Infants, Children, Youth &
Families.]
______

Prepared Statement of The AIDS Institute
Dear Chairman Blunt and Members of the Subcommittee:
The AIDS Institute, a national public policy, research, advocacy,
and education organization, is pleased to offer testimony in support of
domestic HIV and hepatitis programs in the fiscal year 2019 Labor,
Health and Human Services, Education, and Related Agencies
appropriation measure. We thank you for your continued support and
respectfully request $873 million for the CDC's HIV Prevention
Programs; $134 million for CDC's Viral Hepatitis Programs; $2.465
billion for the HRSA's Ryan White HIV/AIDS Program; $105 million for
the HHS Secretary's Minority AIDS Initiative Fund; $160 million for
SAMHSA's Minority AIDS Initiative Program; $3.45 billion for HIV/AIDS
research at the NIH; $130.0 million for the Teen Pregnancy Prevention
Program; and $327 million for the Title X Program.
hiv/aids in the united states
Over 1.1 million people in the U.S. are living with HIV, only about
half of whom are virally suppressed, and there are an estimated 38,500
new infections each year. While there are decreasing rates of new HIV
infections among most populations, increases are occurring in others.
In 2016, African Americans accounted for 44 percent of HIV diagnoses,
though they comprise only 12 percent of the U.S. population, and
between 2010 and 2015, there was a 22 percent increase in new HIV
infections among gay and bisexual Hispanic/Latino men. The South has
been particularly impacted, accounting for 51 percent of estimated
infections. There is also a rise in new HIV infections in certain areas
due to the opioid crisis and injection drug users.
The vast majority of the discretionary programs supporting domestic
HIV efforts are funded through this Subcommittee. Programs that prevent
and treat HIV are in the Federal interest as they protect the public
health against a highly infectious virus. HIV is now a treatable
chronic disease for those with access to consistent and affordable
healthcare and medications. HIV treatment also prevents someone from
spreading the virus to others if they are virally suppressed.
Therefore, HIV treatment is also HIV prevention. Diagnosing, treating,
and achieving viral suppression for all individuals living with HIV are
critical to achieve the goals of our National HIV/AIDS Strategy and
reaching an AIDS-free generation. Sustained Federal investments in
prevention, care and treatment, and research are necessary if we are to
make additional advancements in combatting HIV.
viral hepatitis in the united states
Currently, there is an estimated 1.4 million people living with
hepatitis B (HBV) and 3.9 million living with hepatitis C (HCV) in the
U.S., and the numbers are rising. The CDC estimates that there was a
350 percent increase in new infections of HCV between 2010 and 2016,
with an estimated 41,200 new cases in 2016. HBV infections also
increased, with approximately 20,900 new cases occurring in 2016, up
from an estimated 18,800 cases in 2011. Much of these increases have
been driven by the ongoing opioid crisis. Additionally, more than 50
percent of people currently living with HBV or HCV remain undiagnosed.
Left untreated, viral hepatitis can cause liver damage, cirrhosis, and
liver cancer--one of the most lethal, expensive, and fastest growing
cancers in the U.S. Viral hepatitis mortality rates have increased over
the past decade, and there are nearly 20,000 HCV-related deaths each
year, which is more than the 60 other notifiable infectious diseases
combined.
Due to advances in medical science, there is now a highly effective
treatment for HCV that can cure the disease in as little as eight weeks
with few to no side effects. There are also vaccines for children and
adults that protect against HBV. The National Academies of Science,
Engineering, and Medicine has released a report outlining how
increasing HBV vaccination and HCV treatment efforts, along with an
investment in viral hepatitis testing, education, and surveillance can
put the U.S. on the path to eliminating viral hepatitis as a public
health threat.
infectious disease impact of the opioid crisis
The recent explosion of opioid use in the U.S. has created
tremendous risk for HIV and HCV outbreaks. Outbreaks related to the
shared use of syringes have already occurred in Indiana, San Diego,
Kentucky, and elsewhere in the past 3 years. The CDC has identified 220
counties across 26 States that are vulnerable to outbreaks and has
estimated that at least seventy percent of new HCV infections are among
people who inject drugs. The increasing HIV infection rates among
people who inject drugs risks undoing the Nation's decades-long
progress toward curbing transmissions. The skyrocketing increases in
new viral hepatitis cases caused by injection drug use not only pose a
serious public health threat, but also moves the country further away
from eliminating viral hepatitis. A comprehensive response to the
opioid crisis must include efforts to reduce the infectious disease
consequences of the crisis.
In his fiscal year 2019 Budget, the President proposed a new $40
million ``Infectious Disease Elimination Initiative'' at the CDC, and a
new $150 million ``Reducing Injection Drug Use, HIV/AIDS, and
Hepatitis'' program at SAMHSA. While The AIDS Institute is highly
supportive of these initiatives they are coupled with a $40 million
reduction to CDC's HIV Prevention programs and a complete elimination
of SAMHSA's Minority AIDS Initiative program. We urge the Subcommittee
to fund these new initiatives but not at the expense of cutting
existing programs.
Additionally, both the House and Senate are advancing legislation
that authorizes $40 million in additional funding for the CDC to
address opioid related infectious diseases, including Hepatitis and HIV
(``Eliminating Opioid Related Infectious Diseases Act'' (H.R. 5353),
``Opioid Crisis Response Act of 2018'' (S. 2680, Section 512)). The
AIDS Institute strongly urges the Subcommittee to fully fund this
program at the authorized level if it were to become law.
cdc viral hepatitis prevention
Despite the large increase in the number of cases and the estimated
level of resources needed to eliminate the disease, the CDC's Division
of Viral Hepatitis funding is only $39 million. This is far from the
estimated $312 million a December 2016 CDC professional judgment budget
describes as being necessary for a national viral hepatitis program
focused on decreasing mortality and reducing the spread of the disease.
Unfortunately, the President's fiscal year 2019 Budget reduces funding
to the $34 million fiscal year 2017 level. Only with increased funding
can we begin to address the rise in viral hepatitis and combat the
impact of the opioid crisis. The AIDS Institute recommends $134 million
for CDC viral hepatitis activities in order address this epidemic. This
will provide an adequate level of education, screening, treatment, and
the surveillance needed to reduce new infections and eventually
eliminate hepatitis in the U.S.
cdc hiv prevention
The CDC is focusing resources on those populations and communities
most impacted by investing in high-impact prevention. With one in seven
people living with HIV in the U.S. unaware of their infection, the CDC
is also increasing access to HIV testing. There is no single way to
prevent HIV, but jurisdictions use a combination of effective evidence-
based approaches including testing, linkage to care, education,
condoms, syringe service programs, and pre-exposure prophylaxis (PrEP),
a once a day pill that effectively prevents HIV infection.
We were extremely disappointed that the President has proposed a
$40 million cut to HIV prevention programs. A cut this size would
reverse the progress we have made in preventing new infections, and
especially strain resources that are needed to fight the infectious
disease impacts of the opioid crisis. We urge the Subcommittee to fund
CDC's HIV Prevention program at $872.7 million, including $50 million
for school-based HIV prevention efforts. One in five new HIV infections
are among young people between the ages of 13 and 24.
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program, acting as the payer of last
resort, provides medications, medical care, and essential coverage
completion services to approximately 550,000 low-income individuals
with HIV, many of whom are uninsured or underinsured. With people
living longer and continued new diagnoses, the demands on the program
continue to grow. The Ryan White Program successfully engages
individuals in care and treatment, increases access to HIV medications,
and helps over 85 percent of clients achieve viral suppression compared
to just 49 percent of all HIV-positive individuals nationwide. Part of
the Ryan White Program, the AIDS Drug Assistance Program, provides
funding for States to assist more than 250,000 people access lifesaving
medications and helps enrollees afford insurance premiums, deductibles,
and high cost-sharing of their medications. It is an important
component in the successful health outcomes of Ryan White clients. With
a changing and uncertain healthcare landscape and more need for
comprehensive HIV care as a result of the opioid crisis, increased
funding for the Ryan White Program is critically important now and in
the future to ensure access to healthcare, medications, and other life-
saving services for people with HIV.
In the President's fiscal year 2019 Budget Request, the AIDS
Education and Training Centers (AETCs) and the Special Projects of
National Significance (SPNS) were proposed for elimination. These two
programs are integral pieces of the Ryan White HIV/AIDS Program and
help to address the unique needs of hard to reach people living with
HIV, including those who are co-infected with HCV. We urge your
Subcommittee to reject these proposed cuts as was done in the fiscal
year 2018 Omnibus.
The AIDS Institute requests that the Subcommittee fund the Ryan
White HIV/AIDS Program at a total of $2.465 billion in fiscal year
2019, distributed in the following manner: Part A at $686.7 million;
Part B (Care) at $437 million; Part B (ADAP) at $943.3 million; Part C
at $225.1 million; Part D at $85 million; Part F/AETC at $35.5 million;
Part F/Dental at $18 million; and Part F/SPNS at $34 million.
minority aids initiative (mai)
As racial and ethnic minorities in the U.S. are disproportionately
impacted by HIV, it is critical that the Subcommittee reject the
President's proposal to completely eliminate the HHS Secretary's
Minority AIDS Fund and Minority AIDS programs at SAMHSA. The
Secretary's MAI Fund supports cross-agency demonstration initiatives to
support HIV prevention, care and treatment, and outreach and education
activities. SAMHSA's Minority AIDS programs target highly effected
populations and provide prevention, treatment, and recovery support
services, along with HIV testing for people at risk of mental illness
and/or substance abuse. We urge the Subcommittee to appropriate $105
million for the HHS Secretary's Minority AIDS Initiative Fund; and $160
million for SAMHSA's Minority AIDS Initiative Program.
hiv/aids research at the nih
The NIH has supported innovative HIV research for better drug
therapies, behavioral and biomedical prevention interventions, and has
saved the lives of millions around the world. Research coordinated by
the NIH's Office of AIDS Research (OAR) is vital in our efforts to end
the epidemic. OAR ensures that funding for HIV/AIDS research is
directed toward the most promising medical innovations. Continued
research is necessary to learn more about the disease and to develop
new treatments, prevention tools, and ultimately a cure. The NIH is
currently studying new HIV treatment options, innovative delivery
methods for PrEP, the possibility of an HIV vaccine, and novel medical
research that may lead to a cure. We urge the Subcommittee to support
AIDS research at $3.45 billion, a figure that is based on the NIH's
fiscal year 2018 Trans-NIH AIDS By-Pass Budget Estimate.
the teen pregnancy prevention program
Young people under the age of 25 account for one in five new HIV
infections in the U.S. We must ensure that they, especially those
disproportionately impacted by HIV, have access to high quality
evidence-based sexual health programs. The Teen Pregnancy Prevention
Program (TPPP) funds innovative community-driven projects aimed at
reducing unplanned pregnancies and increasing access to sexual health
education such as HIV prevention information. TPPP is a key tool in our
HIV prevention work with young people, and we urge the Subcommittee to
reject the President's proposal to eliminate the program. Instead, we
request the Subcommittee fund TPPP at $130 million in fiscal year 2019.
sexual risk avoidance/abstinence-only education
Our Nation has wasted billions of dollars funding ineffective and
harmful abstinence-only programs, now rebranded as ``sexual risk
avoidance.'' We urge the Subcommittee to fully defund these programs,
saving taxpayer $25 million a year, and ensuring that young people are
not withheld from sexual health information, including HIV prevention
tools.
title x family planning program
The Title X family planning program provides family planning and
sexual health services to over 4 million low income people across the
Nation. Title X clinics are essential to ensuring access to family
planning and sexual health services, including HIV prevention education
and testing. In 2015, 1.2 million HIV tests and 5 million STD tests
were provided by Title X clinics. In order to ensure that Title X has
the necessary funds to administer high quality sexual health services,
we request that the Subcommittee appropriate $327 million for Title X
in fiscal year 2019.

[This statement was submitted by Carl Schmid, Deputy Executive
Director, The AIDS Institute.]
______

Prepared Statement of The AIDS Institute
Dear Chairman Blunt and Members of the Subcommittee: The AIDS
Institute, a national public policy, research, advocacy, and education
organization, is pleased to offer testimony in support of domestic HIV
and hepatitis programs in the fiscal year 2019 Labor, Health and Human
Services, Education, and Related Agencies appropriation measure. We
thank you for your continued support and respectfully request $873
million for the CDC's HIV Prevention Programs; $134 million for CDC's
Viral Hepatitis Programs; $2.465 billion for the HRSA's Ryan White HIV/
AIDS Program; $105 million for the HHS Secretary's Minority AIDS
Initiative Fund; $160 million for SAMHSA's Minority AIDS Initiative
Program; $3.45 billion for HIV/AIDS research at the NIH; $130.0 million
for the Teen Pregnancy Prevention Program; and $327 million for the
Title X Program.
hiv/aids in the united states
Over 1.1 million people in the U.S. are living with HIV, only about
half of whom are virally suppressed, and there are an estimated 38,500
new infections each year. While there are decreasing rates of new HIV
infections among most populations, increases are occurring in others.
In 2016, African Americans accounted for 44 percent of HIV diagnoses,
though they comprise only 12 percent of the U.S. population, and
between 2010 and 2015, there was a 22 percent increase in new HIV
infections among gay and bisexual Hispanic/Latino men. The South has
been particularly impacted, accounting for 51 percent of estimated
infections. There is also a rise in new HIV infections in certain areas
due to the opioid crisis and injection drug users.
The vast majority of the discretionary programs supporting domestic
HIV efforts are funded through this Subcommittee. Programs that prevent
and treat HIV are in the Federal interest as they protect the public
health against a highly infectious virus. HIV is now a treatable
chronic disease for those with access to consistent and affordable
healthcare and medications. HIV treatment also prevents someone from
spreading the virus to others if they are virally suppressed.
Therefore, HIV treatment is also HIV prevention. Diagnosing, treating,
and achieving viral suppression for all individuals living with HIV are
critical to achieve the goals of our National HIV/AIDS Strategy and
reaching an AIDS-free generation. Sustained Federal investments in
prevention, care and treatment, and research are necessary if we are to
make additional advancements in combatting HIV.
viral hepatitis in the united states
Currently, there is an estimated 1.4 million people living with
hepatitis B (HBV) and 3.9 million living with hepatitis C (HCV) in the
U.S., and the numbers are rising. The CDC estimates that there was a
350 percent increase in new infections of HCV between 2010 and 2016,
with an estimated 41,200 new cases in 2016. HBV infections also
increased, with approximately 20,900 new cases occurring in 2016, up
from an estimated 18,800 cases in 2011. Much of these increases have
been driven by the ongoing opioid crisis. Additionally, more than 50
percent of people currently living with HBV or HCV remain undiagnosed.
Left untreated, viral hepatitis can cause liver damage, cirrhosis, and
liver cancer--one of the most lethal, expensive, and fastest growing
cancers in the U.S. Viral hepatitis mortality rates have increased over
the past decade, and there are nearly 20,000 HCV-related deaths each
year, which is more than the 60 other notifiable infectious diseases
combined.
Due to advances in medical science, there is now a highly effective
treatment for HCV that can cure the disease in as little as eight weeks
with few to no side effects. There are also vaccines for children and
adults that protect against HBV. The National Academies of Science,
Engineering, and Medicine has released a report outlining how
increasing HBV vaccination and HCV treatment efforts, along with an
investment in viral hepatitis testing, education, and surveillance can
put the U.S. on the path to eliminating viral hepatitis as a public
health threat.
infectious disease impact of the opioid crisis
The recent explosion of opioid use in the U.S. has created
tremendous risk for HIV and HCV outbreaks. Outbreaks related to the
shared use of syringes have already occurred in Indiana, San Diego,
Kentucky, and elsewhere in the past 3 years. The CDC has identified 220
counties across 26 States that are vulnerable to outbreaks and has
estimated that at least seventy percent of new HCV infections are among
people who inject drugs. The increasing HIV infection rates among
people who inject drugs risks undoing the Nation's decades-long
progress toward curbing transmissions. The skyrocketing increases in
new viral hepatitis cases caused by injection drug use not only pose a
serious public health threat, but also moves the country further away
from eliminating viral hepatitis. A comprehensive response to the
opioid crisis must include efforts to reduce the infectious disease
consequences of the crisis.
In his fiscal year 2019 Budget, the President proposed a new $40
million ``Infectious Disease Elimination Initiative'' at the CDC, and a
new $150 million ``Reducing Injection Drug Use, HIV/AIDS, and
Hepatitis'' program at SAMHSA. While The AIDS Institute is highly
supportive of these initiatives they are coupled with a $40 million
reduction to CDC's HIV Prevention programs and a complete elimination
of SAMHSA's Minority AIDS Initiative program. We urge the Subcommittee
to fund these new initiatives but not at the expense of cutting
existing programs.
Additionally, both the House and Senate are advancing legislation
that authorizes $40 million in additional funding for the CDC to
address opioid related infectious diseases, including Hepatitis and HIV
(``Eliminating Opioid Related Infectious Diseases Act'' (H.R. 5353),
``Opioid Crisis Response Act of 2018'' (S. 2680, Section 512)). The
AIDS Institute strongly urges the Subcommittee to fully fund this
program at the authorized level if it were to become law.
cdc viral hepatitis prevention
Despite the large increase in the number of cases and the estimated
level of resources needed to eliminate the disease, the CDC's Division
of Viral Hepatitis funding is only $39 million. This is far from the
estimated $312 million a December 2016 CDC professional judgment budget
describes as being necessary for a national viral hepatitis program
focused on decreasing mortality and reducing the spread of the disease.
Unfortunately, the President's fiscal year 2019 Budget reduces funding
to the $34 million fiscal year 2017 level. Only with increased funding
can we begin to address the rise in viral hepatitis and combat the
impact of the opioid crisis. The AIDS Institute recommends $134 million
for CDC viral hepatitis activities in order address this epidemic. This
will provide an adequate level of education, screening, treatment, and
the surveillance needed to reduce new infections and eventually
eliminate hepatitis in the U.S.
cdc hiv prevention
The CDC is focusing resources on those populations and communities
most impacted by investing in high-impact prevention. With one in seven
people living with HIV in the U.S. unaware of their infection, the CDC
is also increasing access to HIV testing. There is no single way to
prevent HIV, but jurisdictions use a combination of effective evidence-
based approaches including testing, linkage to care, education,
condoms, syringe service programs, and pre- exposure prophylaxis
(PrEP), a once a day pill that effectively prevents HIV infection.
We were extremely disappointed that the President has proposed a
$40 million cut to HIV prevention programs. A cut this size would
reverse the progress we have made in preventing new infections, and
especially strain resources that are needed to fight the infectious
disease impacts of the opioid crisis. We urge the Subcommittee to fund
CDC's HIV Prevention program at $872.7 million, including $50 million
for school-based HIV prevention efforts. One in five new HIV infections
are among young people between the ages of 13 and 24.
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program, acting as the payer of last
resort, provides medications, medical care, and essential coverage
completion services to approximately 550,000 low-income individuals
with HIV, many of whom are uninsured or underinsured. With people
living longer and continued new diagnoses, the demands on the program
continue to grow. The Ryan White Program successfully engages
individuals in care and treatment, increases access to HIV medications,
and helps over 85 percent of clients achieve viral suppression compared
to just 49 percent of all HIV-positive individuals nationwide. Part of
the Ryan White Program, the AIDS Drug Assistance Program, provides
funding for States to assist more than 250,000 people access lifesaving
medications and helps enrollees afford insurance premiums, deductibles,
and high cost-sharing of their medications. It is an important
component in the successful health outcomes of Ryan White clients. With
a changing and uncertain healthcare landscape and more need for
comprehensive HIV care as a result of the opioid crisis, increased
funding for the Ryan White Program is critically important now and in
the future to ensure access to healthcare, medications, and other life-
saving services for people with HIV.
In the President's fiscal year 2019 Budget Request, the AIDS
Education and Training Centers (AETCs) and the Special Projects of
National Significance (SPNS) were proposed for elimination. These two
programs are integral pieces of the Ryan White HIV/AIDS Program and
help to address the unique needs of hard to reach people living with
HIV, including those who are co-infected with HCV. We urge your
Subcommittee to reject these proposed cuts as was done in the fiscal
year 2018 Omnibus.
The AIDS Institute requests that the Subcommittee fund the Ryan
White HIV/AIDS Program at a total of $2.465 billion in fiscal year
2019, distributed in the following manner: Part A at $686.7 million;
Part B (Care) at $437 million; Part B (ADAP) at $943.3 million; Part C
at $225.1 million; Part D at $85 million; Part F/AETC at $35.5 million;
Part F/Dental at $18 million; and Part F/SPNS at $34 million.
minority aids initiative
As racial and ethnic minorities in the U.S. are disproportionately
impacted by HIV, it is critical that the Subcommittee reject the
President's proposal to completely eliminate the HHS Secretary's
Minority AIDS Fund and Minority AIDS programs at SAMHSA. The
Secretary's MAI (Minority AIDS Initiative) Fund supports cross-agency
demonstration initiatives to support HIV prevention, care and
treatment, and outreach and education activities. SAMHSA's Minority
AIDS programs target highly effected populations and provide
prevention, treatment, and recovery support services, along with HIV
testing for people at risk of mental illness and/or substance abuse. We
urge the Subcommittee to appropriate $105 million for the HHS
Secretary's Minority AIDS Initiative Fund; and $160 million for
SAMHSA's Minority AIDS Initiative Program.
hiv/aids research at the nih
The NIH has supported innovative HIV research for better drug
therapies, behavioral and biomedical prevention interventions, and has
saved the lives of millions around the world. Research coordinated by
the NIH's Office of AIDS Research (OAR) is vital in our efforts to end
the epidemic. OAR ensures that funding for HIV/AIDS research is
directed toward the most promising medical innovations. Continued
research is necessary to learn more about the disease and to develop
new treatments, prevention tools, and ultimately a cure. The NIH is
currently studying new HIV treatment options, innovative delivery
methods for PrEP, the possibility of an HIV vaccine, and novel medical
research that may lead to a cure. We urge the Subcommittee to support
AIDS research at $3.45 billion, a figure that is based on the NIH's
fiscal year 2018 Trans-NIH AIDS By-Pass Budget Estimate.
the teen pregnancy prevention program
Young people under the age of 25 account for one in five new HIV
infections in the U.S. We must ensure that they, especially those
disproportionately impacted by HIV, have access to high quality
evidence-based sexual health programs. The Teen Pregnancy Prevention
Program (TPPP) funds innovative community-driven projects aimed at
reducing unplanned pregnancies and increasing access to sexual health
education such as HIV prevention information. TPPP is a key tool in our
HIV prevention work with young people, and we urge the Subcommittee to
reject the President's proposal to eliminate the program. Instead, we
request the Subcommittee fund TPPP at $130 million in fiscal year 2019.
sexual risk avoidance/abstinence-only education
Our Nation has wasted billions of dollars funding ineffective and
harmful abstinence-only programs, now rebranded as ``sexual risk
avoidance.'' We urge the Subcommittee to fully defund these programs,
saving taxpayer $25 million a year, and ensuring that young people are
not withheld from sexual health information, including HIV prevention
tools.
title x family planning program
The Title X family planning program provides family planning and
sexual health services to over 4 million low income people across the
Nation. Title X clinics are essential to ensuring access to family
planning and sexual health services, including HIV prevention education
and testing. In 2015, 1.2 million HIV tests and 5 million STD tests
were provided by Title X clinics. In order to ensure that Title X has
the necessary funds to administer high quality sexual health services,
we request that the Subcommittee appropriate $327 million for Title X
in fiscal year 2019.

[This statement was submitted by Carl Schmid, Deputy Executive
Director,
The AIDS Institute.]
______

Prepared Statement of AIDS United
As the Committee begins its important deliberations on the fiscal
year 2019 Labor, Health and Human Services, Education, and Related
Agencies appropriation bill, we thank you for your continued commitment
to addressing HIV/AIDS in the United States and ask that you maintain
the Federal Government's commitment to safety-net programs that protect
public health. Specifically, we ask that you adequately fund the CDC
Division of HIV prevention and surveillance activities at $872.7
million to prevent new infections, AIDS research at the NIH at $3.45
billion to find a cure and address other research priorities, and the
Ryan White HIV/AIDS Program at $2.465 billion to better ensure that all
people living with HIV receive treatment and are retained in care.
Research has shown that we can achieve the goal of ending the HIV
epidemic by diagnosing and treating all cases of HIV and by helping
people at risk access means to protect themselves, including through
pre-exposure prophylaxis (PrEP), but reaching this goal requires the
Federal Government to continue to commit and even increase resources.
While we have seen progress in the fight to end HIV in the United
States, programs are not fully resourced to actually reach the end of
the epidemic. Additionally, new, intersectional threats such as the
opioid epidemic have emerged and must also be addressed within the
context of infectious disease as well. Due to austere budgets, domestic
HIV/AIDS programs and other non-defense discretionary programs have
been cut in recent years, even as new HIV infections continue at 37,600
per year and disproportionately impact disenfranchised communities
including people of color, gay men, women, people living in the South,
and young people. We appreciate that the subcommittee has recognized
this need in the past and ask that you increase funding for domestic
HIV/AIDS programs as you formulate the fiscal year 2019 funding
measures.
The Ryan White HIV/AIDS Program
The Ryan White HIV/AIDS Program (``Program'') is a system of care
that provides medications, medical care, and essential coverage
completion services to approximately 550,000 low-income, uninsured, and
underinsured individuals living with HIV/AIDS in the United States.
Early and reliable access to HIV care and treatment, such as what the
Program provides, is cost effective and helps people with HIV live
healthy and productive lives. As the CDC recognized last year, when
people living with HIV adhere to treatment regimens to maintain
sustained viral suppression, there is effectively zero risk of
transmitting the virus to an HIV-negative sexual partner. To achieve an
undetectable viral load, people living with HIV must have consistent
access to high-quality care and affordable medications. With the number
of people living with HIV in the United States at 1.1 million, the
demands on the Ryan White Program, which now covers nearly 60 percent
of all people diagnosed with HIV in the U.S., continue to grow while
funding does not keep pace, leaving many needs unmet.
As a payer of last resort, the Ryan White Program works in
conjunction with Medicaid, Medicare, and the Affordable Care Act (ACA)
to help with out-of-pocket costs and to support access to critical
medical and coverage completion services not covered by traditional
health insurance. The Ryan White Program also will continue to be the
primary source of HIV/AIDS care and treatment for the millions who will
not be eligible for health coverage under the ACA, including low-income
people who live in non-Medicaid-expansion States. Sustained and
increased funding of primary care, medications, and coverage completion
services as well as education and training for medical providers in the
Ryan White Program continues to be necessary to move towards ending the
epidemic. We urge you to maintain all parts of the Program.
Racial and ethnic minority populations, and particularly African
Americans/Black Americans, continue to bear the disproportionate burden
of HIV prevalence and new diagnoses. To decrease these health outcome
disparities, the Minority AIDS Initiative (MAI) was created in 1999 to
fund parts of the Program to serve minority populations specifically as
well as to support innovative projects and research that would produce
sustainable change in the Federal HIV response to better serve racial
and ethnic minorities. As one such administrator of MAI funds, the HHS
Secretary's Minority AIDS Initiative Fund (SMAIF) has supported
projects in over 40 States, Puerto Rico, and the District of Columbia
that directly impact the health and well-being of people of color
living with or affected by HIV. Projects supported by SMAIF generally
take a broad, intersectional approach to addressing these racial health
disparities, tackling such topics as intimate partner violence, the
leadership of people of color, pre-exposure prophylaxis (PrEP) access,
and Hepatitis C (HCV) comorbidity in minority groups most affected by
HIV. Sustained funding of these initiatives brings us closer to ending
the HIV epidemic through a commitment to the wellbeing of those most
impacted.
As exemplified by the evidence that someone whose viral load is
undetectable cannot transmit HIV to a partner, scientific knowledge and
medical best practices regarding HIV have advanced exponentially in the
nearly four decades since the epidemic began in the United States.
Medical professionals of all scopes and practices encounter patients
living with HIV; with such rapidly developing standards, however, many
struggle to provide their patients with the best care. In order to end
the HIV epidemic, medical personnel must be provided the highest
quality of continuing professional education. The AIDS Education and
Training Centers (AETCs), under Part F of the Ryan White Program, are a
network of HIV experts who train and provide consultation to medical
professionals serving people living with HIV to ensure the highest
standards of provider competency and comfort with the unique clinical
and social challenges that can accompany an HIV diagnosis. The AETCs
work regionally, able to meet providers where they are in terms of
their location and knowledge about HIV care. Without the intervention
of the AETCs, access to HIV care would decrease significantly. AETCs
are often the ``first responders'' to new facets of the HIV epidemic,
including training providers in behavioral and mental health
comorbidities, addressing the impact of the opioid crisis on the HIV
epidemic, and creating pathways for providers to become HIV specialists
when the need arises in their area. Continued support of the AETCs is
vital to achieving the goal of the National HIV/AIDS Strategy of
ensuring people living with HIV are diagnosed, linked to, and retained
in care by starting with the source: highly trained medical
professionals. Similarly, we urge you to increase critical practical
research funds that produce cutting-edge knowledge through the Special
Projects of National Significance at $34 million.
Funding for the Ryan White Program is critical to improving health
coverage and outcomes for people living with HIV. Therefore, we urge
you to fund the Ryan White Program at a total of $2.465 billion in
fiscal year 2019, an increase of $145.8 million over fiscal year 2018,
distributed as follows: Part A, $686.7 million; Part B/Care, $437
million; Part B/ADAP, $943.3 million; Part C, $225.1 million; Part D,
$85 million; Part F/AETC, $35.5 million; Part F/Dental, $18 million;
Part F/SPNS, $34 million; Minority AIDS Initiative, $610 million.\1\
---------------------------------------------------------------------------
\1\ Total MAI funding is distributed through multiple programs and,
in most instances, is included in the funding requests for those
programs. (Federal AIDS Policy Partnership. ABAC fiscal year 2019
Requests. April 16, 2018).
---------------------------------------------------------------------------
HIV Prevention--CDC HIV Prevention and Surveillance
Although the United States has significantly reduced the number of
infections over 30 years of fighting HIV, there still are 37,600 new
infections annually and about 1 in 7 people living with HIV do not know
they have the virus. In 2016, approximately 63 percent of Ryan White
Program clients were living at or below the Federal poverty level. In
2016, nearly three-quarters of Ryan White HIV/AIDS Program clients were
from racial or ethnic minority populations, with approximately 47
percent identifying as Black/African American and approximately 23
percent identifying as Hispanic/Latinx. In the same year, more than 71
percent of Program clients were male, more than 27 percent were female,
and slightly more than 1 percent were transgender.
AIDS United is pleased that the CDC has targeted funds to fight HIV
among gay and bisexual men and transgender people including funding for
PrEP--a highly effective prevention tool for people who are HIV-
negative but at substantial risk--plus ongoing medical care and
antiretroviral treatment for people with HIV. While we are making
progress in decreasing new infections among women, women of color are
still disproportionately affected: Black women accounted for 61 percent
of women infected in 2016, and the HIV diagnosis rate among Hispanic/
Latinx women in 2015 was more than three times that of white women.
Investing in HIV prevention today translates into less spending in
the future on care and treatment. We are at a critical juncture in the
fight against HIV/AIDS: we have the tools to end the epidemic, but we
must invest the resources now to bring the vision of ending the
epidemic to reality. In order to achieve the goals of reducing new
infections, increasing knowledge of HIV status, and minimizing HIV
transmission, funding for the CDC is needed to carry out its High-
Impact Prevention activities. For fiscal year 2019, we request
increases of $84 million over fiscal year 2018 for a total of $872.7
million for the CDC Division of HIV prevention and surveillance
activities. [Note: This request does not include the request for DASH]
Combating Viral Hepatitis and Protecting Access to Sterile Syringes
AIDS United strongly urges the Committee to maintain current
language allowing the use of Federal funds for syringe services
programs in eligible jurisdictions experiencing or at risk for an HIV
outbreak or elevated levels of HCV and where local public health or
local law enforcement authorities deem a site to be appropriate. People
with HIV infection in the United States are often affected by chronic
viral hepatitis; about one-third are coinfected with either Hepatitis B
(HBV) or HCV, and viral hepatitis progresses faster and causes more
liver-related health problems among people with HIV than among those
who do not have HIV. Over the last several years, the opioid crisis has
led to concerning numbers of new infections tied to injection drug use,
resulting in nearly 55,000 new hepatitis cases each year. At just $39
million a year, CDC's viral hepatitis programs do not have the needed
resources to combat the infectious diseases associated with the opioid
epidemic. The CDC has identified 220 counties that are most vulnerable
to outbreaks of HCV and HIV related to injection drug use. These
counties are spread across 26 States and represent only the top 5
percent of vulnerable counties overall. At present, more than 93
percent of those 220 counties vulnerable to HIV/HCV outbreaks do not
have comprehensive syringe service programs. Over the past 30 years,
the CDC has collected compelling evidence of syringe services programs'
effectiveness, safety, and cost-effectiveness for HIV prevention among
program participants and for reductions in HIV, HCV, and HBV incidence
rates community-wide. Syringe services programs increase access to
comprehensive resources such as HIV and Hepatitis testing and linkage
to treatment, referral to substance use treatment and assistance,
behavioral health services, primary care, overdose treatment and
education, Hepatitis A and B vaccinations, and other ancillary
services.
More than forty new comprehensive syringe services programs have
been implemented since the CDC released its program guidance in 2016,
and existing syringe services programs are experiencing high demand for
services, yet funding has not increased proportionally. Syringe
services programs are recommended by AIDS United as a key component of
the Department of Health and Human Service's response to the opioid
crisis in CDC, HRSA, and SAMHSA appropriations. AIDS United urges the
Committee to adequately fund the CDC Division of HIV prevention and
surveillance activities at $872.7 million and to increase funding for
the CDC Division of Viral Hepatitis activities to $134 million for the
purpose of ensuring appropriate levels of testing, education, screening
and linkage to care, surveillance, and on-the-ground syringe service
programs that reduce the infectious disease consequences of the
Nation's opioid crisis.
HIV/AIDS Research at the National Institutes of Health (NIH)
Building on recent progress, robust support for HIV research must
continue until better, more effective and affordable prevention and
treatment regimens--and eventually a cure--are developed and
universally available. For the U.S. to maintain its position as the
global leader in HIV/AIDS research for the 36.7 million people globally
and 1.1 million people in our Nation living with HIV, we must invest
adequate resources in HIV research at the NIH. NIH research has
produced promising recent advances, including the study of the
prevention effects of treatment, improved treatment programming, and
the first partially effective HIV vaccine. In order to realize similar
breakthroughs in the future and improve the HIV care continuum,
continued robust AIDS research funding is essential. We ask that you
request $3.45 billion for HIV research at the NIH, an increase of $0.45
billion over fiscal year 2018.
AIDS United looks forward to a positive outcome for the funding
request for HIV/AIDS domestic programs, and we thank you for your
continued leadership and support of these critical programs for so many
people living with HIV and the organizations and communities that serve
them nationwide. For questions, please contact Carl Baloney, Jr.,
Director of Government Affairs, at [email protected].
Sincerely.

[This statement was submitted by William D. McColl, Vice President
of Policy and Advocacy, AIDS United.]
______

Prepared Statement of the Alzheimer's Association and
Alzheimer's Impact Movement
The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
appreciate the opportunity to testify on the fiscal year 2019
appropriations for Alzheimer's 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. The Alzheimer's Association is the nonprofit with the highest
impact in Alzheimer's research worldwide and is committed to
accelerating research toward methods of treatment, prevention and,
ultimately, a cure. The Alzheimer's Impact Movement (AIM) is the
advocacy arm of the Alzheimer's Association, working in strategic
partnership to make Alzheimer's a national priority. Together, the
Alzheimer's Association and AIM advocate for policies to fight
Alzheimer's disease, including increased investment in research,
improved care and support, and development of approaches to reduce the
risk of developing dementia.
alzheimer's impact on the american people and the economy
The most important reason to address Alzheimer's is because of the
human suffering it causes to millions of Americans. Alzheimer's is a
progressive brain disorder that damages and eventually destroys brain
cells, leading to a loss of memory, thinking and other brain functions.
Ultimately, Alzheimer's is fatal. According to recent data from the
National Center for Health Statistics, deaths from Alzheimer's disease
increased 123 percent between 2000 and 2015. Currently, Alzheimer's is
the sixth leading cause of death in the United States and the only one
of the top ten without a means to prevent, cure or slow its
progression. Over five million Americans are living with Alzheimer's,
with 200,000 under the age of 65.
In addition to the human suffering caused by the disease, however,
Alzheimer's is also creating an enormous strain on the healthcare
system, families, and Federal and State budgets. Alzheimer's is the
most expensive disease in America. In fact, a study funded by the
National Institutes of Health (NIH) in the New England Journal of
Medicine confirmed that Alzheimer's is the most costly disease in
America, with costs set to skyrocket at unprecedented rates. If nothing
is done, as many as 14 million Americans will have Alzheimer's by 2050
and costs will exceed $1.1 trillion (not adjusted for inflation).\1\ As
the current generation of baby boomers age, near-term costs for caring
for those with Alzheimer's will balloon, as Medicare and Medicaid will
cover more than two-thirds of the costs for their care.
---------------------------------------------------------------------------
\1\ 2018 Alzheimer's Disease Facts and Figures:https://www.alz.org/
documents_custom/2018-facts-and-figures.pdf.
---------------------------------------------------------------------------
Caring for people with Alzheimer's will cost all payers--Medicare,
Medicaid, individuals, private insurers and HMOs--$20 trillion over the
next 40 years. As noted in the 2018 Alzheimer's Disease Facts and
Figures report, in 2018 America will spend an estimated $277 billion in
direct costs for those with Alzheimer's, including $186 billion in
costs to Medicare and Medicaid. Average per person Medicare costs for
those with Alzheimer's and other dementias are more than three times
higher than those without these conditions. Average per senior Medicaid
spending is 23 times higher.\2\
---------------------------------------------------------------------------
\2\ ibid.
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changing the trajectory of alzheimer's
Until recently, the Federal Government did not have a strategy 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 Plan to Address Alzheimer's Disease (National Plan)
to help those with the disease and their families today and to change
the trajectory of the disease for the future. The National Plan must
include an evaluation of all federally-funded efforts in Alzheimer's
research, care and services--along with their outcomes.
If America is going to succeed in the fight against Alzheimer's,
Congress must continue to provide the resources scientists need to do
their work. Understanding this, in 2014 Congress passed the
Consolidated and Further Continuing Appropriations Act of 2015 (Public
Law 113-235), which included the Alzheimer's Accountability Act (S.
2192/H.R. 4351). The Alzheimer's Accountability Act requires NIH to
develop a Professional Judgment Budget focused on the research
milestones established by the National Plan. This provides Congress
with an account of the resources that NIH has confirmed are needed to
reach the lead goal of the National Plan: to effectively treat and
prevent Alzheimer's by 2025.
Recent funding increases have been critical to accelerate progress
toward the National Plan's 2025 goal. Among other advances, this
additional funding has already enabled important research advances into
new biomarkers to detect the disease before the onset of symptoms, help
to build better animal models to replicate the disease and enable
preclinical testing of promising therapeutics, and has increased data
sharing.
For example, the Alzheimer's Disease Neuroimaging Initiative
(ADNI), which tracks how neuroimaging and fluid biomarkers change with
disease onset and progression, has moved into a critical new phase of
discovery with ADNI3. ADNI3 focuses on brain scans that detect the
amount and location of tau protein tangles, one of the hallmark brain
changes of Alzheimer's disease. The discovery of novel biomarkers for
Alzheimer's disease is critically needed for detection of disease-
related changes years before the symptoms of memory loss appear.
Additionally, increased NIH funding has enabled the Accelerating
Medicines Partnership-Alzheimer's Disease (AMP-AD) knowledge portal, a
vibrant public-private partnership bringing together the NIH,
pharmaceutical companies, and non-profits like the Alzheimer's
Association. This important data portal allows the researcher community
to access and analyze data on a scale that would not be possible by
individual research teams, academic institutions, or pharmaceutical
companies. This broad and rapid sharing of biological data and
analytical results has already allowed researchers to discover more
than 100 novel candidate targets.
Another exciting development is the publication last month of a new
research framework developed between the National Institute on Aging
(NIA) and the Alzheimer's Association, ``NIA-AA Research Framework:
Towards a Biological Definition of Alzheimer's Disease.'' This new
framework shifts the definition of Alzheimer's disease in a research
context from one based on cognitive changes and behavioral symptoms
with biomarker confirmation, to a strictly biological construct as we
have for other major diseases. This framework provides researchers a
roadmap that circumvents many of the pitfalls that have crippled so
many high-profile clinical trials in recent years. By recognizing the
onset of Alzheimer's disease many years before the presentation of
symptoms, it directs the research community's focus on overcoming
specific hurdles to faster progress in addressing this disease.
It is vitally important that NIH continues to build upon these and
many other promising advances. The Alzheimer's Association and AIM urge
Congress to fund the research targets outlined in the Professional
Judgment Budget by supporting an additional $425 million for NIH
Alzheimer's funding in fiscal year 2019.
A disease-modifying or preventive therapy would not only save
millions of lives but would save billions of dollars in healthcare
costs. Specifically, if a treatment became available in 2025 that
delayed onset of Alzheimer's for 5 years (a treatment similar in effect
to anti-cholesterol drugs), savings would be seen almost immediately,
with Medicare and Medicaid saving a cumulative $535 billion in the
first 10 years.\3\
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\3\ Changing the Trajectory of Alzheimer's Disease: How a Treatment
by 2025 Saves Lives and Dollars: http://www.alz.org/documents_custom/
trajectory.pdf.
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conclusion
The Alzheimer's Association and AIM appreciate the steadfast
support of the Subcommittee and its priority setting activities. We
thank the Subcommittee and Congress for including an historic $414
million increase for Alzheimer's research activities at NIH in fiscal
year 2018. However, the current funding level is still short of the
total funding scientists believe is needed to meet the goal of finding
a treatment or cure for Alzheimer's and other dementias by 2025. 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 enactment of
the Alzheimer's Accountability Act (Public Law 113-235) with an
additional $425 million for Alzheimer's research activities at NIH in
fiscal year 2019.

[This statement was submitted by Robert Egge, Chief Public Policy
Officer,
Alzheimer's Association and Alzheimer's Impact Movement.]
______

Prepared Statement of the American Academy of Family Physicians
On behalf of the American Academy of Family Physicians,
representing 131,400 family physicians and medical students, I submit
this testimony. Family physicians conduct approximately one in five of
the total medical office visits in the United States annually--more
than any other specialty. Family physicians provide comprehensive,
evidence-based, and cost-effective care and are essential to improving
the health of patients, families and communities.
Family physicians depend on your Committee to provide funding
levels necessary for the essential public health programs which support
family physician workforce development, provide access to primary care
to patients of all ages, generate the primary care research needed to
improve efficacy and safety, and strengthen our Nation's disease
prevention and health promotion efforts. We recommend that the
Committee provide the following appropriations for programs important
to family physicians and our patients.
We strongly urge that you restore the discretionary budget
authority for the Health Resources and Services Administration (HRSA)
to the fiscal year 2010 level adjusted for inflation of $8.56 billion;
provide $454 million in budget authority for the Agency for Healthcare
Research and Quality (AHRQ); $4 billion to the Centers for Medicare &
Medicaid Services (CMS) for program management; $8.445 billion to the
Centers for Disease Control and Prevention (CDC); and at least $5.2
billion to the Substance Abuse & Mental Health Services Administration
(SAMHSA).
We will highlight the following HRSA programs which are priorities
for the AAFP:
Title VII, Sec. 747 Primary Care Training & Enhancement--$59 Million
The AAFP is grateful to the Committee for increasing by $10 million
in fiscal year 2018 the appropriation for the Primary Care Training &
Enhancement (PCTE) program authorized by Title VII, of the Public
Health Service Act of 1963 and administered by HRSA. PCTE grants were
found to be ``a crucial, but often overlooked, factor in facilitating
scholarly activity in departments of family medicine'' in a study
published in Family Medicine [http://www.stfm.org/FamilyMedicine/
Vol48Issue6/Morley452]. These grants are essential to meeting the
increased demand for family physicians and other primary care
physicians. The AAFP urges the Committee to increase the appropriation
to $59 million in fiscal year 2019.
National Health Service Corps--$330 Million
The National Health Service Corps (NHSC), administered by HRSA,
plays a vital role in addressing the challenge of regional health
disparities arising from physician workforce shortages by offering
financial assistance to recruit and retain primary care physicians and
other healthcare clinicians to meet the workforce needs of communities
designated as health professional shortage areas. The Bipartisan Budget
Act (PL 115-123) extended the trust fund for the NHSC of $310 million
in fiscal year 2019. We commend the Committee for providing the NHSC
with an additional discretionary appropriation of $105 million in
fiscal year 2018 to expand substance use disorder (SUD) treatment and
support the Rural Communities Opioid Response initiative. The AAFP is
committed to supporting the objectives of the NHSC in assisting
communities in need of family physicians for their comprehensive
primary care including appropriate SUD treatment, and we ask that the
Committee support a program level, either appropriated or mandatory
funding, of at least $330 million for the NHSC.
Office of Rural Health Policy--$175.3 Million
The programs administered by HRSA's Office of Rural Health Policy
work to reduce the unique obstacles faced by physicians and patients in
rural areas. Data from the U.S. Census Bureau's American Community
Survey shows that 19.3 percent of the population (about 60 million
people) lives in rural areas. Access to high quality healthcare
services for rural Americans continues to be dependent upon an adequate
supply of rural family physicians who perform about 42 percent of the
visits that Americans in rural areas make to their physicians each
year. The AAFP strongly supports an increased investment in the Office
of Rural Health Policy. We ask that the Committee provide at least
$175.3 million for the Office of Rural Health Policy to support Rural
Outreach Network Grants, Rural Health Research, State Offices of Rural
Health, Rural Opioid Reversal Grants, Rural Hospital Flexibility
Grants, and Telehealth.
Title X--$286.5 Million
The AAFP supports continued funding for the Title X Federal grant
program dedicated to providing women and men with comprehensive family
planning and related preventive health services. The AAFP strongly
recommends adequate funding to support Title X clinics which offer
necessary screening for sexually transmissible infections, cancer
screenings, HIV testing, and contraceptive care of $286.5 million in
fiscal year 2019.
Agency for Healthcare Research and Quality--$454 Million
The Agency for Healthcare Research and Quality (AHRQ) has released
early findings from EvidenceNOW, a multimillion dollar initiative to
help primary care practices across the country more rapidly improve the
heart health of Americans. This $112 million grant-funded initiative is
the largest primary care research investment in the agency's history.
The Annals of Family Medicine [http://www.annfammed.org/content/16/
Suppl_1] April 2018 supplement published original research articles, an
overview and rationale from AHRQ, and commentaries from nationally
recognized experts. EvidenceNOW is aligned with the HHS Million Hearts
initiative and is aimed at reducing the research-to-practice delay in
implementing best practices to deliver the ABCS of cardiovascular
disease prevention: aspirin in high-risk individuals, blood pressure
control, cholesterol management, and smoking cessation. The multi-State
EvidenceNOW initiative engaged 1,500 small- to medium-sized primary
care practices and nearly 8 million patients. AHRQ also convenes the
U.S. Preventive Services Task Force which is vital in primary care in
making evidence-based recommendations after a rigorous examination of
peer-reviewed data. The AAFP urges budget authority of no less than
$454 million for AHRQ.
Centers for Medicare & Medicaid Services Program Management--$3.7
Billion
CMS plays a crucial role in the healthcare of over 125 million
Americans enrolled in Medicare, Medicaid, and in the Children's Health
Insurance Program and also regulates private insurance coverage in the
Marketplace. The AAFP recognizes the need for CMS to have adequate
resources to manage these programs at a time when the agency continues
to implement MACRA which prompted the ongoing transformation of the
Medicare program to a system based on quality and healthy outcomes. The
AAFP recommends that the Committee provide CMS with at least $3.7
billion for program management to allow the agency to manage the
complex implementation of MACRA.
Centers for Disease Control and Prevention--$8.445 Billion
Family physicians are dedicated to treating the whole person to
integrate the care of patients of all genders and every age. In
addition to diagnosing and treating illness, they provide preventive
care, including routine checkups, health risk assessments, immunization
and screening tests, and personalized counseling on maintaining a
healthy lifestyle. CDC Chronic Disease Prevention and Health Promotion
funding helps with efforts to prevent and control chronic diseases and
associated risk factors and reduce health disparities. We ask that the
Committee provides at least $1.17 billion for CDC Chronic Disease
Prevention and Health Promotion.
The CDC also plays a pivotal role in increasing rates of
immunization. Vaccines have proven to be a public health success by
reducing the incidence of infectious disease and nearly eliminating
many deadly threats. Recent outbreaks point to the need to remain
vigilant regarding our Nation's infectious disease efforts. The AAFP
supports programs, such as the CDC's National Center for Immunization
and Respiratory Diseases (IRD) 317 immunization program, which provides
surveillance, prevention, and outbreak support. We request at least
$798.4 million for CDC's IRD line.
The AAFP appreciates that the Committee clarified the CDC's
authority to conduct research on the causes of gun violence, and we
recommend that you provide the CDC with $50 million in fiscal year 2019
to conduct public health research into firearm morbidity and mortality
prevention.
Substance Abuse & Mental Health Services Administration--$5.2 Billion
The AAFP is committed to addressing opioid misuse at both the
national and grassroots levels and supports SAMHSA's mission to reduce
the impact of substance abuse and mental illness on America's
communities. Family physicians continue working to destigmatize
medication-assisted treatment and supporting State and national
partnerships to improve the functionality, utility, and
interoperability of prescription drug monitoring programs (PDMP).
proposed rescissions to fiscal year 2018 appropriations
Last March, the AAFP commended the passage of the Consolidated
Appropriations Act, 2018 (PL 115-141) which maintained the strength of
the healthcare system's infrastructure by making an important
investment of $88 billion, an $10 billion increase over fiscal year
2017, for the Department of Health and Human Services. However, we were
deeply disappointed that the Administration proposed to rescind $7
billion from the Children's Health Insurance Program (CHIP), $800
million from the Center for Medicare and Medicaid Innovation (CMMI),
and $220 million from HHS departmental management.
CHIP is vital access to healthcare coverage for nearly 9 million
children. Since its creation in 1997, CHIP has allowed States to expand
health coverage voluntarily to children in families with incomes too
high to qualify for traditional Medicaid but too low to afford private
health insurance. Recently, the Congress allowed CHIP funding to lapse
forcing States to request millions in emergency funding to keep
children covered.
CMMI is uniquely charged with developing and piloting healthcare
payment reforms to advance patient-centric care delivery to improve
quality and lower costs for individuals and payers, which include the
Federal Government. The AAFP believes a healthcare system built on a
foundation of comprehensive and continuous primary care is best
positioned to achieve these important goals. The work of CMMI is
critical to moving toward Advanced Alternative Payment Models, as
envisioned under the Medicare Access and CHIP Reauthorization Act of
2015 (MACRA, PL 114-10), to test and prove the value of the Advanced
Primary Care Alternative Payment Model (APC-APM).
The AAFP designed the APC-APM to improve patient choice, expand
primary care physicians' access to APMs--including small, independent,
and rural practices. The AAFP has submitted the APC-APM for
consideration by the Physician-Focused Payment Model Technical Advisory
Committee established by Congress in MACRA.
The model builds on the existing Comprehensive Primary Care (CPC)
classic and CPC+ programs, moves further away for fee-for-service
(FFS), better supports small and independent practices, and reduces
administrative burdens.
We urge Congress to reject the Administration's proposed HHS
rescissions which threaten the good and important work of the
Department.
In conclusion, the AAFP thanks the Committee for its support for
these key investments. They will make our country stronger by
supporting our primary care workforce and public health system.

[This statement was submitted by Michael Munger, MD, FAAFP,
President, American Academy of Family Physicians.]
______

Prepared Statement of the American Academy of Pediatrics
The American Academy of Pediatrics (AAP), a non-profit professional
organization of 66,000 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 2019 and beyond.
AAP urges all Members of Congress to put children first when
considering short and long-term Federal spending decisions, and
supports funding levels for the following programs: $3 million for
Reducing Underage Drinking Through Screening and Brief Intervention,
$10 million for Pediatric Mental Health Care Access Grants, $5 million
for Screening for Maternal Depression, $24.506 million for Emergency
Medical Services for Children, $150.56 million for National Center for
Birth Defects and Developmental Disabilities, $35 million for Lead
Poisoning Prevention, $50 million for Gun Violence Prevention Research,
$120 million for Child Abuse Prevention and Treatment Act State Grants,
$226 million for Global Immunization including Polio and Measles/Other,
and $208.2 million for Global Public Health Protection including Global
Health Security.
Adolescent Substance Use Screening and Brief Intervention
(SAMHSA)
Adolescent substance use, including opioid use and underage
drinking poses the risk of immediate, devastating consequences and the
potential for long-term negative effects. New research clearly makes
the case that the developing brains of adolescents make them
particularly vulnerable to addiction. Opioid and alcohol use among
adolescents is associated with violence, decreased academic
performance, and risky sexual behaviors. Screening, brief intervention,
and referral to treatment (SBIRT) specifically developed for the
pediatric population has been shown to delay or reduce alcohol
involvement in this population, and multiple agencies have recommended
that SBIRT be a part of routine healthcare screening. This program
provides grants to train pediatric providers to use screening and brief
intervention to reduce underage drinking.
Fiscal Year 2019 Request: $3 Million.
Pediatric Mental Health Care Access Grants (HRSA)
The AAP appreciates the $10 million in the fiscal year 2018 omnibus
and urges Congress to maintain funding at $10 million in fiscal year
2019 for the Pediatric Mental Health Care Access Grants established in
the 21st Century Cures Act. This grant program supports the development
of new statewide or regional pediatric mental healthcare telehealth
access programs, as well as the improvement of already existing
programs. Research shows pervasive shortages of child and adolescent
mental/behavioral health specialists throughout the U.S. Integrating
mental health and primary care has been shown to substantially expand
access to mental healthcare, improve health and functional outcomes,
increase satisfaction with care, and achieve costs savings. For
children, integrating mental telehealthcare into primary care settings
simply makes sense, as it is a setting where families regularly obtain
care for their children.
Fiscal Year 2019 Request: $10 Million; Fiscal Year 2018 Level: $10
Million.
Screening for Maternal Depression (HRSA)
The AAP thanks the committee for providing $5 million in funding in
fiscal year 2018 for the Screening and Treatment for Maternal
Depression grant program authorized in the 21st Century Cures Act.
These grants will serve to establish, improve, or maintain programs
that increase screening, assessment, and treatment services for
maternal depression for women who are pregnant or have given birth
within the preceding 12 months. Maternal depression can lead to
increased costs of medical care, inappropriate medical care, child
abuse and neglect, discontinuation of breastfeeding, family
dysfunction, and may adversely affect early brain development in
children.
Fiscal Year 2019 Request: $5 Million; Fiscal Year 2018 Level: $5
Million.
Emergency Medical Services for Children (HRSA)
The AAP appreciates the $2.172 million increase in funding for the
Emergency Medical Services for Children (EMSC) Program in fiscal year
2018. Established by Congress in 1984 and last reauthorized in 2015 for
5 years, the EMSC Program is the only Federal program that focuses
specifically on improving the pediatric components of the emergency
medical services (EMS) system. EMSC aims to ensure that state of the
art emergency medical care for the ill and injured child or adolescent
pediatric services are well integrated into an EMS system backed by
optimal resources, and that the entire spectrum of emergency services
is provided to children and adolescents no matter where they live,
attend school, or travel. The EMSC program helps to address persistent
gaps in providing quality care to children in emergencies, helps reduce
pediatric mortalities due to serious injury, and supports rigorous
multi-site clinical trials through the Pediatric Emergency Care Applied
Research Network (PECARN).
Fiscal Year 2019 Request: $24.506 Million; Fiscal Year 2018 Level:
$22.334 Million.
National Center for Birth Defects and Developmental
Disabilities (CDC)
The AAP applauds the $3 million increase in fiscal year 2018 for
the National Center for Birth Defects and Developmental Disabilities
(NCBDDD), a center within CDC that seeks to promote the health of
babies, children, and adults and enhance the potential for full,
productive living. According to the CDC, birth defects affect 1 in 33
babies and are a leading cause of infant death in the United States;
the center has done tremendous work in the way of identifying the
causes of birth defects and developmental disabilities, helping
children to develop and reach their full potential. The center also
conducts important research on fetal alcohol syndrome, infant health,
autism, attention deficit and hyperactivity disorders, congenital heart
defects, and other conditions like Tourette Syndrome, Fragile X, Spina
Bifida and Hemophilia. NCBDDD supports extramural research in every
State and has played a crucial role in the country's response to the
Zika virus. The Center is doing important work monitoring and tracking
mothers and babies with confirmed exposure to the Zika virus and we
believe this important work needs to be continued for the foreseeable
future.
Fiscal Year 2019 Request: $150.6 Million; Fiscal Year 2018 Level:
$140.56 Million.
Lead Poisoning Prevention Program (CDC)
The Academy appreciates the $18 million increase for the Lead
Poisoning Prevention Program, as there is no safe level of lead
exposure in children. Lead damage can be permanent and irreversible,
leading to increased likelihood for behavior problems, attention
deficit and reading disabilities, and a host of other impairments to
developing cardiovascular, immune, and endocrine systems. Today,
approximately 500,000 children are exposed to unacceptably high levels
of lead, and prevention efforts are critical to protect children from
its harmful effects. The crisis in Flint, MI is a tragic inflection
point in the ongoing issue of vulnerable communities facing lead
exposure, with lifelong health effects. Adequate funding for prevention
efforts can help screen more children, identify those in need of
follow-up services, and help reduce the impact of lead on children.
Fiscal Year 2019 Request: $35 Million; Fiscal Year 2018 Level: $35
Million.
Gun Violence Prevention Research (CDC)
In 2016, there were over 38,000 U.S. firearm-related fatalities.\1\
Federally funded public health research has a proven track record of
reducing public health-related deaths, whether from motor vehicle
crashes, smoking, or Sudden Infant Death Syndrome. This same approach
should be applied to increasing gun safety and reducing firearm-related
injuries and deaths, and CDC research will be as critical to that
effort as it was to these previous public health achievements. The
dearth of research on how best to prevent morbidity and mortality from
firearm-related injuries and deaths makes it difficult to implement a
public health approach to addressing this public health problem.
Without dedicated funding, CDC is unable to research solutions to
prevent unintended firearm injuries and fatalities, firearm-related
suicides, or the next school shooting. The request of $50 million for
fiscal year 2019 could support the creation of 10 to 20 new, large
multi-year studies each year (or even more single-year studies) and the
rebuilding of a research community that has shrunk in the decades since
the Dickey Amendment.
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\1\ https://www.cdc.gov/nchs/pressroom/sosmap/firearm_mortality/
firearm.htm.
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Fiscal Year 2019 Request: $50 Million; Fiscal Year 2018 Level: N/A.
Child Abuse Prevention and Treatment Act (CAPTA) Title I
State Grants (ACF)
CAPTA is the only Federal law dedicated to primary prevention of
child abuse. This critical law is underfunded, and States need
additional CAPTA resources to meet the needs of their communities.
CAPTA also requires States to refer families to child welfare services
if an infant is identified at birth as affected by prenatal substance
exposure, withdrawal symptoms, or a Fetal Alcohol Spectrum Disorder.
This provision was amended by the Comprehensive Addiction and Recovery
Act of 2016, which expanded State reporting requirements but did not
provide additional funds for development of plans of safe care.
Implementation has had mixed results because of the lack of funding for
these provisions. Plans of safe care follow the best evidence for
treating maternal substance use, including early identification and
screening, appropriate treatment, consistent hospital screening of
mothers and their infants, consistent hospital notifications to the
child welfare system, and information sharing and monitoring across
systems. These expanded requirements represent a major opportunity to
address the child health impact of the opioid epidemic.
Fiscal Year 2019 Request: $120 Million; Fiscal Year 2018 Level: $85.3
Million.
Global Immunization--Polio and Measles/Other (CDC)
Vaccines are one of the most cost-effective and successful public
health solutions available, saving the lives of two to three million
children each year. Vaccines are among the safest medical products
available. The CDC provides countries with technical assistance and
disease surveillance support, with a focus on eradicating polio,
reducing measles deaths, and strengthening routine vaccine delivery.
Global mortality attributed to measles, one of the top five diseases
killing children, declined by 79 percent between 2000 and 2015 thanks
to expanded immunization, saving an estimated 20.3 million lives. A
global immunization campaign has reduced the number of polio cases by
more than 99 percent since 1988. However, until the world is free of
measles and polio, all children, even those in the United States,
remain at risk. In 2014, the U.S. experienced 668 measles cases in 27
States, in part due to unvaccinated travelers importing the virus from
parts of the world where it remains common. Only two countries had
indigenous transmission of wild polio virus in 2017: Afghanistan and
Pakistan. We must complete polio eradication or face a potential global
resurgence, which could result in as many as 200,000 cases of polio
annually within a decade.
Fiscal Year 2019 Request: $226 Million Including $176 Million for Polio
and $50 Million for Measles/Other; Fiscal Year 2018 Level: $226
Million Including $176 Million for Polio and $50 Million for
Measles/Other.
Global Public Health Protection, Including Global Health
Security (CDC)
As pediatricians caring for America's children, we know that what
happens in other countries has an impact on the health of children and
families here at home, as well as on Americans living, traveling, and
deployed overseas. U.S. programs help endemic countries build public
health infrastructure and prepare for disease outbreaks before they
reach the United States. For example, the CDC Global Disease Detection
program has helped more than 55 countries respond to over 1,900
outbreaks and public health emergencies since 2006, including Ebola,
Zika, and Pandemic Flu, and its emergency response centers have led to
the detection of 12 previously unknown pathogens. We urge the Committee
to strengthen its support for Global Health Security and to require
agencies to continue to report on their progress, as directed in the
fiscal year 2018 Omnibus.
Fiscal Year 2019 Request: $208.2 Million; Fiscal Year 2018 Level:
$208.2 Million.
There are many ways Congress can help meet children's needs and
protect their health and well-being. Adequate funding for children's
health programs is one of them. 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 2019 and beyond. If we
may be of further assistance, please contact the AAP Department of
Federal Affairs at [email protected]. Thank you for your consideration.

[This statement was submitted by Colleen Kraft, MD, FAAP,
President, American Academy of Pediatrics.]
______

Prepared Statement of the American Alliance of Museums
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for allowing me to submit this testimony. My
name is Laura Lott and I serve as President and CEO of the American
Alliance of Museums (AAM). I respectfully request that the subcommittee
make a renewed investment in museums in fiscal year 2019. I urge you to
provide the Office of Museum Services (OMS) within the Institute of
Museum and Library Services (IMLS) with at least $38.6 million, its
most recent authorized level. I want to express gratitude for the $34.7
million in funding for OMS in fiscal year 2018. This small program is a
vital investment in protecting our Nation's cultural treasures,
educating students and lifelong learners, and bolstering local
economies around the country.
Representing more than 35,000 individual museum professionals and
volunteers, institutions--including aquariums, art museums, botanic
gardens, children's museums, cultural museums, historic sites, history
museums, maritime museums, military museums, natural history museums,
planetariums, presidential libraries, science and technology centers,
and zoos--and corporate partners serving the museum field, the Alliance
stands for the broad scope of the museum community.
Museums are economic engines and job creators: According to Museums
as Economic Engines: A National Report, U.S. museums support more than
726,000 jobs and contribute $50 billion to the U.S. economy per year.
The economic activity of museums generates more than $12 billion in tax
revenue, one-third of it going to State and local governments. For
example, the total financial impact that museums have on the economy in
Missouri is $852 million, including 13,653 jobs. For Washington it is a
$1.01 billion impact supporting 14,145 jobs. This impact is not limited
to cities: more than 25 percent of museums are in rural areas.
Museums spend more than $2 billion yearly on education activities;
the typical museum devotes 75 percent of its education budget to K-12
students, and museums receive approximately 55 million visits each year
from students in school groups. Children who visited a museum during
kindergarten had higher achievement scores in reading, math and science
in third grade than children who did not, including children most at
risk for delays in achievement. Also, students who attended a half-day
field trip to an art museum experienced an increase in critical
thinking skills, historical empathy and tolerance. For students from
rural or high-poverty regions, the increase was even more significant.
Museums help teach the State and local curriculum in subjects ranging
from art and science to history, civics, and government. Museums have
long served as a vital resource to homeschool learners. For the
approximately 1.8 million students who are homeschooled--a population
that has increased by 60 percent in the past decade--museums are quite
literally the classroom. It is not surprising that in a 2017 public
opinion survey, 97 percent of respondents agreed that museums were
educational assets in their communities. The results were statistically
identical regardless of political persuasion or community size.
IMLS is the primary Federal agency that supports museums, and OMS
awards grants in every State to help museums digitize, enhance and
preserve collections; provide teacher professional development; and
create innovative, cross-cultural and multi-disciplinary programs and
exhibits for schools and the public. The fiscal year 2018 appropriation
of $34.7 million, while a most welcome funding increase, still falls
below its recent high of $35.2 million in fiscal year 2010. We applaud
the 40 bipartisan Senators who wrote to you in support of fiscal year
2019 OMS funding.
Here are just two examples of how IMLS funding was used in 2017 to
support museums' work in your communities:

--The Nelson-Atkins Museum of Art in Kansas City, Missouri, received
a $384,532 Museums for America grant to research and implement
a rich array of public offerings through the Deaf Culture
Project, as well as to hire a Coordinator for the Deaf Culture
Program. ``One of the core principles of the Nelson-Atkins
strategic plan is attracting all our constituents with focused
and effective communications and outreach,'' said Julian
Zugazagoitia, Menefee D. and Mary Louise Blackwell CEO &
Director of the Nelson-Atkins in a recent press release.
``Engaging our visitors who are Deaf or hard of hearing will
deepen and broaden our mission, building relationships and
expanding involvement.''

The Nelson-Atkins will create a suite of interrelated activities
designed to build engagement and learning among visitors who
are Deaf, empowering them to participate in the museum's
collections and programs. ``We are excited to have the
opportunity to collaborate with community stakeholders and
partner organizations such the Museum of Deaf History, Arts and
Culture, The Whole Person, and the Kansas School for the
Deaf,'' said Christine Boutros, Manager, Community & Access
Programs. ``This is a project that will not only increase
access to the collection for Deaf and hard of hearing
populations in Kansas City, but will also build general
audience understanding and appreciation for Deaf culture,
American Sign Language, and the diversity of experiences and
identities of people who are Deaf and hard of hearing.''

This program builds on a 2015 initiative, in which the Nelson-
Atkins formed an Advisory Committee for Accessibility to work
with people with disabilities. Other programs arising from this
committee include Low Sensory Mornings and Relating to Art, and
current tactile tours have been revamped. The Deaf Culture
Project will be developed with Deaf and hard of hearing
communities across greater Kansas City and will provide a model
for museums around the country. Over the coming months, the
museum will work to identify and understand what programs,
approaches, and strategies would have the greatest and most
positive impact. Focus groups will discuss opportunities,
challenges, and benefits that will inform project planning and
development.

--The Children's Museum of Tacoma, Washington, received a $499,994
Museums for America award to develop and pilot programs and
fabricate exhibits for a satellite location on Joint Base
Lewis-McChord. ``Play is on Base'' will strengthen the museum's
position as a community anchor by increasing its capacity to
engage and serve the region's military families. The museum and
the military base will collaborate closely, engage additional
community organizations, and work with the intended audience to
create exhibits and programs tailored to meet the unique needs
of military families, especially those whose children have
special needs. Project activities also will include
professional development for staff and volunteers to build the
knowledge and strategies needed to work with the target
audiences. An external evaluator will develop a comprehensive
evaluation plan and related tools to ensure exhibits and
programs are meeting organizational goals as well as audience
needs. The project will contribute to the creation of a model
for partnerships between children's museums and military
installations across the country.
In addition to these examples, I want to share with you an excerpt
from the powerful live public witness testimony provided on April 26,
2018 to the House Appropriations Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies by Dr. Michael A.
Mares, Director of the Sam Noble Museum of Natural History at the
University of Oklahoma:

``I am proud that my museum has benefitted from OMS grants: The
museum was founded by the Territorial Legislature in 1899, 4
years after the last Land Run. The Legislature directed the
museum to develop collections, interpret Oklahoma's natural and
cultural heritage, and bring the world to Oklahoma. The
collections grew rapidly: dinosaurs, fossils, Native American
artifacts, natural history specimens--a record of life over a
billion years of time.

In 1981 the museum was struggling to survive, but there were people
who believed that Oklahoma deserved better, including IMLS,
which helped the museum with funding for personnel,
collections, and programs over 4 decades. This support helped
sustain the drive for a new museum that became a reality in
2000. In 2003, the museum was awarded the national award for
conservation for saving the heritage of the State of Oklahoma.

With a recent award of $123,132, the museum developed traveling
Discovery Kits for students and teachers across cities and
rural parts of Oklahoma. All curricula are aligned with
educational standards and feature age-specialized K-12 content
focusing on geologic, life and cultural sciences relevant to
the State. The kits and curriculum feature museum teaching
collections and specimens. Kits contain multimedia resources to
engage students with local scientists including video of museum
scientists in the field, scientific investigations and videos
from inside the collections. In addition, all content has been
digitized and made available to the public at no cost. Through
this project, the museum addresses the lack of high-quality
STEM curricula and natural history science available in
Oklahoma. At the completion of the project, the museum will
have produced a tested body of curricula relevant to Oklahoma's
K-12 teachers that will increase availability and accessibility
of exceptional science resources for all students. Our programs
are changing the lives of Oklahoma's young people--children who
would have had few opportunities to do something unique without
the museum's programs.

A recent OMS grant of $128,863 allowed the museum to improve the
stewardship and long-term preservation of its frozen tissue
collection--a collection that was vulnerable to catastrophic
loss in a disaster prone region. The project will facilitate
the use of genetic resources in research and teaching
worldwide, and provide educational experiences for
undergraduates, K-12 teachers and students through training and
outreach.

Being recognized with an IMLS National Medal for Museum Service in
2014, the Nation's highest honor for museums, has been a great
honor for the Sam Noble Museum and for me as director. It has
opened doors for the museum nationally and internationally. In
2015, the museum was inducted into the Club of Excellence by
the European Heritage Association. And, in 2017, our Native
American language program, which is saving Native languages,
was selected as the outstanding international educational
program by the University Museums and Collections
association.''
IMLS grants to museums are highly competitive and decided through a
rigorous peer-review process. Even the most ardent deficit hawks ought
to view the IMLS grant-making process as a model for the Nation. It
should be noted that each time a museum grant is awarded, additional
local and private funds are also leveraged. In addition to the dollar-
for-dollar match generally required of museums, grants often spur more
giving by private foundations and individual donors. Two-thirds of
Museums for America grantees report that their grant encouraged
additional private funding. In fiscal year 2017, the OMS received 962
applications requesting nearly $165 million, but current funding ($31.7
in fiscal year 2017) has allowed the agency to fund only a small
fraction of the highly-rated grant applications it receives.
Please consider this request in the context of the essential role
that museums play in our Nation, as well as their immense economic and
educational impact. In closing, I highlight 2017 national public
opinion polling that shows that 95 percent of voters would approve of
lawmakers who acted to support museums and 96 percent want Federal
funding for museums to be maintained or increased. People love museums.
If I can provide any additional information, I would be delighted to do
so. Thank you again for the opportunity to submit this testimony.

[This statement submitted by Laura L. Lott, President and CEO,
American
Alliance of Museums.]
______

Prepared Statement of the American Association for Cancer Research
The American Association for Cancer Research (AACR) is the world's
first and largest scientific organization focused on every aspect of
high-quality, innovative cancer research. The mission of the AACR and
its more than 40,000 members is to prevent and cure cancer through
research, education, communication, collaboration, research funding and
advocacy. The AACR calls on Congress to provide at least $39.3 billion
for the National Institutes of Health (NIH) in fiscal year 2019,
including a commensurate increase for the National Cancer Institute
(NCI). Furthermore, we encourage Congress to appropriate in full the
$400 million designated in fiscal year 2019 for the Beau Biden Cancer
Moonshot through the 21st Century Cures Act. Keeping the NIH and the
NCI on a path of sustained, robust, and predictable funding growth is
the only way we will seize the unparalleled scientific opportunities in
cancer research that lie before us, and the only way we will overcome
the challenges we face in conquering this complex disease.
We thank the United States Congress for its longstanding,
bipartisan support for the NIH and for its commitment to funding cancer
research. We especially thank Senate Appropriations Subcommittee on
Labor, Health and Human Services (HHS), and Education Chairman Roy
Blunt and Ranking Member Patty Murray for their unwavering support for
the NIH. Under their leadership for the past three fiscal years, the
NIH budget has increased by a remarkable 23 percent. Because Congress
has made medical research a national priority, Federal funding for this
lifesaving work is increasing our ability to save and improve the lives
and health of millions of Americans.
A Unique Moment for Cancer: Supporting the National Cancer ``Moonshot''
Initiative
We live in an extraordinary time of scientific opportunity in the
field of cancer research. The AACR looks forward to continuing to work
with Congress to accelerate progress against the more than 200 diseases
we call cancer. To that end, the AACR continues to strongly support the
Beau Biden Cancer Moonshot Initiative. With a bold goal to
significantly speed progress against cancer, this initiative both
supports and builds upon the strong, basic science foundation that has
been established, and is helping to translate exciting scientific
discoveries into improved therapies for cancer patients. Nowhere is
this more evident than in genomics, immuno-oncology and precision
medicine, areas in which cancer research has been leading the way for
more than a decade. A continued commitment to the NIH and the NCI is
required to move this initiative forward, in addition to continued
support for other cross-cutting NIH programs such as the All of Us
Research Program.
Investments in Cancer Research are Saving and Improving Lives
Significant progress has been made against cancer because of
decades of Federal investment in medical research and the dedicated
work of researchers, physician-scientists, and patient advocates
throughout the biomedical research ecosystem. Federal support has
cultivated new and improved approaches to the prevention, detection,
diagnosis, and treatment of cancer, and investments in basic research
have enabled scientists to capitalize on our understanding of what
causes and drives cancer. As is detailed in the AACR Cancer Progress
Report 2017, support from the NIH and the NCI for basic, translational,
and clinical research has led to decreases in the incidence of many
cancers, cures for a number of these diseases, and higher quality and
longer lives for many individuals whose cancers cannot yet be prevented
or cured.
One of the most exciting recent breakthroughs in cancer research
has been the ability to harness the power of a patient's own immune
system to fight cancer, leading to the development of immunotherapies.
The concept of immunotherapy as a means to target cancer cells is not
new, but we now have achieved the ability to effectively translate
decades of knowledge about the immune system into revolutionary
advances in patient care. In 2017 alone, the FDA approved the first
immunotherapy to treat liver cancer, as well as the first gene
modification therapy that changes a patient's own T cells in the lab to
make them more effective against cancer. NIH-funded research was
integral to the development of these innovative new therapies.
Perhaps most illustrative of our progress is the fact that there
are now an estimated 15.5 million cancer survivors living today in the
United States, and this number is expected to grow to 20.3 million by
the year 2026. These remarkable achievements would never have been
possible without a national commitment to funding cancer research,
screening, and treatment programs at the NCI, NIH, and other agencies.
We can continue to make significant advances, but only if we redouble
our efforts to ensure the Federal resources are there to continue, and
increase, the pace of progress.
In addition to improving health and saving lives, cancer research
and biomedical science also serves as one of our country's primary
paths to innovation, global competitiveness, and economic growth.
According to United for Medical Research, NIH funding directly and
indirectly supported more than 402,000 jobs in 2017 alone, and
generated more than $68.8 billion in new economic activity.
Lastly, conquering cancer is important to the American public. In a
poll of likely voters commissioned by the One Voice Against Cancer
Coalition this year, 73 percent of respondents were supportive of
Congress' decision to increase NIH funding by $3 billion in fiscal year
2018, and 92 percent of those polled said it is extremely or very
important for the Federal Government to support medical research to
find cures for diseases like cancer.
Cancer Remains a Significant Public Health Challenge
Even in the face of the promise and progress highlighted above,
cancer remains a formidable opponent. An estimated 1.7 million
Americans will be diagnosed with cancer this year, and 1 in every 3
women and 1 in every 2 men will likely develop cancer in their
lifetimes. It is also projected that more than 609,000 people will die
this year in the U.S. from cancers. According to most recent NCI Report
to the Nation, there are several cancers for which 5-year survival
rates are still very low, including lung and bronchus cancer (18.6
percent), cancer of the liver and intrahepatic bile duct (17.7 percent)
and pancreatic cancer (8.5 percent). Further, racial and ethnic
minorities, as well as low-income, rural and elderly populations,
continue to suffer disproportionately in cancer incidence, prevalence,
and mortality. Because of the steady increase in cancer incidence
rates, which is due in large part to our aging population, continuing
and strengthening our Nation's commitment to cancer research and
biomedical science is more critical now than ever. Increasing the
Federal investment in cancer research and biomedical science will play
a vital role in addressing the current challenges in cancer, while at
the same time curbing the overall annual costs of this devastating
disease. The cost of cancer care in the United States alone is
projected to exceed $157 billion in 2020, while the total economic cost
including disability and lost productivity will be much greater.
Progress Against Cancer Requires a Sustained Commitment to Funding
Our Nation's ability to realize the exciting future that awaits us
in cancer research depends on a continued, strong commitment by
Congress to provide sustained, robust, and predictable funding
increases for the NIH and the NCI. We have reached a point of sustained
progress, at which discoveries are being made at an ever-accelerating
pace. These discoveries are saving lives and bringing enormous hope for
cancer patients, even those with advanced disease. We must seize the
opportunity to continue to invest in our Nation's medical research
ecosystem by providing at least $39.3 billion for the NIH in fiscal
year 2019. This reflects an increase of at least $2 billion for the
NIH's base budget, in addition to funding designated under the 21st
Century Cures Act in fiscal year 2019 for specific initiatives
including the Beau Biden Cancer Moonshot. Fulfilling this request will
ensure that we can continue to transform cancer care, spur innovation
and economic growth, maintain our position as the global leader in
science and medical research, and most importantly, bring hope to
cancer patients and their loved ones everywhere. The AACR looks forward
to working with you to ensure that researchers have the resources they
need to continue to deliver hope to those who are confronting this
dreaded disease.

[This statement was submitted by Margaret Foti, PhD, MD (hc), Chief
Executive Officer, American Association for Cancer Research.]
______

Prepared Statement of the American Association for Dental Research
On behalf of the American Association for Dental Research (AADR), I
am pleased to submit testimony describing AADR's funding requests for
fiscal year 2019, which include at least $39.3 billion for the National
Institutes of Health, including funds provided to the agency through
the 21st Century Cures Act for targeted initiatives, and--within NIH--
$492 million for the National Institute of Dental and Craniofacial
Research (NIDCR).
AADR is grateful to Congress for providing a substantial funding
increase for federally-funded research, including for NIH and NIDCR, in
fiscal year 2018. We recognize this increase was possible due to the
generous new budget cap increases established within the Bipartisan
Budget Act of 2018 passed earlier this year, and we greatly appreciate
the work of members of Congress to enact that legislation and provide
much-needed relief for non-defense programs. Over the years, the
Federal research enterprise has seen losses in purchasing power due to
inflationary losses, sequestration and budget cuts. Fortunately, by
demonstrating the commitment to Federal research via the funding
increases set forth in the fiscal 2018 omnibus, members of Congress are
allowing members of the research community to begin to play catch up
and build on the promise of their work.
NIDCR is the largest institution in the world dedicated exclusively
to research to improve dental, oral and craniofacial health. The health
of the mouth and surrounding craniofacial (skull and face) structures
is central to a person's overall health and well-being. Left untreated,
oral diseases and poor oral conditions make it difficult to eat, drink,
swallow, smile, communicate and maintain proper nutrition. Scientists
also have discovered important linkages between periodontal (gum)
disease and heart disease, stroke, diabetes and pancreatic cancer.
Investments in NIDCR funded research during the past half century have
led to improvements in oral health for millions of Americans through
its impact on areas such as community water fluoridation; the
implementation of dental sealants to reduce cavities in children; and
emerging opportunities to assess the efficacy of a human papilloma
virus (HPV) vaccine for oral and pharyngeal cancers.
As a result of these investments, today over 210 million Americans
are benefiting from community water fluoridation. Absent advances in
oral health research in the fight against dental caries (tooth decay)
and periodontal disease, there would be an additional 18.6 million
Americans aged 45 or older who have lost all of their natural teeth.
Perhaps most striking is that since the 1950s the total Federal
investment in NIH-funded oral health research has saved the American
public at least $3 for every $1 invested.
Despite these improvements, however, treating oral health
conditions remains extremely costly--with the Nation spending $124.4
billion on dental services in 2016. While tooth decay and gum disease
are the most prevalent threats to oral health, complete tooth loss,
oral cancer and craniofacial birth defects, such as cleft lip and
palate, impose massive health and economic burdens on Americans.
Right now, NIDCR is funding research across a range of areas to
continue improving Americans' oral and overall health. These include
point-of-care diagnostics that use saliva to test for conditions and
infections, such as HIV, HPV, substance abuse and oral cancer; e-
cigarette studies to investigate the effects of aerosols from e-
cigarette vapors on the oral microbiome, oral epithelia and wound
healing; a diverse precision medicine portfolio that includes research
on cancer, craniofacial developmental disorders, and salivary
diagnostics; research related to early detection, prevention and
treatment of HPV-related oropharyngeal cancer; and much more.
From a patient perspective, the research at NIDCR has impacted
millions of patients with a wide range of conditions that impede
quality of life, are physically debilitating, and create a major
financial and social burden. NIDCR conducts research on complex
systemic diseases that have a major oral health component, including
TMJ, ectodermal dysplasias and autoimmune disorders, such as Behcet's
and Sjogren's Syndrome, as well as birth defects, such as cleft lip and
cleft palate, which affect roughly 7,000 babies in the United States
each year and are among the most common birth defects. Through its
research into the basic science needed to better understand these
diseases and conditions; the discovery of biomarkers for better
diagnosis and clinical care; and the development of new and improved
tools for management and treatment, NIDCR has provided hope for these
patients and their families and is improving the outlook for future
generations.
As we look toward the future, AADR asks Congress to build upon this
foundation by continuing to provide sustained and adequate investments
across the Federal research continuum. To do this effectively, Congress
will need to work together to develop a long-term solution to our
Nation's debt and deficit that does not rely on cuts to non-defense
discretionary spending and, importantly, pass regular appropriations
bills rather than to rely on the continuing resolutions that have
become so commonplace in our Federal budget process. The increased
dependence on these short-term spending measures not only undermines
the budget process, but it also negatively affects Federal agencies and
programs, including these Federal agencies' grant recipients.
There are a range of repercussions for Federal agencies and those
who depend on them when continuing resolutions take effect. To begin,
continuing resolutions affect Federal grants award funding. NIH, as one
example, often issues non-competing research and research training
grant awards ``at a level below that indicated on the most recent
Notice of Award (generally up to 90 percent of the previously committed
level).'' Additionally, according to a 2009 report on continuing
resolutions from the Government Accountability Office, agencies
reported that these short-term budget measures resulted in
inefficiencies in their work. The inefficiencies cited included an
inability to fill positions, the delay of contracts and increased
workloads as a result of entering into new contracts or exercise
contract options.
This trend--coupled with other macro budget issues, such as
attempts to increase defense spending at the expense of non-defense
discretionary spending--produces additional uncertainty in already
uncertain times for Federal research spending. Our hope is that moving
forward Congress will build on the unprecedented momentum generated in
the fiscal year 2018 omnibus legislation and continue to provide NIH,
NIDCR and other Federal research institutions with predictable and
sustained funding.
Increasing the appropriation for NIDCR will improve the oral health
of the Nation, reduce societal costs of dental care and enhance the
scientific evidence base for the dental profession. Specifically,
increased funding would enable NIDCR to expand its portfolio of work on
immunotherapies for oral cancer; research on cleft lip and cleft
palate; and address oral health disparities among the aging population.
In addition to the research being conducted at NIH, AADR urges you
to fund the full continuum of Federal research--from discovery to
delivery--that will allow us to maximize our investments. Our members
urge you to provide $20 million for the Centers for Disease Control and
Prevention (CDC) Division of Oral Health, $40.673 million for the Title
VII Health Resources and Services Administration (HRSA) programs
training the dental health workforce, $454 million for the Agency for
Healthcare Research and Quality (AHRQ), and $175 million in budget
authority for the National Center for Health Statistics (NCHS).
Thank you for the opportunity to submit this testimony. We stand
ready to answer any questions you may have.

[This statement was submitted by Christopher H. Fox, DMD, DMSc,
Chief
Executive Officer, American Association for Dental Research.]
______

Prepared Statement of the American Association of Colleges of Nursing
As the national voice for academic nursing, the American
Association of Colleges of Nursing (AACN) represents over 500,000
nursing students and more than 45,000 nurse faculty. On behalf of its
814 member schools across the country, AACN thanks the subcommittee for
its leadership, which provided a strong investment in nursing education
and research in the fiscal year 2018 Consolidated Appropriations Act
[Public Law 115-141]. The association respectfully requests that the
subcommittee continue to invest in America's health in fiscal year 2019
by providing $266 million for the Nursing Workforce Development
programs (Title VIII of the Public Health Service Act [42 U.S.C. 296 et
seq.]), administered by the Health Resources and Services
Administration (HRSA), which include the following programs:
--Advanced Nursing Education (Sec. 811), which includes the Advanced
Education Nursing Traineeships and Nurse Anesthetist
Traineeships
--Nursing Workforce Diversity (Sec. 821)
--Nurse Education, Practice, Quality, and Retention (Sec. 831)
--NURSE Corps Loan Repayment and Scholarship Programs (Sec. 846)
--Nurse Faculty Loan Program (Sec. 846A)
--Comprehensive Geriatric Education Program (Sec. 855)
as well as $170 million for the National Institute of Nursing
Research (NINR), within the National Institutes of Health.\1\
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\1\ For fiscal year 2019, the Ad Hoc Group for Medical Research, of
which AACN is a member, requests at least $39.3 billion for the NIH,
including funds provided to the agency through the 21st Century Cures
Act for targeted initiatives. The request level of $170 million for
NINR denotes the same percentage increase for NIH applied to NINR. The
request of $266 million for Title VIII and $170 million for NINR is
supported by 56 organizations within the Nursing Community Coalition.
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As the largest sector of the healthcare workforce, nurses provide
care in a multitude of settings and collaborate with other
professionals to improve health and wellness across the Nation.
Registered Nurses (RNs) and Advanced Practice Registered Nurses
(including Nurse Practitioners, Certified Registered Nurse
Anesthetists, Certified Nurse-Midwives and Clinical Nurse Specialists)
are critical to increasing access and reducing cost, particularly in
rural and underserved areas.
The Demand for Care in Rural and Underserved Communities
As new models and fiscal constraints continue to complicate
America's healthcare system, the need for accessible, high-quality, and
affordable care intensifies. Quality of life for the individual and the
family depends on access to primary care to ensure that basic and
preventative services are met. However, rural and underserved
communities face barriers to receiving the care that they need. HRSA's
national data shows there are currently 7,226 Health Professional
Shortage Areas that are designated as having a shortage of primary care
providers. Additionally, there are 4,242 designated Medically
Underserved Areas/Populations, which may include individuals and
families who face economic, cultural, or linguistic barriers to
healthcare.\2\ A diverse and highly-educated nursing workforce is
needed to match the Nation's cultural and economic trends and meet the
demand for care in these high shortage areas.
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\2\ U.S. Department of Health and Human Services, Health Resources
and Services Administration. (2018) HRSA Data Warehouse Shortage Areas.
Retrieved from https://datawarehouse.hrsa.gov/topics/
shortageAreas.aspx.
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The demand for care is amplified in these communities as the
population continues to age. According to Pew Research Center, from
January 1, 2011 to December 31, 2029, an estimated 10,000 baby boomers
will turn 65 each day.\3\ This is of particular concern due to the
rising rates of chronic illness associated with aging, including heart
disease, stroke, cancer, diabetes, and arthritis. According to the
Centers for Disease Control and Prevention (CDC), approximately half of
all adults across the Nation (117 million individuals) have one or more
chronic health conditions, and one in four adults have two or more.\4\
Moreover, rural and underserved populations are hit just as hard when
dealing with public health crises like the opioid epidemic. The CDC
states that the rate of drug overdose deaths in rural areas is higher
than in urban areas. From 1999 to 2015, death rates due to opioid
overdose in rural populations quadrupled among those 18-25 years old
and tripled for females.\5\
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\3\ Pew Research Center. (2010). Baby Boomers Retire. http://
www.pewresearch.org/fact-tank/2010/12/29/baby-boomers-retire.
\4\ U.S. Department of Health and Human Services, Centers for
Disease Control and Prevention. (2016). Chronic Diseases: The Leading
Causes of Death and Disability in the United States. Retrieved from
https://www.cdc.gov/chronicdisease/overview/.
\5\ U.S. Department of Health and Human Services, Centers for
Disease Control and Prevention. (2017). Rural America in Crisis: The
Changing Opioid Overdose Epidemic. Retrieved from https://
blogs.cdc.gov/publichealthmatters/2017/11/opioids/.
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Preparing a Workforce for Today and Tomorrow's Healthcare Needs
With over four million licensed RNs,\6\ the profession is poised to
serve in rural and underserved communities and be on the frontlines of
public, population, and personalized health. However, while the demand
for nurses varies by State, the national need for RNs is projected to
increase 28 percent by 2030. By that time, seven States (Alaska,
California, Georgia, New Jersey, South Carolina, South Dakota, and
Texas) are expected to have a nursing deficit, four of which will have
a deficit of over 10,000 nurses.\7\ Adding complexity to the shortage
is the fact that nursing schools across the country are struggling to
meet the rising demand to educate all qualified applicants interested
in the profession.\8\ This is why AACN members rely so heavily on the
support of both the Title VIII programs and the NINR grants to bolster
a robust nursing workforce able to implement new science that will
impact positive health outcomes now and in the future.
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\6\ National Council of State Boards of Nursing. (2018). A Profile
of Nursing Licensure in the U.S. Retrieved from https://www.ncsbn.org/
6161.htm.
\7\ U.S. Department of Health and Human Services, Health Resources
and Services Administration. Supply and Demand Projections of the
Nursing Workforce: 2014-2030. Retrieved from https://bhw.hrsa.gov/
sites/default/files/bhw/nchwa/projections/NCHWA_HRSA_Nursing_
Report.pdf?utm_campaign=enews08172017&utm_medium=email&utm_source=govdel
ivery.
\8\ American Association of Colleges of Nursing. (2017). Nursing
Shortage Fact Sheet as of May 18, 2017. Retrieved from http://
www.aacnnursing.org/Portals/42/News/Factsheets/Nursing-Shortage-
Factsheet-2017.pdf.
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The Title VIII Nursing Workforce Development Programs
For the nursing profession, the Title VIII programs have been
effective in meeting their goals of workforce development, recruitment,
retention, and faculty preparation. The programs help to ensure nurses
are practicing in the most rural and underserved communities where care
is in high demand. For example, the Title VIII Advanced Nursing
Education (ANE) program supports graduate nursing education and
practice by funding academic-practice partnerships between academic
institutions and rural and/or underserved primary care practice sites.
In Academic Year 2015-16, the grant supported 10,238 students and
partnered grantees with 2,596 clinical training sites, of which 51
percent were in primary care settings.\11\
Moreover, the Title VIII programs also help to grow a diverse
workforce that helps to address health inequities. Significant ethnic
and racial disparities in healthcare are the result of cultural
differences, little to no access to healthcare, and high rates of
poverty and unemployment. Research shows that health professionals from
underrepresented populations are more likely to serve in
underrepresented and medically underserved areas.\9\ The Title VIII
Nursing Workforce Diversity program is critical in this effort. In
Academic Year 2015-16 alone, the program's grantees provided 9,243
clinical training experiences to students, with approximately half of
the training sites in underserved or primary care settings.\10\ The
compilation of the Title VIII programs are the right programs at the
right time to meet the care demands of the Nation.
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\9\ The Sullivan Commission. (2004). Missing persons: Minorities in
the health professions. A report of the Sullivan Committee on diversity
in the healthcare workforce. Retrieved from http://www.aacnnursing.org/
Portals/42/Diversity/SullivanReport.pdf.
\10\ U.S. Department of Health and Human Services, Health Resources
and Services Administration. (2018). Justification of estimates for
appropriations committees. Retrieved from https://www.hrsa.gov/sites/
default/files/hrsa/about/budget/budget-justification-2018.pdf.
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The National Institute of Nursing Research
The healthcare community continues to investigate methods to
improve the delivery of high-quality care in a financially sustainable
manner. As one of the 27 Institutes and Centers at the NIH, the NINR is
dedicated to providing the evidence base to support nursing practice
and, in many cases, the care of the interprofessional team. Research
conducted at NINR plays an indispensable role in improving the quality
of life for those with chronic illness, and preventing illnesses that
threaten to exacerbate an already over-burdened healthcare system.
Additionally, NINR allocates a generous amount of its overall budget to
the education of nurse researchers,\11\ many of whom dually serve as
nurse faculty within our Nation's nursing schools.
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\11\ National Institutes of Health, National Institute of Nursing
Research. The NINR Strategic Plan: Advancing Science, Improving Lives.
Retrieved from https://www.ninr.nih.gov/sites/www.ninr.nih.gov/files/
NINR_StratPlan2016_reduced.pdf.
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One example of innovative NINR-funded research focuses on improving
health outcomes for older adults, 80 percent of whom live with at least
one chronic condition.\12\ Nursing scientist Marilyn Rantz, PhD, RN,
FAAN, and her team at the University of Missouri developed an
intelligent sensor system that detects health-related symptoms of older
adults and alerts healthcare providers of potential health issues. By
providing early coordinated care of chronic illnesses, older adults can
better maintain their health at home and in their community.
Furthermore, the prospective cost savings of this research is evident,
as early detection would delay the transition of older adults into
nursing homes and reduce spending on hospital stays.
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\12\ National Institutes of Health, National Institute of Nursing
Research (2014). Because of Nursing Research: Supporting Technologies
for Healthy Independent Living. Retrieved from https://
www.ninr.nih.gov/newsandinformation/because-of-nursing-research-
eldertech#--edn1.
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Strong investments in the nursing workforce and research that
translates science into practice ensures that the next generation of
nurses will be prepared for what our patients need most: accessible,
high-quality, cost-effective care. AACN respectfully requests continued
support of the Title VIII Nursing Workforce Development Programs and
the National Institute of Nursing Research to improve America's health.
______

Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
The American Association of Colleges of Osteopathic Medicine
(AACOM) represents the 34 accredited colleges of osteopathic medicine
in the United States. These colleges are accredited to deliver
instruction at 51 teaching locations in 32 states. Six of the colleges
are publicly controlled, and 28 are private institutions. In the
current academic year, these colleges are educating nearly 29,000
future physicians--more than 20 percent of all U.S. medical students.
AACOM strongly supports restoring funding for discretionary Health
Resources and Services Administration (HRSA) programs to $8.56 billion;
funding for key priorities in HRSA's Title VII programs under the
Public Health Service Act, including adequate funding for the Centers
for Excellence (COE), Health Careers Opportunity Program (HCOP),
Scholarships for Disadvantaged Students (SDS) Program, Geriatrics
Education Centers (GECs); $40 million for the Area Health Education
Centers (AHECs) Program; $59 million for the Primary Care Training and
Enhancement (PCTE) Program; $4 million for the Rural Physician Training
Grants; long-term sustainable funding for the Teaching Health Center
Graduate Medical Education (THCGME) Program; at least $330 million in
funding for the National Health Service Corps (NHSC), either
appropriated or mandatory funding; a minimum of $39.3 billion for the
National Institutes of Health (NIH), including funds provided to the
agency through the 21st Century Cures Act for targeted initiatives; and
$454 million in base discretionary funding for the Agency for
Healthcare Research and Quality (AHRQ).
The Title VII health professions education programs, authorized
under 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 programs are the only Federal programs
designed to train primary care professionals in interdisciplinary
settings to meet the needs of medically underserved populations, as
well as increase minority representation in the healthcare workforce.
AACOM supports total funding of $690 million for Title VII and Title
VIII programs.
As the demand for health professionals increases in the face of
impending shortages and the anticipated demand for access to care
increases, these needs strain an already fragile healthcare system.
AACOM appreciates the investments that have been made in these
programs, and we urge the Subcommittee for inclusion and/or continued
support for the following programs: the COE, the HCOP, the SDS Program,
the GECs, the AHECs, the PCTE Program, and the Rural Physician Training
Grants.
The COE Program is integral to increasing the number of minority
youth who pursue careers in the health professions. AACOM supports
adequate funding of the COE Program.
The HCOP provides students from disadvantaged backgrounds with the
opportunity to develop the skills needed to successfully compete,
enter, and graduate from health professions schools. AACOM supports
adequate funding of the HCOP Program.
The SDS Program provides scholarships to health professions
students from disadvantaged backgrounds with financial need, many of
whom are underrepresented minorities. AACOM supports adequate funding
of the SDS Program.
GECs are collaborative arrangements between health professions
schools and healthcare facilities that provide training between health
professions schools and healthcare facilities that provide the training
of health professions students, faculty, and practitioners in the
diagnosis, treatment, and prevention of disease, disability, and other
health issues. AACOM supports adequate funding of the GECs.
The AHEC Program provides funding for interdisciplinary, community-
based, primary care training programs. Through a collaboration of
medical schools and academic centers, a network of community-based
leaders works to improve the distribution, diversity, supply, and
quality of health personnel, particularly primary care personnel in the
healthcare services delivery system, specifically in rural and
underserved areas. AACOM supports a request of $40 million for the AHEC
Program and strongly opposes any effort to eliminate this critical
program.
The PCTE Program provides funding to support awards to primary care
professionals through grants to hospitals, medical schools, and other
entities. AACOM supports a request of $59 million for this important
program.
The Rural Physician Training Grants will help rural-focused
training programs recruit and graduate students most likely to practice
medicine in underserved rural communities. Health professions workforce
shortages are exacerbated in rural areas, where communities struggle to
attract and maintain well-trained providers. According to HRSA,
approximately 59 percent of primary care health professional shortage
areas are rural. AACOM supports the inclusion of $4 million for the
Rural Physician Training Grants.
AACOM continues to strongly support the long-term sustainment of
the THCGME Program, which provides funding to support primary care
medical and dental residents training in community-based settings. The
majority of currently-funded medical residency programs are osteopathic
or dually-accredited (DO/MD). Currently, there are more than 730
residents being trained in 57 HRSA-supported THC residencies in 24
States. According to HRSA, physicians who train in teaching health
centers (THCs) are three times more likely to work in such centers and
more than twice as likely to work in underserved areas. The
continuation of this program is critical to addressing primary care
physician workforce shortages and delivering healthcare services to
underserved communities most in need. AACOM is pleased that Congress
supported this highly successful bipartisan program by extending it for
fiscal years 2018 and fiscal year 2019 through the Bipartisan Budget
Act of 2018 (PL: 115-123). However, stable funding is necessary for the
THCGME Program to continue to expand and increase the number of
physicians that work in communities of need. AACOM strongly supports
the continuation of and permanent funding for the THCGME Program and
will continue to work with Congress to support a sustainable and viable
funding mechanism for the continuation beyond fiscal year 2019.
Furthermore, we strongly support the program's funding continue as
mandatory funding beyond fiscal year 2019.
The NHSC supports physicians and other health professionals who
practice in health professional shortage areas across the U.S. The NHSC
projects that a field strength of more than 15,000 primary care
clinicians will be in health professional shortage areas in fiscal year
2018. While we were pleased to see a 2-year extension of this program
per the Bipartisan Budget Act of 2018 (PL: 115-123), stable funding is
necessary for the continuation of this critically effective program.
Therefore, AACOM supports the stability of the NHSC by requesting
either appropriated or mandatory funding, of at least $330 million for
the NHSC.
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 supports a funding level of at
least $39.3 billion for the NIH, including funds provided to the agency
through the 21st Century Cures Act for targeted initiatives.
AHRQ plays an important role in producing the evidence base
research needed to improve our Nation's health and healthcare. The
incremental increases for AHRQ's Patient Centered Health Research
Program in recent years will help AHRQ generate more of this research
and expand the infrastructure needed to increase capacity to produce
this evidence; however, more investment is needed. AACOM recommends
$454 million in base discretionary funding for AHRQ, consistent with
fiscal year 2010 levels. This investment will preserve AHRQ's current
programs while helping to restore its critical healthcare safety,
quality, and efficiency initiatives. Additionally, AACOM opposes the
consolidation of AHRQ into the NIH.
AACOM appreciates the opportunity to submit its views and looks
forward to continuing to work with the Subcommittee on these important
matters.

[This statement was submitted by Stephen C. Shannon, DO, MPH,
President and Chief Executive Officer, American Association of Colleges
of Osteopathic Medicine.]
______

Prepared Statement of the American Association of Immunologists
The American Association of Immunologists (AAI), the Nation's
largest professional society of research scientists and physicians who
study the immune system, respectfully submits this testimony regarding
fiscal year 2019 appropriations for the National Institutes of Health
(NIH). AAI recommends an appropriation for NIH of at least $39.3
billion for fiscal year 2019 to enable NIH to fund critically important
new and ongoing biomedical research, support the next generation of
biomedical researchers, and ensure continued robust investment in this
national priority area. As a result of generous support from this
subcommittee and Congress in recent years, NIH has continued to make
great strides in advancing urgently needed medical research, supporting
talented scientists and trainees who want to pursue research careers in
the United States, and providing hope to all who are afflicted by
illness or disability.
why the immune system matters--and why immunologists are essential
The immune system is the body's primary defense against viruses,
bacteria, parasites, toxins, and carcinogens. When it performs
optimally, it can protect its host from a wide range of infectious
diseases, including influenza virus, and from chronic illnesses, such
as cancer. But the immune system can underperform, leaving the body
vulnerable to disease, such as the common cold, measles, pneumonia, and
AIDS; and it can ``overperform,'' attacking normal organs and tissues
and causing autoimmune diseases/conditions such as allergy, asthma,
inflammatory bowel disease, lupus, multiple sclerosis, rheumatoid
arthritis, and type 1 diabetes. Immunologists study how the immune
system works, including ways it can be harnessed to help prevent,
treat, or cure disease; and how it can be used to protect people and
animals from infectious organisms (including antibiotic resistant
bacteria) and other bacteria (like anthrax and plague) and viruses
(like smallpox and Ebola) that could also be used as bioweapons.
recent immunological discoveries and their impact on preventing and
fighting disease
Cancer immunotherapy--Cancer immunotherapy, which harnesses the
immune system to fight tumors, is revolutionizing cancer treatment.
Because of NIH-funded research, several new immuno-therapeutic agents
have recently been developed that offer great hope for cancer
patients.\1\ In 2017, the Food and Drug Administration (FDA) approved
the Nation's first gene therapy, CAR-T (chimeric antigen receptor T
cell) therapy, tisagenlecleucel (KymriahTM), for treatment of acute
lymphoblastic leukemia.\2\ In a key clinical trial, this highly
effective therapy showed an overall remission rate of 83 percent.
Subsequently, axicabtagene ciloleucel (Yescarta) received FDA approval
for the treatment of B cell lymphoma following a clinical trial that
showed a complete remission rate of 51 percent.\3\ These therapies
using engineered immune cells offer exciting new approaches to
tailoring treatments to individuals (known as ``precision medicine'').
---------------------------------------------------------------------------
\1\ Maude, S. L. et al. 2014. Chimeric antigen receptor T cells for
sustained remissions in leukemia. N. Engl. J. Med. 371: 1507-1517;
Zhong, X. S. et al. 2010. Chimeric antigen receptors combining 4-1BB
and CD28 signaling domains augment PI3kinase/AKT/Bcl-XL activation and
CD8+ T cell-mediated tumor eradication. Mol. Ther. 18:413-420.;
Rosenberg, S. A. et al. 1988. Use of tumor-infiltrating lymphocytes and
interleukin-2 in the immunotherapy of patients with metastatic
melanoma. N. Engl. J. Med. 319: 1676-1680.
\2\ https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/
ucm574058.htm.
\3\ https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/
ucm581216.htm.
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Another type of immunotherapy (checkpoint inhibitors), previously
FDA-approved for the treatment of some solid tumors and blood cancers,
was also recently approved for treatment of cancers with a specific
genetic feature (biomarker). This recent approval of pembrolizumab
(Keytruda) is significant not only because of the responses that are
being achieved (40 percent complete or partial response), but also
because this was the first FDA approval given to a therapy based on a
biomarker rather than on the tumor's original location in the body.\4\
Subsequently, nivolumab (Opdivo) received approval for treatment of
colorectal cancer with a specific biomarker.\5\ These advances directly
result from NIH-funded research demonstrating the sensitivity of tumors
harboring these genetic features to immunotherapy.\6\
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\4\ https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/
ucm560040.htm [approval for two biomarkers: microsatellite instability
high (MSI-H) and mismatch repair deficient (dMMR)].
\5\ https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/
ucm560040.htm (approval for MSI-H and dMMR).
\6\ Le, D. T. et al. 2017. Mismatch repair deficiency predicts
response of solid tumors to PD-1 blockade. Science 357: 409-413.
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Hepatitis B vaccine.--Hepatitis B is a viral disease of the liver
that can become chronic and lead to cirrhosis, liver cancer, and death.
An estimated 850,000--2.2 million people in the U.S. have chronic
hepatitis B, resulting in approximately 1,800 deaths every year.\7\
There is no cure, and infections are on the rise. Over the past decade,
however, NIH has provided more than $17 million toward the development
of vaccine adjuvants (which enhance vaccine efficacy).\8\ In 2017, the
FDA approved HEPLISAV-B, the first new vaccine for the hepatitis B
virus (HBV) in 25 years.\9\ Because HEPLISAV-B requires only two doses
over 1 month, in contrast to previously available vaccines, which
require three doses over 6 months, this new vaccine may be a valuable
tool in the effort to improve vaccination rates and therefore prevent
infection with, and death from, HBV.
---------------------------------------------------------------------------
\7\ https://www.cdc.gov/hepatitis/hbv/bfaq.htm.
\8\ http://investors.dynavax.com/
releasedetail.cfm?releaseid=337232.
\9\ https://www.hhs.gov/hepatitis/blog/2017/11/29/fda-approves-new-
hepatitis-b-vaccine.
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Artificial pancreas for type 1 diabetes.--Type 1 diabetes (T1D) is
an autoimmune disease that affects over 1.25 million Americans,
including 200,000 children.\10\ People with T1D are unable to produce
insulin because their immune system has destroyed their insulin-
producing (i.e., beta) cells, resulting in an uncontrolled rise in
blood sugar levels. Complications from T1D include blindness, nerve
damage, kidney failure, heart disease, and death. Because changes in
diet or lifestyle alone will not treat the disease, diabetic patients
must closely monitor their blood sugar levels to ensure that they are
taking the needed dose of insulin.\11\ Control of blood sugar levels is
essential to preventing or delaying T1D complications. NIH-funded
researchers from fields including immunology, endocrinology, bio-
engineering, and computational biology have developed ``closed-loop''
artificial pancreas systems, which continuously monitor blood sugar and
automatically administer the appropriate amount of insulin when needed;
these systems have recently entered clinical trials, and if successful
and approved by the FDA, will not only revolutionize T1D treatment, but
also dramatically improve the quality of life of these patients.\12\
---------------------------------------------------------------------------
\10\ http://www.jdrf.org/about/what-is-t1d/.
\11\ https://www.cdc.gov/diabetes/basics/type1.html.
\12\ https://www.nih.gov/news-events/news-releases/four-pivotal-
nih-funded-artificial-pancreas-research-efforts-begin.
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nih's essential role in the nation's--and the world's--biomedical
research enterprise
As the Nation's main funding agency for biomedical research, NIH
distributes more than 80 percent of its budget through approximately
50,000 grants annually, supporting the work of more than 300,000
researchers at universities, medical schools, and other research
institutions in all 50 States, the District of Columbia, and several
U.S. territories.\13\ NIH also utilizes about 10 percent of its budget
to support roughly 6,000 additional researchers and clinicians who work
at NIH facilities in Maryland, Arizona, Massachusetts, Michigan,
Montana, and North Carolina.\14\ NIH funding strengthens the economies
of the States where its researchers live and work; in 2017, it
supported more than 402,000 jobs across the U.S.\15\ NIH-funded
research also propels the Nation's extraordinarily successful
pharmaceutical industry: according to NIH Director Francis Collins,
M.D., Ph.D., a recent study shows that ``NIH contributed to published
research that was associated with every single one of the 210 new drugs
approved by the [FDA] from 2010 through 2016 [and that] [m]ore than 90
percent of that contributory research was basic--that is, related to
the discovery of fundamental biological mechanisms, rather than actual
development of the drugs themselves.'' \16\
---------------------------------------------------------------------------
\13\ https://www.nih.gov/about-nih/what-we-do/budget; https://
report.nih.gov/award/index.cfm.
\14\ https://www.training.nih.gov/resources/intro_nih/
other_locations.
\15\ http://www.unitedformedicalresearch.com/advocacy_reports/nihs-
role-in-sustaining-the-u-s-economy-2018-update/.
\16\ https://directorsblog.nih.gov/2018/02/27/basic-research-
building-a-firm-foundation-for-biomedicine/.
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NIH also provides invaluable scientific leadership both in the U.S.
and abroad. The steward of more than $37 billion in taxpayer dollars,
NIH advises our Nation's elected and appointed leaders on scientific
advancements, needs, and threats, and works to ensure that its funds
are properly and prudently spent. NIH not only governs the conduct of
scientific research at academic institutions in the U.S., it also
fosters collaborations between U.S.-based scientists and their
invaluable international colleagues; and between government and the
pharmaceutical, biotech- nology and medical device industries, all of
which benefit from NIH-supported research to fuel their own
advances.\17\ These NIH leadership responsibilities, which include
consultation with a broad and diverse stakeholder community, require a
sufficient number of skilled personnel. Therefore, AAI urges that NIH
be permitted to hire the scientific and administrative personnel needed
to ensure the success of what is unquestionably an enormous and
complicated enterprise.
---------------------------------------------------------------------------
\17\ http://conservativereform.com/wp-content/uploads/2016/09/
CRN_MedicalResearch.pdf.
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recent funding increases have eased, but not eliminated, the erosion of
nih purchasing power
Strong, decisive action by this subcommittee and the full Congress
has resulted in substantial funding increases for NIH over the last
several years. With generous, needed increases of $3 billion in fiscal
year 2018 and $2 billion each in fiscal year 2016 and fiscal year 2017
(including supplemental funding to support initiatives authorized by
the 21st Century Cures Act and increased funding to support the
development of a universal influenza vaccine), Congress has helped
restore some of the purchasing power that NIH lost from years of
insufficient budgets that were further eroded by biomedical research
inflation; this gap, which once reached 25 percent, has been reduced
to 11 percent. Continued efforts to close this gap, and to grow the
research enterprise, are needed if we are to ensure a robust research
environment that will both facilitate research on discoveries that
might lead to new treatments or cures, and encourage promising young
people to become the next generation of researchers, doctors,
professors, and inventors. Predictable, ample funding increases for
NIH, particularly through the timely passage of annual appropriations
bills, would strengthen the Nation's biomedical research enterprise and
foster needed confidence within the scientific community.
conclusion
AAI greatly appreciates this subcommittee's longstanding leadership
and strong bipartisan support for NIH and biomedical research through
regular appropriations and supplementary funds to support 21st Century
Cures Act initiatives. AAI urges the subcommittee to continue to
strengthen NIH's ability to support research that is critical to human
health by appropriating at least $39.3 billion for NIH for fiscal year
2019.

[This statement was submitted by Beth A. Garvy, Ph.D., American
Association of Immunologists (AAI).]
______

Prepared Statement of the American College of Cardiology
The American College of Cardiology (ACC) commends Congress for
boosting funding for the National Institutes of Health (NIH) and
Centers for Disease Control and Prevention (CDC) in fiscal year 2017
and fiscal year 2018, and for mandatory increases for the NIH as part
of the 21st Century Cures Act and the Bipartisan Budget Act of 2018.
These significant investments will help spur the development and
implementation of medical innovations. To continue this important
progress and ensure future medical research advancements in fiscal year
2019 and beyond, ACC urges members of Congress to appropriate the
following funds toward agencies doing vital work in cardiovascular
disease (CVD) treatment and prevention: $39.3 billion for the NIH, with
$3.6 billion going toward the National Heart Lung & Blood Institute
(NHLBI) and $2.3 billion toward the National Institute of Neurological
Disorders & Stroke (NINDS) to increase the NIH's purchasing power and
preserve U.S. leadership in research; $160 million toward the CDC's
Division for Heart Disease and Stroke Prevention to strengthen heart
disease prevention efforts at State and local levels, $5 million toward
CDC's Million Hearts to prevent 1 million heart attacks and strokes by
2022, $37 million toward CDC's WISEWOMAN to help uninsured or under-
insured women prevent or control heart disease, $7 million toward CDC
congenital heart research to study its effects over the patient's
lifespan, and $216.5 million toward CDC's Office on Smoking and Health
to maintain the program's cost-effective tobacco control efforts.
The ACC is the professional home for the entire cardiovascular care
team. The mission of the College and its more than 52,000 members is to
transform cardiovascular care and to improve heart health. The ACC
leads in the formation of health policy, standards and guidelines. The
College operates national registries to measure and improve care,
offers cardiovascular accreditation to hospitals and institutions,
provides professional medical education, disseminates cardiovascular
research and bestows credentials upon cardiovascular specialists who
meet stringent qualifications.
increase funding at the national institutes of health
Cardiovascular Disease (CVD), a class of diseases that includes
diseased blood vessels, structural problems, and blood clots, continues
to be the leading cause of death among men and women in the United
States and is responsible for 1 in every 4 deaths.\1\ More than 92
million Americans currently suffer from some form of CVD--nearly one-
third of the population--but it remains one of the most underfunded
deadly diseases, as the NIH only invests 4 percent of its research
dollars on heart research.\2\ Despite reduced capacity to fund grants
and new discoveries over the last decade, the NIH continues to enhance
and save millions of lives. The heart disease death rate has continued
to drop since the 1970s \3\ due to scientific advances and improved
heart medications and procedures--but to meet the challenges of an
aging population, rising obesity rates and unhealthy diets, the NIH
must maintain its place at the forefront of medical innovation for
years to come. Since many heart disease-related, life-saving
interventions are a result of sustained commitment to investments in
medical research, we recommend the NIH be funded at $39.3 billion.
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\1\ Heart Disease Facts; Centers for Disease Control and
Prevention. https://www.cdc.gov/heartdisease/facts.htm.
\2\ National Coalition for Heart and Stroke Research; American
Heart Association. http://www.heart.org/HEARTORG/Advocate/
IssuesandCampaigns/Research/National-Coalition-for-Heart-and-Stroke-
Research_UCM_428347_Article.jsp#.Wt4h-m4vypo.
\3\ Heart Disease; National Institutes of Health Fact Sheets.
https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=96.
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The NHLBI, the third-largest institute at the NIH, conducts
research related to heart, blood vessel, lung, and blood diseases,
generating drugs for lowering cholesterol, controlling blood pressure,
and dissolving blood clots. These biomedical advancements have
contributed to a 71 percent \4\ decrease in death rates due to
cardiovascular disease. NHLBI's recent groundbreaking research found
that more intensive management of high blood pressure in people 50
years and older reduces cardiovascular events by almost 25 percent.\5\
We recommend that NHLBI be funded at $3.6 billion to maintain current
activities and investment toward new research and emerging technologies
related to heart disease.
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\4,5\ HHS/NIH/NHLBI fiscal year 2017 Congressional Justification
Report; https://www.nhlbi.nih.gov/sites/default/files/media/docs/
Final%20NHLBI%202017%20CJ_R508_v1_
0.pdf.
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NINDS conducts research on brain and nervous system disorders,
including stroke prevention and treatment. Coronary heart disease and
stroke share many of the same risk factors such as high cholesterol
levels, high blood pressure, smoking, diabetes, physical inactivity,
and being overweight or obese. The NINDS Stroke Clinical Trials Network
develops high-quality, multi-site clinical trials focused on key
interventions in stroke prevention, treatment and recovery. We
recommend that NINDS be funded at $2.3 billion to enhance its existing
initiatives and explore new priorities in stroke prevention.
increase funding at the centers for disease control and prevention
The CDC plays a vital role in protecting public health through
healthy lifestyle promotion and educational activities designed to curb
non-infectious diseases such as obesity, diabetes, stroke, and heart
disease. The CDC Division for Heart Disease and Stroke Prevention
supports efforts to improve cardiovascular health by promoting healthy
lifestyles and behaviors, healthy environments, and access to early
detection and affordable treatment. The division engages with local and
State health departments, and a variety of other partners, to provide
funding and resources, conduct research, track risk factors, and
evaluate current programs and policies relating to heart disease. We
recommend that the CDC Division for Heart Disease and Stroke prevention
be funded at $160 million to continue its prevention activities among
the most vulnerable communities.
Launched in 2012 and co-led by the CDC and the Centers for Medicare
and Medicaid Services, the Million Hearts program coordinates and
enhances CVD prevention activities with the objective of preventing 1
million heart attacks and strokes by the year 2022. The initiative aims
to achieve this goal by encouraging the public to lead a healthy and
active lifestyle, as well as improving medication adherence for aspirin
and other medications to manage blood pressure, cholesterol, and
smoking cessation. We recommend that Million Hearts be funded at $5
million to enhance efforts preventing heart attacks and strokes.
CDC's WISEWOMAN initiative provides more than 165,000 under-
insured, low-income women ages 40-64 with services to help reduce heart
disease and stroke risk factors. Heart disease ranks as the leading
cause of death for women. Only 1 in 5 women \6\ believes heart disease
is her greatest health threat, and 11 percent of women \7\ remain
uninsured. We recommend that $37 million be allocated for WISEWOMAN to
provide preventive health services, referrals to local healthcare
providers, lifestyle programs, and counseling.
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\6\ WISEWOMAN; Centers for Disease Control and Prevention. https://
www.cdc.gov/
wisewoman/.
\7\ Women's Health Insurance Coverage; The Henry J. Kaiser Family
Foundation. http://kff.org/womens-health-policy/fact-sheet/womens-
health-insurance-coverage-fact-sheet/.
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Congenital heart disease (CHD), a life-long consequence of a
structural abnormality of the heart present at birth, is the number one
birth defect in the U.S. While the diagnosis and treatment of CHD has
greatly improved over the years, most patients with complex heart
defects need special care throughout their lives, and only by expanding
research opportunities can we fully understand the effects of CHD
across the lifespan. We recommend that the CDC National Center for
Birth Defects and Developmental Disabilities be funded at $7 million
for enhanced CHD surveillance and public health research.
Programs within CDC's Office on Smoking and Health (OSH) work to
prevent smoking among young adults and eliminate tobacco-related health
disparities in different population groups. In 2012, OSH launched the
national tobacco education campaign, Tips from Former Smokers, which
has motivated more than 5 million people to quit smoking, with at least
400,000 quitting permanently.\8,9\ While these programs have proven
effective in tobacco cessation and prevention, more than 480,000 people
still die every year from causes attributable to smoking, and 33
percent of those deaths stem from heart disease.\10\ We recommend that
OSH be funded at $216.5 million to continue leading the nation's
efforts in preventing chronic diseases caused by tobacco use.
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\8,9\ Office on Smoking and Health; Centers for Disease Control and
Prevention. https://www.cdc.gov/tobacco/about/osh/.
\10\ At a Glance 2016 Tobacco Use; Centers for Disease Control and
Prevention. https://www.cdc.gov/chronicdisease/resources/publications/
aag/pdf/2016/tobacco-aag.pdf.
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conclusion
On behalf of our 52,000 members who work to prevent and treat CVD,
ACC would like to thank members of Congress for supporting medical
innovation as we continue the fight against heart disease. Stable
funding for research, surveillance, and healthy lifestyle promotion
will not only save lives, but save healthcare costs in the long term.
Medical research nurtures economic growth by creating jobs and new
technologies, which will produce billions of dollars in Medicare and
Medicaid savings over the next decade. Please help us secure robust NIH
and CDC funding to protect the health of future generations.

[This statement was submitted by C. Michael Valentine, MD, FACC,
President, American College of Cardiology.]
______

Prepared Statement of the American College of
Obstetricians and Gynecologists
The American College of Obstetricians and Gynecologists (ACOG),
representing more than 58,000 physicians and partners dedicated to
advancing women's health, is pleased to offer this statement to the
Senate Committee on Appropriations, Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. We thank Chairman
Blunt, Ranking Member Murray, and the entire Subcommittee for this
opportunity to provide comments on some of the most important programs
to women's health.
ACOG commends Congress for passing the Consolidated Appropriations
Act of 2018 (Public Law 115--141), which gives the Department of Health
and Human Services (HHS) the budget relief provided by the Bipartisan
Budget Act of 2018. It also provides much needed funding to combat the
ongoing opioid crisis, which continues to plague communities across the
country. Looking ahead, we urge you to make funding of the following
programs and agencies a priority in fiscal year 2019:
Safe Motherhood, Maternity and Perinatal Quality Collaboratives at
Centers for Disease Control and Prevention (CDC):
The United States has the highest rate of maternal mortality and
severe morbidity of any developed country. The Safe Motherhood
Initiative at CDC works with State health departments to collect
information on pregnancy-related deaths, give technical assistance to
maternal mortality review committees, track preterm births, and improve
maternal outcomes through Maternity and Perinatal Quality
Collaboratives. Improvement to national data collection via State
maternal mortality review committees is needed--only 33 States have
maternal mortality review committees. ACOG requests you fund the Safe
Motherhood Initiative at $53 million, including $7 million to help
States expand or establish maternal mortality review committees.
Firearm Morbidity and Mortality Prevention (CDC):
In 2016, there were over 38,000 U.S. firearm-related fatalities.
federally funded public health research has a proven track record of
reducing public health-related deaths, whether from motor vehicle
crashes, smoking, or Sudden Infant Death Syndrome. This same approach
should be applied to increasing gun safety and reducing firearm-related
injuries and deaths, and CDC research will be as critical to that
effort as it was to these previous public health achievements. The
foundation of a public health approach is rigorous research that can
accurately quantify and describe the facets of an issue and identify
opportunities for reducing its related morbidity and mortality. For
fiscal year 2019, ACOG requests $50 million for CDC to conduct public
health research into firearm morbidity and mortality prevention.
Data Collection and Surveillance at National Center for Health
Statistics (NCHS):
Uniform, accurate, and comprehensive data is essential for
addressing the rising rates of maternal mortality and severe maternal
morbidity in the United States. NCHS is the Nation's principal health
statistics agency and collects raw vital statistics from State records
like birth and death certificates. This information provides key data
about both mother and baby during pregnancy, labor, and delivery. ACOG
requests funding to be used to support States in improving the quality
and accuracy of vital statistics reporting. For fiscal year 2019, ACOG
requests $175 million for NCHS.
Biomedical, Social, and Behavioral Research at the National Institutes
of Health (NIH):
Biomedical research is vital to understanding the causes maternal
and infant mortality and morbidity and developing interventions to
reduce these outcomes. The Eunice Kennedy Shriver National Institute of
Child Health and Human Development (NICHD) has achieved great success
in meeting the objectives of its biomedical, social, and behavioral
research mission, including research on women's health throughout the
life cycle; maternal, child, and family health; fetal development;
reproductive biology; population health; and medical rehabilitation.
With sufficient resources, NICHD can build upon their existing
initiatives to produce new insights and solutions to benefit women and
children. ACOG supports of $39.2 billion for the National Institutes of
Health (NIH) in fiscal year 2019, including a proportionate increase
for NICHD. This amount would maintain a steady trajectory of $2 billion
annual increases for the NIH.
Title V Maternal and Child Health Block Grant at Health Resources and
Services Administration (HRSA):
The Title V Maternal and Child Health (MCH) Block Grant at HRSA is
the only Federal program that exclusively focuses on improving the
health of mothers and children. The Block Grant is a cost-effective,
accountable, and flexible funding source used to address critical,
pressing, and unique needs of maternal and child health populations in
each State, territory and jurisdiction. Notably, the Block Grant
supports the Alliance for Innovation on Maternal Health (AIM)--a
program that works with States and hospital systems to implement
evidence-based toolkits, or bundles, to improve maternal outcomes and
reduce rates of maternal mortality and severe morbidity. For fiscal
year 2019, ACOG requests $880 million for the Block Grant to maintain
its current level of services.
Title X Family Planning Program (HRSA):
Family planning and prepregnancy care are imperative to ensuring
healthy women and healthy pregnancies. The Title X Family Planning
Program provides essential services to over 4 million low income men
and women who may not otherwise have access to these services. For many
individuals, particularly those who are low-income, uninsured or
adolescents, Title X is essential to their ability to affordably and
confidentially obtain birth control, cancer screenings, STI tests and
other basic care. Six in ten women seen at a Title X-supported
healthcare center have reported that the center was their usual source
of medical care, and in 2015 alone, the contraceptive services
supported by Title X helped women avoid 822,000 unintended pregnancies.
The Administration's recently-released proposed rule jeopardizes the
success of the program, and we encourage Congress to call for its
immediate withdrawal. ACOG requests $327 million for Title X in fiscal
year 2019 to sustain its level of services.
Advancing Maternal Therapeutics at the Department of Health and Human
Services (HHS):
Each year, more than 4 million women give birth in the United
States and more than 3 million breastfeed. However, little is known
about the effects of most drugs on the woman and her child. ACOG
strongly supports continued implementation of the Task Force on
Research in Pregnant Women and Breastfeeding Women that passed as part
of the 21st Century Cures Act (Sec. 2041 of Public Law 114-255). The
Task Force will propel research in pregnancy and breastfeeding.
Investing in Data and Quality at the Agency for Healthcare Research and
Quality (AHRQ):
AHRQ is the Federal agency with the sole purpose of improving
healthcare quality. AHRQ produces data with the mission of making
healthcare safer, higher quality, more accessible, equitable, and
affordable. AHRQ works with HHS and other partners to ensure that the
evidence improves patient safety. ACOG supports $454 million for AHRQ
in fiscal year 2019, which is consistent with the fiscal year 2010
funding level for the agency adjusted for inflation.
Response to Zika Virus (HHS):
ACOG commends Congress for providing emergency supplemental funding
in fiscal year 2017 to respond to the Zika virus. It is imperative that
Congress sustain that investment in fiscal year 2019 and beyond to
address the full span of activities necessary to track, treat, and
ultimately prevent Zika infections, and improve our efforts to defend
against future outbreaks. This includes a wide range of ongoing
activities throughout HHS agencies, including vaccine research and
development at NIAID; research into how the Zika virus affects mothers
and babies exposed to the virus at NICHD; vector control, contraceptive
access and counseling, diagnostic testing, public education, and birth
defects surveillance at the CDC; and much more. ACOG urges you to
prioritize protecting women of reproductive age, pregnant women, and
infants from this deadly virus in fiscal year 2019.
Diagnosing and Treating Maternal Depression (HHS):
About 1 in 7 women experience maternal depression, and ACOG
recommends that all women be screened. Yet women face barriers to
accessing treatment. ACOG commends Congress for fully funding Sec.
10005 of Public Law 114-255 in the Consolidated Appropriations Act of
2018 to establish a program at HHS to expand depression screening and
treatment for pregnant and postpartum women. ACOG urges you to again
fully fund the program at $5 million for fiscal year 2019, as
authorized by Sec. 10005 of Public Law 114-255.
Addressing Opioid Use Disorder in Pregnancy at the Substance Abuse and
Mental Health Services Administration (SAMHSA):
Opioid use disorder has risen dramatically in recent years. For
pregnant and parenting women struggling with a substance use disorder,
treatment that supports the family unit maintains maternal sobriety and
child well-being. We commend Congress for reauthorizing the Pregnant
and Postpartum Women (PPW) program funded through SAMHSA in Sec. 501 of
Public Law 114-198, which provided flexibility for innovative pilot
programs to address service gaps for pregnant and postpartum women,
including access to out- patient treatment, and including a $10 million
increase for the program in the fiscal year 2018 omnibus. ACOG
supports, at minimum, $29.931 million to fund the PPW program for
fiscal year 2019 to ensure funds are available for innovative programs
that may better serve women and their families.
Thank you again for the opportunity to submit our recommendations
to the Subcommittee, and for your commitment to improving women's
health.

[This statement was submitted by Rebecca Nathanson, Federal Affairs
Manager, American College of Obstetricians and Gynecologists.]
______

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 & Human Services, for fiscal year 2019.
ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
152,000 internal medicine physicians (internists), related
subspecialists, and medical students. Internal medicine physicians are
specialists who apply scientific knowledge and clinical expertise to
the diagnosis, treatment, and compassionate care of adults across the
spectrum from health to complex illness. As the Subcommittee begins
deliberations on appropriations for fiscal year 2019, ACP is urging
funding for the following proven programs to receive appropriations
from the Subcommittee:
--Title VII, Section 747, Primary Care Training and Enhancement
(PCTE), Health Resources and Services Administration (HRSA),
$71 million;
--National Health Service Corps (NHSC), $415 million in total program
funding;
--Agency for Healthcare Research and Quality (AHRQ), $454 million;
--Centers for Medicare and Medicaid Services (CMS), Program
Operations for Federal Exchanges, $690 million;
--Expand Comprehensive Drug Addiction and Recovery Act (CARA)
appropriations, $1 billion and continue increased State
Targeted Response to the Opioid Crisis (Opioid STR) grant
program funding, $1.5 billion;
--Centers for Disease Control and Prevention (CDC), Injury Prevention
and Control, Research on Prevention of Firearms-related
Injuries and Deaths, $50 million;
--National Institutes of Health (NIH), $39.3 billion.
The United States is facing a shortage of physicians in key
specialties, notably in general internal medicine and family medicine-
the specialties that provide primary care to most adult and adolescent
patients. Current projections indicate there will be a shortage of
14,800 to 49,300 primary care physicians by 2030. (IHS Inc., prepared
for the Association of American Medical Colleges. 2018 Update, The
Complexities of Physician Supply and Demand: Projections from 2016 to
2030. March, 2018. Accessed at: https://aamc-
black.global.ssl.fastly.net/production/media/filer_
public/85/d7/85d7b689-f417-4ef0-97fb-ecc129836829/aamc_2018_workforce_
projections_update_april_11_2018.pdf). Without critical funding for
vital workforce programs, this physician shortage will only grow worse.
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 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 in helping institutions and
programs respond to the current and emerging challenges of ensuring
that all Americans have access to appropriate and timely health
services. Within the Title VII program, we urge the Subcommittee to
fund the Section 747 PCTE program at $71 million, in order to maintain
and expand the pipeline for individuals training in primary care. While
the College appreciates the $10 million increase to the program in
fiscal year 2018, ACP urges more funding because the Section 747 PCTE
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 PCTE training models emphasizing
interdisciplinary training that have helped prepare them to work with
other health professionals, such as physician assistants, patient
educators, and psychologists.
The College urges at least $415 million in total program funding
for the NHSC. For the first time in many years, the NHSC received
discretionary funding-$105 million-in the fiscal year 2018 Omnibus
Appropriations Act to expand and improve access to quality opioid and
substance use disorder treatment in underserved areas in addition to
$310 million in mandatory funds for fiscal year 2018. The NHSC awards
scholarships and loan repayment to healthcare professionals to help
expand the country's primary care workforce and meet the healthcare
needs of underserved communities across the country. With a field
strength of over 10,000 primary care clinicians, NHSC members are
providing culturally competent care to over 10.7 million patients at
over 16,000 NHSC-approved healthcare sites in urban, rural, and
frontier areas. These funds would help maintain NHSC's field strength
helping to address the health professionals' workforce shortage and
growing maldistribution. The College was pleased that the NHSC received
$105 million in discretionary funding for fiscal year 2018 and urges
that the NHSC should receive at least the fiscal year 2018 program
level of funding for fiscal year 2019.
AHRQ is the leading public health service agency focused on
healthcare quality. AHRQ's research provides the evidence-based
information needed by consumers, clinicians, 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 budget of $454 million, restoring the
agency to its fiscal year 2010 enacted level adjusted for inflation.
This amount will allow AHRQ to help providers help patients by making
evidence-informed decisions, fund research that serves as the evidence
engine for much of the private sector's work to keep patients safe,
make the healthcare marketplace more efficient by providing quality
measures to health professionals, and, ultimately, help transform
health and healthcare.
ACP supports at least $690 million in discretionary funding for
Federal exchanges within CMS' Program Operations, which has been funded
at $2.52 billion the last several fiscal years. This funding would
allow the Federal Government to continue to administer the insurance
marketplaces as authorized by the Affordable Care Act if a State has
declined to establish an exchange that meets Federal requirements. CMS
now manages and operates some or all marketplace activities in over 30
States. If the Subcommittee decides to deny these funds, it will be
much more difficult for the Federal Government to operate and manage a
federally-facilitated exchange in those States, raising questions about
where and how their residents would obtain and maintain coverage.
ACP supports expanded appropriations for the CARA of 2016's grant
programs for fiscal year 2019 and continuing the Opioid STR grant
program's increase for fiscal year 2019. The College greatly
appreciates CARA grant programs funded at the level of $360 million for
fiscal year 2018 and the tripling of Opioid STR grants program to $1.5
billion provided under the fiscal year 2018 omnibus. For fiscal year
2019, the College urges the Subcommittee to increase CARA funding to $1
billion to help expand proven programs such as evidence-based
medication-assisted treatment and first-responder training and access
to naloxone for overdose reversal, as included in the CARA 2.0 Act of
2018. ACP also strongly supports the continued increase of Opioid STR
grant funding level at $1.5 billion for fiscal year 2019.
As data-driven decision makers, ACP advocates for robust research
about the causes and consequences of firearm violence and unintentional
injuries and for strategies to reduce firearm-related injuries. The CDC
should receive adequate funding to study the effect of firearm violence
and unintentional firearm-related injury on public health and safety.
The College supports $50 million for the CDC's Injury and Prevention
Control to fund research on prevention of firearms-related injuries and
deaths and support 10 to 20 multi-year studies and help rebuild lost
research capacity in this area.
Lastly, the College strongly supports $39.3 billion for NIH in
fiscal year 2019 so that the Nation's medical research agency continues
making important discoveries that treat and cure disease to improve
health and save lives and maintain the United States' standing as the
world leader in medical and biomedical research.
The College greatly appreciates the support of the Subcommittee on
these issues and looks forward to working with Congress on the fiscal
year 2019 appropriations process.

[This statement was submitted by Jared Frost, Senior Associate,
Legislative
Affairs, American College of Physicians.]
______

Prepared Statement of the American College of Preventive Medicine
The American College of Preventive Medicine (ACPM) urges the Senate
Labor, Health and Human Services, Education, and Related Agencies
Appropriations Subcommittee to support training for preventive medicine
physicians and other public health professionals by providing $11.136
million in fiscal year 2019 to the Heath Resources and Services
Administration (HRSA) for preventive medicine residency training under
the public health and preventive medicine line item in Title VII of the
Public Health Service Act. ACPM also supports the recommendation of the
Health Professions and Nursing Education Coalition of $690 million in
fiscal year 2019 to support all health professions and nursing
education and training programs authorized under Titles VII and VIII of
the Public Health Service Act.
In today's healthcare environment, the tools and expertise provided
by preventive medicine physicians play an integral role in ensuring the
effective functioning of our Nation's public health system. These tools
and skills include the ability to deliver evidence-based clinical
preventive services, expertise in population-based health sciences, and
knowledge of the social and behavioral determinants of health and
disease. These are the tools employed by preventive medicine physicians
who practice at the health system level where improving the health of
populations, enhancing access to quality care, and reducing the costs
of medical care are paramount. As the body of evidence supporting the
effectiveness of clinical and population-based interventions continues
to expand, so does the need for specialists trained in preventive
medicine.
Organizations across the spectrum have recognized the growing
demand for preventive medicine professionals. The Institute of Medicine
released a report in 2007 calling for an expansion of preventive
medicine training programs by an ``additional 400 residents per year,''
and the Accreditation Council on Graduate Medical Education (ACGME)
recommends increased funding for preventive medicine residency training
programs. Additionally, the Association of American Medical Colleges
released statements in 2011 that stressed the importance of
incorporating behavioral and social sciences in medical education as
well as announcing changes to the Medical College Admission Test that
would test applicants on their knowledge in these areas. Such measures
strongly indicate increasing recognition of the need to take a broader
view of health that goes beyond just clinical care-a view that is a
unique focus and strength of preventive medicine residency training.
In fact, preventive medicine is the only one of the 24 medical
specialties recognized by the American Board of Medical Specialties
that requires and provides training in both clinical and population-
based medicine. Preventive medicine residency training programs provide
a blueprint on how to train our future physician workforce; physicians
trained to provide individual patient care needs as well as practice at
the community and population level to identify and treat the social
determinants of health. Preventive medicine physicians have the
training and expertise to advance the population health outcomes that
public and private payers are increasingly promoting to their
providers. These physicians have a strong focus on quality care
improvement and are at the forefront of efforts to integrate primary
care and public health.
According to HRSA, and health workforce experts, there are
personnel shortages in many public health occupations, including
epidemiologists, biostatisticians, and environmental health workers
among others. According to the 2016 Physician Specialty Data Book
released by the Association of American Medical Colleges, there was a
3.4 percent decrease of active preventive medicine physicians between
2010 and 2015, with no corresponding increase in the number of first
year preventive medicine residents. This represents a worsening trend
in the number of preventive medicine physicians in the field that is
not due to a lack of interest or need, but is due to a lack of funding.
Nearly 70 percent of preventive medicine physicians are over age 55,
and the funding gaps mean that there are not enough entering the field
to make up for the current and expected future shortage. ACPM is deeply
concerned about the shortage of preventive medicine-trained physicians
and the ominous trend of even fewer training opportunities. This
deficiency in physicians trained to carry out core public health
activities will lead to major gaps in the expertise needed to deliver
clinical prevention and community public health services. The impact on
the health of those populations served by HRSA is likely to be
profound.
Despite being recognized as an underdeveloped national resource and
in shortage for many years, physicians training in the specialty of
Preventive Medicine are the only medical residents whose graduate
medical education (GME) costs are not supported by Medicare, Medicaid
or other third party insurers. Training occurs outside hospital-based
settings and therefore is not financed by GME payments to hospitals.
Both training programs and residency graduates are rapidly declining at
a time of unprecedented national, State, and community need for
properly trained physicians in public health, disaster preparedness,
prevention-oriented practices, quality improvement, and patient safety.
Currently, residency programs scramble to patch together funding
packages for their residents. Support for faculty and tuition has been
almost non-existent. Directors of residency programs note that they
receive many inquiries about and applications for training in
preventive medicine; however, training slots often are not available
for those highly qualified physicians who are not directly sponsored by
an outside agency or who do not have specific interests in areas for
which limited stipends are available (such as research in cancer
prevention).
HRSA-as authorized in Title VII of the Public Health Service Act-is
a critical funding source for several preventive medicine residency
programs, as it represents the largest Federal funding source for these
programs.
Of note, the preventive medicine residency programs directly
support the mission of the HRSA health professions programs by
facilitating practice in underserved communities and promoting training
opportunities for underrepresented minorities:
--Thirty-five percent of HRSA-supported preventive medicine graduates
practice in medically underserved communities, a rate of almost
3.5 times the average for all health professionals. These
physicians are meeting a critical need in these underserved
communities.
--Nearly one in five preventive medicine residents funded through
HRSA programs are under-represented minorities, which is almost
twice the average of minority representation among all health
professionals.
--Fourteen percent of all preventive medicine residents are under-
represented minorities, the largest proportion of any medical
specialty.
In addition to training under-represented minorities and physicians
who work in medically underserved areas, preventive medicine residency
programs equip our society with health professionals and public health
leaders who possess the tools and skills needed in the fight against
the chronic disease epidemic that is threatening the future of our
Nation's health and prosperity. Chronic diseases currently cost the
U.S. billions of dollars per year, including heart disease and stroke
($315.4 billion per year), diabetes ($245 billion per year), and
obesity-related diseases ($145 billion per year). Correcting the root
causes of this critical problem of chronic diseases will require a
multidisciplinary approach that addresses issues of access to
healthcare; social and environmental influences; and behavioral
choices. Any efforts to strengthen the public health infrastructure and
transform our communities into places that encourage healthy choices
must include measures to strengthen the existing training programs that
help produce public health leaders.
Further, expanding the preventive medicine workforce strengthens
the disaster preparedness capabilities we must have to ensure our
Nation's health security. Vulnerable populations, including those in
poor health, with disabilities, and chronic diseases are at an
increased risk of adverse health outcomes resulting from natural
disasters. New threats are always on the horizon and some, like the
Zika virus, require preventive medicine specialists working to find
ways to stop the spread before it becomes an epidemic.
Many of the leaders of our Nation's local and State health
departments are trained in preventive medicine. Their unique
combination of expertise in both medical knowledge and public health
makes them ideal choices to head the fight against chronic disease as
well as other threats to our Nation's health, such as the opioid
epidemic. Their contributions are invaluable. Investing in the
residency programs that provide physicians with the training and skills
to take on these leadership positions is an essential part of keeping
Americans healthy and productive. As such, the American College of
Preventive Medicine urges the Labor, Health and Human Services,
Education, and Related Agencies Appropriations Subcommittee to reaffirm
its support for training preventive medicine physicians and other
public health professionals by providing $11.136 million in fiscal year
2019 to HRSA for preventive medicine residency training under the
public health and preventive medicine line item in Title VII of the
Public Health Service Act.

[This statement was submitted by Kate McFadyen, Senior Manager,
Government Affairs.]
______

Prepared Statement of the American Council on Education
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for the opportunity to testify about the
importance of funding for the Federal student aid and postsecondary
education programs at the U.S. Department of Education. The American
Council on Education (ACE) represents nearly 1,800 2-year and 4-year
colleges and universities, as well as higher education organizations.
We would like to first thank the subcommittee for your leadership
and championship of Federal student aid programs in the fiscal year
2018 appropriations bills. The increased funding will expand access and
encourage completion for our students. We are especially grateful for
the $175 increase to the maximum Pell Grant, which will help over seven
million low-income families access postsecondary education. Today, I
urge you to continue to support and protect the Pell Grant
(administered by the U.S. Department of Education) by increasing the
maximum award enough to at least keep pace with inflation, continuing
to fund year-round Pell, and opposing any cuts to the program. This
includes cuts to the so called ``Pell surplus,'' which remains an
important guarantee of Pell investments in the future.
As you now turn your attention fully to fiscal year 2019
appropriations, we ask that you carry this commitment forward. While we
recognize that the allocation for the fiscal year 2019 Labor-HHS-
Education and Related Agencies appropriations bill will be level with
fiscal year 2018, we urge you to continue to keep student aid funding a
priority. The requests identified below are intended to ensure that
programs reach a level of funding consistent with what appropriators
have provided in the past. The benefits of restoring funding in this
manner are clear and direct. Enabling students to pursue postsecondary
education has significant benefits for individuals and for our country
as a whole. A better-educated workforce means a stronger economy with
lower unemployment, greater earnings, higher tax revenues, and less
need for social services. A real effort to build our economy requires a
vigorous postsecondary education component.
To that end, we support increasing the Pell Grant maximum to $6,230
in fiscal year 2019. Pell Grants are the foundation of Federal student
aid and the Congressional Budget Office (CBO) estimates over 7.5
million students will use Pell Grants in the coming academic year to
finance their education. With the expiration of the automatic inflation
adjustment for the Pell Grant maximum, we encourage you to continue to
provide sufficient discretionary funding to ensure the equivalent is
provided for the neediest students. An increase in the maximum grant to
$6,230 would reflect an adjustment to the fiscal year 2018 Pell Max of
$6,095 at CBO's current projected Consumer Price Index (CPI) for 2018,
ensuring that available aid keeps pace with inflation.
In addition, we strongly encourage the subcommittees to avoid
rescinding appropriations from the Pell Grant program. In the last
decade, benefits and eligibility for Pell Grants were repeatedly cut in
response to funding shortfalls, pushing hundreds of thousands of
students out of the program. Using Pell Grant surplus dollars to fund
other programs in the Labor-HHS-Education bill puts the future
stability of the program in jeopardy.
Like the Pell grant, the campus-based aid programs are critical
components of Federal student aid. These are the original risk-sharing
programs and require institutions to match Federal funding to
participate. The two main campus-based programs are the Supplemental
Educational Opportunity Grants (SEOG) and Federal Work-Study (FWS).
SEOG provides targeted, need-based grant aid of up to $4,000 per
student to 1.6 million students. Participating colleges match Federal
dollars to make more than $1 billion in grant aid available. Over 99
percent of all SEOG recipients are Pell Grant recipients, and SEOG
recipients have higher need on average than students receiving only
Pell Grants. The FWS program provides Federal and institutional funding
to support part-time employment for more than 700,000 students to help
them pay their college costs. Studies show that students who work on
campus have higher graduation rates.
Over the last decade, both of these programs have seen level or
reduced funding year after year, eroding their ability to serve low-
and middle-income students. In order to restore the purchasing power of
these programs, Congress should fund them at their pre-sequester
levels, adjusted for inflation. For SEOG, that would be $1.028 billion
and for FWS it would be $1.434 billion. We understand that meeting
these requests would require a substantial increase on top of the
significant increases already provided in the fiscal year 2018 omnibus,
and may not be possible in 1 year due to the smaller overall increase
in non-defense discretionary funding available in fiscal year 2019. We
ask that you consider the importance of restoring full funding for
these programs and work towards that as you finalize fiscal year 2019
appropriations.
In fiscal year 2019, we believe the Federal TRIO programs should be
increased to $1.07 billion. This funding amount would restore services
for the more than 30,000 students who have lost access to the TRIO
programs over the last decade. TRIO serves students from middle school
through college, including military veterans and students with
disabilities, helping them get into college and complete their
programs. Additionally, GEAR UP should be funded at $375 million in
fiscal year 2019. This increase would bring approximately 70,000 new
students into the program and increase the overall number of students
served to 770,000. GEAR UP has a proven track record of success in
preparing students to enter and succeed in college.
We believe Graduate Assistance in Areas of National Need (GAANN)
should be funded at $48 million, the pre-sequester high-water mark for
funding graduate education in the humanities, adjusted for inflation.
GAANN grants offer support to top students studying in fields directly
related to American competitiveness.
The Leveraging Educational Assistance Partnership (LEAP) grants
should be funded at $65 million. While LEAP has not been funded since
fiscal year 2011, it has not been repealed, and provides a strong
Federal-State partnership for States to increase their efforts to
support need-based financial aid.
Thank you for considering our requests and allowing us to submit
testimony to the subcommittee. Without the strong partnership between
the Federal Government, States, institutions, and families, millions of
students would not be able to go to college. We call on Congress to
continue its bipartisan support of Federal student aid programs--which
combine grants, work-study, and loan programs--to enable low- and
middle- income students to succeed.

[This statement was submitted by Ted Mitchell, President, American
Council on Education.]
______

Prepared Statement of the American Dental Association
On behalf of the American Dental Association (ADA) and our 161,000
members, thank you, Mr. Chairman and Subcommittee members, for the
opportunity to submit testimony in support of Federal programs that
work to expand access to oral healthcare. The American Dental
Association is requesting for fiscal year 2019, $20 million for the
Center for Disease Control's (CDC) Division of Oral Health and $24
million for pediatric and general dental residencies in the Health
Resources and Services Administration (HRSA).
The ADA thanks the Committee for its commitment to oral health over
the years; however, oral health challenges persist. Dental caries,
tooth decay, remains the most common chronic disease of children aged 6
to 11 years and adolescents aged 12 to 18 years:
--About 1 in 5 (20 percent) children aged 5 to 11 years have at least
one untreated decayed tooth.
--1 in 7 (13 percent) adolescents aged 12 to 18 years have at least
one untreated decayed tooth.
--Children aged 5 to 18 years from low-income families are twice as
likely (25 percent) to have cavities, compared with children
from higher-income households (9 percent).\1\
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\1\ ADA Health Policy Institute. Untreated Caries Rates Falling
Among Low-Income Children. http://www.ada.org//media/ADA/
Science%20and%20Research/HPI/Files/HPIgraphic_0617_
2.pdf?la=en.
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CDC's and HRSA's investment in programs including: community water
fluoridation, school-based programs and oral health residency training,
have helped to significantly reduce the incidence of oral disease among
children and build a well-qualified dental workforce.
fluoridation
Because of Congress' outstanding efforts to address oral health
prevention, community water fluoridation is one of the most cost-
effective tools to reduce tooth decay. Studies prove water fluoridation
reduces tooth decay by more than 25 percent in children and adults.\2\
The cost of a lifetime of water fluoridation for one person is less
than the cost of one filling; however, the real cost benefit of
fluoridation is the savings that can be realized by the healthcare
system by preventing tooth decay rather than treating it. CDC launched
a pilot initiative in 2017 to help local water systems install or
replace water fluoridation equipment leading many communities to
improved dental health, but more communities are in need. In pilot year
2018, 21 applications were received from 12 States requesting $600,000
total from $370,000 available funds. Of those applicants, only 17
organizations in 10 States received awards, but most applicants did not
receive full funding. Additional funding would help States develop a
robust fluoridation system to benefit more communities.
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\2\ Center for Disease Control and Prevention. Community Water
Fluoridation. https://www.cdc.gov/fluoridation/index.html.
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school sealant programs
School-based sealant programs increase access to care, help reduce
caries and lower treatment costs in vulnerable children especially
those who are less likely to access dental care. Each tooth sealed
saves more than $11 in dental treatment costs.\3\ Applying sealants in
schools to the nearly 7 million low-income children who don't have them
could prevent more than 3 million cavities and save up to $300 million
in dental treatment costs.\4\ CDC currently funds 18 States to support
school-based sealant programs. Additional funding included in our $20
million funding request would help expand preventive care to more
States with communities that have limited access to dental services.
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\3\ Community Preventive Services Task Force. Preventing Dental
Caries: School-based Dental Sealant Delivery Programs. Atlanta, GA: US
Department of Health and Human Services, Community Preventive Services
Task Force; 2016. https://www.thecommunityguide.org/findings/dental-
caries-cavities-school-based-dental-sealant-delivery-programs.
\4\ Centers for Disease Control and Prevention. Dental Sealants
Prevent Cavities--Vital Signs website. https://www.cdc.gov/vitalsigns/
pdf/2016-10-vitalsigns.pdf [PDF--2.37 MB].
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oral health training
Title VII is the only Federal program focused on improving the
supply, distribution, and diversity of the dental profession workforce.
By providing advanced training opportunities to oral health
professionals, the program plays a critical role in helping the
workforce adapt to meet the Nation's changing healthcare needs. We are
pleased that Congress understands the importance of this program and
the impact that it has on medically underserved communities. Since
2000, approximately $100 million has supported over 60 pediatric
dentistry programs, including 10 new programs.\5\ Continuing to
increase the number of pediatric dentists is vital for treating
underserved populations. Pediatric dentists treat a higher percentage
of Medicaid and CHIP patients in their practices than any other type of
dentist. Nearly 70 percent of pediatric dentists treat children
enrolled in Medicaid, CHIP or both, which represent on average 25
percent of their patients. In communities where pediatric dentists are
not available, dentists who have completed a general dental residency
fill the gap. Their residency includes advanced training in pediatric
care.
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\5\ http://www.aapd.org/assets/1/7/Fact_Sheet_1-HRSA.pdf.
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The Administration's fiscal year 2019 budget request asserts that
Title VII/oral health residency programs have not demonstrated a
significant impact on the effectiveness of the oral health workforce.
However, the fiscal year 2018 HRSA budget justification indicates that
in 2015-2016, oral health training programs helped train 3,835 dental
and dental hygiene students in pre-doctoral training, 435 primary care
dental residents and fellows, and 946 dental faculty members in faculty
development.\6\ We believe that these numbers support our request of
$24 million for pediatric and general dentistry residencies. These
programs are paramount in training future generations of dentists to
meet the needs of a diverse population.
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\6\ https://www.hrsa.gov/sites/default/files/hrsa/about/budget/
budget-justification-2018.pdf.
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Behind every successful residency program, is a strong faculty. We
thank Congress for funding the dental faculty loan repayment program. A
critical factor in recruiting and retaining dental school faculty is
helping them reduce their student loan debt. Almost 85 percent of
dental students graduate with student loan debt which averaged $289,331
in 2017. Academic positions pay only one-third of what graduates can
earn upon entering private practice. According to the Journal of Dental
Education, there are approximately 342 dental faculty vacancies, of
which 271 are full-time and 78 percent are clinical.\7\
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\7\ Dental Schools Vacant Budgeted Faculty Positions, Academic Year
2015-2016. Washington, DC. Journal of Dental Education; 2017; 81 (8)
1033-1043. http://www.jdentaled.org/content/81/8/1033.
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Finally, the ADA believes that in order for HRSA to maintain its
dental residencies, faculty loan and prevention programs, there needs
to be a leading voice on oral health. In 2012, the Chief Dental Officer
(CDO) position was downgraded to a senior dental advisor and moved
several layers below HRSA leadership and decision makers. This occurred
despite the Administration's commitment in 2010 to establish the Oral
Health Initiative, which highlighted several HRSA initiatives to
improve access to oral healthcare, especially for needy populations. We
thank the Committee for its strong support directing HRSA to reinstate
the CDO. However, while the title was restored last year, the function
of the position remains unchanged. The CDO is expected to serve as the
agency representative on oral health issues to international, national,
State, and/or local government agencies, universities, oral health
stakeholder organizations, etc. We urge the Committee to direct HRSA to
fully restore this position with the appropriate duties of a chief
dental officer.
Mr. Chairman, thank you for the opportunity to share with you and
the Subcommittee the importance of access to dental care and the
programs needed to help meet the Nation's changing oral healthcare
needs. The ADA looks forward to working with the Subcommittee in
maintaining oral health as a priority in healthcare.
______

Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA) represents all 66
U.S. dental schools, more than 1,000 allied and advanced dental
education programs, 66 corporations and more than 20,000 individuals.
ADEA submits this testimony on the HHS budget for the record and for
your consideration as you begin prioritizing fiscal year 2019
appropriation requests.

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ADEA member institutions' clinics and extramural dental school
facilities provide dental care to more than 3 million patients
annually. America's dental schools are one of the Nation's largest
dental care safety nets in the United States, providing more than $74
million in uncompensated oral healthcare annually to the uninsured and
under-insured.

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America's academic dental institutions educate and train future
dental care providers and dental and craniofacial researchers. As one
of the largest safety net providers in the United States, for these
services U.S. dental schools provide significant care to both the
uninsured and underserved populations. Research continues to
demonstrate the indivisible link between good oral health and overall
health. Therefore, adequate funding must be provided to programs that
facilitate access to dental care and allow for cutting-edge dental and
craniofacial research.
ADEA urges you to protect funding for Title VII Oral Health
Training programs at HRSA and the National Institute of Dental and
Craniofacial Research (NIDCR) at the National Institute of Health
(NIH). Title VII facilitates dental care access for millions of
Americans and NIDCR fosters globally-recognized dental and craniofacial
research.
As you deliberate funding for fiscal year 2019, ADEA respectfully
urges your support for the following funding requests:
$40.7 Million: Title VII, Section 748, Public Health Service Act
The dental programs in Title VII provide critical training in
general, pediatric and public health dentistry and dental hygiene.
Support for these programs will help ensure an adequately prepared
dental workforce. The funding supports predoctoral dental education and
advanced dental education in pediatrics, general and public health
dentistry. The investment made by Title VII not only educates dentists,
dental hygienists and dental therapists, but it also expands access to
care for underserved persons in community-based settings located in
Health Profession Shortage Areas (HPSA). Following are specific
programs under Title VII that ADEA particularly valuable to protecting
oral health in the U.S.

Section 748 addresses the dental school faculty shortage with the
dental faculty loan repayment program and faculty development courses
for those who teach pediatric, general or public health dentistry and
dental hygiene. Currently, more than 200 open, budgeted faculty
positions exist in dental schools. These two programs assist schools
with recruiting and retaining faculty. Additionally, ADEA is
increasingly concerned that with projected restrained funding, the
dental research community will not be able to grow and the pipeline of
new researchers into academic dental institutions will not meet future
need.
Title VII Diversity and Student Aid programs play a critical role
in diversifying the health professions student body and, thereby, the
healthcare workforce. For the last several years, these programs have
not received adequate funding to sustain the progress necessary to meet
the healthcare needs, including dental care, an increasingly diverse
U.S. population.
The Health Careers Opportunity Program (HCOP) provides a vital
source of support for dental professionals serving underserved and
disadvantaged patients by providing a professional opportunity pipeline
for individuals from these populations. This unique workforce program
encourages young people from diverse and disadvantaged backgrounds to
explore careers in healthcare generally and dentistry specifically.
ADEA requests that this program continue to be funded.
The Area Health Education Centers (AHEC) program enhances high-
quality, culturally competent care in community-based interprofessional
clinical training settings. The infrastructure development grants and
point-of-service maintenance and expansion grants ensure that patients
from underserved populations receive quality care and that health
professionals receive experience working with diverse populations. ADEA
strongly encourages the Committee to continue funding the vitally
important AHEC program.
$452 Million: National Institute of Dental and Craniofacial Research
(NIDCR)
Research serves as the foundation of the profession of dentistry.
Discoveries stemming from dental research have reduced the burden of
oral diseases, led to better dental health for millions of Americans
and uncovered important links between oral and systemic health. ADEA
and dental school researchers across the Nation are grateful for the
increase NIDCR received in fiscal year 2018; however, we note that
according to the Bureau of Labor Statistics, medical inflation has
risen 24 percent since 2010 and the NIDCR budget has increased 8
percent, so our research dollars are not going as far.
The requested increase for fiscal year 2019 will not bring us to
parity with inflation but will bring us closer and provide the stable
and consistent growth that Drs. Collins and Somerman seek for research.
Through NIDCR grants, dental researchers in academic dental
institutions have enhanced the quality of the Nation's dental and
overall health. Dental researchers are now poised to make dramatic
breakthroughs, such as restoring natural form and function to the mouth
and face as a result of disease, accident, or injury, and diagnosing
systemic disease (such as HIV and certain types of cancer) from saliva
instead of blood and urine samples. These future breakthroughs and
countless others, which bolster America's role as a global scientific
leader, require adequate funding.
$20 Million: Centers for Disease Control and Prevention (CDC) Division
of Oral Health
The CDC Division of Oral Health expands the coverage area of
effective prevention programs. This Division 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. Such a strong public health
response is needed to meet the challenges of dental disease affecting
children and vulnerable populations. Decreased funding will have a
significant negative effect on the overall health and preparedness of
the Nation's States and communities.
$18 Million: Ryan White HIV/AIDS Treatment and Modernization Act, Part
F:
Dental Reimbursement Program (DRP) and Community-Based Dental
Partnerships Program
Patients with compromised immune systems are more prone to oral
infections such as periodontal disease and caries (tooth decay). The
DRP is a cost-effective Federal/institutional partnership that provides
partial reimbursement to academic dental institutions for costs
incurred from providing dental care to people living with HIV/AIDS. In
addition, the program provides educational and training opportunities
to dental students, residents and allied dental students. However, DRP
reimbursement only averages 26 percent of the dental schools'
unreimbursed costs, an unsustainable phenomenon. Adequate funding of
the Ryan White Part F programs will help ensure that people living with
HIV/AIDS receive necessary dental care.
ADEA thanks you for considering these funding requests and looks
forward to working with you to ensure the continuation of these
critical programs that improve the oral and systemic health and well-
being of the Nation. Please use ADEA as a resource on any matter
pertaining to academic dentistry and education of the dental workforce
under your purview. For additional information, please contact B.
Timothy Leeth, ADEA Chief Advocacy Officer, at [email protected].
______

Prepared Statement of the American Diabetes Association
For fiscal year 2019, the American Diabetes Association (ADA) urges
the Subcommittee to increase its investment in diabetes research and
prioritize funding for diabetes prevention to help stop the diabetes
epidemic in our country. This is best accomplished by the Subcommittee
providing funding levels of $2.165 billion for the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National
Institutes of Health (NIH), $185 million for the Division of Diabetes
Translation (DDT) at Centers for Disease Control and Prevention (CDC),
and $29 million for the National Diabetes Prevention Program (National
DPP) at CDC.
Over 30 million Americans live with diabetes and an additional 84
million Americans have prediabetes. As a practicing endocrinologist
focusing on diabetes since 1977, I have witnessed remarkable progress
in the last 41 years. Thanks to the medical discoveries and
advancements at the NIH and translational research from CDC,
endocrinologists like me no longer preside over the decline of our
patients, but help them manage their disease-saving lives, saving eyes,
saving feet, and saving kidneys. Gone are the days where we had only
urine tests and beef and pork insulin obtained in slaughterhouses for
treatment. Today, I can work with my patients to manage their diabetes
so they avoid complications and lead normal lives.
In addition to serving as an endocrinologist, I have been the
principal investigator on a number of NIH-funded studies. These studies
have led to better lives for people with diabetes, but NIDDK does not
have the funding to award grants for every promising research
opportunity. My patients live longer, healthier lives because of
studies like the landmark Diabetes Control and Complications Trial
(DCCT) and the many NIDDK-sponsored studies that result from continued
review of the data generated by the follow-up EDIC study. It is because
of the Federal investment in research that diabetes treatment has
advanced so far in the decades of my practice.
The human cost of diabetes is significant. The lifetime risk for
developing diagnosed diabetes among U.S. adults is 40 percent. Today
alone, 4,110 Americans will be diagnosed with diabetes, diabetes will
cause 295 Americans to undergo an amputation, and 137 will enter end-
stage kidney disease treatment.
In addition to the horrendous physical toll, diabetes is
economically devastating to our country and individuals with the
disease. Released in March 2018, ``Economic Costs of Diabetes in the
U.S. in 2017,'' found the total annual cost of diagnosed diabetes in
our country has skyrocketed by an astonishing 26 percent over 5 years,
to $327 billion-$237 billion in direct medical costs and an additional
$90 billion in reduced productivity. This is unsustainable for our
Nation, especially when one in three Medicare dollars is already spent
caring for people with diabetes. We also know that people with
diagnosed diabetes have healthcare costs 2.3 times higher than those
without diabetes. Despite the escalating physical and economic cost of
diabetes to our Nation and families, the Federal investment in diabetes
research and prevention programs at the NIH and CDC still falls short
of the need. The state of our Nation's diabetes epidemic justifies
increased Federal funding in fiscal year 2019.
background
Diabetes is a chronic disease impairing the body's ability to
utilize food. The hormone insulin, which is made in the pancreas, is
needed for the body to convert food into energy. In people with
diabetes, either the pancreas does not create insulin (type 1
diabetes), or it does not create enough insulin and/or cells are
resistant to insulin (type 2 diabetes). Diabetes results in too much
glucose in the blood stream. Blood glucose levels that are too high or
too low (because of medication to treat diabetes) can be life
threatening in the short term and cause long term complications like
kidney failure, blindness, and non-traumatic lower limb amputations.
Diabetes is also a leading cause of heart disease and stroke.
Additionally, up to 9.2 percent of pregnancies are affected by
gestational diabetes, a form of glucose intolerance diagnosed during
pregnancy that places both mother and baby at risk for complications
and for type 2 diabetes later in life. Individuals with prediabetes
have higher than normal blood glucose levels and are at risk for
developing type 2 diabetes, but they can lower that risk with lifestyle
interventions. Diabetes does not have a cure, and management is
necessary every single day. In my experience, working as part of a
team-where the patient is the center and nurses, diabetes educators,
endocrinologists, dietitians, and sometimes mental health professionals
work together to manage care-results in the best outcome for diabetes
patients.
the national institute of diabetes and digestive and kidney diseases at
nih
The ADA requests funding of $2.165 billion for NIDDK in fiscal year
2019 to support new and existing research opportunities. NIDDK is
responsible for major research breakthroughs that have revolutionized
how diabetes is treated and managed in individuals with the disease.
People with diabetes can now use a variety of insulin formulations and
regimens far superior to those used in the past, which has
significantly reduced the risk for serious complications of diabetes.
NIDDK research has led to the development of continuous glucose
monitors and insulin pumps, which are considered life-changing
management tools by patients.
As exciting as these advances are, there is even more promising
research that needs to be funded. Diabetes researchers across the
country are working on exciting proposals that can lead to our ultimate
goal-a cure for this devastating disease. With fiscal year 2019 funding
of $2.165 billion, the NIDDK would be able to fund additional
investigator-initiated research grants to meet critical needs in areas
such as:
--Improving understanding of gestational diabetes, including optimal
gestational age to identify gestational diabetes, best method
to identify gestational diabetes, best treatment for
gestational diabetes, and later impact of gestational diabetes
on the health of mother and child,
--Expanding NIDDK's comparative effectiveness clinical trial testing
different medications to determine the best treatments for type
2 diabetes,
--Improving the treatment of diabetic foot ulcers to reduce
amputations,
--Understanding the relationship between diabetes and neuro-cognitive
conditions like dementia and Alzheimer's disease, and
--Discovering how drugs to treat diabetes may help those facing heart
disease and cancer.
the division of diabetes translation at cdc
The Federal Government's efforts to prevent diabetes and its
serious complications through the DDT and its evidenced-based,
outcomes-focused diabetes programs are essential. The DDT, whose
mission is to eliminate the preventable burden of diabetes through
research, education, and by translating science into clinical practice,
has a proven record of success in primary prevention efforts, as well
as programs to help those with diabetes manage their disease and avoid
complications. I use their work every day to advise patients.
The ADA urges Congress to provide $185 million in fiscal year 2019.
With these resources, the DDT will be able to continue diabetes
prevention activities at the State and local levels. Funding will
support these efforts through the State and Local Public Health Actions
to Prevent Obesity, Diabetes, and Heart Disease grants, with a focus on
improving prevention at the community and health system levels in
populations with highest risk for diabetes. It will support basic and
enhanced diabetes prevention efforts under the State Public Health
Actions grant program for cross-cutting approaches to prevent and
control diabetes, heart disease, and stroke. It will also enable the
DDT to expand its translational research activities to improve diabetes
prevention and continue its valuable diabetes surveillance work.
the national diabetes prevention program at cdc
I am alarmed 84 million Americans have prediabetes and are on the
cusp of developing type 2 diabetes. I practice in an ethnically diverse
area of New York City, and our population has a very high rate of
prediabetes. Programs such as the National DPP can make a significant
dent in the incidence diabetes in this high-risk population. Nine of
ten individuals with prediabetes do not know they have it, and 15--30
percent of individuals with prediabetes develop type 2 diabetes within
5 years. Managed by the CDC, the National DPP is a public-private
partnership of community organizations, private insurers, employers,
healthcare organizations, faith-based organizations, and government
agencies focused on type 2 diabetes prevention.
The National DPP grew out of a successful NIDDK clinical study
showing weight loss of 5 to 7 percent of body weight, achieved by
reducing calories and increasing physical activity to at least 150
minutes per week, reduced risk of developing type 2 diabetes by 58
percent in people with prediabetes and by 71 percent for those over 60
years old. Additional translational research was then done, showing the
program also works in the less-costly community setting-at a cost of
about $425 per participant.
The National DPP supports a national network of local sites where
trained staff provides those at high risk for diabetes with cost-
effective, group-based lifestyle intervention programs. There are four
key components to the National DPP:

1. Community-based diabetes prevention sites where those at high
risk for diabetes attend the intervention program.
2. A national recognition program, coordinated by CDC, to
establish evidence-based standards for participating
intervention sites and provide the quality monitoring to ensure
success.
3. Public and healthcare provider education efforts giving
trustworthy information on the availability of high quality
diabetes prevention programs in communities so people
understand what they need to do when they are diagnosed with
prediabetes.
4. Informed referral networks so healthcare providers can refer
patients with prediabetes to the local intervention sites.
In 2016, the CMS Office of the Actuary found that seniors
participating in a National DPP program have Medicare costs that are
$2,650 lower than non-participants over a 15-month period. Through a
demonstration project administered by the YMCA, we know that this
program both improves health and lowers healthcare costs, positively
impacting our Nation's economy. Because of the tremendous cost-savings,
of April 1, 2018, the National DPP is covered as a Medicare benefit.
The ADA urges Congress to provide $29 million for the National DPP
in fiscal year 2019 to continue its nationwide expansion. This level of
funding for the National DPP will allow CDC to increase the number of
sites that offer this effective program, continue to manage its
recognition program to ensure sites follow the evidence-based
curriculum and achieve the same high level of results, and support
programs as they get setup to be Medicare suppliers.
conclusion
When I started my practice, a large part of my job was witnessing
the disaster as patients who had diabetes for 20 years came in and it
was too late to help them. Luckily, we have moved to helping patients
manage their diabetes to prevent problems and complications, helping
them live long and healthy lives. We can and must continue to make
progress on the diabetes front; we cannot wait. I urge the Subcommittee
to make decisions for fiscal year 2019 appropriations that reflect the
necessity of reversing the human and economic burden of this horrendous
disease. I look forward to working with you and the ADA to stop
diabetes.

[This statement was submitted by Daniel Lorber, MD, FACP, CDE,
Chair,
National Advocacy Committee, American Diabetes Association.]
______

Prepared Statement of the American Educational Research Association
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee; thank you for the opportunity to submit written testimony
on behalf of the American Educational Research Association. AERA
recommends that the Institute of Education Sciences (IES) within the
Department of Education receive $670 million in fiscal year 2019. This
recommendation is also consistent with the request from the Friends of
IES coalition, in which we are a leading member. AERA also recommends
$1.531 billion in fiscal year 2019 for the Eunice Kennedy Shriver
National Institute of Child Health and Human Development (NICHD).
AERA is the major national scientific association of 25,000
faculty, researchers, graduate students, and other distinguished
professionals dedicated to advancing knowledge about education,
encouraging scholarly inquiry related to education, and promoting the
use of research to improve education and serve the public good. Our
members, as well as State and Federal policymakers and practitioners,
rely on IES to provide and support reliable education statistics, data,
research, and evaluations.
IES is the independent and nonpartisan statistics, research, and
evaluation arm of the U.S. Department of Education charged with
supporting and disseminating rigorous scientific evidence on which to
ground education policy and practice. While located within the
Department of Education, the function of IES is more closely aligned
with other Federal research agencies such as the National Science
Foundation and the National Institutes of Health.
We see numerous examples of bipartisan support for scientific
research and to evidence-based decisionmaking. With the passage of the
Every Student Succeeds Act, the introduction of College Transparency
Act, as well as the broad support for the Evidence-Based Policymaking
Commission Act, Congress is directing Federal agencies to inform their
policy and practice decisions with evidence. Unfortunately, these
improvements to the data and research infrastructure require additional
funding necessitating action by your committee.
Now is a critical time to invest in education research, data, and
statistics to produce essential knowledge about education and learning
across all levels of education. It is both efficient and cost-effective
to drive policies, programs, and practices based on scientific evidence
and to continue to assess performance based on rigorous research.
Since IES was created in 2002, it has made visible scientifically-
based contributions to the progress of education. Take, for example,
IES supported-research at the Community College Research Center (CCRC)
that led to significant changes in the remedial education program in
the North Carolina Community College System. In a partnership between
the system and CCRC, there was a shift from remedial education toward
an accelerated structure of developmental education that increased
student retention and degree completion. At the same time, the money
saved from restructuring remedial education was reinvested into STEM
and high-demand technical education. Despite the potential of research
to inform key policy decisions, we have much left to do to provide
high-quality education to all of our students. In addition to old
questions that remain only partially answered--such as how to best
prepare teachers--we have barely begun to understand the opportunities
newly possible by advances in technology.
As States are moving forward implementing their Every Student
Succeeds Act (ESSA) State plans, they are increasingly depending on
their Statewide Longitudinal Data Systems (SLDS). Initially developed
to help States measure accountability to their students, data has
transformed from a hammer to a flashlight, increasing understanding
about student performance and teacher effectiveness. To date, IES has
been unable to meet the State demand for SLDS grants. In 2015, only 16
of 43 applications received grants. Those States that have benefitted
from SLDS grants have clear success to show from the Federal
investment. The House Education and Workforce Committee has heard from
State leaders in Georgia and Mississippi about their use of SLDS to
improve student outcomes in their States. I also want to bring to your
attention the numerous ways that Congress has signaled support for the
use of education data in decisionmaking. The most recent bipartisan,
bicameral draft of the IES reauthorization includes the continuation of
SLDS. Eliminating funding for SLDS would undermine the generation of
essential knowledge and stand in stark contrast to the broad bipartisan
support to increase the use of data to inform policy decisions.
Furthermore, cuts to SLDS hurt States working to build data capacity at
the same time that ESSA is requiring States to make evidence-based
decisions. Rather than eliminating the SLDS program, AERA encourages
this committee to expand upon this very successful program.
Additionally, AERA opposes the proposal to eliminate the Regional
Educational Laboratories in the fiscal year 2019 budget.
As you consider funding for IES in fiscal year 2019, I urge you to
consider the importance of having a recently confirmed permanent
director, a position that has been acting since August of 2014.
Technology and the tools to harness data into knowledge are advancing
at light speed. Our country needs IES leadership to have the funding
and flexibility to support the innovative and ground breaking research
that will enable our educators to best prepare our learners for these
rapidly changing times.
In addition to IES, AERA recommends $1.531 billion in fiscal year
2019 for the Eunice Kennedy Shriver NICHD, consistent with the Friends
of NICHD request. Funding for NICHD supports research at the
intersection of health and education, including the genetic and
behavioral risks for child obesity, the use of opioids by mothers and
potential impact on infant and child brain development, and
interventions for students with learning disabilities who struggle with
reading. This investment in NICHD will allow the institute to align
resources as part of its ongoing strategic planning process, continue
research to both increase understanding of the impact of opioid use
across the educational lifespan and to reduce risk for addiction, and
to bolster the professional development of early career researchers.
Thank you for the opportunity to submit written testimony in
support of $670 million for IES and $1.531 billion for NICHD in fiscal
year 2019. AERA welcomes working with you and your subcommittee on
strengthening investments in essential research, data, and statistics
related to education and learning.

[This statement was submitted by Felice J. Levine, PhD, Executive
Director, American Educational Research Association.]
______

Prepared Statement of the American Geriatrics Society
The American Geriatrics Society (AGS) greatly appreciates the
opportunity to submit this testimony. The AGS is a non-profit
organization of nearly 6,000 geriatrics healthcare professionals
dedicated to improving the health, independence, and quality of life of
all older Americans. As the Subcommittee works on its fiscal year 2019
Labor-HHS Appropriations Bill, we ask that you prioritize funding for
the geriatrics education and training programs under Title VII and
Title VIII of the Public Health Service (PHS) Act, and for aging
research within the National Institutes of Health (NIH)/National
Institute on Aging (NIA).
We are deeply disappointed with proposed cuts to geriatrics
training outlined by President Trump in his budget plan for fiscal year
2019, and are concerned about what these cuts will mean for the care
and health of older adults. Specifically, the President's budget calls
for the health professions programs within HRSA to receive a $451
million cut which would likely zero out funding for the Geriatrics
Workforce Enhancement Program (GWEP).
We urge you to reject this proposal, and ask that the Subcommittee
consider the following funding levels for these programs in fiscal year
2019:
--$51 million for the Geriatrics Workforce Enhancement Program (PHS
Act Title VII, Sections 750 and 753(a) and PHS Act Title VIII,
Section 865)
--An increase of $500 million over the enacted fiscal year 2018 level
for aging research across the NIH, in addition to the funding
allocated for Alzheimer's disease and related dementias
Sustained and enhanced Federal investments in these initiatives are
essential to delivering high quality, better coordinated, and more cost
effective care to older Americans, whose numbers are projected to
increase dramatically in the coming years. According to the U.S. Census
Bureau, the number of people age 65 and older will more than double
between 2014 and 2060 to 98.2 million or 23.5 percent of the
population; and those 85 and older will increase threefold to 19.7
million.\1\ To ensure that our Nation is prepared to meet the unique
healthcare needs of this rapidly growing population, we request that
Congress provide additional investments necessary to expand and enhance
the geriatrics workforce, which is an integral component of the primary
care workforce, and to foster groundbreaking medical research.
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\1\ Colby SL, Ortman JM. Projections of the Size and Composition of
the U.S. Population: 2014 to 2060, Current Population Reports, P25-
1143, U.S. Census Bureau, Washington, DC, 2014.
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programs to train geriatrics healthcare professionals
Geriatrics Workforce Enhancement Program ($51 million)
Our Nation is facing a critical shortage of geriatrics faculty and
healthcare professionals across disciplines. This trend must be
reversed if we are to provide our seniors with the quality care they
need and deserve. Care provided by geriatrics healthcare professionals,
who are trained to care for the most complex and frail individuals, has
been shown to reduce common and costly conditions-such as falls,
polypharmacy, and delirium-that are often preventable with appropriate
care.
The GWEP is currently the only Federal program designed to increase
the number of providers, in a variety of disciplines, with the skills
and training to care for older adults. GWEP seeks to improve high-
quality, interprofessional geriatrics education and training to the
health professions workforce, including geriatrics specialists, as well
as increase geriatrics competencies of primary care providers and other
health professionals to improve care in medically underserved areas. It
supports the development of a healthcare workforce that improves health
outcomes for older adults by integrating geriatrics with primary care,
maximizing patient and family engagement and transforming the
healthcare system.
In July 2015, HRSA announced 44 three-year grant funded programs
located in 29 States that consolidated the Title VIII Comprehensive
Geriatric Education Program and the Title VII Geriatric Academic Career
Award, Geriatric Education Centers, and Geriatric Training for
Physicians, Dentists and Behavioral and Mental Health Providers
programs into the GWEP.
This consolidation-a change made by HRSA in December 2014-provides
greater flexibility to grant awardees by allowing applicants to develop
programs that are responsive to the specific interprofessional
geriatrics and training needs of their communities. While the AGS has
been encouraged by elements of this new approach, we remain concerned
that there is no longer a sufficient focus on the training and
education of health professionals who wish to pursue academic careers
in geriatrics or gerontology. The Geriatric Academic Career Award
(GACA) program is the only Federal program that is intended to increase
the number of faculty with geriatrics expertise in a variety of
disciplines. In the past, the number of GACA awardees has ranged from
52 to 88 in a given grant cycle; in the most recent round of GWEP
grants, it appears that only a small number of the grantees have
dedicated resources to train faculty in geriatrics and gerontology.
At a time when our Nation is facing a severe shortage of both
geriatrics healthcare providers and academics with the expertise to
train these providers, the AGS believes the number of educational and
training opportunities in geriatrics and gerontology should be
expanded, not reduced.
To address this issue, we ask the subcommittee to provide a fiscal
year 2019 appropriation of $51 million for the GWEP. This small
increase would restore GACAs and expand GWEP programs to close current
geographic and demographic gaps in geriatrics workforce training.
research funding initiatives
National Institutes of Health (additional $500 million over fiscal year
2018)
The institutes that make up the NIH and specifically the NIA lead
the national scientific effort to understand the nature of aging and to
extend the healthy, active years of life. As a member of the Friends of
the NIA (FoNIA), a broad-based coalition of aging, disease, research,
and patient groups committed to the advancement of medical research
that affects millions of older Americans-the AGS urges a minimum
increase of $500 million over the enacted fiscal year 2018 level in the
fiscal year 2019 budget for biomedical, behavioral, and social sciences
aging research efforts across the NIH. The AGS also supports an
additional $425 million specific to research on Alzheimer's disease and
related dementias (ADRD), resulting in an NIH-wide dementia research
budget of at least $2.253 billion in fiscal year 2019.
The Federal Government spends a significant and increasing amount
of funds on healthcare costs associated with age-related diseases. By
2050, for example, the number of people age 65 and older with ADRD is
estimated to reach 13.8 million-more than double the number in 2018-and
is projected to cost more than $1 trillion (in 2018 dollars).\2\
Further, chronic diseases related to aging, such as diabetes, heart
disease, and cancer continue to afflict 80 percent of people age 65 and
older and account for more than 75 percent of Medicare and other
Federal health expenditures.\3\ Continued and increased Federal
investments in scientific research will ensure that the NIH and NIA
have the resources to conduct groundbreaking research related to the
aging process, foster the development of research and clinical
scientists in aging, provide research resources, and communicate
information about aging and advances in research on aging.
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\2\ Alzheimer's Association. 2018 Alzheimer's Disease Facts and
Figures. Alzheimers Dement 2018;14(3):367-429.
\3\ National Council on Aging. Chronic Disease Self-Management
Facts. https://www.ncoa.org/news/resources-for-reporters/get-the-facts/
chronic-disease-facts/. Accessed April 18, 2018.
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Additionally, the AGS supports the Ad Hoc Group on Medical Research
recommendation to appropriate at least $39.3 billion in fiscal year
2019 for the NIH, including funds provided through the 21st Century
Cures Act for targeted initiatives. We believe that a meaningful
increase in NIH-wide funding, in combination with aging and ADRD
specific increases, will be essential to sustain the research needed to
make progress in addressing chronic disease, ADRD, and other diseases
that disproportionately affect older people.
Strong support such as yours will help ensure that every older
American is able to receive high-quality care. We thank the
Subcommittee for the opportunity to submit this testimony.
______

Prepared Statement of the American Heart Association
On behalf of 40 million volunteers and supporters, the American
Heart Association praises Congress for boosting funding for the
National Institutes of Health (NIH) and for Centers for Disease Control
and Prevention (CDC) heart disease and stroke prevention programs. We
salute Congress for its sustained focus on the link between disease
burden and funding levels. The association firmly thinks that evidence-
based disease burden measures should guide and inform Congress when
allocating research and prevention funding and setting priorities for
fiscal year 2019.
The association released a study that projects steep increases in
prevalence, medical costs, and subsequent burden of cardiovascular
disease (CVD) on Americans through 2035. It is located at:
www.heart.org/burden. We remain confident that it will be a useful tool
to appropriately align funding and resources to help cut the huge toll
CVD inflicts on our Nation's health and economy.
As our Nation's No. 1 killer and most costly disease, CVD,
including heart disease and stroke, tops the disease burden list. In
2015, stroke and heart failure remained the most costly chronic
conditions in the Medicare fee-for-service program. Today, more than 92
million U.S. adults suffer from some form of CVD. Moreover, recent
projections show that by the year 2035, 45 percent of U.S. adults will
live with CVD at an annual cost of more than $1 trillion.
However, heart disease and stroke research and prevention remain
disproportionately underfunded compared to the devastating burden and
suffering CVD inflicts. And despite a $30-to-$1 return on CVD
investment, NIH continues to invest only 4 percent of its budget on
heart research, just 1 percent on stroke research, and a scant 2
percent on other CVD research. AHA challenges Congress to correct this
glaring disparity, starting with the fiscal year 2019 appropriations
process.
The American Heart Association urges Congress to boost, safeguard,
and sustain NIH and CDC funding and resources. We are committed to
building healthier lives free of cardiovascular diseases and stroke.
Leveraging disease burden measures is key to accomplishing our mission.
funding recommendations: investing in the health of our nation
Despite the renewed danger CVD presents to our Nation's long-term
health and economic stability, research that could ultimately develop a
cure goes unfunded. Insufficient and erratic funding remain our most
difficult obstacles. But, our budget recommendations outlined below are
fiscally responsible and focus on the huge burden CVD inflicts on all
Americans.
Capitalize on Investment for the National Institutes of Health (NIH)
Robust NIH-funded research helps prevent and cure disease,
transforms patient care, propels economic growth, drives innovation,
and preserves U.S. leadership in pharmaceuticals and biotechnology. NIH
continues to be the world's leader of basic research-the basis for all
medical progress and a basic Federal Government role the private sector
cannot emulate. But, our country's competitive edge in research has
been eroded recently by inadequate resources. Specifically, the U.S.
has fallen out of the top 10 in innovation and China is on the path to
surpass our Nation in spending on science research and development,
according to reports.
In addition to enriching health, NIH generates a strong return on
investment. In 2017, NIH supported more than 404,000 U.S. jobs and
nearly $70 billion in economic activity. Every $1 in NIH funding
created $2 in economic activity in 2007. NIH research investments have
led to 210 new medicines winning FDA approval over 6 years. Yet, due to
insufficient funding since 2003, NIH lost over 19 percent of its
purchasing power since 2003, adjusted for inflation, as other countries
have boosted scientific investments, some by double digits. Moreover,
NHLBI extramural heart research dropped 17 percent in constant dollars
since 2002. This could deter early U.S. career scientists from
following careers in research unless Congress acts now.
American Heart Association Advocates: We urge Congress to
appropriate a $2 billion increase for NIH each year over the next
several years to give the agency stable, predictable and sustained
funding boost to continue to restore its purchasing power and enhance
heart and stroke research.
Enhance Funding for NIH Heart and Stroke Research: Investments in
Cures, High ROI
Robust NIH research funding is critical to reducing CVD death
rates. Now, researchers are closer to breakthroughs that could
revolutionize treatments and bring us closer to cures. In addition to
saving lives, NIH research can generate considerable cost savings. For
example, investments in the NIH Women's Health Initiative
postmenopausal estrogen plus progestin trial produced an economic
return of $140 for every $1 invested, leading to 76,000 fewer cases of
CVD. The first NIH tPA drug trial led to a 10-year net $6.47 billion
cut in stroke care costs.
Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
NHLBI research has caused declines in CVD death rates. But, present
funding is not commensurate with CVD burden, nor does it let scientists
build on investments that have led to key advances. For example, a
clinical trial showed a systolic blood pressure of 120 mm Hg in adults
over age 50 cut heart attack, heart failure, and stroke 25 percent and
death 27 percent, compared to the standard treatment target of 140 mm
Hg. Adoption of these targets could save an estimated 100,000 lives and
were used as the basis for new treatment guidelines. Medical engineers
created a cardio patch from human stem cells for use after a heart
attack to replace damaged muscle.
Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
Stroke continues to inflict a massive burden on our Nation's long-
term health and economic stability. An estimated 795,000 Americans will
suffer a stroke this year, and more than 140,000 will die. Many of the
7 million survivors face grave physical, mental, and emotional
distress. Stroke costs an estimated $40 billion in medical expenses and
lost productivity annually. And a recent study projects that stroke's
medical direct costs will triple between 2015 and 2035.
NINDS investment in stroke must be drastically augmented to
capitalize on stroke research progress, including the DEFUSE3 trial
that proves brain imaging can identify patients who will benefit from
clot removal up to 16 hours post stroke; and studies showing that a
specific molecule plays a major function in brain repair after stroke.
Increased stroke funding could enhance the NIH Stroke Clinical Trials
Network, including early stroke recovery; prevent vascular cognitive
damage; expedite comparative effectiveness research trials; develop
imaging biomarkers; refine clot-busting treatments; achieve strong
brain protection; and advance the use of neural interface devices.
Additional funding is necessary to further the BRAIN Initiative.
American Heart Association Advocates: We recommend that NHLBI be
funded at $3.6 billion and NINDS at $2.3 billion.
Increase Funding for the Centers for Disease Control and Prevention
(CDC)
CVD is mainly preventable, yet effective evidence-based prevention
initiatives are not fully executed due to limited resources. In
addition to supporting surveillance and implementation research, the
Division for Heart Disease and Stroke Prevention manages the Paul
Coverdell National Acute Stroke Program. DHDSP, with the Centers for
Medicare and Medicaid Services, directs Million Hearts\TM\ 2022 to
prevent heart attacks and strokes. DHDSP administers WISEWOMAN, to help
uninsured and under-insured, low-income women ages 40 to 64 cut heart
disease and stroke risk by screenings and community resources staging
healthy behavior.
American Heart Association Advocates: We join the CDC Coalition in
asking for $8.445 billion for CDC. The association requests $160
million for the DHDSP to support, strengthen and expand heart disease
and stroke prevention efforts in State, local, and Tribal public health
departments, and enhance surveillance and implementation research. We
ask $37 million to expand WISEWOMAN. And we request $5 million for
Million Hearts\TM\ 2022 to continue implementation of ABCS, develop
innovative scalable ways for communities and the healthcare sector to
execute evidence-based prevention in the highest burden areas and to
expand focus on physical activity, cardiac rehabilitation, and people
age 35-64 whose event rates are on the rise.
conclusion
Recent projections show cardiovascular disease, including stroke,
will continue to impose the highest disease burden on Americans. Our
budgetary recommendations for NIH and CDC will save lives and cut
healthcare costs. We urge Congress to enact our recommendations that
are a wise investment for the long-term health and economic stability
of our Nation. Thank you.

[This statement was submitted by John Warner, M.D., President,
American Heart Association.]
______

Prepared Statement of the American Indian Higher Education Consortium
This statement includes the fiscal year 2019 funding requests of
the Nations' 38 American Indian Tribal Colleges and Universities
(TCUs), with justifications for these modest funding recommendations.
The following is a list of recommendations including Department,
program, and amount sought, per the subcommittee instructions. Detailed
information and justifications are contained in this statement.
Department of Education
Office of Postsecondary Education
--HEA Title III--Part A (Sec. 316): $35,000,000 (discretionary)
--HEA Title III--Part F (Sec. 371): $30,000,000 (mandatory)
--Pell Grants: Increase to $6,230
--Federal TRIO Program: $1.07 billion
--Perkins Career and Technical Education Programs (Sec. 117):
$10,000,000
Department of Health and Human Services
--Administration for Children and Families/Office of Head Start (TCU-
Head Start Partnership Program, sec. 648(g) of the Head Start
Act (42 U.S.C. 9843g)): $8,000,000 in existing funds
--Substance Abuse and Mental Health Services Administration, SAMHSA
(TCU Centers of Excellence): $10,000,000
Institute of Museum and Library Services
--The Institute of Museum and Library Services (IMLS): Reject the
President's proposal to eliminate IMLS funding.
Tribal Colleges and Universities: A Sound Investment for Students & the
Federal Government
Aaron Sansosie of Flatrock, AZ, is a U.S. Army veteran, father of
four, and Navajo Technical University (NTU) student. He is one of
thousands of American Indian and Alaska Native (AI/AN) students gaining
valuable education and technical skills to enter the workforce at
Tribal Colleges. Aaron is enrolled in NTU's Carpentry certificate
program and Building Information Modeling Applied Science associate's
degree program. To achieve his goals, Aaron has been taking 17-19
credits each semester, which keeps his days busy. While the schedule
may seem grueling for any student, it is important to note that Aaron
does this all while sleeping out of his truck. ``The cost of living
here is pretty high, especially in the dorms and having three meals a
day. Sometimes Pell won't cover it all, which leaves me in debt. Even
with my veteran benefits, which help me out a lot, [I need to save],''
explained Aaron, whose desire to help his family and community is
powerful.
Stories like Aaron's can be found across Indian Country as TCUs
attempt to stretch Federal dollars to meet the unique needs of AI/AN
students. In fact, a 2015 economic impact study on the TCUs, conducted
by Economic Modeling Specialists International (EMSI), revealed that
for every Federal dollar invested in the TCUs, the taxpayers receive a
cumulative value of $2.40. The average annual rate of return is 6.2
percent, a solid rate of return that compares favorably with other
long-term investments. On an individual basis, TCU students see an
annual return of investment of 16.6 percent, and the vast majority of
TCU-trained workers remain in Indian Country and contribute to the
local economy. TCUs benefit taxpayers through increased tax receipts
and reduced demand for Federal social services--a win all-round.
Ramifications of the Administration's Proposed Funding Cuts
Imposing cuts to already modest programs that fund institutions
that provide access and strong support to achieve postsecondary degrees
and certificates to some of the Nation's most underserved populations
is neither acceptable nor appropriate. Cuts in any amount from even one
TCU program would threaten accreditation status and most definitely
would result in cuts to faculty and staff--who are already stretched
thin (some teaching five courses/semester)--as well as vital programs
and services that students rely on to complete degree and certificate
programs needed to succeed in their chosen career paths. Programs such
as the TCUs' HEA Title III (Strengthening Institutions) provide
critical funds for faculty; student support programs designed to
improve academic success to bolster their success; preservation of
native language; improvements, renovations, and basic upkeep of campus
buildings and infrastructure; enterprise management systems; and other
items that are critical to the success of a college in offering
students a quality education experience. We strongly urge the
Subcommittee to reject the Administration's proposed cuts to higher
education programs and instead take a measured look at what is working
and continue to build the investment in the TCUs and the students and
communities that they serve.
Specific programmatic requests administered within the departments
and agencies funded under the Labor-HHS, Education appropriations bill,
are as follows:
u.s. department of education
I. Higher Education Act Programs
--Strengthening Institutions Title III-A&F Sec. 316.--TCUs urge the
Subcommittee to fund the discretionary and mandatory funding
for HEA Title III-A&F, Sec. 316 at $65,000,000 in fiscal year
2019. Titles III and V of the Higher Education Act support
institutions that enroll large proportions of financially
disadvantaged students. The TCUs, which truly are developing
institutions, are funded under Title III-A Sec. 316 and provide
quality higher education opportunities to some of the most
rural, impoverished, and historically underserved people in the
country. In fact, more than 50 percent of our students are
first generation; 85 percent participate in Federal financial
aid; average family income is less than $21,000; and local
unemployment rates often exceed 50 percent. The goal of HEA-
Titles III/V programs is ``to improve the academic quality,
institutional management and fiscal stability of eligible
institutions... 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 AI/AN students and their communities, and to
effectively prepare them to succeed in a globally competitive
workforce. Yet, in fiscal year 2011 this program was cut by
over 11 percent and then received subsequent cuts, including
sequestration, until last year. Despite increases in fiscal
year 2018, TCUs still have not recovered from the earlier cuts
to this vitally important program. It is also important to note
the size of the TCU program, as compared to other Titles III/V
programs, such as the HBCU and HSI programs. When greatly
appreciated increases are proposed, but which use a common
percentage to allocate the increases, TCUs are at a
disadvantage because of our program's size. For example, in
fiscal year 2017, when funding was increased for all Titles
III/V programs, the TCU program was the only program that
actually lost ground, and we ended the year funded at a level
lower than the level in either the House or Senate bill.
--Pell Grants (increase maximum Pell to $6,230).--The importance of
Pell Grants to TCU students cannot be overstated. Eighty-five
percent of TCU students receive Pell Grants, primarily because
their income levels are so low and they have fewer sources of
financial aid than students at State-funded and other
institutions. At TCUs, Pell Grants are doing exactly what they
were intended to do: they serve the needs of the lowest income
students by helping them gain access to quality postsecondary
education, an essential step toward becoming active, productive
members of the workforce. AIHEC supports the request of the
Student Aid Alliance to increase to the maximum Pell Grant to
$6,230.
--TRIO (increase to $1.07 billion).--Retention and support services
are vital to achieving success with traditionally underserved
students who have few, if any, higher education role models.
TRIO programs were created out of a recognition that college
access is not enough to ensure advancement and that multiple
factors work to prevent successful completion by many low-
income and first-generation students and students with
disabilities. In the final fiscal year 2018 consolidated
appropriations bill, TRIO received a much-needed $60 million
increase. AIHEC supports the request of the Student Aid
Alliance to increase funding for the Federal TRIO program to
$1.07 billion. It is critical that Congress sustain and
increase support for TRIO programs so that low-income and
minority students have the support they need to access and
complete postsecondary education programs.
II. Carl D. Perkins Career and Technical Education Programs
--Tribally Controlled Postsecondary Career and Technical
Institutions.--AIHEC requests $10,000,000 to fund grants under
Sec. 117 of the Perkins Act. Section 117 of the Carl D. Perkins
Career and Technical Education Act provides a competitively
awarded grant opportunity for tribally chartered career and
technical institutions which provide vitally needed workforce
development and job creation education and training programs to
AI/ANs from tribes and communities with some of the highest
unemployment rates in the Nation.
--Native American Career and Technical Education Program (NACTEP).--
NACTEP (Sec. 116) reserves 1.25 percent of appropriated funding
to support AI/AN 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.
u.s. department of health and human services programs
I. Administration for Children and Families--Office of Head Start
--Tribal Colleges and Universities Head Start Partnership Program (42
U.S.C. 9843g).--AIHEC requests that $8,000,000 be designated
for the TCU-Head Start Partnership program. In 2017, 74.5
percent of Head Start teachers nationwide held a bachelor's
degree as required by Federal law; but less than 42 percent of
Head Start teachers met the requirement in Indian Country
(Region 11), and only 70 percent of workers in Region 11 met
the associate-level requirements, or were enrolled in associate
programs, compared to 90 percent nationally. This disparity in
preparation and teaching should alarm the Subcommittee. It
requires our immediate attention: AI/AN children deserve, and
clearly need, qualified teachers. TCUs are the most cost
effective way for filling this inexcusable gap. From 2000 to
2007, the U.S. Department of Health and Human Services provided
modest funding for the TCU-Head Start Program, which helped
TCUs build capacity in early childhood education by providing
scholarships and stipends for Indian Head Start teachers and
teacher's aides to enroll in TCU early childhood/elementary
education programs. Before the program ended in 2007
(ironically, the same year that Congress specifically
authorized the program in the reauthorization of the Head Start
Act), TCUs had trained more than 400 Head Start workers and
teachers, many of whom have since left for higher paying jobs
in elementary schools. Today, TCUs such as Salish Kootenai
College in Pablo, Montana are providing culturally based early
childhood education free of charge to local Head Start
professionals. Bay Mills Community College provides online
education programming for $50/credit to Head Start staff
nationwide. However, many Head Start programs are paying far
more for other sources to provide training. With the
restoration of this modestly funded program, TCUs can aid in
building an early childhood education workforce to better serve
the education needs of our AI/AN children. The Head Start
program was increased by more than $610 million last year.
Please use some of this funding to reestablish this critically
needed program.
II. Substance Abuse and Mental Health Services Administration (SAMHSA)
--NEW Tribal College and University Centers for Excellence in
Behavioral Health/Substance Abuse Prevention ($10,000,000).--
AIHEC requests $10,000,000 to establish this program. The goal
of the TCU Centers of Excellence program, similar to an
existing SAMHSA program for HBCUs, is to grow a well-skilled
and culturally competent AI/AN behavioral health workforce by
developing an apprenticeship-based network of TCUs and partners
from the health industry and local, Tribal, State, and regional
providers. The TCU Centers of Excellence would share best
practices in curriculum development, program implementation,
and apprenticeships; recruit students to careers in behavioral
health fields to address mental and substance use disorders;
provide training that can lead to careers in the behavioral
health fields; and prepare students for achieving credentials
in behavioral health fields. The TCU Centers of Excellence
would emphasize education, awareness, workforce training, and
preparation for careers in mental and substance use disorder
treatment, prevention and research, including addressing opioid
abuse prevention, opioid use disorder treatment, serious mental
illness, and suicide prevention.
AI/AN college-aged youth (ages 15-24) are the most at-risk group in
the Nation. Suicide, alcohol/substance abuse, domestic
violence/abuse, extreme poverty are all too common to TCU
students and their families. A seminal behavior health survey
of TCU students,\1\ revealed that 50 percent of TCU students
reported being physically intimidated, assaulted, or bullied/
excessively teased by a peer. Nearly 25 percent reported having
used opioids, compared to under 9 percent of mainstream college
students (2013 national survey--the only comparable data). Of
TCU students who had used opioids, 25 percent reported feeling
signs of addiction, and nearly 34 percent had taken opioids
without a prescription in the last 3 months. AIHEC and
partnering entities are on the leading edge nationally in
collecting this type of data due to modest grants from the
under-funded ``Native American Research Centers on Health''
program, operated by the National Institutes of Health. TCUs
collect this data, because we want to address the problem
before it spirals out of control. However, while we advocate
annually for sustained community-based intervention in Indian
Country and try to do what we can with little or no resources,
the problem is nearly beyond our ability to address it.
Already, the death rate among AI/ANs from heroin overdose has
increased 236 percent between 2010 and 2014. The CDC reported
that in 2014, AI/AN opioid related deaths were triple the rate
of African-Americans and Hispanic Whites; yet, while States and
others receive funding, TCUs--which have proven their fiscal
responsibility, ability to effect change, and leadership in
emerging areas--must continue to do more with less.
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\1\ TCU-CCC Baseline Survey Conducted in 22 TCUs, March 2015-Feb
2016. Preliminary Data. This research is supported by grants from the
NIAAA, 1R01AA022068 and the NIMHD, 5P60-MD006909 through the National
Institutes of Health.

``Administrators at [our college believe] that our decreasing
enrollment of degree seeking students is attributed to the
increasing number of community members who are addicted to
meth, heroin, and prescription drugs,'' says Fort Peck
Community College (Poplar, MT) president, Haven Gourneau.
``[N]o one wants to be an addict, and if asked every addict
would willingly take a 'magic' pill that would cure them if
they could. With that said, we know there is no 'magic' pill
and so we will continue to see a decline in our community
socially and economically unless we can beat these
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addictions.''

As engaged, place-based institutions, TCUs are committed to
addressing the many challenges facing our communities,
including the growing opioid epidemic. TCUs are leading the way
through student-based participatory research to identify the
specific needs of tribal communities (youth and students), so
that community-relevant solutions can be identified and
culturally adapted, tested, and then shared with others.
SAMHSA, which has an ongoing effort with HBCUs, seems an
appropriate agency to administer the TCU Centers for Excellence
in Behavioral Health/Substance Abuse Prevention.
the institute of museum and library services (imls)
AIHEC requests that Congress reject the recommendation to eliminate
IMLS funding. IMLS is critically important to sustaining and growing
TCU libraries, many of which are also the public library for their
communities. Recently, eight TCUs received IMLS enhance grants that
were used to address important issues of literacy in the community;
digitizing tribal newspapers and cultural enrichment classes/lecture
series for access through States' library systems; increasing community
awareness and involvement in library-based activities and programs; and
creating classroom curriculum kits addressing AI/AN students. In the
North Slope Region of Alaska alone, seven public libraries, operated
through Ilisagvik College in Barrow, would be forced to close, leaving
the most isolated Americans without access to library or reading
services. In conjunction with the TCUs, IMLS is instrumental in
preserving tribal culture. The elimination of IMLS would be devastating
to generations past, present, and future.
We respectfully request that the Members of the Subcommittee
continue to recognize the significant contribution of the Tribal
Colleges and Universities to their students, their communities, and the
Nation as a whole by continuing and expanding the vital Federal
investment in our institutions. Thank you.
______

Prepared Statement of the American Library Association
The American Library Association (ALA) is the oldest and largest
library association in the world, with more than 58,000 librarians and
120,000 academic, public, school, government, and special libraries in
every State and Congressional district. Libraries are visited over 2.7
billion times every year and are entities that produce dramatic impacts
for businesses and millions of Americans every day in communities large
and small throughout the Nation. ALA urges the Subcommittee to include
in its fiscal year 2019 appropriations bill at least $189.3 million for
programs under the Library Services and Technology Act (LSTA), and at
least $27 million for the Innovative Approaches to Literacy (IAL)
program under the Department of Education.
On behalf of ALA, I want to thank the Subcommittee for the
opportunity to provide comments in support of two important, tested,
cost-effective and successful programs.
Libraries serve a vital and unique role in communities across the
country by providing a growing range of services, including many on-
line services making today's technology-focused libraries 24-hour
enterprises offering much more than they did 20 years ago.
With funding from the $189.3 million LSTA, 120,000 public,
academic, government and other libraries advance Employment,
Entrepreneurship, Education, Empowerment and Engagement (The E's of
Libraries) in communities across the country.
Employment
--73 percent of public libraries assist patrons with job applications
and interview skills.
--LSTA funds training for school and public librarians to prepare
students for today's competitive job market.
Entrepreneurship
--Nearly 100 percent of public libraries offer economic/workforce
services; about half of those provide entrepreneurship and
small business development services.
--LSTA funds allow entrepreneurs in rural communities to receive
business development assistance from a skilled business &
technology outreach librarian.
Education
--98 percent of public libraries provide formal or informal
technology training.
--LSTA funds support teen maker labs teaching teens 3D file creation
and printing, coding and circuitry in emerging technologies.
Empowerment
--Nearly 100 percent of public libraries offer no-fee public access
to Wi-Fi and computers.
--LSTA funds provide online exam preparation tools at libraries that
would otherwise be cost prohibitive, enabling patrons to
improve career prospects and education.
Engagement
--97 percent of public libraries help people apply for government
services online.
--LSTA funds enable veterans to claim well-earned benefits to further
their education, get medical treatment, start a business, and
transition to civilian life.

The bulk of LSTA funds are distributed to each State through the
Institute of Museum and Library Services (IMLS) according to a
population-based grant formula. Each State must provide a 34 percent
match and determines at the State level how to meet local needs and
best allocate its LSTA grant awards. Libraries have used LSTA funding
for a broad range of diverse and innovative programs that profoundly
touch and better the lives of tens of millions of Americans in every
State in the Nation, including particularly service to the disabled,
veterans, and job seekers. LSTA is truly a local decisionmaking success
story and a shining example of how a small Federal investment can be
efficiently and reliably leveraged into dramatic State and local social
and economic results. Here are just a few current examples made
possible by LSTA:
--The Pierce County Library (WA) utilized an LSTA grant to support
Open Lab, a program preparing soldiers transitioning to
civilian life by improving their technology skills and helping
them find new careers in the digital world. More than 1,400
people enrolled in the program and over 500 earned a Microsoft
Technology Associate Certification.
--The St. Louis County (MO) Library District is using its LSTA grant
to address a need for a healthier community. The grant is
supporting a project to improve health literacy, promote
healthy eating, helping patrons learn nutritious cooking
skills, and creating classes on exercise, understanding health
restrictions, and aging wisely.
--The Wilcox County (AL) Library received an LSTA grant to support a
pilot program that helps residents learn the skills to run
small home-based or online businesses. The pilot proved so
successful that the library was forced to find space for larger
classes.

Thanks to LSTA and other IMLS funds, many State libraries can
support Libraries for the Blind and Physically Handicapped or Talking
Book services, which provide access to reading materials in alternate
formats. There is no dedicated Federal funding stream for these
individuals at the local and State level. LSTA Grants to States funding
often fills this need.
Accordingly, ALA asks that the Subcommittee provide at least $189.3
million for LSTA in fiscal year 2019 to ensure that Americans of all
ages continue to have access to the life- sustaining, -affirming and--
expanding resources at their local library. ALA respectfully submits
that there can be few, if any, more democratic, cost-effective and
impactful uses of Federal dollars than LSTA in the entirety of the
Federal budget.
In addition to supporting LSTA, ALA also asks that you maintain
fiscal year 2018's modest, but critical, Federal investment of $27
million in the Innovative Approaches to Literacy (IAL) program, which
was authorized under Every Student Succeeds Act last year. IAL provides
competitive awards to school libraries and national not-for-profit
organizations (including partnerships that reach families outside of
local educational agencies) to put books into the hands of children and
their families in high-need communities.
Providing books and literacy support for children is crucial to
their--and the Nation's--economic futures. Studies have shown that
developing early childhood reading proficiency is directly correlated
to success in K-12 and college education and in careers. IAL also
supports parental engagement in their children's reading life and
focuses on promoting student literacy from birth through high school.
IAL grants have been awarded during the life of the program to almost
every State in the Nation. Schools across the country have received
grants, including the Northwest Artic Borough (AK) School District,
Dillon School District Four (SC), and Karnes City (TX) Independent
School District as well as many others. We urge the Subcommittee to
foster this work by continuing to invest at least $27 million in IAL.
ALA understands the tight fiscal constraints on the Subcommittee
and we appreciate its continued dedicated support of LSTA and IAL.
Thank you for your commitment to sustaining and strengthening our
communities and our Nation by supporting America's libraries.
______

Prepared Statement of the American Liver Foundation
summary of fiscal year 2019 recommendations
_______________________________________________________________________

--Please provide the National Institutes of Health (NIH) with a
funding increase of at least $2 billion for fiscal year 2019 to
bring total funding up to a minimum of $39.1 billion.
--Please continue to support and encourage liver-related medical
research and public health activities with key committee
recommendations.
--Please provide the Health Resources and Services Administration
(HRSA) with a funding level of at least $8.5 billion for fiscal
year 2019 and ensure adequate support for organ donation
activities.
--Please provide the Centers for Disease Control and Prevention (CDC)
with a meaningful funding increase for fiscal year 2019 and
facilitate important activities, including a liver cancer
awareness campaign.
--Please provide dedicated resources to address the intersection of
the opioid epidemic and the spike in infectious diseases, thus
ensuring impacted communities have access to testing and
linkages to care for affected individuals.
_______________________________________________________________________

Thank you for the opportunity to submit testimony on behalf of the
American Liver Foundation (ALF). Chairmen Blunt and Shelby, Ranking
Member Murray, Vice Chair Leahy, and distinguished members of the
Subcommittee, the community would like to take this opportunity to
extend its thanks for the significant investment in NIH and CDC secured
through fiscal year 2018. The notable fiscal year 2018 funding
increases will have a significant impact on medical research and public
health activities. Thank you again.
history
ALF was created in 1976 by the American Association for the Study
of Liver Disease (AASLD). This organization of scientists and
healthcare professionals was concerned with the rising incidence of
liver disease and the lack of awareness among both the general public
and the medical community. The mission, the programs and the services
provided by American Liver Foundation complement the great work of
AASLD. American Liver Foundation makes a measurable difference in the
fight against liver disease by providing financial support for medical
research, education for medical professionals, and advocacy and
information for patients and their families, and by creating public
awareness campaigns about liver wellness and disease prevention.
facts
The liver is one of the body's largest organs, performing hundreds
of functions daily including, removal of harmful substances from the
blood, digestion of fat, and storing of energy. Non-alcoholic fatty
liver disease (NAFLD), hepatitis C, and heavy alcohol consumption are
the most common causes of chronic liver disease or cirrhosis (severe
liver damage) in the U.S. Approximately 30 percent of adults and 3-10
percent of children have excessive fat in the liver or NAFLD which can
lead to a severe liver disease called non-alcoholic steatohepatitis
(NASH). Approximately 4.4 million Americans are living with Hepatitis B
or C but most do not know they are infected. More than 2 million
Americans are living with alcohol related liver disease. Approximately
5.5 million Americans are living with chronic liver disease or
cirrhosis. Vaccinations for hepatitis A and B and treatments for
hepatitis C are helping to change the course of this chronic life
altering disease for the patient community.
the opioid epidemic
CDC has dubbed opioids and the infectious diseases that arrive in
the wake of the opioid crisis a ``dual epidemic''. Due to the rise in
rates of injection drug use, CDC has identified a 400 percent increase
in rates of hepatitis C among 20-29 year olds and a 300 percent
increase among 30-39 year olds. The lack of an effective response for
affected communities will prevent the eradication of hepatitis and lead
to rising healthcare costs. Compounding the current problem is the
reality that hepatitis symptoms do not emerge for years and many are
unaware of their health status. However, new research suggests that
when individuals receive testing and proper health services, the
awareness of hepatitis or HIV infection often leads to a reduction in
opioid abuse. Please provide meaningful funding to address opioid
related infectious diseases.
liver cancer awareness program
CDC hosts many important programs for cancer as well as chronic
disease, but none focused on preventing liver cancer. While liver
cancer is a leading killer, it is also preventable and more easily
managed if diagnosed early. However, risk factors are not well known
and there is an overall lack of public and professional awareness. CDC
should have resources and encouragement to partner with stakeholder
organizations and engage in a comprehensive, collaborative effort to
improve public health with a liver cancer awareness campaign.
organ donation
Consistently, the number of organs available for transplantation on
an annual basis amounts to only a fraction of the number of patients on
the transplant list. Compounding this situation is the fact that fatty
liver disease affects a large and growing number of individuals and
makes livers unavailable for transplantation. Another complicating
factor is the fact that the rationing of cures for hepatitis ensures
that many patients who could otherwise be healthy end up on the
transplant list too and arbitrarily deny available organs to other
patients facing a variety of life-threatening illnesses. Please promote
organ donation and otherwise work to ensure Medicaid and other patients
impacted by hepatitis receive curative therapy when medically
appropriate.
liver research
The National Commission on Digestive Diseases previously worked to
establish a long-range digestive disease research plan that NIH and the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) has worked to implement. This plan along with additional
resources has led to meaningful growth in the liver, liver diseases,
and liver cancer research portfolios.
carolyn's story
My name is Carolyn Evans. In 1992, I was diagnosed with a rare
liver disease, Primary Biliary Cholangitis. To this day, no one knows
what causes PBC, nor do they have a cure other than an eventual
transplant. Research has developed medication that helps slow the
progression of the disease in many, not all, patients. As a young mom
with two children, this was devastating news. PBC's outward symptoms
include extreme fatigue and unbelievable itching, but otherwise, it is
a silent killer. ``But you look fine'' are comments I heard daily.
Internally, my liver was killing itself. I became very ill on the
inside, still ``looking fine'', and 14 years later was told I needed a
liver transplant. Living in the NY/NJ area, I was told that I would die
from PBC before a traditional liver donation would be possible and to
receive a transplant I needed a living donor liver transplant. I was
fortunate to receive my living donor liver transplant at Mt. Sinai
Hospital in NYC in 2006.
Funding for testing and treating liver patients with curable
diseases serves many and ultimately helps other patients. The risk of
liver cancer for that individual is greatly reduced once cured. Once
treated, those patients come off the transplant list, thus freeing up
all donated livers for patients, like me, whose only end treatment for
their disease is a transplant. Continued research is critical in order
to find new treatments and cures for all liver diseases, including PBC.
In addition to the health and quality of life of the patient, there are
many additional issues that arise when living with liver disease;
lifetime medication costs and medical coverage for those facing
transplant, and continued lifetime treatment. After transplant, the
risk to other organs becomes a bigger concern and regular monitoring is
required. I will continue to advocate for others with liver disease in
the hope that one day science will find a way to treat and cure all
those dealing with the challenges, fears, and threat of death that I
faced over 26 years ago.

[This statement was submitted by Tom Nealon, CEO, American
Liver Foundation.]
______

Prepared Statement of the American Physiological Society
The American Physiological Society (APS) thanks the subcommittee
for its ongoing support of the National Institutes of Health (NIH). The
$3 billion funding boost you provided in fiscal year 2018, following on
the $2 billion increases you provided in fiscal year 2016 and 2017,
have put the NIH on a path toward sustainable budget growth. These
much-needed increases will help NIH address critical health problems
and emerging challenges through cutting-edge research. The APS urges
you to sustain this vital effort by providing the NIH budget with at
least $39.3 billion in fiscal year 2019.
Breakthroughs in basic and translational research are the
foundation for new drugs and therapies that help patients, fuel our
economy, and provide jobs. Federal investment in research is essential
because the NIH is the primary funding source for discovery research
through its competitive grants program. We look to the private sector
to develop new treatments, but the private sector relies upon this
federally-funded research to identify where to find the next break-
through . This system of public-private partnership has been critical
to U.S. leadership in the biomedical sciences. A recent article in the
Proceedings of the National Academy of Sciences showed that all of the
210 new molecular entities approved by the Food and Drug Administration
between 2010 and 2016 were associated with NIH-supported research.
Importantly, 84 of those new drugs were first-in-class, meaning they
work through a novel mechanism of action or target.\1\
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Federal research dollars also have a significant impact at the
local level: Approximately 83 percent of the NIH budget is awarded to
some 30,000 researchers who work in institutions throughout the
country. They in turn use these grant funds to train students, pay
research and administrative staff, purchase supplies and equipment, and
cover other costs associated with their research. According to an
updated 2018 report, NIH research funding in fiscal year 2017 supported
more than 400,000 jobs nationwide, generating nearly $69 billion in
total economic activity nationwide.\2\
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2018/02/NIHs-Role-in-
Sustaining-the-U.S.-Economy-2018-Update-FINAL.pdf.
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The increases Congress has provided NIH over the last 3 years are
helping to correct the devastating effects of sequestration and several
years of budgets that declined in real terms due to inflation. To keep
the agency on the right path forward, we urge you to continue providing
meaningful and predictable annual budget increases that will keep up
with the rate of inflation and take full advantage of the incredible
opportunities for discovery that are before us.
As specified in the 21st Century Cures Act, NIH continues to pursue
a number of important initiatives including the Cancer Moonshot, the
All of Us program (formerly the precision medicine initiative), and the
Brain Research through Advancing Innovative Neurotechnologies (BRAIN)
Initiative. These programs focus resources on specific areas of
scientific opportunity that are ripe for innovation, but it is
important to bear in mind that these projects build upon decades of
basic research. If we are to advance our knowledge and lay the
groundwork for similar opportunities for innovation in the future, NIH
must continue to invest in creative investigator-initiated research.
Over the past several decades, NIH has used a merit-based peer
review system to identify and fund the best research proposals. To
date, NIH has supported the work of 153 Nobel Laureates, including the
2017 winners of the Chemistry and Physiology or Medicine prizes. Thanks
to NIH research, Americans can expect to live longer and healthier
lives. NIH also plays an important role in training the next generation
of scientists, supporting trainees through individual fellowships and
institutional grants as they complete their graduate degrees and seek
the post-doctoral training necessary to pursue successful independent
research careers.
Today significant challenges loom before us: The opioid epidemic
has become a national public health crisis. An aging population will
bring an increase in diseases that contribute to death and disability
such as heart disease, diabetes, kidney disease, arthritis, and cancer.
New and emerging infectious diseases will require us to be able to make
a nimble investment of resources. If we are to continue to advance new
and innovative ways to address these and other challenges on the
horizon-including developing the workforce necessary to do so-the NIH
will need stable and predictable funding increases in future years.
The APS joins the Federation of American Societies for Experimental
Biology (FASEB) in urging that NIH be provided with no less than $39.3
billion in fiscal year 2019. This represents a $2 billion increase over
fiscal year 2018 in addition to 21st Century Cures funding.
The American Physiological Society is a professional society
dedicated to fostering research and education as well as the
dissemination of scientific knowledge concerning how the organs and
systems of the body work. The Society was founded in 1887 and now has
more than 11,000 member physiologists. APS members conduct NIH-
supported research at colleges, universities, medical schools, and
other public and private research institutions across the U.S.

[This statement was submitted by Jeff Sands, MD, President,
American
Physiological Society.]
______

Prepared Statement of the American Psychological Association
The APA is the largest scientific and professional organization
representing psychology in the U.S.: its membership includes over
116,000 researchers, educators, clinicians, consultants and students.
Many programs in the Labor-HHS-Education bill impact science,
education, and the diverse populations served by clinical
psychologists.
department of health and human services
Administration for Community Living/Administration on Aging
APA supports $187.5 million in funding to support the vital role of
family caregivers in caring for older adults and the fiscal year 2018
funding levels for the Developmental Disabilities Act, Independent
Living, Limb Loss, Traumatic Brain Injury and Paralysis Resource Center
programs.
Administration on Children and Families
APA supports $1.7 billion in funding for the Social Services Block
Grant for fiscal year 2019, which allows States and territories to
provide vital social services including protective services, special
services to people with disabilities, adoption services, and employment
services. In addition, to ensure that the most vulnerable families have
opportunities to thrive in their schools and communities, APA
recommends $100 million for Title I and $80 million for Title II of the
Child Abuse Prevention and Treatment Act (CAPTA).
Centers for Disease Control and Prevention (CDC)
The Committee is urged to provide $8.445 billion for the Centers
for Disease Control and Prevention's programs for fiscal year 2019,
including $50 million in funding for public health research into
firearm morbidity and mortality prevention. We also urge you to protect
CDC's National Center for Health Statistics' budget from further cuts
and provide the agency with $175 million in budget authority in fiscal
year 2019, $15 million more than fiscal year 2018.
APA strongly supports funding of $327 million for the Title X
Family Planning Program. Title X is the sole source of Federal funding
for family planning for underserved populations, and provides vital
access to birth control, cancer screenings, and testing for sexually
transmitted infections for those who would otherwise not have access to
these services.
APA requests $660 million for the Maternal and Child Health Block
Grant and recommends continued funding of $5 million for the Maternal
and Child Health Bureau to support depression screening and treatment
for pregnant women.
National Institutes of Health
APA supports funding of at least $39.3 billion in fiscal year 2019
for the NIH, including funds provided through the 21st Century Cures
Act for targeted initiatives. This funding level would continue a
trajectory of steady and predictable annual increases, allowing for
meaningful growth above inflation in the base budget that would expand
NIH's capacity to support promising science in all disciplines--and
would ensure that the Innovation Account supplements the agency's base
budget, as intended.
Research to Combat Opioid Abuse.--APA strongly encourages NIH to
more fully examine the obstacles and opportunities to combat the opioid
epidemic affecting pregnant women and children. The consequences of
untreated illicit substance use by pregnant women and children are
unique in their potential to impact the next generation. These
consequences include premature birth, low birth weight, being small for
gestational age; and in the longer term, behavioral and cognitive
effects such as attention deficit disorders, language development, and
emotional reactivity.
APA lauds the recently announced NIH HEAL (Help End Addiction Long-
term) Initiative which will advance research in critically important
programmatic areas including expanding therapeutic options for treating
addiction, increasing access to non-pharmacologic treatments for
chronic pain, an expanded focus on neonatal abstinence syndrome, and
integrating substance use treatment within primary care and criminal
justice settings. Missing from the rollout of the HEAL Initiative was
any reference to the highly successful community prevention research
portfolio managed by the National Institute on Drug Abuse (NIDA), which
has demonstrated decreases in prescription drug misuse in rigorously
designed randomized controlled trials. APA recommends that NIH include
primary prevention research as the HEAL Initiative moves forward.
Loan Repayment Program for Pain and Addiction Research.--APA
recommends that NIH immediately expand its Loan Repayment Program
beyond the five currently eligible extramural programmatic areas to
include mission-oriented pain and addiction research. Although some
pain and addiction research could be effectively subsumed under the
category of ``clinical research,'' APA believes the opioid crisis
requires that NIH place added emphases on the training of scientists in
these inextricably linked research domains as well as emphasize the
primacy of non-human animal pain and addiction research. It was the
HIV/AIDS epidemic that led Congress to address that critical area of
need by authorizing the first LRP focused on AIDS Research in 1988.
Congress expanded the scope of eligibility for the program with the NIH
reauthorization in 2000 to include Clinical Research, Pediatric
Research, Health Disparities Research, Contraception and Infertility
Research, and Clinical Research for Individuals from Disadvantaged
Backgrounds but to our knowledge, has not revisited those categories
since.
NIMH behavioral research--APA appreciates the research supported by
NIMH to address the causes, prevention, underlying mechanisms, and
treatment of mental disorders, including current work in areas such as
early detection of psychosis and suicide prevention. Much of NIMH's
focus and investment in the last decade has been on understanding the
biological mechanisms underlying mental disorders, with funding
directed particularly to research in neuroscience and genomics.
Although biological approaches to understanding and treating mental
disorders are indispensable, we believe that research addressing the
behavioral and social levels of analysis, including work that does not
directly examine neural or genomic phenomena, are also necessary and
can provide unique insights for furthering our understanding of the
causes and mechanism of mental disorders, and developing improved
methods for preventing and treating them. APA encourages the Committee
to join us in urging NIMH to broaden the portfolio of research it
supports.
Clinical Trials Definition.--APA's basic scientists are
understandably concerned that NIH's recently adopted definition of
clinical trials now includes almost all basic research involving humans
and burdensome new requirements for scientists whose research has not
been considered ``clinical'' until now. We support NIH's goal to
register all human research and report all results, but the
definitional change does not further the stated aims of quantifying all
NIH-supported research. We thank the Committee for its support on this
issue, and, with our scientific association allies, hope to continue to
engage with NIH to resolve the continuing difficulties caused by the
definitional change.
Substance Abuse and Mental Health Services Administration
SAMHSA provides critical resources to reduce the impact of
substance use disorders and mental illness on America's communities,
including responding to the opioid crisis. APA supports $5.666 billion
in funding for the agency that includes support for the following
programs. APA urges increased funding of the Minority Fellowship
Program to reach $20 million by 2020. Ethnic minorities represent 30
percent of the U.S. population, but only 23 percent of recent
doctorates in psychology, social work and nursing. APA recommends $72
million for Project AWARE (Advancing Wellness and Resilience in
Education) and level funding for the National Child Traumatic Stress
Network, to ensure access for children to high quality and evidence-
based mental and behavioral health services.
APA strongly supports the Garrett Lee Smith Memorial Act (GLSMA)
programs, which help meet the mental and behavioral health needs of
youth and young adults by increasing access to prevention, education,
and outreach services to reduce suicide risk in States, tribes, and
institutions of higher education. APA encourages Congress to maintain
current funding levels for these programs in fiscal year 2019,
including $35.4 million for the State and Tribal Youth Suicide
Prevention Program, $7 million for the Campus Mental and Behavioral
Health Program, and $6 million for the Suicide Prevention Resource
Center.
Health Resources and Services Administration (HRSA)
There is overwhelming evidence that our Nation's mental and
behavioral health workforce must be expanded to respond adequately to
the opioid epidemic, as well as the healthcare needs of our
increasingly diverse and aging population. Psychologists, as
researchers and practitioners, are integral to a healthcare system in
which more than half of U.S. mortality is linked to behavior, and in
which mental and behavioral disorders are a significant public health
concern.
APA supports robust investments in the Bureau of Health Workforce,
which supports critical mental health workforce training programs. APA
strongly encourages the Committee to maintain $36 million for HRSA's
Mental and Behavioral Health Account in fiscal year 2019, with at least
$15 million for the interprofessional Graduate Psychology Education
Program to increase the number of health service psychologists trained
to provide integrated services to high-need, underserved populations in
rural and urban communities. In addressing the opioid epidemic, APA
urges the Committee to recognize the growing need for highly trained
mental and behavioral health professionals to deliver evidence-based
behavioral interventions for pain management. In addition, APA
recommends the Committee provide $75 million for Behavioral Health
Workforce Education and Training Program, and $41 million for the
Geriatric Workforce Enhancement Program.
department of education
APA supports an increase in funding for Federal grant programs that
support graduate study, including the Graduate Assistance in Areas of
National Need (GAANN) Program, where psychology is recognized as a
national need area. In addition, we urge you to support the Institute
of Education Sciences (IES), with $670 million for fiscal year 2019.
This level of funding is essential to maintain and build upon the
research and data infrastructure that State and local education leaders
depend on to make effective and efficient decisions.
Sincere thanks to the Labor-HHS-Education Subcommittee for
accepting public witness testimony for the record.
______

Prepared Statement of the American Public Health Association
APHA is a diverse community of public health professionals who
champion the health of all people and communities. We are pleased to
submit our request to fund the Centers for Disease Control and
Prevention at $8.445 billion and the Health Resources and Services
Administration at $8.56 billion in fiscal year 2019. We strongly urge
you to reject the many proposed cuts to important CDC and HRSA programs
contained in the president's fiscal year 2019 budget proposal.
Centers for Disease Control and Prevention: We believe Congress
should support CDC as an agency and urge a funding level of $8.445
billion in fiscal year 2019. We are grateful for the important
increases provided for CDC programs in the fiscal year 2018 omnibus
bill and urge Congress to build upon these investments to strengthen
all of CDC's programs. We continue to oppose any effort to repeal or
cut the Prevention and Public Health Fund which currently makes up
approximately 10 percent of CDC's budget. Congress must ensure that the
CDC's budget remains whole in the face of these efforts that threaten
many CDC programs.
CDC provides the foundation for our State and local public health
departments, supporting a trained workforce, laboratory capacity and
public health education communications systems. It is notable that more
than 70 percent of CDC's budget supports public health and prevention
activities by State and local health organizations and agencies,
national public health partners and academic institutions.
CDC serves as the lead agency for bioterrorism and other public
health emergency preparedness and response programs and must receive
sustained support for its preparedness programs. Given the challenges
of terrorism and disaster preparedness we urge you to provide adequate
funding for the Public Health Emergency Preparedness grants which
provide valuable resources to State and local health departments to
protect communities in the face of public health emergencies.
CDC serves as the command center for the Nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the Zika
virus to playing a lead role in the control of Ebola in West Africa and
detecting and responding to cases in the U.S., to monitoring and
investigating disease outbreaks to pandemic flu preparedness to
combating antimicrobial resistance, CDC is the Nation's--and the
world's--expert resource and response center, coordinating
communications and action and serving as the laboratory reference
center for identifying, testing and characterizing potential agents of
biological, chemical and radiological terrorism, emerging infectious
diseases and other public health emergencies. States, communities and
the international community rely on CDC for accurate information and
direction in a crisis or outbreak.
Programs under the National Center for Chronic Disease Prevention
and Health Promotion address heart disease, stroke, cancer, diabetes
and arthritis that are the leading causes of death and disability in
the U.S. These diseases, many of which are preventable, are also among
the most costly to our health system. The center provides funding for
State programs to prevent disease, conduct surveillance to collect data
on disease prevalence, monitor intervention efforts and translate
scientific findings into public health practice in our communities.
The National Center for Environmental Health works to control
asthma, protect from threats associated with natural disasters and
climate change, reduce, monitor and track exposure to lead and other
environmental health hazards and ensure access to safe and clean water.
We urge you to support adequate funding for all NCEH programs.
In 2016, opioids killed more than 42,000 individuals nationwide.
CDC provides States with resources for opioid overdose prevention
programs and to ensure that health providers to have the information
they need to improve opioid prescribing and prevent addiction and
abuse. The National Center for Injury Prevention and Control must be
adequately funded to prevent injuries and help save lives. This
includes providing CDC with $50 million in fiscal year 2019 for gun
violence prevention research. Each year, 38,000 Americans lose their
lives due to gun violence. The Dickey amendment has stymied our
progress on gun violence prevention research for the past 20 years and
Congress must correct this by removing this language and providing CDC
with this critical investment to begin this long overdue gun violence
prevention research.
The development of antimicrobial resistance is occurring at an
alarming rate, far outpacing the research and development of new
antibiotics. Congress should continue support for CDC's Antibiotic
Resistance Initiative and efforts to bolster prevention and control
activities, enhanced data collection and surveillance and antimicrobial
stewardship.
Health Resources and Services Administration: HRSA operates
programs in every State and U.S. territory and has a strong history in
improving the health of Americans through the delivery of quality
health services and supporting a well-prepared workforce, serving
people who are medically underserved or face barriers to needed care.
We are grateful for the increases provided for HRSA programs in the
fiscal year 2018 omnibus and we urge Congress to continue their support
for these important programs in fiscal year 2019. We recommend
providing $8.56 billion for HRSA's total discretionary budget authority
in fiscal year 2019 in order to keep pace with our growing, aging and
diversifying population, constantly evolving healthcare system, and the
persistent and changing health demands of our Nation. Furthermore, the
U.S. is facing a severe shortage of health professionals, which
disproportionally affects rural and underserved communities. HRSA
grantees are well positioned to address these issues and have a
successful history of doing so, but additional funding is required to
build upon these successes and pave the way for new achievements by
supporting critical HRSA programs, including:
--Primary Health Care that supports more than 10,400 health center
sites in every State and U.S. territory, improving access to
care for more than 27 million patients in underserved
communities. HRSA-funded community health centers provide
comprehensive, cost-effective care by reducing barriers such as
cost, lack of insurance, distance, and language for their
patients.
--Health Workforce supports the education, training, scholarship and
loan repayment for health professionals across the entire
training continuum. These are the only Federal programs focused
on addressing Health Professional Shortage Areas, and improving
the distribution and diversity of the workforce. The programs
are responsive to the changing delivery systems, models of care
and healthcare needs, and encourage collaboration between
disciplines to provide effective and efficient coordinated
care.
--Maternal and Child Health including Title V Maternal and Child
Health Block Grant, Healthy Start and others support
initiatives designed to promote optimal health, reduce
disparities, combat infant mortality, prevent chronic
conditions and improve access to quality healthcare, including
children with special healthcare needs such as autism and
developmental disabilities.
--HIV/AIDS programs provide assistance to States and communities most
severely affected by HIV/AIDS, delivering comprehensive care,
prescription drug assistance and support services for more than
550,000 people impacted by HIV/AIDS. Additionally, the programs
provide education and training for health professionals
treating people with HIV/AIDS and work toward addressing the
disproportionate impact of HIV/AIDS on racial and ethnic
minorities. HRSA's Ryan White HIV/AIDS Program effectively
engage clients in comprehensive care and treatment, including
increasing access to HIV medication, which has resulted in 85
percent of clients achieving viral suppression, compared to
just 49 percent of all people living with HIV nationwide.
--Family Planning Title X services ensure access to a broad range of
reproductive, sexual and related preventive healthcare for more
than 4 million women, men and adolescents, with priority given
to low-income individuals. This program promotes healthy
families, helps improve maternal and child health outcomes,
reduces unintended pregnancy rates, limits transmission of
sexually transmitted infections and increases early detection
of breast and cervical cancer.
--Rural Health improves access to care for people living in rural
areas that experience a persistent shortage of healthcare
services. These programs are designed to 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.
In closing, we emphasize that the public health system requires
stronger financial investments at every stage. This funding makes up
less than 1 percent of Federal spending. Cuts to public health and
prevention programs will not balance our budget and will only lead to
increased costs to our healthcare system. Prevention opportunities,
screening programs, lifestyle and behavior changes and other
population-based interventions are effective, and a stronger investment
in these programs will enable us to meet the mounting health challenges
we currently face and to become a healthier Nation.
Thank you for considering our views on fiscal year 2019 funding for
these critical Federal public health agencies and programs.

[This statement was submitted by Georges C. Benjamin, MD, Executive
Director, American Public Health Association.]
______

Prepared Statement of the American Red Cross and
the United Nations Foundation
Chairman Roy Blunt, Ranking Member Patty Murray, and Members of the
Subcommittee, the American Red Cross and the United Nations Foundation
appreciate the opportunity to submit testimony in support of measles
and rubella 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 and life-saving activities. We request this
subcommittee support CDC's global measles control activities for fiscal
year 2019 at $50 million.
the measles & rubella initiative
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization (WHO), and UNICEF--founded
the Measles Initiative, a partnership committed to reducing measles
deaths globally. In 2012, the Initiative expanded to include rubella
control and adopted a new name, the Measles & Rubella Initiative. In
2013, all WHO regions established measles elimination goals by 2020.
The Measles & Rubella Initiative is committed to reaching these goals
by providing technical and financial support to governments and
communities worldwide.
The Measles & Rubella Initiative has achieved outstanding results
by supporting the vaccination of more than two billion children since
2001 and saving the lives of more than 20 million children. In part due
to the Measles & Rubella Initiative, global measles mortality dropped
84 percent, from an estimated 651,600 deaths in 2000 to an estimated
90,000 in 2016 (the latest year for which data is available). During
this same period, measles deaths in Africa fell by 89 percent. However,
in 2016 approximately 246 children died every day from a virus that can
be prevented by a safe, effective and inexpensive vaccine. Measles is
among the most contagious diseases ever known, and a top killer of
children in low-income countries where children have little or no
access to medical treatment and are often malnourished.
Measles spreads much more quickly than the flu or the Ebola virus.
A single person infected with measles can infect up to 18 other
unvaccinated people, compared with three for Ebola. The 2014-2015 Ebola
outbreak in Guinea, Sierra Leone and Liberia killed a total of 11,310
people. By comparison 2014, measles killed more than 100,000 people
worldwide. Measles can also cause severe complications such as
pneumonia and encephalitis. In addition, each year more than 100,000
children are born with congenital rubella syndrome (CRS). CRS can cause
severe birth defects, including blindness, deafness, heart defects and
mental retardation. CRS is very costly to treat, yet very inexpensive
to prevent. In lower income countries, it costs less than $2 to
vaccinate a child against both measles and rubella.
Working closely with host governments, the Measles & Rubella
Initiative has been the main international supporter of mass measles
immunization campaigns since 2001. The Initiative mobilized more than
$1.2 billion and provided technical support in 88 developing countries
on vaccination campaigns, surveillance and improving routine
immunization services. From 2000 to 2016, an estimated 20.4 million
measles deaths were averted as a result of these accelerated measles
control activities, making measles mortality reduction one of the most
cost-effective public health interventions. Between 2000-2016, measles
vaccines were the single greatest contribution to reducing preventable
child deaths. Thanks to the efforts of CDC along with global partners,
measles declined from the fifth leading cause of death in 2000 to the
twelfth in 2016.
The majority of 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, other health interventions are often distributed
during campaigns. These include: administering vitamin A, which is
crucial for preventing blindness in under nourished children; de-
worming medicine to reduce malnutrition; and distributing insecticide
treated bed nets to help prevent malaria and screening for
malnutrition. Doses of oral polio vaccines are also frequently
dispensed during measles campaigns in polio-endemic and high-risk
countries. The delivery of polio vaccines in conjunction with measles
vaccines in these campaigns strengthens the reach of elimination and
eradication efforts of both diseases. The provision of multiple child
health interventions during a single campaign is far less expensive
than delivering the interventions separately. This strategy increases
the potential positive impact on children's health from a single
campaign while serving to increase vaccination coverage rates.
In addition to the lifesaving benefits of measles vaccines,
immunization makes sound economic sense. A recent study by Johns
Hopkins University revealed the economic benefits of increased
investment in global vaccination programs. The study compared the costs
for vaccinating against 10 disease antigens in 94 low- and middle-
income countries during the period 2011-2020 versus the costs for
estimated treatments of unimmunized individuals during the same period.
Their findings show, on average, every $1 invested in these 10
immunizations produces $44 in savings in healthcare costs, lost wages,
and economic productivity. The return on investment for measles
immunization was particularly high, at $58 saved for every $1 invested.
In 2016, the Measles and Rubella Initiative requested an
independent evaluation of progress towards the Global Measles and
Rubella Strategic Plan, 2012-2020. This evaluation found that the
technical strategies are sound and elimination is feasible as evidenced
by the certification of the elimination of measles in the Americas
during 2016. The Americas eliminated rubella in 2015. The review
recommended that to achieve the elimination goals and avoid a
resurgence of measles, the following actions are required:
--Sustaining the gains in reduced measles deaths, especially in
Africa, by strengthening disease surveillance and immunization
programs to ensure rapid disease detection and more than 90
percent of infants are vaccinated against measles through
routine health services as well as conducting timely, high
quality mass immunization campaigns. Routine immunization is
the foundation to achieving and sustaining high levels of
immunity to measles and rubella in the community.
--Accelerating the introduction of a second dose of measles-
containing vaccine and a dose of rubella vaccine into the
routine immunization program of eligible countries with support
from Gavi, the Vaccine Alliance.
--Fully implementing activities, both through campaigns and
strengthening routine measles vaccination coverage,
particularly in Democratic Republic of Congo, Ethiopia, India,
Indonesia, Nigeria, and Pakistan which together account for the
majority of measles cases and 75 percent of measles deaths.
--Securing sufficient funding for measles and rubella-control
activities both globally and nationally. Between 2018-2020 the
Measles & Rubella Initiative is facing a funding shortfall of
U.S. $108 million. The decrease in donor funds available at a
global level to support measles and rubella elimination
activities makes increased political commitment and country
ownership of the activities critical for achieving and
sustaining the goal of reducing measles mortality by 95
percent. Implementation of timely measles and rubella campaigns
is increasingly dependent upon countries funding these
activities locally, which can be challenging under such
downward financial pressure. For 9 months of 2016, labs in
Africa did not have funds to buy diagnostic kits to confirm
measles cases. Without these kits, it was impossible to
distinguish measles from other causes of fever and rash such as
dengue and parvovirus B19. Responding to a dengue outbreak with
measles vaccine risks lives, wastes resources and diminishes
confidence in the effectiveness of the vaccine.
If these challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles death and
disability will occur. Measles is one of the most contagious diseases
know to humans and, due to our highly interconnected world, measles can
be spread globally including to countries that have already eliminated
the disease. The threat of importation of measles was one of the
reasons that the Global Health Security Agenda has selected measles as
an important indicator of whether a country's routine immunization
system is vaccinating all children. Additionally, the ability of a
country to rapidly detect and respond to measles cases is a marker of
the quality of a routine immunization system to identify and respond to
disease outbreaks more generally.
Controlling measles and rubella cases in other countries also
protects adults and children in the U.S. In the United States, measles
control measures have been strengthened, and endemic transmission of
measles cases has been eliminated since 2000 and rubella in 2002.
However, importations of measles cases into this country continue to
occur each year. Since 2000, the annual number of people reported to
have measles ranged from a low of 37 in 2004 to a high of 667 people
across 27 States in 2014; the greatest number of cases reported in the
U.S. since measles was declared eliminated in 2000. Additionally, on
July 2, 2015, the Washington State Department of Health confirmed a
measles-related death--the first death in 12 years in the U.S. Last
year, 123 people in 15 States were reported to have measles.
Responding to a measles outbreak can cost State and local health
departments $100,000 per case to halt disease spread. One in four cases
of measles requires hospitalization, costing up to $15,000 per patient.
For people experiencing complications such as encephalitis, occurring
in one in 1,000 cases, the diagnosis and treatments can cost patients
more than $100,000. In the U.S., caring for a person with congenital
rubella syndrome can cost close to $1 million over the patient's
lifetime.
Eliminating measles and rubella is the right thing to do for
children to meet their full potential. The $58 to $1 return on
investment, coupled with the benefit of protecting American children
against importation of measles into the U.S., demonstrates that
investments in CDC's measles and rubella elimination program is an
excellent use of taxpayer dollars. We should be united in our
commitment to end these dangerous diseases because until we achieve
this goal, we are all at risk. By supporting the work of the CDC, we
can save lives and prevent the needless suffering measles and rubella
cause.
the role of cdc in global measles mortality reduction
Since fiscal year 2001, Congress has provided funding to protect
children and their families from the threat of measles and rubella in
developing countries. This support has assisted 88 countries around the
world and has contributed to saving the lives of 20.4 million children
over the past 16 years. For this support, we extend our deep
appreciation to Congress. This support permitted the provision of
technical support to Ministries of Health that specifically included:
--Planning, monitoring, and evaluating large-scale measles
vaccination campaigns;
--Conducting epidemiological investigations and laboratory
surveillance of measles outbreaks;
--CDC's Global Measles Reference Laboratory to serve as the leading
worldwide reference laboratory for measles and rubella. The
reference laboratory provides specimen confirmation and testing
as well as training for country and regional labs; 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 and rubella control programs
at global and regional levels and will continue to work with these and
other partners in implementing and strengthening rubella control
programs. There is no doubt that CDC's financial and technical
support--made possible by the funds appropriated by Congress--were
essential in helping achieve the sharp reduction in measles deaths in
just 15 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 & Rubella Initiative is fortunate to have 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 effectively coordinate and plan
with international organizations and provide solutions to complex
problems that help critical work get done faster and more efficiently.
Since fiscal year 2010, the CDC's measles and rubella elimination
program has been funded at approximately $50 million. In fiscal year
2019, the American Red Cross and the United Nations Foundation
respectfully request the continuation of level funding of $50 million.
This investment will allow CDC to maintain measles and rubella control
and elimination activities, safeguard the progress made over the last
decade and protect Americans by preventing measles cases and deaths in
the United States.
Thank you for the opportunity to submit testimony, and for your
continued commitment to ending preventable death and disability from
measles and rubella.

[This statement was submitted by Jono Anzalone, Vice President,
International Services, American National Red Cross and Kathy Calvin,
President, Chief
Executive Officer, United Nations Foundation.]
______

Prepared Statement of the American Society for Biochemistry and
Molecular Biology
America is the global leader for biomedical research and
innovation, and that leadership mantle is made possible by the robust
investments in the National Institutes of Health that begin here, with
the bipartisan support of the members of this subcommittee. Under the
leadership of Chairman Blunt and Ranking Member Murray, the NIH has
seen its budget begin to grow again, following a decade of stagnant
investments, at a time when Federal investments in research--especially
basic research--are critically important. For this reason, we ask the
subcommittee to continue its commitment to the biomedical research
community, and fund the NIH at a level 3.5 percent above the fiscal
year 2018 level for fiscal year 2019. Specifically, this increase
should support investigator initiated research (R-01 grants), in an
attempt to improve historical low funding success rates at many of the
institutes that make up the NIH. We thank you for your commitment, and
look forward to working with you and the rest of the committee as
partners into the future.
ASBMB is a nonprofit scientific and educational organization that
was established in 1906 by 28 biochemists and has since grown to an
organization with more than 12,000 members worldwide. Most members
conduct research and teach at colleges and universities, government
laboratories, at nonprofit research institutions and in industry. The
Society's student members attend undergraduate and graduate
institutions. We are proud to include 97 Nobel Prize winners among our
members since 1922. The increased longevity and improved quality of
life enjoyed by Americans over the past century can be attributed in
large part to innovations resulting from discoveries and breakthroughs
in biomedical research--most of which stem from biochemistry and
molecular biology. Beyond health improvements, the biomedical research
enterprise has been a key segment of economic growth and job creation
in the 21st century.
Let me highlight a few key contributions made in the fields
represented by ASBMB that have made this possible. One area of
biochemistry is metabolism, i.e. the conversion of nutrients in food
into other molecules that are essential for normal, healthy biological
function. For example, the conversion of fats into cholesterol is
important for health, but excess cholesterol increases the risk of
cardiovascular disease. NIH funded research on this biochemical pathway
provided the knowledge required for the development of a number of
drugs that reduce cholesterol, which have contributed greatly to the
reduction in death due to cardiovascular disease.
Molecular biology, which emerged as a marriage of biochemistry and
genetics, is the foundation for much of modern biomedical science
including genomics and other cutting edge technologies being used
today. Discoveries in molecular biology, supported by funding from the
NIH, led to the development of biotechnology as an entirely new
industry. Biotechnology allows the production of complex biological
molecules such as human insulin and antibodies such as the breast
cancer drug, Herceptin. The lives of individuals with diabetes, cancer,
and many other disorders have been greatly improved because these
molecules are now produced in pure form and in sufficient quantity for
use as drugs. Furthermore, the United States has been the leader in
this important new industry largely because the key, foundational
discoveries were made here.
The power of these approaches, both as research tools and as
drivers for industry, had become strikingly clear toward the end of the
last century. Congress wisely supported substantial increases in the
appropriation for the NIH between 1998 and 2003. Those funds made it
possible to increase the capability of the biomedical research
enterprise in the United States. Established scientists were able to
take their research in new directions and many talented young
scientists launched productive careers. Sequencing of the human genome
was completed and many important and unanticipated discoveries were
made. Many of these exposed levels of complexity in biological systems
that had not been anticipated. For example, RNA, a close cousin of DNA,
was found to play new roles in regulating biological systems in
important, but subtle, ways. The human body was found to include more
microbial cells than human cells. NIH funded Research has shown that
these microbes contribute to both health and disease in newly
discovered and unexpected ways.
Despite this impressive progress, there is still much to learn
about human biology to enable the successful translation of what we do
know into improvements in human health. NIH funded research has
successfully reduced the mortality and morbidity of once acute and
lethal conditions. This research continues to reduce the burden of
heart disease, cancer, stroke (the three leading causes of death in the
United States), as well as other diseases such as AIDS, Alzheimer's and
diabetes. Robust and sustainable future funding for NIH will support
continued biomedical research that saves lives, improves human health
and provides the basic knowledge needed by private industry to develop
the drugs and therapies we rely upon today and will continue to rely on
in years to come.
When setting budgetary priorities, it is important to remember that
technological innovation will be a key component for our future
economic security and international competitiveness. More than 80
percent of the investment this Congress makes in the NIH leaves the
Bethesda campus and funds academic researchers across the country. Each
NIH grant--on average--supports approximately seven high-tech, high-
paying jobs. These are precisely the type of jobs each member of this
committee would want to have in their own district. These are also the
kind of jobs that contribute to a 21st century, technology and
information based economy. Additionally, analysis of the economic
impact of your NIH investments indicates that for every $1 invested in
the NIH, the economy derives a $2 return. Finally, investment in
research will continue to modernize our Nation's research laboratories
and facilities, spur innovation, provide an immediate boost in
employment for our Nation's workforce, and train the next generation of
scientists.
The ASBMB understands the Nation is facing difficult budgetary
decisions, with Federal spending reaching nearly unsustainable levels.
Some programs will need to be cut, while some, such as biomedical
research, cannot sustain continued, ``stop-start'' funding. Given this
context, our membership appreciates that the Congress recognizes the
importance of NIH support, if the US is to contribute to biomedical
discovery at the cutting edge.
Today, the U.S. stands proud as the world's leader in biomedical
research, but this will not continue to be true if we do not do all we
can in support of the NIH. The American biomedical research enterprise
plays a critical role in creating hightech, high-paying jobs, helping
to keep America a global leader in innovation and discovery, but it
cannot do so without a reliable and robust Federal investment.

[This statement was submitted by Benjamin Corb, Director of Public
Affairs, American Society for Biochemistry and Molecular Biology.]
______

Prepared Statement of the American Society for Engineering Education
summary
This written testimony is submitted on behalf of the American
Society for Engineering Education (ASEE) to the Senate Subcommittee on
Labor, Health and Human Services, Education, and Related Agencies for
the official record. ASEE appreciates the Committee's support for the
Department of Education (ED) in the fiscal year (FY) 2018 omnibus and
asks you to robustly fund student aid, teacher preparation, and STEM
programs in fiscal year 2019. Additionally, ASEE requests Federal
funding to support initiatives aimed to increase the access and success
of historically underrepresented populations in engineering and other
STEM fields. The strong support of the National Institutes of Health
(NIH) in fiscal year 2018 was greatly appreciated and ASEE advocates
for the continued support of NIH.
written testimony
The American Society for Engineering Education (ASEE) is dedicated
to advancing engineering and engineering technology education and
research, and is the only society representing the country's schools
and colleges of engineering and engineering technology. Membership
includes over 12,000 individuals hailing from all disciplines of
engineering and engineering technology including educators,
researchers, and students as well as industry and government
representatives. The U.S. engineering workforce numbered 1.7 million
people in 2015,\1\ the most jobs of any STEM discipline, and the demand
for engineering professionals continues to grow. As the pre-eminent
authority on the education of engineering professionals, ASEE works to
develop the future engineering and engineering technology workforce,
expand technological literacy, and convene academic and corporate
stakeholders to advance innovation and sound policy.
---------------------------------------------------------------------------
\1\ National Science Board. 2018. Science and Engineering
Indicators 2018. NSB-2018-1. Alexandria, VA: National Science
Foundation.
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Student Aid
Student aid programs like Pell Grants, Federal Work-Study (FWS),
TRIO, and others make higher education accessible for millions of
students. ASEE joins the higher education community in requesting
funding to support a maximum Pell Award of $6,230. Pell Grants provide
need-based aid to students with demonstrated financial need. These
awards are vital in helping students access the life-altering impacts
that higher education provides. ASEE requests funding for FWS at $1,206
billion and $896 million for Supplemental Educational Opportunity Grant
(SEOG). These programs are need-based, and often this aid is the
difference between a student completing and securing a degree and
dropping out. ASEE firmly believes in ensuring access to engineering
and engineering technology education for all students, not just those
who can afford it. It is important that student aid options,
particularly for graduate students, are maintained. Engineering
education provides a proven pathway to the middle class, especially for
students from low-income backgrounds. It is critical that this pathway
continues to be accessible to students in need.
Teacher Preparation
The need for strong teachers in early childhood, elementary, and
secondary education is high, particularly in STEM subjects. The lack of
teacher training focused on STEM, and engineering in particular, is an
important issue facing K-12 education. Engineering design and analysis
skills are often absent from teacher preparation and professional
development programs. ASEE supports vigorous funding for Title II of
the Elementary and Secondary Education Act (ESEA), which supports the
preparation and professional development of school personnel, and Title
II of the Higher Education Act, which supports teacher preparation
programs at institutions of higher education. A lack of focus on
engineering in K12 teacher preparation and professional development is
exacerbated by the low levels of funding these programs have received.
Programs like UTeach, a STEM teacher preparation program that expands
access to STEM education and improves STEM learning outcomes by
supporting a national network of universities and STEM educators are
vital to increasing the number of high-quality teachers. Efforts to
support teaching skills for STEM postsecondary faculty should also be
considered and could include partnerships between STEM disciplines and
Schools of Education to support STEM faculty and support for teaching
and learning centers at postsecondary institutions. Support of
postsecondary faculty and their promotion of STEM learning should
utilize research-based methods. Our future is dependent on today's
students finding solutions to tomorrow's problems. This can only be
accomplished if those students have teachers who are prepared to guide
them in developing the knowledge and skills needed to solve those
problems.
STEM
Support for Science, Technology, Engineering, and Mathematics
(STEM) continues to grow and ASEE appreciates the funding increases
many STEM programs received in fiscal year 2018. ASEE supports funding
for Title IV of ESEA at its authorized amount of $1.6 billion, which
will allow states and school districts additional resources to pursue
STEM programs. The need to expand the inclusion of historically
underrepresented populations in STEM is also a priority for ASEE. ASEE
supports robust funding for STEM programs for higher education students
including the Hispanic-Serving Institutions (HSI) STEM and Minority
Science and Engineering Improvement (MSEIP) programs. The STEM
workforce, particularly the engineers, technologists, and computer
scientists, is the driving force behind innovation and our economic
development. These and other programs targeted towards increasing the
representation of historically underrepresented populations, including
women, will ensure a healthy STEM workforce pipeline.
National Institutes of Health--National Institute of Biomedical Imaging
and
Bioengineering (NIBIB)
NIBIB is the major NIH Institute focused on engineering
applications to human health and training the next generation of
biomedical engineers. ASEE is grateful to the committee for its strong
bipartisan support of the NIH in fiscal year 2018. NIBIB funding is
critical for the development of devices and tools that can improve the
detection, treatment, and prevention of disease, and also plays a
critical role in assessing the effectiveness of new drugs and treatment
procedures. NIBIB also supports training programs to enhance and expand
education and training for the next generation biomedical engineering
workforce. Through grant programs like the Enhancing Science,
Technology, and Math Education Diversity Research Education
Experiences, and Team-Based Design in Biomedical Engineering Education,
NIBIB is committed to supporting all stages of the biomedical
engineering career pathway and increasing the participation of
traditionally underrepresented groups in engineering. ASEE urges the
Subcommittee to provide NIH with $39.3 billion in fiscal year 2019 so
that NIBIB can continue to support critical biomedical engineering
research and training.
conclusion
Engineering and engineering technology education and research
investments are vital in supporting communities, providing
opportunities, and spurring our economy. We ask that you robustly
support these critical programs. Thank you for the opportunity to
submit this testimony.

[This statement was submitted by Bevlee Watford, Ph.D., P.E.,
President, and Norman Fortenberry, Sc.D., Executive Director, American
Society for Engineering Education.]
______

Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) appreciates the
opportunity to submit this statement in support of making medical
research, public health, and public health emergency preparedness
national priorities as you begin consideration of spending for fiscal
year 2019.
ASM is the largest single life science society, composed of more
than 50,000 scientists and health professionals. Our mission is to
promote and advance the microbial sciences, including programs and
initiatives funded by the Federal Government departments and agencies,
by virtue of the pervasive role of microorganisms in health and
society. The Department of Health and Human Services (HHS) is home to a
number of very important initiatives of interest to ASM members.
This year marks the 100th anniversary of the Great Influenza
pandemic, which killed almost 40 million people, reminding us that we
must remain prepared for rapid research and development of
therapeutics, vaccines and medical diagnostics in the face of emerging
infectious disease epidemics. Research is integral to this preparedness
as is our investment to rapidly respond to declared and potential
public health emergencies.
Among the most consequential issues facing world is antimicrobial
resistance. ASM urges the Subcommittee to recommit in fiscal year 2019
to funding research and programs to address this growing threat.
According to the Centers for Disease Control and Prevention (CDC), each
year in the United States, at least two million people become infected
with bacteria that are resistant to antibiotics and at least 23,000
people die each year as a direct result of these infections.
Furthermore, these infections result in an additional $20 billion per
year of excess costs to our healthcare system. Dedicated funding for
antibiotic resistance through the National Institutes of Health (NIH),
the CDC, and the Agency for Healthcare Quality and Research should
continue, as well as increased funding for the HHS public health
emergency preparedness programs that allow for the development and
rapid deployment of medical countermeasures, including those to combat
antibiotic resistant bacteria that could be used in a biological
attack.
Medical Research Funding
The ASM appreciates the Subcommittee's leadership in securing a $3
billion increase for the NIH in the fiscal year 2018 Omnibus
Appropriations bill, which brought its funding level to $37.084
billion. We also appreciate the funding increase for research on
antibiotic resistance and the development of a universal influenza
vaccine through the National Institute of Allergy and Infectious
Diseases (NIAID). We encourage the Subcommittee to continue
prioritizing medical research by increasing the NIH's budget in fiscal
year 2019 by $2 billion, including an additional $215 million in 21st
Century Cures Act funding.
Central to advancing research to defend against infectious disease
is a better understanding the human microbiome. This April the
Interagency Strategic Plan for Microbiome Research (SPMR) was released
by the Microbiome Interagency Working Group, an interagency working
group under the Life Sciences Subcommittee of the National Science and
Technology Council Committee on Science. This plan includes five
strategic research areas, including human health and safety, to support
the plan's three research objectives (Support Interdisciplinary
Research; Develop Platform Technologies; and Expand the Microbiome
Workforce).
Microbial communities live in and on all surfaces of the human
body, and play a vital role in human health and development. Indeed,
the functions of many organ systems and body regions depend on
microorganisms: gastrointestinal tract, respiratory tract, oral,
urogenital, brain, skin, cardiovascular system, blood, immune system.
Expanding our knowledge of the microbiome through NIH-funded research
can help us understand the diseases associated with these organ systems
and body regions.
As highlighted in the SPMR, important microbiome discoveries must
be used to better understand human health and transformed into
strategies for microbiome-based therapeutic intervention and treatments
for disease. Microbiome research is also integral to developing new
antimicrobials and understanding the role of specific foods on the
microbiome and the intersection between nutrition and obesity, heart
disease and cancer. We urge the Subcommittee to provide a sizable
increase to the NIH to further important cross-cutting microbiome
research.
Public Health and Preparedness Against Public Health Emergencies
Another ASM priority area is public health emergency preparedness.
This May, the Health, Education, Labor and Pensions Committee approved
the Pandemic and All-Hazards Preparedness Advancing Innovation Act--
legislation strongly supported by the ASM. Reauthorization of the
Pandemic and All-Hazards Preparedness Act must be met with a
corresponding commitment of Federal resources. The ASM calls upon
Congress to fund at authorized levels, beginning with fiscal year 2019,
the programs supported by the legislation, including the: Public Health
Emergency Preparedness Program at the CDC; Hospital Preparedness
Program; Strategic National Stockpile; Biomedical Advanced Research
Development Authority; and the Bioshield Special Reserve Fund.
Increases to the Strategic National Stockpile and the CDC's Public
Health Emergency Preparedness Program will not be possible without a
strong investment in the CDC. The ASM requests a funding level of
$8.445 billion for the CDC in fiscal year 2019 and asks the
Subcommittee to prioritize funding within that budget for global
health. In this era of mass global travel, the United States must make
a strong commitment to health security both at home and abroad to
secure its borders against public health threats.
The Ebola and Zika pandemics did not originate within our borders,
but traveled here quickly. There is no question that there will be
another threat. The only questions are when and where in the world it
will originate. Protecting Americans requires stopping these public
health threats at their points of origin, which requires a strong,
effective, and strategically placed U.S. global presence, but this
entails continued and effective investments in both the domestic and
global capacity to prevent, detect, and respond to biological threats.
The United States must also continue its investments in emerging
and zoonotic infectious diseases, including vector borne diseases.
Threats include the emergence of West Nile, Chikungunya, and Zika
viruses, as well as the continued geographic expansion of dengue and
yellow fever viruses and Lyme disease. In fact, the CDC recently
reported that vector borne diseases are a large and growing public
health problem in the United States.
Conclusion
The ASM again commends the Subcommittee for the increases in
funding for the NIH, CDC, Assistant Secretary for Preparedness and
Response, and Public Health and Social Services Emergency Fund in
fiscal year 2018 and asks that you reject cuts to these agencies and
divisions as called for in the President's budget request. We
appreciate the increased Labor-HHS-Education spending allocation for
fiscal year 2019, but we are concerned that an allocation of $179.288
billion may not allow for the increases that are needed to advance
medical research, public health and public health emergency
preparedness in a way that is necessary.
Thank you for the opportunity to submit this testimony for the
record. Should you have any questions, please contact Camille Bonta,
ASM policy advisor.
______

Prepared Statement of the American Society for Nutrition
Dear Chairman Blunt and Ranking Member Murray:
Thank you for the opportunity to provide testimony regarding fiscal
year 2019 appropriations. The American Society for Nutrition (ASN)
respectfully requests at least $39.3 billion dollars for the National
Institutes of Health (NIH) and $175 million dollars for the Centers for
Disease Control and Prevention/National Center for Health Statistics
(CDC/NCHS) in fiscal year 2019. ASN is dedicated to bringing together
the world's top researchers to advance our knowledge and application of
nutrition, and has more than 6,500 members working throughout academia,
clinical practice, government, and industry.
national institutes of health
The NIH is the Nation's premier sponsor of biomedical research and
is the agency responsible for conducting and supporting 86 percent of
federally-funded basic and clinical nutrition research. Although
nutrition and obesity research make up less than 8 percent of the NIH
budget, some of the most promising nutrition-related research
discoveries have been made possible by NIH support. NIH nutrition-
related discoveries have impacted the way clinicians prevent and treat
heart disease, cancer, diabetes and other chronic diseases. For
example, from 2001 to 2011, the U.S. death rate from heart disease has
fallen by about 39 percent and from stroke by about 35 percent.\1\
However, the burden and risk factors remain high. With additional
support for NIH, additional breakthroughs and discoveries to improve
the health of all Americans will be made possible.
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\1\ https://www.heart.org/idc/groups/ahamah-public/@wcm/@sop/@smd/
documents/downloadable/ucm_470704.pdf.
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Investment in biomedical research generates new knowledge, improved
health, and leads to innovation and long-term economic growth. From
fiscal year 2003 to 2015, the NIH lost 22 percent of its capacity to
fund research due to budget cuts, sequestration, and inflationary
losses. Such economic stagnation is disruptive to training, careers,
long-range projects and ultimately to progress. Since fiscal year 2016,
Congress has begun to restore the NIH budget but there is much work to
be done; in real dollars, the NIH budget is still 16 percent below the
fiscal year 2003 level. ASN recommends at least $39.3 billion dollars
for NIH in fiscal year 2019 to support NIH nutrition-related research
that will lead to important disease prevention and cures. A budget of
$39.3 billion will allow NIH to support at least 400 additional early
career and early established investigators while still providing much
needed increases to other parts of the portfolio. NIH needs sustainable
and predictable budget growth to fulfill the full potential of
biomedical research, including nutrition research, and to improve the
health of all Americans.
centers for disease control and prevention national center for health
statistics
The National Center for Health Statistics (NCHS), housed within the
Centers for Disease Control and Prevention (CDC), is the Nation's
principal health statistics agency. ASN recommends a fiscal year 2019
funding level of $175 million dollars for NCHS to help ensure
uninterrupted collection of vital health and nutrition statistics and
help cover the costs needed for technology and information security
maintenance and upgrades that are necessary to replace aging survey
infrastructure. A decade of flat-funding has taken a significant toll
on NCHS's ability to keep pace.
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 U.S. 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 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.
Thank you for the opportunity to submit testimony regarding fiscal
year 2019 appropriations for the National Institutes of Health and the
CDC/National Center for Health Statistics. Please contact John E.
Courtney, Ph.D., ASN Executive Officer, at 9211 Corporate Boulevard,
Suite 300, Rockville, Maryland 20850 or [email protected], if ASN
may provide further assistance.
Sincerely.

[This statement was submitted by Mary Ann Johnson, Ph.D.,
President, American Society for Nutrition.]
Prepared Statement of the American Society of Clinical Oncology
The American Society of Clinical Oncology (ASCO), the world's
leading professional organization representing nearly 45,000 physicians
and other professionals who treat people with cancer, thanks this
Subcommittee for its long-standing commitment to support federally
funded research at the NIH and the NCI. ASCO applauds your leadership
in securing a $3 billion increase for the NIH in fiscal year 2018. This
strong recommitment to scientific discovery will help the research
community regain momentum and sustain our Nation's position as the
world leader in biomedical research. We are in an exciting and
promising era of medical research; new discoveries are leading to major
improvements in the way we care for patients with cancer. Continued
progress in preventing and treating cancer depends on consistent and
reliable funding for research that provides the insight needed for
better treatments and quality of life for all Americans. For fiscal
year 2019, ASCO calls for continued support for biomedical support by
requesting an increase of at least $2 billion, plus the $215 million
authorized under as part of the 21st Century Cures Act to maintain the
momentum gained over the past 3 years. ASCO appreciates this
opportunity to provide the following recommendations for fiscal year
fiscal year 2019:
--National Institutes of Health (NIH): $39.3 billion
--National Cancer Institute (NCI): $6.375 billion
Clinical cancer research in the United States is made possible
through funding from both the public and private sectors. Federal
funding is indispensable to the high-risk, pioneering research that has
contributed to the rapidly expanding population of cancer survivors. In
many cases, these are studies commercial entities typically do not
pursue, including research on cancer prevention, screening, treatment
comparisons, and therapies that combine multiple therapies.
Funding from the NIH supported more than 25 percent of the top
advances highlighted in ASCO's 2018 Clinical Cancer Advances report,
the Society's 13th annual report on progress against cancer, and its
corresponding supplement, which focused specifically on the importance
of Federal funding. Some of the most notable federally funded advances
highlighted in the 2018 report are:
--Prolonged cancer survival using new approaches:
--A new treatment regimen by combining a targeted therapy with
traditional chemotherapy, which helps women with recurrent
ovarian cancer live longer.
--A web-based tool for symptom management that helps patients with
advanced cancer live longer.
--Modified times for hormone therapy to reduce risk of breast cancer
recurrence.
--Mitigating adverse effects of chemotherapy with less treatment:
--Shortening duration of adjuvant chemotherapy for stage III
colorectal cancer proved to be safe and reduced adverse
effects.
--Less extensive surgery lowers the risk of lymphedema in patients
with melanoma without compromising survival.
--Lowering the radiation dose for oropharyngeal cancer reduces
health complications without compromising survival.
--Effective strategies to help patients with advanced cancer
understand and cope with their prognosis.
--For cancer-related fatigue, exercise and psychological support are
more effective than medication.
--New insights on the adverse effects of certain prostate cancer and
lung cancer treatments help inform treatment and survivorship
discussions.
Sustained and steady funding of the NIH and NCI is critical to
maintaining the pace of scientific discovery and continued progress
against cancer, such as the advances outlined above. We appreciate that
over the last few years Congress has prioritized Federal funding for
biomedical research, increasing the NIH budget by $3 billion in fiscal
year 2018, the largest increase for the NIH in 15 years. Despite
Congress' efforts, however, the budget of the NCI, when adjusted for
biomedical inflation, remains below pre-recession levels. Funding for
our Nation's biomedical research infrastructure needs to catch up to
what is needed today and needs sustained increases to meet the
possibility of today's science. Failure to continue the historic
investment in research places health outcomes, scientific leadership,
and economic growth at risk.
The bipartisan, 2-year budget agreement passed earlier this year
allows Congress to build on its recent investments in biomedical
research. ASCO's fiscal year 2019 request for the NIH calls on Congress
to increase funding for the NIH by at least $2 billion, in addition to
funding the full $215 million authorized in the 21st Century Cures Act,
bringing the fiscal year 2019 total for the NIH to $39.3 billion. This
investment would ensure that the US continues lead the world in
biomedical research and discovery and help deliver the next generation
of cancer cures to patients.
economic impact: the nih is a good investment
Almost 1.7 million Americans will be diagnosed with cancer this
year and more than 609,000 Americans will die as a result. The cancer
burden will cost the US economy an estimated $216 billion in direct
treatment costs and lost productivity. Annual cancer incidence rates
are also projected to increase by 31 percent over the next decade,
growing to 2.1 million people diagnosed in 2025.\1\
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\1\ American Cancer Society; Cancer Facts & Figures 2018; https://
www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-
figures/cancer-facts-figures-2018.html.
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NIH-supported screening and prevention programs have been cost
effective. In addition to helping reduce the economic burden and human
toll of cancer, the NIH provides a good return on Federal investment by
spurring economic progress throughout the country. The NIH supports
more than 400,000 jobs and contributes approximately $69 billion
annually in economic activity. All fifty States and the District of
Columbia have institutions that receive NIH research funding, and the
average State can attribute over 4,000 jobs to NIH activity. In fact,
every dollar of NIH funding generates over $2.20 in local economic
growth.\2\
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\2\ United for Medical Research; NIH's Role in Sustaining the U.S.
Economy 2018 Update; http://www.unitedformedicalresearch.com/
advocacy_reports/nihs-role-in-sustaining-the-u-s-economy-2018-update/.
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supporting pillars of care: clinical trials and translational research
NIH-funded translational research and clinical trials have
significantly improved the standard of care in many diseases. Federal
funding and targeted programs extend cutting edge science to
communities and diverse participants across the United States. Clinical
trials and translational research provide cost-effective treatment
options for many common cancers. They yield insight critical to the
development of targeted therapies, which identify patients most likely
to benefit and help patients who will not benefit avoid the cost and
pain of treatment unlikely to help them. This is where science becomes
practice-changing for patients in America.
ASCO has developed the Targeted Agent and Profiling Utilization
Registry (TAPUR(tm)) Study, which provides access to certain targeted
therapies for patients who are age twelve and older and who have been
identified as candidates for benefitting from those treatments. The
TAPUR Study evaluates use of these molecularly targeted anti-cancer
drugs and collects data on clinical outcomes. As of April 2018 there
are more than 840 participants enrolled in the TAPUR Study at more than
113 sites in twenty States.
To maintain access to research for cancer patients, ASCO urges a
substantial increase in funding for the National Clinical Trials
Network (NCTN) and NCI Community Oncology Research Program (NCORP).
ASCO is very concerned that Federal funding is not at a level that
allows NCI to sustain this important network of community practices
that engage in clinical research-and provide an important source of
patients willing to participate. An increase in NCI's budget would
enable the Institute to maintain or increase the number of accruals to
trials and cover the cost of conducting the research.
capturing opportunity: the cancer moonshot initiative
ASCO thanks appropriators for inclusion of funding for the Beau
Biden Cancer Moonshot Initiative in the fiscal year 2018. The NCI is
working to achieve the stated goal of the Moonshot, which aims to
achieve 10 years of cancer research progress in 5. The Moonshot task
force report and Blue Ribbon panel recommendations contained bold ideas
about how to achieve this goal. Specifically, the Cancer Moonshot
Initiative is currently working towards modernizing clinical trials,
building on advances in precision oncology, and developing effective
immunotherapies for a broader array of cancers. Adequate funding is
needed to make progress in each of these areas over the coming years.
However, funding for this Initiative should supplement rather than
supplant predictable increases in the underlying NCI budget.
bringing research to the patient: nih funding spurs development of new
treatments
Modern cancer research delivers new treatments to patients faster
than ever, thanks to the National Cancer Act of 1971 and continuing
innovation in research and regulatory infrastructure. In just 1 year's
time (from November 2016 through October 2017), the FDA has approved 31
therapies for more than sixteen different types of cancer, and included
the first adoptive cell immunotherapy, also known as CAR-T cell
therapy, which utilizes the patient's own immune cells to fight cancer.
Today, there are 15.5 million cancer survivors in America, more than
five times the number of survivors alive in 1971. None of this could be
accomplished without the research engine spurred by the NCI.
ASCO again thanks the Subcommittee for its continued support of
cancer patients in the US through funding for the NIH and NCI. We look
forward to working with all members of the subcommittee on an fiscal
year 2019 budget that continues to advance US cancer research. Please
contact Kristin Palmer at [email protected] with any questions.
* * *

[This statement was submitted by Bruce E. Johnson, MD, FASCO,
President, American Society of Clinical Oncology.]
______

Prepared Statement of the American Society of Gene & Cell Therapy
Dear Chairman Blunt, Ranking Member Murray, and Subcommittee
Members:
Thank you for the opportunity to provide this testimony on behalf
of the American Society of Gene & Cell Therapy (ASGCT). ASGCT is a
membership organization consisting of scientists, physicians, and other
professionals involved in the gene and cell therapy fields in settings
such as universities, hospitals, government agencies, foundations, and
biotechnology and pharmaceutical companies.
The Society respectfully requests robust fiscal year 2019
appropriations to the National Institutes of Health to fund additional
gene and cell therapy research. Funding further gene and cell therapy
research has the potential to accelerate the discovery and clinical
application of more safe, effective, innovative genetic and cellular
therapies to alleviate and ease human disease, which is a core
component of the mission of ASGCT.
significance of nih research funding for gene and cell therapy
NIH funding is crucial to support basic research on biological
targets as well as applied research on new molecular entities, which
both contribute to new therapeutic approvals.\1\ NIH funding
contributed to published research associated with every one of the 210
new drugs approved by the Food and Drug Administration from 2010--
2016.\1\ The development of new therapeutics therefore relies upon this
investment, which could expedite the progression of the gene and cell
therapies in the pipeline to treat multiple diseases.
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\1\ Cleary, E.G., Beierlein, J.M., Khanuja, N.S., McNamee, L.M.,
Ledley, F.D. (2018). Contribution of NIH funding to new drug approvals.
In Snyder, S. H. (Ed.) Proceedings of the National Academy of Sciences,
201715368, doi: 10.1073/pnas.1715368115.
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The gene and cell therapy fields have reached a turning point over
the past year that illustrates the contribution of NIH funding to the
development of life-altering treatments. For example, the December 2017
FDA approval of voretigene neparvovec (Luxturna) began with the
discovery of the RPE65 gene at the National Eye Institute.\2\ This
intramural NIH funding provided necessary baseline information for
further research that led to the development of the gene therapy to
treat the mutations in both copies of that gene, which cause a rare
inherited retinal disorder that nearly always progresses to complete
blindness. In Phase III clinical trials for this gene therapy, 93
percent of all treated participants saw a gain of functional vision, as
assessed by a mobility test, over the follow-up period of at least 1
year from administration of Luxturna to each eye.\3\ Some patients
reported putting away their navigational canes and seeing facial
expressions for the first time following treatment.\2\
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\2\ Shaberman , B. A. (2017). Retinal research nonprofit paves the
way for commercializing gene therapies. Human Gene Therapy 28(12),
1118-1121.
\3\ Spark Therapeutics, Inc. (November 10, 2017). Three-year
follow-up phase 3 data provide additional information on efficacy,
durability and safety of investigational LUXTURNA^TM
(voretigene neparvovec) in patients with biallelic RPE65-mediated
inherited retinal disease [Press release]. Retrieved from http://
ir.sparktx.com/news-releases/news-release-details/three-year-follow-
phase-3-data-provide-additional-information.
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Similarly, two CAR (chimeric antigen receptor) T-cell therapies
were approved over the past year for certain forms of leukemia and
lymphoma. CAR T-cell therapy is a genetically-modified cell therapy in
which a gene is added to a patient's T cells (a type of immune cell) in
a laboratory, which enables these cells to recognize and attack cancer
cells when multiplied and infused back into the patient.\4\ This
advance was made possible with robust Federal investment in cancer
research.\5\ The first clinical trial of CAR T-cell therapy in children
with acute lymphoblastic leukemia (ALL) was funded in part by grants
from the National Cancer Institute (NCI) of the NIH, and researchers at
the NCI were the first to report on the potential of CAR T-cell therapy
for multiple myeloma.\5\ These discoveries are the result of decades of
prior research on immunology and cancer biology, much of which was
supported by Federal funding.\5\
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\4\ NCI Dictionary of Cancer Terms. Retrieved from www.cancer.gov/
publications/dictionaries/cancer-terms/def/car-t-cell-therapy.
\5\ Heymach, J., Krilov, L., Alberg, A., Baxer, N.,Chang, S. M.,
Corcoran, R., . . . Burstein, H. Clinical Cancer Advances 2018: Annual
Report on Progress Against Cancer From the American Society of Clinical
Oncology. Journal of Clinical Oncology 2018 36(10), 1020-1044.
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CAR T-cell therapies are now providing hope of effective treatment
for patients with certain types of ALL and lymphoma that are resistant
to other treatment or have had two or more relapses. For example,
tisagenlecleucel (Kymriah) is providing an overall survival rate of 76
percent 1 year after treatment for children and young adults with
certain forms of relapsed or refractory ALL.\6\ Long-term survival of
these patients without this treatment--with standard chemotherapy and
stem cell transplantation--is approximately 5 percent.\7\
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\6\ Maude, S., Laetsch, T., Buechner, J., Rives, S., Boyer, M.,
Bittencourt, H., . . . Baruchel, A. (2018). Tisagenlecleucel in
children and young adults with B-cell lymphoblastic leukemia. N Engl J
Med 378, 439-448.
\7\ Queudeville, M, Handgretinger, R, Ebinger, M. (2017).
Immunotargeting relapsed or refractory precursor B-cell acute
lymphoblastic leukemia--role of blinatumomab. Onco Targets Ther 10,
3567-3578
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In addition to its direct contributions to gene therapy-related
research, NIH-funded basic research is estimated to provide a positive
return to public investment of 43 percent.\5\ Studies show that NIH
investments in biomedical research stimulate increased private
investment, with every dollar of increase in public clinical research
stimulating $2.35 of industry investment at 3 years.\5\ This economic
stimulation is even higher for gene-related research, with a Federal
investment of $3.8 billion in the Human Genome Project from 1988 to
2003 helping to drive $796 billion in economic output, which is a
return of $141 for every $1 invested.\8\
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\8\ Accelerating Biomedical Research Act, H.R. 5455, 115th Cong.
(2018).
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Need for Additional Gene and Cell Therapy Research
The approvals in 2017 of a gene therapy and two gene-modified cell
therapies exemplify the vast medical progress that NIH research has
contributed to in these areas. However, considerable additional
scientific study will be necessary for gene and cell therapies to reach
their potential to transform the lives of patients with multiple
additional diseases. Many of the diseases for which gene therapy offers
great promise are rare inherited disorders. Of the 7,000 rare diseases
that exist, 95 percent have no current treatment.\9\
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\9\ Institute of Medicine (US) Committee on Accelerating Rare
Diseases Research and Orphan Product Development; Field, M.J., & Boat,
T.F., editors. Rare Diseases and Orphan Products: Accelerating Research
and Development. Washington (DC): National Academies Press (US); 2010.
Available from www.ncbi.nlm.nih.gov/books/NBK56189. doi: 10.17226/
12953.
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Continued strong funding for multiple institutes and centers of the
NIH can support gene and cell therapy research to address this immense
unmet need and the resulting human and economic costs of diseases such
as sickle cell disease, hemophilia, and muscular dystrophy that
collectively impact the lives of 10 percent of the U.S. population.\8\
Children with some hereditary diseases cannot walk, or even breathe or
swallow on their own. Tragically, many of these children die young or
become severely disabled by adolescence. For diseases with longer life
expectancy, such as sickle cell disease and hemophilia, patients face a
lifetime of intensive and expensive medical care. For example, the
average lifetime cost of treating hemophilia for a lifetime is
approximately $12 million.\10\ To develop potentially durable, often
one-time gene therapy treatments for these diseases will require
significant research funding to ease or potentially end the human
suffering, and in some cases the high current medical costs, that they
currently incur.
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\10\ Chen, S.L. (2016). Economic costs of hemophilia and the impact
of prophylactic treatment on patient management. Am J Manag Care 22(5
Suppl), S126-S133.
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Since gene and cell therapies are types of regenerative medicine,
ASGCT is grateful for the funding authorized by the 21st Century Cures
Act for the Regenerative Medicine Innovation Project (RMIP). The
Society requests that the $10 million authorized by the Cures Act for
fiscal year 2019 is appropriated specifically for this initiative, in
addition to generous general NIH appropriations. Appropriations of a
total of $12 million in fiscal year 2017 and fiscal year 2018 for RMIP
are greatly appreciated. Initial fiscal year 2017 funds supported eight
research project awards. The Society also appreciates the $2.2 billion
increase from fiscal year 2018 that the Senate Appropriations Committee
has adopted in 302(b) allocations to the Labor, Health and Human
Services, Education, and Related Agencies Department, compared to the
flat appropriations level adopted by the House of Representatives.
ASGCT encourages retention of at least this level of appropriations to
enable sufficient NIH funding for fiscal year 2019.
While NIH funding increases have been generous over the past 3
years, the need remains to maintain global leadership in medical
innovation, and to compensate for NIH funding not keeping pace with
biomedical research inflation between 2003 and 2015.\8\ This era
resulted in the grant application success rate diminishing to below
historic averages. From 1980 to 2003, the grant application success
rate ranged between 25 and 35 percent. By 2016, the grant application
success rate had fallen to 19.1 percent.\8\ Increases in funding to the
NIH in general, and to the gene and cell therapy fields in particular,
need to continue to support the potential progress in the development
of these transformative treatments.
In conclusion, because NIH funding can contribute to the
development of new gene and cell therapies to treat diseases with great
unmet medical need, ASGCT encourages the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies to provide robust appropriations in its
fiscal year 2019 funding to the many institutes and centers of the NIH
that engage in gene and cell therapy related research. The Society also
advocates for separate, specific appropriations to fund the
Regenerative Medicine Innovation Project. We appreciate your
consideration of these comments.
Sincerely.

[This statement was submitted by Michele P. Calos, PhD, President
and Timothy D. Hunt, JD, Government Relations Committee Chairman,
American Society of Gene & Cell Therapy.]
______

Prepared Statement of the American Society of Hematology
ASH represents more than 17,000 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- and immunotherapy, and the
development of many drugs for the prevention and treatment of heart
attacks and strokes.
fiscal year 2019 request: nih funding
ASH thanks Congress for the robust bipartisan support that has
resulted in several consecutive years of welcome and much needed
funding increases for the National Institutes of Health (NIH),
including the $3 billion increase that Congress provided in the fiscal
year 2018 Consolidated Appropriations Act. For fiscal year 2019, ASH
strongly supports the Ad Hoc Group for Medical Research recommendation
that NIH receive at least $39.3 billion, including funds provided to
the agency through the 21st Century Cures Act's Innovation Account for
targeted initiatives. This funding level, supported by more than 200
other stakeholder organizations, would continue the momentum of recent
years by enabling meaningful base budget growth above inflation to
expand NIH's capacity to support promising science in all disciplines,
including hematology, and also would ensure that the Innovation Account
supplements the agency's base budget, as intended, through dedicated
funding for specific programs. Securing a reliable, robust budget
trajectory for NIH will be key in positioning the agency to capitalize
on the full range of research in the biomedical, behavioral, social,
and population-based sciences. Given the abundance of scientific
opportunity, this recommendation represents a minimum investment to
sustain progress that only would be amplified through an even more
robust commitment.
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, none of which would have
been possible without support from NIH. Funding for hematology research
has been an important component of this investment in the Nation's
health. The study of blood and its disorders is a trans-NIH issue
involving many institutes at the NIH, including the National Heart,
Lung and Blood Institute (NHLBI), the National Cancer Institute (NCI),
the National Institute of Diabetes, Digestive and Kidney Diseases
(NIDDK), and the National Institute on Aging (NIA).
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, including three therapies approved in 2016).
Hematology advances also help patients with other types of cancers,
heart disease, and stroke. Even modest investments in hematology
research have yielded large dividends for other disciplines. Basic
research on blood has aided physicians who treat patients with heart
disease, strokes, end-stage renal disease, cancer, and AIDS. 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.
The field of hematology has experienced a recent surge in progress
thanks to novel technologies, mechanistic insights, and cutting-edge
therapeutic strategies that have driven significant and meaningful
advances in the quality of care. Insights into new genetic and biologic
markers can be used to understand what causes a disease, the risk
factors that predispose to disease, and how patients will respond to a
particular treatment. These foundational insights are reframing modern
research with the continued goal of improving outcomes and discovering
cures for the most challenging hematologic diseases.
The approval of chimeric antigen receptor T-cell (CAR-T) therapy by
the Food and Drug Administration in August 2017 marked an important
shift in the blood cancer treatment paradigm. CAR-T therapy is an
innovative new treatment for certain patients with leukemia and
lymphoma. We now have proof that it is possible to eradicate cancer by
harnessing the power of a patient's own immune system. This is a
potentially curative therapy in patients who have typically exhausted
all other treatment options, including chemotherapy, radiation, or stem
cell transplant, and represents the latest milestone in the shift away
from chemotherapy toward precision medicine. The FDA's approval of this
groundbreaking therapy was the result of over a decade of hematology
research, including research funded by the NIH.
However, while the importance of CAR-T cannot be overstated, this
approval only pertains to a small population of patients. More research
is needed to make this therapy more effective for a broader population,
to reduce the severe side effects that patients experience during
treatment, and ultimately to find a broader application beyond blood
cancers. Continued research will also lead to improved manufacturing of
large numbers of cells, which is necessary to make this therapy
accessible to more patients.
ASH has created several videos highlighting the progress made, and
the future promise, in areas such as immunotherapy, precision medicine,
and genomic profiling.
fiscal year 2019 request: centers for disease control and prevention
The Society also recognizes the important role of the Centers for
Disease Control and Prevention (CDC) in preventing and controlling
clotting, bleeding, and other hematologic disorders.
Sickle cell disease (SCD) is an inherited, lifelong disorder
affecting nearly 100,000 Americans. Individuals with the disease
produce abnormal hemoglobin which results in their red blood cells
becoming rigid and sickle-shaped and causing them to get stuck in blood
vessels and block blood and oxygen flow to the body. SCD complications
include severe pain, stroke, acute chest syndrome (a condition that
lowers the level of oxygen in the blood), organ damage, and in some
cases premature death. Though new approaches to managing SCD have led
to improvements in diagnosis and supportive care, many people living
with the disease are unable to access quality care and are limited by a
lack of effective treatment options.
Surveillance is necessary to improve understanding of the health
outcomes and healthcare system utilization patterns, increase evidence
for public health programs and to establish cost-effective practices to
improve and extend the lives of people with SCD. With funding from the
CDC Foundation, CDC has established a population-based surveillance
system to collect and analyze longitudinal data about people living in
the U.S. with SCD. Data is being collected from multiple sources
(newborn screening programs and Medicaid) in order to create individual
healthcare utilizations profiles. However, due to limited funding,
implementation of the program has occurred only in two States--
California and Georgia (approximately 10 percent of the U.S. SCD
population).
CDC's SCD Surveillance Program should be maintained and expanded to
include additional States with the goal of covering the majority of the
US SCD population over the next 5 years. For fiscal year 2019, the
Society urges the Subcommittee to provide dedicated funding for SCD
surveillance, outreach, and education programs to the CDC's Blood
Disorders Division within the National Center on Birth Defects and
Developmental Disabilities. Funding is needed for coordination and
implementation of a training curriculum in the States with large SCD
populations. CDC should develop a comprehensive, national public health
awareness campaign for people with SCD and sickle cell trait (SCT, when
a person carries a single gene for sickle cell disease and can pass
this gene along to their children), their families, and the general
public along with an educational campaign for the medical professionals
who provide healthcare for people living with SCD or SCT. The goals of
this effort would be to improve overall awareness of SCD and SCT and
knowledge about health outcomes and to provide educational tools for
healthcare professionals to help them understand the effects of medical
interventions and inform best practices for SCD.
Additionally, ASH is supportive of the Public Health and Prevention
Fund which has supported many critical projects at CDC, including
investments in health-care associated infections. Currently the fund
comprises approximately 12 percent of CDC's budget. ASH is concerned
about the repeated efforts to eliminate this fund because of the
budgetary pressure this would place on other programs within the
Subcommittee's jurisdiction.
Finally, ASH supports the request recently made by 81 national
medical, public health, and research organizations to provide funding
for the CDC to conduct public health research into firearm morbidity
and mortality prevention. federally funded public health research has a
proven track record of reducing public health-related deaths, whether
from motor vehicle crashes, smoking, or Sudden Infant Death Syndrome.
This same approach should be applied to increasing gun safety and
reducing firearm-related injuries and deaths, and CDC research will be
as critical to that effort as it was to these previous public health
achievements. The foundation of a public health approach is rigorous
research that can accurately quantify and describe the facets of an
issue and identify opportunities for reducing its related morbidity and
mortality. Robust research on motor vehicle crashes and subsequent
legislation has helped save hundreds of thousands of lives through
public health interventions including seat belts and other safety
features. The same approach can help reduce gun violence in our
communities, including ensuring CDC is able to adequately fund and
perform research into this public health priority.
Thank you again for the opportunity to submit testimony. Please
contact Tracy Roades, ASH Legislative Advocacy Manager, at
[email protected], if you have any questions or need further
information concerning hematology research or ASH's fiscal year 2019
requests.
______

Prepared Statement of American Society of Nephrology and American
Society of Pediatric Nephrology
On behalf of the more than 40 million children, adolescents, and
adults living with kidney diseases in the United States, the American
Society of Nephrology and the American Society of Pediatric Nephrology
requests a $2.2 billion increase for the National Institutes of Health
(NIH) over enacted fiscal year 2018 levels in the Labor, Health and
Human Services, and Education appropriations bill, including a robust
funding increase for the National Institute of Diabetes and Digestive
and Kidney Diseases (NIDDK) that is at least proportional. In addition,
we urge you to consider a Special Statutory Funding Program for Kidney
Research at $150 million per year over 10 years.
A January 2017 Government Accountability Office (GAO) report
highlighted the pressing need for investment in kidney research; at the
time the report was prepared, the GAO found that the annual cost for
care of the approximately 650,000 patients in the Medicare End-Stage
Renal Disease (ESRD) program exceeds the budget allocation for the
entire NIH ($32.8 billion vs. $31.1 billion). Though the NIH received a
substantial increase in fiscal year 2017 with a total allocation of $37
billion, the number of individuals covered in the Medicare ESRD program
and total cost of care has also risen substantially to 700,000
individuals and $34 billion in 2015, the most recent year with
available data. Despite this investment in the Medicare ESRD program,
only approximately 1 percent of the annual total cost of care for
kidney failure is allocated to kidney research at the NIH. Greater
investment in kidney research should be an urgent priority to deliver
better outcomes for patients and bring greater value to the Medicare
program.
As the GAO highlighted, Congress made a commitment to treat all
Americans with kidney failure through the Medicare End-Stage Renal
Disease (ESRD) Program--the only health condition for which Medicare
automatically provides coverage regardless of age. This unique
commitment underscores the imperative for Congress to foster innovation
and discovery in kidney care.
Our organizations believe the Special Statutory Funding Program for
Type 1 Diabetes Research provides an ideal model to foster
breakthroughs in kidney therapies and cures. This Special Diabetes
Program has generated remarkable progress for diabetes patients,
including the development of the Artificial Pancreas. We urge your
support for an additional $150 million per year over 10 years to
establish a similar program NIDDK focused kidney research--a Special
Statutory Funding Program for Kidney Research--supplementing regularly
appropriated funds that the NIDDK receives.
NIDDK funds the vast majority of Federal research in kidney
diseases, and despite the immense gap between the Federal Government's
expenditures on kidney care and its investment in kidney research,
NIDDK-funded scientists have produced several major breakthroughs in
the past several years that require further investment to stimulate
therapeutic advancements. For example, geneticists focused on the
kidney have made advances in understanding the genes that cause kidney
failure, and other kidney scientists have developed an innovative
method to determine if new drugs cause kidney injury before giving them
to patients in clinical trials.
NIDDK recently launched the Kidney Precision Medicine Project that
will pinpoint targets for novel therapies--setting the stage for
personalized medicine in kidney care. The groundbreaking APOL1 Long-
term Kidney Transplantation Outcomes Research Network (APOLLO) study
will convene a multidisciplinary group of investigators to follow a
longitudinal cohort of kidney donors and recipients to determine the
impact of APOL1 genetic variants on transplantation. The APOL1 gene,
common in individuals of West-African descent- has been linked with
kidney diseases in several studies and may help to better explain and
treat the high incidence of kidney diseases among African Americans.
Additional, sustained funding is needed to accelerate these and other
novel opportunities to improve the care of patients with kidney disease
and bring better value to the Medicare ESRD program.
Thank you again for your leadership, and for your consideration of
our request. Should you have any questions or wish to discuss NIDDK or
kidney research in more detail, please contact Erika Miller with the
American Society of Pediatric Nephrology at [email protected] or
Rachel Meyer with the American Society of Nephrology at rmeyer@asn-
online.org.
about the american society of nephrology
The American Society of Nephrology is a 501(c)(3) non-profit, tax-
exempt organization that leads the fight against kidney disease by
educating the society's nearly 18,000 nephrologists, scientists, and
other healthcare professionals, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. For more information, visit www.asn-online.org.
about the american society of pediatric nephrology
Founded in 1969, the American Society of Pediatric Nephrology is a
professional society composed of pediatric nephrologists whose goal is
to promote optimal care for children with kidney disease and to
disseminate advances in the clinical practice and basic science of
pediatric nephrology. ASPN currently has over 600 members, making it
the primary representative of the Pediatric Nephrology community in
North America.
______

Prepared Statement of the American Society of Nephrology
On behalf of the more than 40 million Americans living with kidney
diseases, the American Society of Nephrology (ASN) respectfully
requests $25 million, to be matched dollar for dollar by ASN, be
included for ``KidneyX''--a public-private partnership to accelerate
innovation in the diagnosis, prevention, and treatment of kidney
diseases--in the fiscal year 2019 Labor, Health and Human Services,
Education and Related Agencies Appropriations bill.\1\ ASN has already
received a $25 million commitment for KidneyX from the private sector.
---------------------------------------------------------------------------
\1\ National Institutes of Health: Kidney Disease Research Funding
and Priority Setting, GAO-17-121 (Dec. 2016).
---------------------------------------------------------------------------
A cross-Health and Human Services (HHS) initiative, KidneyX will be
a series of prize competitions run by the Office of the Secretary of
HHS under the authority established by the Stevenson-Wydler Technology
Innovation Act of 1980 (15 U.S.C. Sec. 3719) and reasserted by the
America COMPETES Reauthorization Act of 2010 and the ``Eureka Prize
Competitions'' section of the 21st Century Cures Act of 2016.
More than 40 million people in the United States are living with
kidney diseases, and nearly 700,000 have kidney failure, for which
there is no cure.\2\ Dialysis, the most common therapy for kidney
failure, is often burdensome for patients--93 percent of working-age
adults receiving dialysis are classified as disabled.\3\ Dialysis is
not a cure--more than half of people with kidney failure die within 5
years of starting dialysis.\4\ Despite the significant burden of kidney
diseases, there has been a dearth of innovation in this space compared
to other areas of medicine. Our healthcare system has fostered a sense
of complacency with current therapies and technologies, and the bundled
payment system for dialysis is a deterrent for innovators and investors
to enter the kidney care space.
---------------------------------------------------------------------------
\2\ National Institutes of Health: Kidney Disease Research Funding
and Priority Setting, GAO-17-121 (Dec. 2016).
\3\ Erickson, K F, Zhao, B, Ho, V, Winkelmayer, W C: Employment
among Patients Starting Dialysis in the United States. Clin J AM Soc
Nephrol 13, 2018.
\4\ United States Renal Data System. 2017 USRDS annual data report:
Epidemiology of kidney disease in the United States. National
Institutes of Health, National Institute of Diabetes and Digestive and
Kidney Diseases, Bethesda, MD, 2017.
---------------------------------------------------------------------------
Treating and managing kidney diseases and kidney failure is costly
to the Federal Government. As the Government Accountability Office
(GAO) highlighted in 2016, Medicare spent $33.9 billion to manage
kidney failure through Medicare's End Stage Renal Disease (ESRD)
program--more than 7 percent its spending in 2015.\5\
---------------------------------------------------------------------------
\5\ National Institutes of Health: Kidney Disease Research Funding
and Priority Setting, GAO-17-121 (Dec. 2016).
---------------------------------------------------------------------------
The GAO's findings highlight the need for KidneyX, a public-private
partnership to seed, incent, and accelerate breakthroughs to promising
new products for people with kidney diseases. KidneyX was designed to
reduce barriers to innovation in the prevention, diagnosis, and
treatment of kidney diseases, and catalyze private sector involvement.
KidneyX stimulates the commercialization of new therapies while
catalyzing investment by the private market in three specific ways that
are not currently addressed by market forces or Federal efforts:
--De-risks the commercialization process by fostering coordination
among the National Institutes of Health, the Food and Drug
Administration, and the Centers for Medicare & Medicaid
Services to provide a clear, predictable path towards
commercialization
--Provides non-dilutive funding to seed, incent, and accelerate
breakthroughs to promising innovators, selected through a
competitive process
--Offers participating innovators access to investors and business
experts and repositions the kidney space as an attractive and
untapped market
The first round of funding focuses on developing and
commercializing next-generation renal replacement therapies, but the
portfolio will expand to include diagnostics, other devices,
medications, and patient-centered tools that effectively and
efficiently manage kidney diseases.
KidneyX is sustainable: revenue generated from breakthrough
commercialized developments will be cycled back to support KidneyX,
funding future therapies without the need for additional public
investment beyond the first 5 years. Similar public-private
accelerators, like the Combating Antibiotic Resistant Bacteria
Biopharmaceutical Accelerator (CARB-X), have shown great success in
catalyzing private sector investment to transform stagnant fields.
KidneyX is a patient-centered solution driven by an invested
community. As a true public-private partnership, the private sector is
committed to providing matching funds to achieve the total $250 million
required for the first 5 years. To date, $25 million has been committed
to KidneyX from the private sector. KidneyX will issue its first round
of prize funding using private contributions in 2018.
We respectfully request that the Labor-HHS Subcommittee begin a 5-
year commitment by appropriating $25 million in new funds in fiscal
year 2019 for KidneyX, catalyzing private sector investment in kidney
health. In addition, we also ask that you include the following
language in the report accompanying your Committee's appropriations
bill:
The Committee is aware that more than 40 million U.S. citizens are
living with kidney diseases, and for nearly 700,000 of those
individuals, the diseases progress to kidney failure, requiring access
to dialysis or kidney transplantation to live. The Committee notes that
kidney failure alone accounted for more than 7 percent of Medicare
spending (approximately $34 billion) in fiscal year 2015.
Given the high cost of kidney disease in terms of health
consequences and Federal spending, the Committee recommends that of the
total allotted to HHS in fiscal year 2019, that $25,000,000 be made
available to KidneyX--the first of a like 5-year commitment of $125
million to support KidneyX. The Committee has included funding to
support this recommendation. This funding will accelerate the
development and adoption of novel technologies that improve the
diagnosis and treatment of patients with kidney diseases, through a
variety of fund awards, technical assistance, and other support
resources and services.
We note that the President's fiscal year 2019 budget request
included an allocation of $50 million for prize competitions under the
authority of section 105 of the America COMPETES Reauthorization Act of
2010. This allocation was instructed to focus on the types of
innovation highlighted in section 200 ``Eureka Prize Competitions'' of
the 21st Century Cures Act, including:
--``innovations funded through prize competitions on advancing
biomedical science or improving health outcomes,''
--``for which public and private investment in research is
disproportionately small relative to Federal Government
expenditures on prevention and treatment activities with
respect to such diseases and conditions, such that Federal
expenditures on health programs would be reduced,'' and
--``that are serious and represent a significant disease burden in
the United States.''
KidneyX, operated through a series of prize competitions and
focused on advancing biomedical science and improving health outcomes,
falls squarely in line with section 200 of the 21st Century Cures Act.
Thank you for your consideration of this important request. Should
you have questions or need additional information, do not hesitate to
contact Rachel Meyer, Director of Policy and Government Affairs of the
American Society of Nephrology, at [email protected].
about the american society of nephrology
The American Society of Nephrology is a 501(c)(3) non-profit, tax-
exempt organization that leads the fight against kidney disease by
educating the society's more than 18,000 nephrologists, scientists, and
other healthcare professionals, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. For more information, visit www.asn-online.org.

______

Prepared Statement of the American Society of Tropical
Medicine and Hygiene
The American Society of Tropical Medicine and Hygiene (ASTMH)--the
largest international scientific organization of experts dedicated to
reducing the worldwide burden of tropical infectious diseases and
improving global health-appreciates the opportunity to submit testimony
to the Senate Labor, Health and Human Services, Education, and Related
Agencies (LHHS) Appropriations Subcommittee on fiscal year 2019 funding
for the National Institutes of Health (NIH) and Centers for Disease
Control and Prevention (CDC) programs addressing tropical infectious
diseases and global health.
Tropical infectious diseases are by no means a new threat and they
continue to pose significant challenges to the U.S. in our ongoing
efforts abroad to improve public health and strengthen our
relationships to the benefit of maintaining our Nation's security.
While we understand the fiscal constraints we face and are sensitive to
the job Congress must do, it is critical that the U.S. maintain robust
funding in global health research and development (R&D) and that we not
continue the current 'funding by crisis' cycle. The best examples of
why this is needed can be seen in our recent response to the Zika and
Ebola outbreaks. Responding to the Zika outbreak required billions of
dollars of global investment that is still needed to support the
development of a vaccine, coordinate mosquito control in at-risk areas,
and monitor the spread of the disease.
The vast majority of infectious diseases do not emerge in the U.S.,
instead they thrive elsewhere often long before a catalytic event
occurs that rapidly mobilizes the threat bringing it to the U.S. It is
our lack of urgency and response to address these threats while they
exist as remote tropical diseases that allows their spread and
increases our domestic vulnerabilities. It is not a question of whether
a new infectious disease outbreak will occur, it is a matter of when
and what it will be. For this reason, Congress needs to support
sustainable investments in U.S. global health R&D to increase our
knowledge, understanding, and tools to confront infectious disease.
We were alarmed by the deep cuts proposed in the President's fiscal
year 2019 budget, particularly for programs that support these efforts
within CDC and NIH. We strongly advocate that the Subcommittee fully
fund NIH and CDC in the fiscal year 2019 LHHS appropriations bill to
protect Americans and ensure continued U.S. investment in global health
and tropical medicine research and development.
return on investment of u.s.-funded research
The programs at CDC and NIH are critical to advancing research and
development for tropical medicine and global health. Both agencies
employ leading experts who are at the forefront of science and provide
partnerships that lead the U.S. to development of new tools to combat
malaria, tuberculosis (TB), epidemic viruses, neglected tropical
diseases (NTDs) and other infectious diseases. In addition to creating
lifesaving new drugs and diagnostics to aid some of the poorest, most
at-risk people in the world, this research provides jobs for American
researchers and shines a light on the U.S. as a leader in health
innovation. In 2015, 89 cents of $1 the U.S. Government invested in
global health R&D was invested domestically within the U.S., supporting
jobs for American researchers, scientists, and academics.\1\
---------------------------------------------------------------------------
\1\ Global Health Technologies Coalition and Policy Cures Research.
(2017). Return on Innovation: Why Global Health R&D is a Smart
Investment for the United States. Retrieved from http://
www.ghtcoalition.org/pdf/Return-on-innovation-Why-global-health-R-D-is-
a-smart-investment-for-the-United-States.pdf.
---------------------------------------------------------------------------
tropical disease
Malaria and Parasitic Disease.--While we have seen tremendous
success as a result of U.S. funded efforts to eliminate malaria, the
disease remains a significant global health threat. Despite our ability
to treat and prevent malaria, it is still one of the leading causes of
death and disease worldwide. According to the latest estimates,
approximately 3.2 billion people living in 106 countries and
territories are at risk for malaria transmission.\2\ Among these,
malaria poses the most significant threat to poor women and children,
but it is also a major threat to our military and other travelers to
the tropics. In 2016, there were about 216 million new cases of malaria
and an estimated 445,000 deaths--a small, but not insignificant rise
since 2015.\3\ Therefore, it is critical that the U.S. Government
maintain strong investments in malaria efforts to ensure a steady
decline in the number of those affected and outbreaks that reach the
U.S. In 2015, at least 1 malaria case was reported in each of the 50
States with more than 200 reported in New York City and another almost
60 cases throughout the State of New York. There were over 100 cases in
Maryland, Texas and California. Historical data shows that our U.S.
investments in eliminating malaria in other countries has a direct
correlation with the exposure in the U.S. A steep decline in malaria
cases in Mexico since 1985 preceded an almost exact decline in the
number of U.S. cases reported from Mexico over the same period of time.
As a result of our collaborative efforts to fight malaria, mortality
rates have fallen by 62 percent globally since 2002. Still,
approximately every two minutes, a child needlessly dies of malaria.
---------------------------------------------------------------------------
\2\ Centers for Disease Control and Prevention. (2017). Malaria
Facts. Retrieved from https://www.cdc.gov/malaria/about/facts.html.
\3\ Centers for Disease Control and Prevention. (2018). Malaria.
Retrieved from https://www.cdc.gov/malaria/index.html.
---------------------------------------------------------------------------
Neglected Tropical Diseases.--NTDs are a group of chronic parasitic
and bacterial diseases that represent the most common infections of the
world's poorest people. These disease cause disfigurement, debilitation
and extreme suffering--reducing cognitive development, stunting growth,
and in some cases leading to death. As a result, NTDs severely limit
the future earning potential of men, women, and children across the
developing world resulting in further economic drain in already
strained countries. These infections are considered a primary reason
why the ``bottom billion''--the 1.4 billion poorest people living below
the poverty line--cannot escape poverty. While there is adequate
treatment for some NTDs, there are many without adequate treatment or
treatments that are not practical for low-resource settings. Tropical
diseases, many of them neglected for decades, impact U.S. citizens
working or traveling overseas, as well as our military personnel. Some
diseases such as dengue fever, chikungunya, and Zika have even made
their way to the U.S. with those like West Nile virus taking root here.
Viruses are but a plane ride away from any point in the world, and U.S.
citizens are inadequately protected and vulnerable.
national institutes of health
Fogarty International Center (FIC).--To protect the health and
safety of Americans, the FIC has for three decades managed grant
programs that develop scientific expertise in developing countries,
ensuring there is local capacity to detect and address pandemics at
their point of origin, contain outbreaks and minimize their impact.
After all, we are all only as safe as our weakest link. More than 80
percent of FIC's approximately $54 million extramural grant making
budget goes to U.S. institutions to support scientists' salaries and
other costs. FIC programs fund over 500 projects involving about 100
U.S. universities. 100 percent of FIC grant awards in fiscal year 2016
involved U.S. researchers.\4\
---------------------------------------------------------------------------
\4\ National Institutes of Health. (2018). The John Edward Fogarty
International Center: Fogarty at 50. Retrieved from https://
www.fic.nih.gov/News/Publications/Documents/fogarty-international-
center-overview.pdf.
---------------------------------------------------------------------------
Since 2008, Fogarty, in partnership with the Department of Homeland
Security, has coordinated an effort to use mathematical modeling to
better predict and prevent the spread of infectious diseases in humans
and animals. FIC scientists recently built predictive risk maps to
understand and forecast the spread of the Ebola and Zika virus
epidemics. With these computational tools and data, policymakers can
make informed decisions on how to respond to outbreaks. Fogarty plays a
critical role in ensuring U.S. preparedness and our ability to protect
our citizens against the next pandemic threat. A FIC trained scientist
is leading the Zika vaccine trial in Peru to find a solution that will
ultimately help protect Americans from Zika.
ASTMH encourages the subcommittee to continue the important and
unique work of FIC to foster a stronger and more effective scientific
workforce and health capacity on the ground, and to continue the
increasingly influential role of improving the image of the U.S. though
science diplomacy in these countries. Investments such as this are
critical to protecting Americans from the next disease to cross our
borders.
National Institute of Allergy and Infectious Diseases.--NIAID is
the lead institute for malaria and NTD research. In the past year,
NIAID reported significant progress in addressing malaria, including
the recent development of low-cost diagnostic tests that can rapidly
detect resistance of malaria to artemisinin, a first-line antimalarial
drug. Resistance to artemisinin is a growing danger and one that we
must be aggressively addressing. NIAID also helped lead accelerated
trials of an Ebola vaccine and is working on important Zika research.
Consistent investment is critical to achieve the drugs, diagnostics,
and research capacity needed to control malaria, NTDs, Zika and Ebola.
ASTMH encourages the subcommittee to continue its investment in
malaria and NTD research, including work in late-stage and
translational research for NTDs, and to work with other agencies to
foster research and ensure that basic discoveries are translated into
much needed solutions.
the centers for disease control and prevention
The Global Health Security Agenda.--In partnership with other U.S.
Government agencies, nations, international organizations, and public
and private stakeholders, CDC announced a Global Health Security Agenda
in 2014 to ``accelerate progress toward a world safe and secure from
infectious disease threats and to promote global health security as an
international security priority.'' The Agenda focuses on preventing and
reducing the likelihood of outbreaks, detecting threats early to save
lives, and responding rapidly. The CDC's Center for Global Health and
the National Center for Emerging & Zoonotic Infectious Diseases each
play an important role in these efforts and must be supported through
robust funding to carry out their duties.
The Center for Global Health:
Malaria and Parasitic Disease.--The CDC remains on the cutting edge
of global efforts to reduce the deadly toll of malaria. The
agency's efforts on malaria and parasitic disease fall into
three broad categories: prevention, treatment, and monitoring/
evaluation. In addition, the CDC is constantly evaluating
programs and interventions to make sure they and the U.S.
taxpayer dollars are being used efficiently and effectively.

ASTMH encourages the subcommittee to continue to fund a
comprehensive approach to malaria and parasitic disease
prevention and treatment efforts through the Malaria and
Parasitic Disease program. However, ASTMH continues to be
alarmed that the budget request for this program has remained
stagnant for at least 10 years. The lack of even modest
increases for so long has the result of a cut to the budget as
overhead and research costs rise year to year. This strains the
ability for the United States to maintain advances made in this
area.

Neglected Topical Diseases.--CDC currently receives zero dollars
directly for NTD work outside of parasitic diseases. This
should be changed to allow for more comprehensive work to be
done on NTDs at the agency. 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.

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 monitoring,
evaluating, and providing technical assistance in these areas
as an underpinning of efforts to control and eliminate these
diseases.
The National Center for Emerging & Zoonotic Infectious Diseases and
its Vector Borne Disease Program (NCEZID) funds essential surveillance
and monitoring activities that protect the U.S. from deadly infections
before they reach our borders and address the problems of tick and flea
transmitted infections such as Lyme disease and a dozen other
infections, including Zika and Ebola, that can be life-threatening
within the U.S. The CDC has previously issued warnings to clinicians
across the U.S. to be on the lookout for patients showing symptoms of
chikungunya, a debilitating mosquito-borne virus that has recently been
found in Americans along the gulf coast.
ASTMH encourages the subcommittee to recognize the critical role
that NCEZID and its Vector-Borne Disease Program play in ongoing
efforts to prepare for and fight tropical diseases emerging on U.S.
soil, such as dengue, Chikungunya and now Zika.
conclusion
Thank you for your attention to these important U.S. and global
health matters. Tropical medicine/global health research saves lives
and is a smart economic strategy for the U.S. We hope you will provide
the requested fiscal year 2019 resources to those programs identified
above. 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.

[This statement was submitted by Regina Rabinovich, MD, MPH,
President, American Society of Tropical Medicine and Hygiene.]
______

Prepared Statement of the American Thoracic Society

SUMMARY: FUNDING RECOMMENDATIONS
[In millions $]

------------------------------------------------------------------------
National Institutes of Health..................... At least $39.3
billion
National Heart, Lung & Blood Institute........ 3,675
National Institute of Allergy & Infectious 5,575
Disease......................................
National Institute of Environmental Health 792.2
Sciences.....................................
Fogarty International Center.................. 80.2
National Institute of Nursing Research........ 159.2

Centers for Disease Control and Prevention........ 8,445
National Institute for Occupational Safety & 339.1
Health.......................................
Asthma Programs............................... 30
Div. of Tuberculosis Elimination.............. 195.7
Office on Smoking and Health.................. 220
National Sleep Awareness Roundtable (NSART)... 1
------------------------------------------------------------------------

The American Thoracic Society's (ATS) 16,000 members help prevent
and fight respiratory disease through research, education, patient care
and advocacy.
lung disease in america
Respiratory diseases are the third leading cause of death in the
U.S., responsible for one of every seven deaths. Diseases affecting the
respiratory (breathing) system include chronic obstructive pulmonary
disease (COPD), lung cancer, influenza, sleep disordered breathing,
pediatric lung disorders, pneumonia, tuberculosis, occupational lung
disease, asthma, and critical illnesses such as sepsis.
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 asthma. The ATS thanks Congress for the $3
billion funding increase for NIH in fiscal year 2018. In order to
continue to accelerate the development of life-saving cures and
treatments and innovative prevention interventions, it is essential for
Congress to continue providing robust, predictable funding increases
across the full spectrum of NIH-supported research. The ATS is
concerned that due to past reductions in Federal research funding,
there remains a lack of opportunities for young investigators who are
the future of scientific innovation. We ask the subcommittee to provide
at least $39.3 billion in funding for the NIH in fiscal year 2019, in
addition to funds included in the 21st Century Cures Act for targeted
initiatives.
Despite the fact that respiratory disease is the third leading
cause of death in the U.S., respiratory research is underfunded. The
COPD death rate has doubled within the last 30 years and is still
increasing, while the rates for the other top causes of death (heart
disease, cancer and stroke) have decreased by over 50 percent. Despite
the rising respiratory disease burden, research funding for the disease
is disproportionally low relative to funding invested for the other
three leading causes of death. In order to stem the devastating effects
of respiratory disease, research funding must grow.
copd
Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading
cause of death in the United States and the third leading cause of
death worldwide, yet the disease remains relatively unknown to most
Americans. CDC estimates that 12 million patients have COPD; an
additional 12 million Americans are unaware that they have this life
threatening disease. COPD costs the economy almost $50 billion a year,
including $29 billion in direct health expenditures and $29 billion in
indirect costs such as lost wages.
The COPD National Action Plan, released in 2017, aims to expand
surveillance and research on the disease, improve patient care, develop
public health interventions and increase public awareness of the
disease. The ATS urges Congress to provide $75 million in fiscal year
2019 for implementation of the COPD National Action Plan through the
NHLBI and CDC. We also urge CDC to include COPD-based questions to
future CDC health surveys, including the National Health and Nutrition
Evaluation Survey (NHANES), the Behavioral Risk Factor Surveillance
System (BRFSS) and the National Health Information Survey (NHIS).
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 $8.445
billion for the CDC in fiscal year 2019.
antibiotic resistance
According to the Centers for Disease Control and Prevention's (CDC)
2013 report, Antibiotic Resistance Threats in the United States, as
many as 23,000 deaths occur in the US annually due to antibiotic
resistant bacterial and fungal pathogens including drug resistant
pneumonia and sepsis infections. The rise of antibiotic resistance
demonstrates the need to increase efforts through the CDC, NIH and
other Federal agencies to monitor and prevent antibiotic resistance and
develop rapid new diagnostics and treatments. This includes the
following recommendations for CDC programs:
--$200 million for the Antibiotic Resistance Solutions Initiative
--$21 million for the National Healthcare Safety Network (NHSN)
--$30 million for the Advanced Molecular Detection (AMD) Initiative
We urge the committee to provide $5.575 billion for the National
Institutes of Allergy and Infectious Disease (NIAID) to spur research
into rapid new diagnostics, new treatments and other activities and
$700 million for the Biomedical Advanced Research and Development
Authority (BARDA) to support antimicrobial research and development.
tobacco control
Tobacco use is the leading preventable cause of death in the U.S.,
responsible for one in five deaths annually. Tobacco cessation and
prevention activities are among the most effective and cost-effective
investments in disease prevention. The CDC's Office on Smoking and
Health (OSH) is the lead Federal program for tobacco prevention and
control and created the ``Tips from Former Smokers'' Campaign, which
has prompted hundreds of thousands of smokers to call 1-800-QUIT-NOW or
visit smokefree.gov for assistance in quitting--with even more smokers
making quit attempts on their own or with the assistance of their
physicians. The ATS recommends a total funding level of $220 million
for the Office of Smoking and Health in fiscal year 2019.
asthma
Asthma is a significant public health problem in the U.S.
Approximately 24.6 million Americans currently have asthma. In 2014,
3,651 Americans 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.
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. A study published in the
American Journal of Respiratory Critical Care in 2012 found that for
every dollar invested in asthma interventions, there was a $36 benefit.
We ask that the subcommittee's appropriations request for fiscal year
2019 funding for CDC's National Asthma Control Program be maintained at
a level of at least $30 million.
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, cardiovascular disease,
obesity, mental health disorders, and other comorbidities. The ATS
recommends a funding level of $1 million in fiscal year 2019 to support
activities related to sleep and sleep disorders at the CDC, including
surveillance activities and public educational activities. The ATS also
recommends an increase in funding for research on sleep disorders at
the NHLBI's Nation Center for Sleep Disordered Research (NCSDR).
tuberculosis
Tuberculosis (TB) is the leading global infectious disease killer,
ahead of HIV/AIDS, claiming 1.7 million lives each year. In the U.S.,
every State reports cases of TB annually and in 2017, 20 States
reported TB increases. Drug resistant tuberculosis was identified as a
serious public health threat to the U.S. in CDC's 2013 report on
antimicrobial resistance. Drug-resistant TB strains poses a particular
challenge to domestic TB control due to the high costs of treatment,
intensive healthcare resources and burden on patients. Treatment costs
for multidrug-resistant (MDR) TB, which is up to 2 years in length,
range from $100,000 to $300,000. The continued global pandemic of this
airborne infectious disease and spread of drug resistant TB demand that
the U.S. strengthen our investment in global and domestic TB control
and research to develop new TB diagnostic, treatment and prevention
tools.
The ATS recommends a funding level of $195.7 million in fiscal year
2019 for CDC's Division of TB Elimination and $21 million for CDC's
Global TB program through the Center for Global Health. We urge the NIH
to expand research to develop new tools to address TB. Additionally, in
recognition of the unique public health threat posed by drug resistant
TB, the ATS urges BARDA to support research and development into new
drug-resistant TB diagnostic, treatment and prevention tools.
pediatric lung disease
The ATS is pleased to report that infant death rates for various
lung diseases have declined for the past 10 years. Many of the
precursors of adult respiratory disease start in childhood. For
instance, 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 and NICHD to sustain
and expand research efforts to study lung development and pediatric
lung diseases.
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. This is the approximately the same number of deaths each
year due to breast cancer, colon cancer, and prostate cancer combined.
Another critical illness, sepsis, affects over 1.5 million Americans
annually, and, according to the AHRQ, is the most expensive condition
treated in hospitals, amounting to over $23 billion annually.
Investigation into diagnosis, treatment and outcomes in critically ill
patients should be a priority, and the NIH should be funded and
encouraged to coordinate investigation in this area in order to meet
this growing national imperative.
researching and preventing occupational lung disease
As Congress considers funding priorities for fiscal year 2019, the
ATS urges the subcommittee to provide at least $339.1 million in
funding for the National Institute for Occupational Safety and Health
(NIOSH). NIOSH, within the CDC, is the primary Federal agency
responsible for conducting research and making recommendations for the
prevention of work-related illness and injury. The ATS appreciates the
opportunity to submit this statement to the subcommittee.

[This statement was submitted by Polly Parsons, MD, President,
American
Thoracic Society.]
______

Prepared Statement of the Arthritis Foundation
On behalf of the more than 54 million adults and 300,000 children
living with doctor-diagnosed arthritis in the United States, the
Arthritis Foundation thanks Chairman Blunt and Ranking Member Murray
for the opportunity to provide written testimony to the Appropriations
Subcommittee on Labor, Health and Human Services (HHS), and Education
and Related Agencies for fiscal year 2019. We respectfully request $16
million for the Centers for Disease Control and Prevention (CDC)
Arthritis Program and sufficient funding for the National Institutes of
Health (NIH) for fiscal year 2019.
Arthritis affects 1 in 4 Americans and is the leading cause of
disability in the United States, according to CDC. It limits the daily
activities of nearly 24 million Americans and causes work limitations
for 40 percent of the people with the disease. This translates to over
$300 billion a year in direct and indirect costs. There is no cure for
arthritis, and for some forms of arthritis like OA, there is no
disease-modifying pharmaceutical therapy. Research is critical to build
towards a cure, develop better treatments with fewer severe side
effects, and identify biomarkers and therapies for types of arthritis
for which none exist. A strong investment in public health research and
programs is essential to making breakthroughs in treatments, finding a
cure for arthritis, and for delivering those breakthroughs to the
people who suffer from this debilitating disease.
centers for disease control and prevention arthritis program
The CDC Arthritis Program is the only Federal program dedicated
solely to arthritis. Today, the program provides grants to 12 States to
support evidence-based disease management programs. Its goal is to
connect all Americans with arthritis to resources to help them manage
their disease. Evidence-based programs like EnhanceFitness help keep
older adults active, and have shown a 35 percent improvement in
physical function, resulting in fewer hospitalizations and lower health
costs compared to non-participants. Further, 1 in 3 veterans has
doctor-diagnosed arthritis, and these evidence-based exercise programs
are recommended by the CDC to help our veterans reduce the impact of
arthritis on their lives.
Not only does the Arthritis Program provide resources to people
with arthritis, it also supports data collection on the prevalence and
severity of arthritis. Due to this support, we know that 1 in 4
Americans has doctor-diagnosed arthritis, including 28 percent of
people in Oklahoma and 25 percent of people in Connecticut; 419,000 of
those people in Oklahoma and 290,000 of those people in Connecticut are
limited by their arthritis. CDC completed 17 publications in 2017,
including updated prevalence statistics, data on medical expenditures
and earnings losses due to arthritis, and causes of workplace
disability. This type of data is essential to setting research
priorities and developing a targeted public health agenda for defeating
arthritis in communities that are suffering the most. Without the
Arthritis Program, the robust level of data collection we have now
would not exist.
Given the high prevalence and severity of this disease, the
Arthritis Program is woefully under-funded compared to the investment
in other chronic diseases. Funding for the program was cut by 25
percent in fiscal year 2015, bringing the fiscal year 2015 total down
from $13 million to $9.5 million. As a result, program staff had to cut
program activities between 10-50 percent, with some eliminations, and
were unable to make new investments in arthritis programs. While $1.5
million was restored in fiscal year 2016, the Arthritis Program is
still not operating at its full funding level of $13 million; combined
with previous flat funding, the program has lost millions of dollars in
purchasing power over the last 7 fiscal years.
In 2013 for the first time, data showed that arthritis affects at
least 20 percent of the population in every State. All 50 States need
funding from the Arthritis Program. While this is a long-term goal, a
critical first step is to increase funding in fiscal year 2019 by $5
million so it can continue its current level of operations in the 12
States it supports and begin to expand into additional States. With
this increase, the Arthritis Program could operate in an additional 2
States, support more national grants, and increase its investment in
public health research and data collection. Therefore, we urge you to
fund the CDC Arthritis Program at $16 million in fiscal year 2019.
national institutes of health
As previously stated, there is no cure for arthritis, and for some
forms of the disease, no effective pharmaceutical therapies. Even for
autoimmune forms of the disease like RA, biologic medications--which
have revolutionized treatment by halting the progress of disease in
many patients--have severe side effects. There is also no ``gold
standard'' diagnostic for many forms of arthritis like RA and juvenile
arthritis, and therefore it can take a long time to diagnose these
diseases. It is not uncommon for children to go months without an
official diagnosis, which can delay the start of critical treatment.
Research is the key to identifying better diagnostics and better
treatments, so that people have access to treatments early in their
disease, ensuring a higher quality of life and better health outcomes.
The National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS) is one of the primary NIH Institutes that supports
arthritis research. There are a number of initiatives supported by
NIAMS to better understand arthritis. The Osteoarthritis Initiative is
a public-private, multi-center, longitudinal study of knee OA that was
launched in 2002 with the goal of identifying biomarkers for OA as
potential surrogate endpoints for onset and progression. The
Accelerating Medicines Partnership was launched in 2014 as a public-
private partnership that includes RA/lupus as one of three disease
topics with the goal of accelerating drug development.
Research currently supported by NIAMS is addressing major questions
necessary to unlocking the unknowns of arthritis, including: gene-
environment interactions can help determine the relationship between RA
and environmental and genetic factors that trigger onset; which
biological pathways are affected in people with RA and how drug
development can target those pathways to expand the pool of drugs
available to people with RA; and how existing successful anti-rheumatic
drugs may be used for other arthritis-related diseases.
Future research efforts can explore how changes to DNA regions can
lead to disease, with the goal of uncovering additional targeted
treatments. A strong overall NIH funding level is critical to
maintaining the investment in research on arthritis in all its forms.
Therefore, we urge you to provide sufficient funding for NIH in fiscal
year 2019 to keep pace with the growing research needs in the arthritis
community.
We thank the Subcommittee for its commitment to public health. As
you write the fiscal year 2019 Labor-HHS-Education appropriations bill,
we urge you to fund the CDC Arthritis Program at $16 million and
provide sufficient funds to the NIH to continue the investment in
improving the lives of people with arthritis. Please contact Anna Hyde,
Vice President of Advocacy and Access, at [email protected], or
Vincent Pacileo, Director of Federal Affairs, at
[email protected], with any questions.
______

Prepared Statement of the Association for Career and Technical
Education
Chairman Blunt, Ranking Member Murray and members of the
subcommittee, on behalf of the Association for Career and Technical
Education (ACTE), the Nation's largest not-for-profit association
committed to the advancement of education that prepares youth and
adults for career success, I write to urge a strong Federal investment
in the Carl D. Perkins Career and Technical Education Act (Perkins) for
the coming fiscal year. To ensure that students are equipped with the
academic, technical and employability skills they need for the jobs of
today and the careers of tomorrow, we respectfully request that the
subcommittee increase funding for the Perkins Basic State Grant
program, administered by the U.S. Department of Education, Office of
Career, Technical, and Adult Education, to $1.3 billion in the fiscal
year 2019 Labor, Health and Human Services, Education, and Related
Agencies appropriations bill.
Perkins is the principal source of dedicated Federal funding for
CTE programs in our Nation's high schools and postsecondary
institutions, providing capacity-building resources through a need-
based formula. This Federal investment is essential to ensuring that
students are prepared for careers in expanding fields like engineering,
information technology, advanced manufacturing and healthcare. In a
rapidly changing job market, CTE equips students with the transferable
skills they will need for long-term career success, while offering
reskilling opportunities to many working and displaced adults.
Investing in CTE has provided substantial benefits for States and
communities across the country. In Wisconsin, taxpayers receive $12.20
in return for every dollar invested in the technical college system.\1\
Oklahoma's economy reaps a net benefit of $3.5 billion annually from
graduates of the CTE system.\2\ Individuals who receive a certificate
or degree from California Community Colleges almost double their
earnings within 3 years,\3\ while Colorado Community College System
alumni in the workforce contribute $5.1 billion annually to the State
economy.\4\ Every dollar spent on secondary CTE students in Washington
State leads to $26 in lifetime earnings and employee benefits.\5\
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\1\ Wisconsin Technical College System, The Technical College
Effect, 2014.
\2\ OKCareerTech, PoweredbyOKCareerTech.com.
\3\ Foundation for California Community Colleges, Facts and
Figures.
\4\ Colorado Community College System, The Economic Value of the
Colorado Community College System, May 2017.
\5\ Workforce Training and Education Coordinating Board, Secondary
CTE: State Core Indicator Results, 2017.
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Moreover, students involved in CTE programs are more engaged,
graduate at higher rates and typically go on to postsecondary
education. The average high school graduation rate for students
concentrating in CTE is 93 percent, compared to an average national
freshman graduation rate of 80 percent.\6\ Taking one CTE class for
every two academic classes minimizes the risk of students dropping out
of high school.\7\ Additionally, CTE students were more likely to
develop time management, critical-thinking and other essential skills
while in high school.\8\ Those students are also likely to persist in
their education--91 percent of high school graduates who earned 2-3 CTE
credits enrolled in college.\9\
---------------------------------------------------------------------------
\6\ U.S. Department of Education, Office of Career, Technical and
Adult Education data; Civic Enterprises et al, Building a Grad Nation:
Progress and Challenge in Ending the High School Dropout Epidemic:
Annual Update, 2014.
\7\ Plank et al, Dropping Out of High School and the Place of
Career and Technical Education, National Research Center for CTE, 2005.
\8\ Lekes et al., CTE Pathway Programs, Academic Performance and
the Transition to College and Career, National Research Center for CTE,
2007.
\9\ U.S. Department of Education, National Center for Education
Statistics, Data Point: Career and Technical Education Coursetaking and
Postsecondary Enrollment and Attainment: High School Classes of 1992
and 2004, 2016.
---------------------------------------------------------------------------
CTE programs prepare students for careers in in-demand fields and
provide an affordable pathway to the middle class. Healthcare
occupations, many of which require an associate degree or industry
credential, are projected to grow 18 percent by 2026--adding more than
2 million new jobs.\10\ Half of all STEM occupations, which offer
students high-skilled, high-wage career opportunities, require less
than a bachelor's degree.\11\ Middle-skill jobs are a significant part
of the economy. Of the 55 million job openings that will be created by
2020, 30 percent will require some college or a 2-year associate
degree.\12\ Congruently, the demand for workforce credentials, and the
value of those credentials, continues to grow. The number of
individuals earning certificates or associate degrees in CTE fields
rose 71 percent from 2002 to 2012.\13\ Twenty-seven percent of young
workers with licenses and certificates earn more than those with a
bachelor's degree.\14\ Moreover, students can pursue these credentials
at community and technical colleges for a fraction of the cost of
tuition at other institutions: $3,520, on average for the 2016-2017
academic year.\15\
---------------------------------------------------------------------------
\10\ U.S. Department of Labor, Bureau of Labor Statistics,
Occupational Outlook Handbook, Healthcare Occupations.
\11\ Rothwell, The Hidden STEM Economy, Brookings Institution,
2013.
\12\ Carnevale et al., Recovery: Job Growth and Education
Requirements Through 2020, Georgetown University Center on Education
and the Workforce, 2013.
\13\ U.S. Department of Education, Office of Planning, Evaluation
and Policy Development, Policy and Program Studies Service, National
Assessment of Career and Technical Education: Final Report to Congress,
2014.
\14\ Georgetown University Center on Education and the Workforce,
Valuing Certificates, Presentation, 2009.
\15\ College Board, Average Published Undergraduate Charges by
Sector, 2016-17.
---------------------------------------------------------------------------
Highly skilled workers also deliver direct benefits to American
employers through enhanced productivity and innovation; however, the
increased demands on the workforce pipeline are a persistent barrier to
economic growth. Almost half of the energy workforce may need to be
replaced by 2024.\16\ A projected 3 million workers are needed to fill
infrastructure jobs in the next decade, including careers in
construction, transportation and telecommunications.\17\ Meanwhile,
more than 80 percent of manufacturers report that the skills gap will
impact their ability to meet customer demands.\18\ Perkins funding
ensures that educators can equip students with the skills they will
need for high-demand fields.
---------------------------------------------------------------------------
\16\ Center for Energy Workforce Development, Gaps in the Energy
Workforce Pipeline: 2015 CEWD Survey Results.
\17\ Kane and Tomer, Infrastructure Skills: Knowledge, Tools, and
Training to Increase Opportunity, Brookings Institution, 2016.
\18\ Deloitte and The Manufacturing Institute, The Skills Gap in
U.S. Manufacturing: 2015-2025 Outlook, 2015.
---------------------------------------------------------------------------
Despite CTE's impressive outcomes and a growing need for career
education and workforce training, the Federal investment in Perkins has
declined by 13 percent over the past decade--nearly $170 million less
in funding for CTE programs. Though the Trump Administration proposed
to cut CTE funding in its fiscal year 2018 budget request, Congress
approved a $75 million increase for the Perkins Basic State Grant
program in the recent omnibus appropriations bill. However, more needs
to be done to support our Nation's high schools, community colleges and
technical institutions.
Restoring Federal funding for CTE by increasing the Perkins Basic
State Grant to $1.3 billion in fiscal year 2019 could expand access to
high-quality CTE programs for students nationwide. Moreover, it will
strengthen the capacity of school districts and postsecondary
institutions to deliver academically rigorous CTE content, ensure
support for special populations, afford the latest technology and
equipment for the classroom, strengthen employer partnerships, provide
college and career counseling services, and deliver educator
professional development opportunities.
Recently, 38 Senators, including distinguished members of this
subcommittee, sent a letter in support of increased funding for
Perkins. We applaud their commitment to growing our investment in
Perkins, and we urge the subcommittee to make CTE a top priority in the
fiscal year 2019 Labor, Health and Human Services, Education, and
Related Agencies appropriations bill. Thank you for your thoughtful
consideration of our request. For more information, please contact
ACTE's Legislative and Regulatory Affairs Manager Mitch Coppes
([email protected]).

[This statement was submitted by Stephen DeWitt, Deputy Executive
Director, Association for Career and Technical Education.]
______

Prepared Statement of the Association for Professionals in Infection
Control and Epidemiology and the Society for Healthcare Epidemiology of
America
The Association for Professionals in Infection Control and
Epidemiology (APIC) and the Society for Healthcare Epidemiology of
America (SHEA) thank you for this opportunity to submit testimony on
Federal efforts to detect dangerous infectious diseases, protect the
American public from preventable healthcare-associated infections
(HAIs) and address the rapidly growing threat of antibiotic resistance
(AR). We ask that you support the following programs: within the
Centers for Disease Control and Prevention (CDC) National Center for
Emerging and Zoonotic Infectious Diseases: $427.9 million for Core
Infectious Diseases including $200 million for the Antibiotic
Resistance Solutions Initiative, $21 million for the National
Healthcare Safety Network (NHSN), and $30 million for the Advanced
Molecular Detection (AMD) Initiative. Additionally, we request $36
million for HAI research activity conducted by the Agency for
Healthcare Research and Quality (AHRQ) and $4.9 billion for the
National Institutes of Health (NIH)/National Institute of Allergy and
Infectious Diseases (NIAID).
HAIs are among the leading cause of preventable harm and death in
the United States. One in 25 patients will contract an HAI on any given
day, totaling approximately 722,000 infections and 75,000 deaths
annually. The CDC estimates that HAIs cost the healthcare system up to
$45 billion every year. An increasing number of these infections are
untreatable due to resistance to our current arsenal of antibiotics.
Without immediate intervention, minor infections may become life-
threatening and put our ability toperform routine medical procedures or
treat diseases at risk. The CDC conservatively estimates that over two
million illnesses and about 23,000 deaths are caused by AR infections.
According to a 2016 report from the Review on Antimicrobial Resistance,
if actions are not taken to combat AR, antibiotics could be rendered
ineffective resulting in the deaths of 10 million people annually
worldwide by the year 2050.
centers for disease control and prevention
SHEA and APIC request $427.9 million for Core Infectious Diseases
for fiscal year 2019, which includes funding for HAI prevention, AR
prevention, and the Emerging Infections Program (EIP). Through this
funding, the EIP can continue to work with state health departments and
their academic partners, with the goal of conducting a portfolio of
enhanced public health surveillance and applied research to detect,
prevent, and control emerging infectious diseases. Core activities of
the EIP Network include:
--Active Bacterial Core surveillance (ABCs): Active population-based
laboratory surveillance for invasive bacterial disease.
--FoodNet: Active population-based laboratory surveillance to monitor
the incidence of foodborne diseases.
--Influenza activities: Active population-based surveillance for
laboratory confirmed influenza-related hospitalizations.
--Healthcare Associated Infections-Community Interface (HAIC)
projects: Active population-based surveillance for HAIs.
We urge you to support $200 million for the Antibiotic Resistance
Solutions Initiative. The AR Solutions Initiative has distributed a
large portion of its funds to all 50 State health departments, six
large local health departments, and Puerto Rico. By working with State
and local health departments the AR Solutions Initiative is protecting
life-saving antibiotics and the future of medical innovation from the
threat of antibiotic resistance. The program also supports the
Antibiotic Resistance Lab Network, which provides the infrastructure
and lab capacity for seven regional labs to detect resistant organisms.
Through these labs, CDC is able identify unusual resistance germs,
which are resistant to all or most antibiotics. Lab tests uncovered
unusual resistance more than 200 times in 2017 in ``nightmare
bacteria'' alone. Early and aggressive action, when even a single case
is found, can keep germs with unusual resistance from spreading in
healthcare facilities and causing hard-to-treat or even untreatable
infections.
We urge you to support $21 million for CDC's National Healthcare
Safety Network (NHSN). This request supports HAI prevention and
reporting efforts in healthcare facilities across the continuum of
care. These funds will enable CDC to continue to provide data for
national HAI elimination, support assessment of antibiotic prescribing,
and enhance prevention efforts by identifying healthcare facilities for
improvement. This support will also provide NHSN infrastructure and
critical user support, and provide innovative HAI prevention
approaches. NHSN is the vehicle CDC uses to track central line-
associated bloodstream infections (CLABSI), catheter-associated urinary
tract infections (CAUTI), surgical site infections (SSI), methicillin-
resistant Staphylococcus aureus (MRSA), and Clostridium difficile
infections reported by more than 22,000 healthcare facilities.
We urge your continued support of $30 million for the Advanced
Molecular Detection (AMD) Initiative in bioinformatics and genomics,
which allows CDC to more quickly determine where emerging diseases come
from, whether microbes are resistant, and how microbes are moving
through a population. This initiative is critical because it
strengthens CDC's epidemiologic and laboratory expertise to effectively
guide public health action.
agency for healthcare research and quality
We request your support of $36 million for AHRQ's HAI research
activity. This funding supports projects to advance the science of HAI
prevention, develop more effective approaches for reducing HAIs, and
help clinicians apply proven methods to prevent HAIs on the front lines
of care. The projects funded by AHRQ's HAI Program accelerate the
implementation of evidence-based methods to reduce HAIs in acute care
hospitals as well as ambulatory and long-term care settings. Distinct
from the research funded through NIH, AHRQ funds critical research
focused on improving the safety and quality of the U.S. healthcare
system.
national institutes of health/national institute of allergy and
infectious disease
SHEA and APIC support $4.9 billion for the National Institute of
Allergy and Infectious Diseases (NIAID) within NIH. NIAID plays a key
role in advancing research to understand how microbes develop
resistance and studies to identify novel ways to combat them;
translation of laboratory findings into potential treatments, vaccines,
and new diagnostic tests; clinical validation of diagnostic tests; and
clinical trials to evaluate vaccines and new and existing therapies
against drug-resistant microbes.
We thank you for the opportunity to submit testimony and greatly
appreciate your leadership in the effort to eliminate preventable HAIs,
combat antibiotic resistance and improve patient safety and outcomes.
About APIC: APIC's mission is dedicated to creating a safer world
through prevention of infection. The association's more than 15,000
members direct and maintain infection prevention programs that prevent
suffering, save lives and contribute to cost savings for hospitals and
other healthcare facilities. APIC advances its mission through patient
safety, implementation science, competencies and certification,
advocacy, and data standardization. Visit APIC online at www.apic.org.
Follow APIC on Twitter: http://twitter.com/apic and Facebook:
www.facebook.com/APICInfectionPreventionandYou. For information on what
patients and families can do, visit APIC's Infection Prevention and You
website at www.apic.org/infectionpreventionandyou.
About SHEA: SHEA is a professional society representing more than
2,000 physicians and other healthcare professionals globally that have
expertise in and passion for healthcare epidemiology, infection
prevention, and antibiotic stewardship. SHEA's mission is to prevent
and control healthcare-associated infections and advance the field of
healthcare epidemiology and promote strong antibiotic stewardship
programs. The society promotes science and research, develops expert
guidelines and guidance for healthcare workers, provides high-quality
education, encourages transparency in public reporting related to HAIs,
works to ensure a safe healthcare environment, and facilitates the
exchange of knowledge in all healthcare settings. SHEA upholds the
value and critical contributions of healthcare epidemiology to
improving patient care and healthcare worker safety. Visit SHEA online
at www.shea-online.org, www.facebook.com/SHEApreventingHAIs and
@SHEA_Epi.
______

Prepared Statement of the Association for Psychological Science
aps recommendations for fiscal year 2019 appropriations
--As a member of the Ad Hoc Group for Medical Research, APS
recommends at least $39.3 billion for the NIH in fiscal year
2019. This would be a $2 billion increase in base funding to be
spread across all Institutes and Centers, in addition to the
$215 million increase scheduled through the 21st Century Cures
Act's Innovation Account, for a total $2.215 billion increase.
--APS asks the Committee to continue to engage with NIH regarding
NIH's proposed re-definition of clinical trials to include
basic research. The Committee included very direct report
language in the fiscal year 2018 Omnibus directing NIH to
``delay enforcement of the new policy--including NIH' s more
expansive interpretation of `interventions'- in relation to
fundamental research projects involving humans.'' However, NIH
is choosing to ignore the intent of the Committee, and is
continuing to move forward with a new policy that will
reclassify a significant amount of basic research as a clinical
trials and will subject this research to the added regulations
and cost of clinical trials.
--APS asks the Committee to encourage the National Institute of
Mental Health to diversify its research portfolio to establish
a better balance between neuroscience and basic and applied
behavioral research, to increase the development of more
effective treatments for reducing the urgent public health and
economic burdens resulting from the prevalence of these
conditions. .
--APS urges the Committee to monitor that NIH is complying with
Federal statute (Title 42 of the U.S. Code, Subchapter III;
Part B, Subsection 284A) that all NIH Directors Advisory
Councils have at least two representatives from the fields of
public health and the behavioral or social sciences.
--Behavior is involved in the development, treatment or prevention of
virtually every public health issue facing this Nation,
including opioid addiction, heart disease, cancer, diabetes,
mental illness, AIDS, violence, traumatic brain injury, and
alcoholism. APS asks Congress to support a stronger basic,
applied and clinical behavioral science research and training
enterprise at NIH in recognition of the central role of
behavior in health.
--APS also joins the Friends of HRSA in urging fiscal year 2019 $8.5
billion for discretionary Health Resources and Services
Administration programs and specifically recommends that the
eligibility requirements for the Behavioral Health Workforce
and Training Program and the Graduate Psychology program be
updated to reflect the changes made in accreditation by 35 of
the Nations' preeminent clinical psychology programs.
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to provide testimony as you consider funding priorities for
fiscal year 2019. I am Sarah Brookhart, Executive Director of the
Association for Psychological Science (APS).
APS is a nonprofit organization dedicated to the advancement of
scientific psychology nationally and internationally. APS's 33,000
members are scientists and educators at the Nation's universities and
colleges, conducting NIH-supported basic, applied and clinical
research. They look at such things as: the connections between emotion,
stress, and biology and the impact of stress on health; they look at
how children grow, learn, and develop; they use brain imaging to
explore thinking and memory and other aspects of cognition; they
develop ways to manage debilitating chronic conditions such as diabetes
and arthritis as well as depression and other mental disorders; they
look at how genes and the environment influence behavioral traits such
as aggression and anxiety; and they address the behavioral aspects of
smoking and substance abuse.
Mr. Chairman, APS joins the Ad Hoc Group for Medical Research
Funding, a coalition of 300 patient and voluntary health groups,
medical and scientific societies, academic research organizations and
industry, in recommending $39.3 billion for the National Institutes of
Health, an increase of $2.215 billion. While APS recognizes there are
demands on our Nation's resources, we believe the ever-increasing
health threats and expanding scientific opportunities continue to
justify increased funding for NIH. APS further urges that the increase
be distributed across all the Institutes and Centers.
In addition, there are a number of policy issues at NIH that we
encourage the Committee to address through report language.
recognizing the leadership of the subcommittee
Mr. Chairman, APS recognizes and appreciates your leadership and
the leadership of this Subcommittee in supporting public health
research. We applaud the Committee's commitment to improving health
through science and to allocating increased funding to these programs
during periods of fiscal austerity so that the pace of scientific
discovery needed to address the Nation's health needs remain vital. We
are particularly grateful for your leadership in securing a $3 billion
increase for the NIH in fiscal year 2018. While over half of those
funds are set aside for specific projects, we appreciate your vision in
ensuring that every Institute and Center has growth above fiscal year
2017 levels. This will help expand the agency's capacity to make
progress across the full spectrum of scientific opportunity and
increase funding available for investigator initiated scientific
research. We do, however, share the concern of many groups that the
increasing trend to earmark NIH funding is troublesome.
funding for the national institutes of health and policy issues
As previously noted, APS recommends an fiscal year 2019 funding
level of $39.3 billion for the NIH, which would enable real growth over
health research inflation as an important step to ensuring stability in
the Nation's research capacity over the long term. Securing a reliable,
robust budget trajectory for NIH will be important in positioning the
agency--and the public which relies on it--to capitalize on the full
range of health research being conducted in the biomedical, behavioral,
social, and population-based sciences. The Administration's request of
$35.517 billion in fiscal year 2019, translating to approximately a $2
billion cut, is reckless and short sighted. Cuts to NIH would affect
every American, including patients, their families, researchers, and
communities where NIH investment spurs economic growth. APS, and the
entire health research community, is in fierce opposition to the
Administration's proposal.
In addition to funding priorities, APS is concerned about several
policy issues at the NIH.
1. Clinical Trials Definition.--We were incredibly pleased and
appreciative when the Committee included language in the fiscal year
2018 Omnibus directing NIH to delay enforcement of the new clinical
trials policy published in September 2016, except for research projects
that would have been considered clinical trials under the prior policy,
until NIH can consult with the basic research community. This language
followed NIH's receipt of over 3,500 comments in opposition to their
new clinical trials policy change as it has the unintended consequence
of reclassifying a significant amount of basic research as a clinical
trials and subjecting this research to the added regulations of
clinical trials. However, we are continuing to receive word that the
NIH is choosing to ignore the Committee's directive, and is moving
forward with implementation of this new policy. Specifically, they are
continuing to require that certain basic research be subject to all the
requirements of clinical trials completions and regulations-the very
provision that increases regulatory burden and cost to universities. We
urge the Committee to continue to impress upon NIH the need to consult
with the basic research community to determine the reporting standards
best suited to this kind of research prior to moving forward with the
new policy.
2. Behavioral Science at NIH.--APS continues to be concerned about
the inadequate recognition at NIH of the role of behavior in health, as
reflected in the absence of behavioral science among the priorities at
many institutes. Specifically, we share the concern expressed by the
National Institute of Mental Health (NIMH) National Advisory Mental
Health Council that over the past decade the NIMH research portfolio
has increasingly become focused on basic and molecular neuroscience
research at the expense of research focused on finding ways to ease the
burden of those currently suffering from devastating mental conditions.
In fact, in January 2018, the NIMH Director noted that over the last 10
years, this policy shift has resulted in a 50 percent decline in
applications for applied and translational science. This decline
illustrates the signal NIMH has sent to the research community that
basic science grants are the priority over applied science. APS
believes that the individual, social, and economic burdens of mental
illness will not begin to be alleviated until there is a more
comprehensive research approach. The NIMH mission to support research
and training to reduce the public health burden of mental illness has
never been more urgent; it is imperative that the Institute employ the
full range of scientific resources that are available in pursuit of its
mission. Therefore, APS urges the Committee to include the following
language instructing the NIMH to diversify its research portfolio to
better balance between neuroscience and basic and applied behavioral
research to increase the development of more effective treatments for
people who need them now:

Improving the Treatment of Mental Illness.--The Committee is
pleased that at the January 2018 National Advisory Mental
Health Council Meeting the NIMH Director noted the strong
Congressional interest in funding more applied and
translational research in order to have a positive impact on
helping people with mental illness in the near term. The
Committee continues to be concerned that over the past decade
the NIMH research portfolio has increasingly become focused on
basic neuroscience research at the expense of a more balanced
portfolio that would also fund behavioral and psychosocial
research focused on finding ways to meet the public health
mission to ease the burden of those affected today. This NIMH
policy shift has led to a 50 percent decline in applied and
translational applications in this 10 year period as NIMH has
signaled to the research community a prioritization of basic
science over applied science. The Committee urges NIMH to take
steps to diversify its research portfolio to better balance
between neuroscience and basic behavioral and psychosocial
research and requests a report from NIMH within 90 days of
enactment of this bill into law on NIMH plans to rebalance the
portfolio to increase the funding of short and medium term
scientific investments.
3. NIH Advisory Committees.--Congress recognized the important role
that behavioral and social science plays in addressing the Nation's
health needs by including a requirement in Section 284 of Title 42,
Subchapter III of the U.S. Code that membership of each NIH Advisory
Committee should include ``not less than two individuals who are
leaders in the fields of public health and the behavioral or social
sciences'' relevant to the activities of the national research
institute for which the advisory council is established. While there
are some Institutes, such as the National Institute of Mental Health,
that work diligently to adhere to this Federal requirement, other
institutes are not in compliance. Therefore, APS requests the following
language be included in the fiscal year 2019 Labor-HHS report to
address this issue:

Advisory Committees.--The Committee is aware of concerns that
despite the legal requirement of Federal statute (Title 42 of
the U.S. Code, Subchapter III; Part B, Subsection 284A) that
all NIH Directors' Advisory Councils have at least two
representatives from the fields of public health and the
behavioral or social sciences, there are Directors' Advisory
Councils that are not adhering to this requirement. The
Committee urges compliance with this statute and requests a
report on compliance including a list of each Advisory
Council's behavioral, social sciences and public health
members.
hrsa's bureau of health workfoce
Mr. Chairman, APS joins the Friends of HRSA in urging fiscal year
2019 $8.5 billion for discretionary Health Resources and Services
Administration programs and specifically recommends that the
eligibility requirements for the Behavioral Health Workforce and
Training Program and the Graduate Psychology program be updated to
reflect the changes made in accreditation by 35of the Nations'
preeminent clinical psychology programs. The eligibility requirements
of these two programs require that applicants must be accredited by
accrediting organizations recognized by the Department of Education.
This fails to recognize the well-established and respected Council for
Higher Education Accreditation (CHEA) which has 3,000 university
members and accredits over 60 different accrediting bodies. In
September 2012 CHEA recognized the Psychological Clinical Science
Accreditation System (PCSAS) which has since that date has accredited
35 clinical psychological doctoral programs which are all recognized to
be among the 50 top schools of clinical psychology in the country. In
order to insure that HRSA's health workforce programs continue to have
access to the best qualified applicants, including those who graduate
from PCSAS programs, the Committee needs to add the necessary language
to update the HRSA program eligibility requirements, as follows:
``Provided further, eligibility for workforce programs is limited to
schools or programs accredited by a recognized body or bodies approved
for such purposes by the Secretary of Education or the Council of
Higher Education Accreditation.''
summary and conclusion
Mr. Chairman, again we wish to thank the Subcommittee for its past
leadership. Significant progress has been made in meeting the many
public health concerns facing this Nation, due to your efforts. Mr.
Chairman, if this country is to continue to see advances in improving
the health and well-being of our Nation, adequate funding for the
public health service is paramount. Within that, we believe that
reducing barriers to research and training in behavioral science is
warranted by the central role of behavior in many of our most pressing
health problems and by the enormous potential of psychological science
and other behavioral disciplines to reduce the suffering experienced by
the millions of people who are suffering with behavior-based
conditions. APS shares your commitment to addressing the health needs
of the Nation and appreciates the opportunity to provide this
testimony.

[This statement was submitted by Sarah Brookhart, Executive
Director,
Association for Psychological Science.]
______

Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges (AAMC) is a not-for-
profit association dedicated to transforming healthcare through
innovative medical education, cutting-edge patient care, and
groundbreaking medical research. Its members comprise all 151
accredited U.S. and 17 accredited Canadian medical schools; nearly 400
major teaching hospitals and health systems, including 51 Department of
Veterans Affairs medical centers; and more than 80 academic societies.
Through these institutions and organizations, the AAMC serves the
leaders of America's medical schools and teaching hospitals and their
173,000 faculty members, 89,000 medical students, 129,000 resident
physicians, and more than 60,000 graduate students and postdoctoral
trainees in the biomedical sciences.
The AAMC is exceptionally grateful for the investment in key
programs in the fiscal year 2018 Consolidated Appropriations Act. In
fiscal year 2019, the AAMC requests the following for Federal
priorities essential in assisting medical schools and teaching
hospitals to fulfill their missions of education, research, and patient
care: at least $39.3 billion for the National Institutes of Health
(NIH), including funds provided through the 21st Century Cures Act for
targeted initiatives; $454 million in budget authority for the Agency
for Healthcare Research and Quality (AHRQ); $690 million for the Title
VII health professions and Title VIII nursing workforce development
programs; $330 million for the Children's Hospitals Graduate Medical
Education (CHGME) program, at the Health Resources and Services
Administration (HRSA)'s Bureau of Health Workforce; and continued
support for student aid through the Department of Education. The AAMC
appreciates the Subcommittee's longstanding, bipartisan efforts to
strengthen these programs.
National Institutes of Health. Congress's longstanding bipartisan
support for medical research through the NIH has contributed greatly to
improving the health and well-being of all Americans. 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. At least
half of the life-saving research supported by the NIH takes place at
America's medical schools and teaching hospitals nationwide, where
scientists, clinicians, fellows, residents, medical students, and
trainees work side-by-side to improve the lives of Americans through
research. This partnership is a unique and highly-productive
relationship, one that lays the foundation for improved health and
quality of life and strengthens the Nation's long-term economy.
The AAMC thanks Congress for the bipartisan support that resulted
in the inclusion of $37.1 billion in the fiscal year 2018 omnibus
spending bill for medical research conducted and supported by the NIH,
which builds off substantial increases for NIH in fiscal year 2016 and
2017. Additionally, the AAMC thanks the Subcommittee for recognizing
the importance of continuing Federal support for facilities and
administrative expenses, and retaining the salary cap at Executive
Level II of the Federal pay scale.
In fiscal year 2019, the AAMC supports the Ad Hoc Group for Medical
Research recommendation that Congress provide at least $39.3 billion
for NIH, including funds provided through the 21st Century Cures Act
for targeted initiatives. This funding level would continue the
momentum of recent years by enabling meaningful base budget growth over
biomedical inflation to help ensure stability in the Nation's research
capacity over the long term. Securing a reliable, robust budget
trajectory for NIH is key in positioning the agency--and the patients
who rely on it--to capitalize on the full range of research in the
biomedical, behavioral, social, and population-based sciences.
Scientific discoveries rely on support from Congress. We must
continue the current trajectory if we are to strengthen our Nation's
research capacity, ensure a biomedical research workforce that reflects
the racial and gender diversity of our citizenry, and inspire a passion
for science in current and future generations of researchers.
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 greatly appreciates the renewed investment in AHRQ in
fiscal year 2018 and joins the Friends of AHRQ in recommending $454
million in budget authority for AHRQ in fiscal year 2019.
As the only Federal agency with the sole purpose of generating
evidence to make healthcare safer; higher quality; and more accessible,
equitable, and affordable, AHRQ also works to ensure such evidence is
available across the continuum of healthcare stakeholders, from
patients to payers to providers. Working with NIH, the Patient Centered
Outcomes Research Institute (PCORI), and other Federal agencies, AHRQ's
work 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 workforce development programs are the only Federal
programs designed to improve the supply, distribution, and diversity of
the Nation's primary care workforce. Through loans and scholarships to
students, and grants and contracts to academic institutions and non-
profit organizations, the Title VII and Title VIII programs fill the
gaps in the supply of health professionals not met by traditional
market forces.
Titles VII and VIII are structured to allow grantees to test
educational innovations, respond to changing delivery systems and
models of care, and address timely topics in their communities. By
assessing the needs of the communities they serve and emphasizing
interprofessional education and training, Title VII and VIII programs
bring together knowledge and skills across disciplines to provide
effective, efficient and coordinated care. Further, studies demonstrate
that the programs graduate more minority and disadvantaged students and
prepare providers that are more likely to serve in Community Health
Centers (CHC) and the National Health Service Corps (NHSC).
In addition to promoting educational innovations and preparing the
workforce for changing delivery systems, the programs also support
faculty development, curriculum development, and continuing education
opportunities. These are all important components to ensure faculty and
providers are equipped to meet the Nation's changing needs and train
the next generation of health professionals.
The AAMC is grateful for the enhanced investment in Title VII and
Title VIII in fiscal year 2018 and joins the Health Professions and
Nursing Education Coalition (HPNEC) in recommending $690 million for
these important workforce programs in fiscal year 2019. This funding
level is necessary to ensure continuation of all existing Title VII and
Title VIII programs while also supporting promising new initiatives.
The full spectrum of Title VII programs, including the Area Health
Education Centers (AHEC) program and the Health Careers Opportunity
Program (HCOP), is essential to prepare our next generation of medical
professionals to adapt to the changing healthcare needs of the Nation's
aging and increasingly diverse population. As an example of their
impact, in academic year 2015-2016, AHECs trained more than 38,000
health professions students across the country, including in community-
based and ambulatory care settings and CHCs. Further, research shows
that HCOP has helped students from disadvantaged and underrepresented
backgrounds throughout the educational pipeline achieve higher grade
point averages and matriculate into health professions programs--
critical to improving the cultural competency of our health workforce
and promoting health equity nationwide.
In addition to funding for Title VII and Title VIII, HRSA's Bureau
of Health Workforce also supports the Teaching Health Center Graduate
Medical Education (THCGME) and Children's Hospitals Graduate Medical
Education (CHGME) program. We appreciate the mandatory appropriations
provided under the Bipartisan Budget Act of 2018 for THCGME in fiscal
year 2018 and fiscal year 2019 to support new and expanded primary
medical residency programs in community-based ambulatory patient care
settings. The CHGME program provides critical Federal graduate medical
education support for children's hospitals to prepare the future
primary care and specialty care workforce for our Nation's children. We
strongly support full funding for the CHGME program at $330 million in
fiscal year 2019.
Student Aid and the National Health Service Corps (NHSC). The AAMC
urges the Subcommittee to sustain student loan and forgiveness programs
for graduate and professional students at the Department of Education.
The average graduating debt of medical students is currently $192,000,
and total repayment can range from $348,000 to $418,000.
The AAMC appreciates the funding provided under the Bipartisan
Budget Act of 2018 for NHSC, and supports full funding for the program
in fiscal year 2019. As the Nation faces multiple health professional
shortages, sustained investments in workforce programs are necessary to
help care for our Nation's most vulnerable populations. Recognizing
that mandatory funding may be provided through other mechanisms, the
appropriations committees retain primary responsibility for funding the
administrative functions of the NHSC and for avoiding budgetary lapses
in future years. We look forward to working with Congress to help
ensure a long-term investment in the NHSC without sacrificing other
Federal health professions training support.
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 2019 spending bill.
______

Prepared Statement of the Association of Farmworker
Opportunity Programs
Dear Chairman Roy Blunt and Ranking Minority Member Patty Murray:
Thank you for the opportunity to present to you and your
subcommittee the testimony of the Association of Farmworker Opportunity
Programs (AFOP) in support of the Nation's more than 50-year commitment
to providing eligible agricultural workers the opportunity to achieve
the American Dream for themselves and their families. As you begin work
on your fiscal year 2019 Labor-Health and Human Services-Education
appropriations bill, AFOP encourages you to build on the solid
foundation laid by the highly successful programs described below by
fully funding their authorized amounts in the coming fiscal year. Not
only do these programs maximize the Federal Government's investment in
them, they also generate for employers the qualified and healthy
workers essential to their growth. These programs also dramatically
change peoples' lives for the better, often in deeply rural areas,
allowing them to enjoy economic success and participate more fully in
our great Nation. Thank you for supporting these very effective
programs and the excellent results they bring for the most vulnerable
in our society.
national farmworker jobs program
The National Farmworker Jobs Program (NFJP) is the bedrock of the
Nation's commitment to helping agricultural workers upgrade their
skills in and outside agriculture, providing employers with what they
increasingly say they need: hardworking, committed, well-trained,
skilled workers. Administered by the United States Department of Labor
(DOL), NFJP provides funding through a competitive grant process to 52
community-based organizations and public agencies nationwide that
assist workers and their families attain greater economic stability.
One of DOL's most successful employment training programs, NFJP helps
agricultural workers acquire the new skills they need to start careers
that offer higher wages and a more stable employment outlook. In
addition to employment and training services, the program provides
supportive services that help agricultural workers retain and stabilize
their current agriculture jobs, as well as enable them to participate
in training and enter new careers. NFJP housing assistance helps to
meet a critical need for the availability and quality of agricultural
worker housing, and supports better economic outcomes for workers and
their families. NFJP also facilitates the coordination of services
through the American Job Center network for agricultural workers so
they may access other services of the public workforce system.
The agricultural workers who come to NFJP seek the training they
need to secure and excel in the in-demand jobs employers say they find
challenging to fill. In doing so, the workers establish the financial
foundation that allows them and their families to escape the chronic
unemployment and underemployment they face each year. Many NFJP
participants enter construction, welding, healthcare, and commercial
truck-driving. Others train for work in the solar/wind energy sector,
culinary arts, and for positions such as machinists, electrical
linemen, and a variety of careers in and outside of agriculture. To be
eligible for NFJP, these workers must be low-income, depend primarily
on agricultural employment, and provide proof of American citizenship
or verification they are authorized to work in the United States.
Additionally, male applicants must have registered for the Military
Selective Service.
Agricultural workers are some of the hardest working individuals
you will find in this country, enduring tremendous physical and
financial hardships in providing the fruits, vegetables, and other
foods Americans eat every day. Yet, agricultural workers remain among
the Nation's most vulnerable employees and job seekers, facing
significant barriers to work advancement, including:
--The average agricultural worker family of four earns just $17,500
per year, well below the national poverty line.
--English-language fluency is a substantial challenge for many.
--More than half the children of migratory agricultural workers drop
out of school, and, among all agricultural workers, the median
highest grade completed is 8th grade, according to the National
Agricultural Workers Survey.
--Due to poverty and their rural locations, most agricultural workers
have extremely limited access to transportation.
Despite these barriers, NFJP continues to be one of the most
successful Federal job training programs, exceeding all of the major
goals established by DOL. In 2012 alone, NFJP service organizations
provided more than 21,000 agricultural workers with services, according
to DOL. Extrapolating, these NFJP providers have served more than
200,000 agricultural workers and their family members over the last 10
years. Funding this year at the program's full authorized amount would
allow NFJP to have a greater impact training dependable, capable
workers to take on the Nation's most challenging jobs, such as the vast
number of skilled workers a new robust infrastructure rebuilding plan
would generate. Also, consistent appropriations for youth agricultural
workers (ages 14- to 24-years) will allow this cohort so often
overlooked and ignored by anti-poverty programs to stay in school, and,
if not in school, to avail themselves of crucial training to get a good
job, like infrastructure construction, and to establish themselves as
productive and successful members of society.
agricultural worker health & safety
AFOP also recommends continued appropriations for the DOL
Occupational Safety and Health Administration Susan B. Harwood grant
program, through which AFOP has augmented pesticide-safety training
with curricula to help workers recognize and avoid the dangers of heat
stress so common in the fields, and to understand how to be safe around
farm tractors. In supporting this funding, you can arm the Nation's
agricultural workers with the knowledge they need to keep themselves
safe on the job. The NFJP network of some 210 trainers in 23 States
trains agricultural workers on how to protect against pesticide
poisoning and farm work injuries. Trainers then follow up with
agricultural workers to assess knowledge gained and retained, and
changes in labor practice. Since 1995, more than 400,000 agricultural
workers have become certified as trained in safety precautions, and
hundreds of thousands of family members, children, and community
agencies have also received safety training. The network collaborates
with universities, community organizations, local governments, and
businesses to maximize its unparalleled access to agricultural workers
and their families. By reaching agricultural workers with pesticide
safety, heat stress prevention, and/or tractor safety training, the
network's trainers offer access to other services and create a ripple
effect of positive impact--improving the quality of life for
agricultural workers and their families--which is what NFJP
organizations do best.
Again, thank you for your continuing strong support of these worthy
programs. AFOP stands ready to assist you in any way as you proceed
with your very important work.
______

Prepared Statement of the Association of Independent Research
Institutes
The Association of Independent Research Institutes (AIRI) thanks
the Subcommittee for its long-standing and bipartisan leadership in
support of the National Institutes of Health (NIH). We continue to
believe that science and innovation are essential if we are to improve
our Nation's health, sustain our leadership in medical research, and
remain competitive in today's global information and innovation-based
economy. AIRI urges the Subcommittee to provide NIH with $39.3 billion
in fiscal year 2019, in addition to funds included in the 21st Century
Cures Act for targeted initiatives. AIRI also urges the Subcommittee to
push back against the harmful salary support and salary cap policies
proposed in the President's fiscal year 2019 budget request.
First, we would like to deeply thank the Subcommittee for providing
an increase of $3 billion for NIH in fiscal year 2018. The
Subcommittee's support of NIH is strongly demonstrated by these much-
needed funds for life-saving biomedical research. However, there is
still much more to do. NIH is tackling vast, interdisciplinary problems
such as the opioid crisis, the development of a universal flu vaccine,
and the widespread problem of obesity, but the last several years of
budget uncertainty has made it difficult for the agency to predictably
fund new and ongoing grants and consider new initiatives necessary to
improving human health. To ensure cutting-edge research at independent
research institutes is not disrupted, AIRI strongly supports enactment
of a final fiscal year 2019 spending bill with $39.3 billion for NIH.
AIRI is a national organization of more than 90 independent, non-
profit research institutes that perform basic and clinical research in
the biological and behavioral sciences. AIRI institutes vary in size,
with budgets ranging from a few million to hundreds of millions of
dollars. In addition, each AIRI member institution is governed by its
own independent Board of Directors, which allows our members to focus
on discovery-based research while remaining structurally nimble and
capable of adjusting their research programs to emerging areas of
inquiry. Researchers at independent research institutes consistently
exceed the success rates of the overall NIH grantee pool, and they
receive about 10 percent of NIH's peer-reviewed, competitively-awarded
extramural grants.
The partnership between NIH and America's scientists, research
institutions, universities, and medical schools is unique and highly-
productive, 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 that deliver more treatments and cures to patients. Not
only is NIH research essential to advancing health, it also plays a key
economic role in communities nationwide.
In fiscal year 2017, NIH invested $26.1 billion, or over 75 percent
of its budget, in the biomedical research community. This investment
supported more than 400,000 research positions and generated nearly $69
billion in economic activity across the U.S. AIRI member institutes are
particularly relevant in this regard, as they are located across the
country, including in many smaller or less-populated States that do not
have major academic research institutions. In many of these regions,
independent research institutes are major employers and local economic
engines, and they exemplify the positive impact of investing in
research and science.
The NIH model for conducting biomedical research, which involves
supporting scientists at universities, medical centers, and independent
research institutes, provides an effective approach to making
fundamental discoveries in the laboratory that can be translated into
medical advances that save lives. AIRI member institutions are private,
stand-alone research centers that set their sights on the vast
frontiers of medical science. However, AIRI member institutes are
especially vulnerable to reductions in the NIH budget, as they do not
have other reliable sources of revenue to make up the shortfall.
In addition, AIRI member institutes oppose the harmful proposals in
the President's fiscal year 2019 budget request to reduce the salary
caps for extramural researchers and cap the amount of salary payable on
a grant. These policies would disproportionately affect early-career
investigators and independent research institutes. They hinder AIRI
members' research missions and their ability to recruit and retain
talented researchers. The caps also damage the confidence of future
researchers in the viability of a career in biomedical sciences,
severely harming the competitiveness and capacity of the U.S.
biomedical enterprise. The continued success of the biomedical research
enterprise relies heavily on the imagination and dedication of a
diverse and talented scientific workforce. NIH initiatives focusing on
career development and recruitment of a diverse scientific workforce
are vital to innovation in biomedical research and public health.
However, one of the most destructive and long-lasting impacts of the
NIH budget's instability is on the next generation of scientists, who
have seen training funds slashed and the possibility of sustaining a
career in research diminished.
The Federal Government has an irreplaceable role in supporting
investigators and medical research. No other public, corporate, or
charitable entity is willing or able to provide the broad and sustained
funding for the cutting-edge research necessary to yield new
innovations and technologies of the future. NIH supports long-term
competitiveness for American workers, forming one of the key
foundations for U.S. industries like biotechnology, medical devices,
and pharmaceutical development, among others. Unfortunately, continued
erosion of the national commitment to medical research could threaten
our ability to support a medical research enterprise that can take full
advantage of existing and emerging scientific opportunities.
The U.S. has the most robust medical research capacity in the
world, but our leadership in biomedical research is being compromised
by the investments being made in the research capacity of other
nations, such as China. While the most recent $3 billion increase to
the NIH budget will greatly help sustain biomedical research in the
U.S., it is important to continue providing stable funding to uphold
our biomedical excellence.
AIRI member institutes' flexibility and research-only missions
provide an environment particularly conducive to creativity and
innovation. Independent research institutes possess a unique
versatility and culture that encourages them to share expertise,
information, and equipment across research institutions, as well as
neighboring universities. These collaborative activities help minimize
bureaucracy and increase efficiency, allowing for fruitful partnerships
in a variety of disciplines and industries. Also, unlike institutes of
higher education, AIRI member institutes focus primarily on scientific
inquiry and discovery, allowing them to respond quickly to the research
needs of the country.
AIRI thanks the Subcommittee for its important work dedicated to
ensuring the health of the Nation, and we appreciate this opportunity
to urge the Subcommittee to provide $39.3 billion for NIH in fiscal
year 2019, in addition to funds included in the 21st Century Cures Act
for targeted initiatives. Additionally, we urge the Subcommittee to
push back against the President's proposal to cap investigator salaries
and limit the amount of salary payable from a grant.
______

Prepared Statement of the Association of Maternal & Child Health
Programs
Chairman Blunt, Ranking Member Murray and distinguished
Subcommittee Members--My name is Susan Chacon and I am grateful for
this opportunity to provide written testimony on behalf of the
Association of Maternal & Child Health Programs (AMCHP), our members,
and the millions of women, children, children with special healthcare
needs, and families that are served by the Title V Maternal and Child
Health (MCH) Services Block Grant administered by the Maternal and
Child Health Bureau within the Health Resources and Services
Administration. I am currently serving as President of the Board of
Directors of AMCHP and am also the Title V Children and Youth with
Special Health Care Needs Director in New Mexico. I am asking the
Subcommittee to support an increase of $8.3 million in funding for the
Title V MCH Services Block Grant, for a total of $660 million in fiscal
year 2019.
I would like to begin by expressing our sincere gratitude for the
increase provided to the Title V Block Grant in the fiscal year 2018
omnibus and for recognizing the role that Title V grantees play in
improving the health of women, children, children with special
healthcare needs, and their families. As you may know, the Title V MCH
Block Grant is driven by evidence, flexibility, and results to (1)
ensure access to quality maternal and child health services, (2) reduce
infant mortality and preventable diseases and conditions, and 3)
provide and promote family-centered, community-based, coordinated care
for children with special healthcare needs and facilitate the
development of community-based systems of services for such children
and their families.
I know that you and your colleagues understand that the current
level of funding does not allow us to address all the health needs of
our Nation's women, children, fathers, and families. We are certainly
proud of recent progress in lowering our Nation's infant mortality
rate, reducing teen pregnancy, and decreasing the incidence of
childhood injury. However, we are currently faced with many other
maternal and child health challenges that require a sustained
investment in public health approaches. The flexibility of the Title V
MCH Block Grant allows States and jurisdictions to design and implement
a wide range of maternal and child health programs that respond to
locally-defined needs. In addition to formula funding to States,
Special Projects of Regional and National Significant, or ``SPRANS,''
funding complements and helps ensure the success of State Title V by
driving innovation, promoting evidence-based programming, and training
young professionals interested in maternal and child health.
As you well know, our country is steeped in an opioid epidemic with
implications for every sector of the population, including for newborns
of mothers addicted to opioids. In some counties in West Virginia, for
example, over 10 percent of newborn babies in 2017 were diagnosed with
Neonatal Abstinence Syndrome (NAS); that number has grown to as much as
14 percent already this year. The Title V Block Grant is playing an
important role to address the maternal and child health aspect of the
crisis. In Tennessee, the Title V program is leading several efforts to
address Neonatal Abstinence Syndrome, such as conducting public health
surveillance for NAS, utilizing local health educators to partner with
correctional institutions to provide health prevention education on NAS
for female inmates, and implementing a pilot project in East Tennessee
to provide support for women in recovery to prevent recurrent NAS. The
Massachusetts Title V program played a role in developing an
interactive web-based resource for pregnant and postpartum women in
treatment or recovery for substance use disorders, or with substance
use issues or concerns, as well as a webinar series for obstetric
providers caring for women with opioid use disorders.
Another issue that has gained a lot of attention recently is the
rising maternal mortality rate in the United States. Once again, the
Title V Block Grant is playing a critical role to assess and address
the causes of this trend as well as efforts to reverse it. Through
SPRANS, the Maternal and Child Health Bureau is implementing the
Alliance for Innovation on Maternal Health or ``AIM.'' Working through
State teams and health systems, this project is aligning national-,
state-, and hospital-level quality improvement efforts to improve
maternal health outcomes. Just recently, the Michigan Department of
Health and Human Services announced that participation in the AIM
effort is showing early signs of reducing pregnancy complications.
Since participating in the AIM project, complications during labor and
delivery among women who experience hemorrhage have decreased 17.9
percent. In Oklahoma, Title V funds are also being used to facilitate
the State's Maternal Mortality Review. As you likely know, maternal
mortality review committees are the gold standard for understanding why
women die during pregnancy, childbirth, and the first year postpartum.
An important element to keep in mind as we confront the opioid
epidemic and maternal mortality is that tackling these challenges
requires us to look further upstream, to invest in prevention. When it
comes to improving maternal and child health outcomes, we know a lot
about low-tech ways to conduct prevention and improve health outcomes
throughout the life course. For example, ensuring that women have
access to preconception care is key to protecting maternal and infant
health. That's why nearly every State and jurisdiction has chosen a
Title V National Performance Measure focused on increasing the number
of women who have a preventive medical visit. In Idaho, for example,
the Title V program is collaborating with and providing training to the
Maternal, Infant, and Early Childhood Home Visiting (MIECHV) Program
and the Family Planning program to increase pre- and inter-conception
education and referrals to prenatal care and well-woman care using One
Key Question.
Finally, I would like to discuss another primary focus area for
State Title V programs, which is supporting systems of services for
children and youth with special healthcare needs(CYSHCN). These systems
serve a diverse group of children ranging from children with chronic
conditions, such as asthma or diabetes, to children with autism, to
those with more medically complex health issues, such as spina bifida,
other congenital disorders, and children with behavioral or emotional
conditions. Overall, CYSHCN are defined as children birth to age 21who
have or are at increased risk for chronic physical, developmental,
behavioral, or emotional conditions and require health and related
services of a type or amount beyond that required by children
generally. Nearly 20 percent of children in the United States have a
special healthcare need. Maybe you have child or know a family that has
a child with special healthcare needs and thus understand the need for
a coordinated system of care.
Care coordination is an essential component of delivering services
to children and youth with special healthcare needs and can help to
address the fragmentation that occurs in the health care system. State
Title V programs improve care coordination by working collaboratively
with parents, providers, and payers. New Mexico, where I serve as
Director of the Title V Children and Youth with Special Health Care
Needs Program, known as Children's Medical Services, utilizes licensed
medical social workers to link families to needed health and social
services. We also have a program that focuses on improving transition
for youth with special healthcare needs as they move into adulthood. We
begin with assessments at age 14 to address youth knowledge of and
ability to manage their medical condition, use of healthcare services,
daily living activities, what areas they continue to need assistance
with or anticipate needing assistance with, living arrangements,
transportation, recreation and social relationships, and future
planning for education, training, or employment. Our social workers
work with the youth to identify adult providers that will assume care
during the transition process and assist in addressing healthcare
financing.
We also implemented a pilot program to address diabetes in children
and adolescents. In 2015, American Indians in New Mexico had the
highest rate of death due to diabetes, so we developed a project in
Santa Fe with the local hospital's diabetes educator, the Children's
Medical Services nutritionist, and social workers, along with a
community farm, to provide education, cooking classes, support, and
access to fruits and vegetables to children with diabetes. The program
addressed multigenerational beliefs and barriers around healthy
behaviors while honoring culture and traditions. While the pilot
project showed positive outcomes, it had to be discontinued due to lack
of funding. However, there is a lot of interest in reviving this
program and we are hopeful that even a small increase for Title V will
enable us to get this successful program up and running again.
Thank you again for your support. We hope to continue to build on
recent successes and that you can support our request of $660 million
for the cost-effective and accountable Title V MCH Block Grant.

[This statement was submitted by Susan Chacon, MSW, LISW,
President,
Association of Maternal & Child Health Programs.]
______

Prepared Statement of the Association of Science-Technology Centers
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
Thank you for accepting this statement submitted by the Association
of Science-Technology Centers (ASTC). I am Cristin Dorgelo, the
President and Chief Executive Officer for ASTC. I appreciate the
opportunity to present the views of ASTC to the Subcommittee for its
consideration as it prepares to write the fiscal year 2019 Labor,
Health and Human Services, Education, and Related Agencies
Appropriations bill.
ASTC represents more than 670 members in nearly 50 countries,
including not only science centers and museums, but also nature
centers, aquariums, planetariums, zoos, botanical gardens, and natural
history and children's museums, as well as companies, consultants, and
other organizations that share an interest in informal science
education.
Of those members, more than 380 are science centers and museums
located throughout the United States. Taken together, our global reach
demonstrates the universal recognition of the importance of science in
our lives. Our centers are leading institutions in the efforts to
promote education in science, technology, engineering, and mathematics
(STEM), through innovative and creative informal and classroom
experiences. We are helping to create the next generation of scientific
leaders and inspiring people of all ages about the wonders and the
meaning of science in their lives.
In the past we have testified on behalf of the specific funding
numbers for programs under this Subcommittee's jurisdiction. But today
I also want to commend this Subcommittee through a look at the bigger
picture--the overall science budget of the U.S. Federal Government.
As you are well aware, last year the Administration proposed
significant cuts to the budgets of a number of domestic agencies.
Included in the list of impacted programs were a number of science
agencies and science programs. Similar cuts have been proposed in the
Administration's fiscal year 2019 budget.
I want to personally thank you for not agreeing to the cuts. You,
the members of this Subcommittee, and indeed, the entire Congress,
rejected the proposed budget and instead passed a budget with robust
funding for science. The Subcommittee increased funding for the
National Institutes of Health, museum funding at the Institute of
Museum and Library Services, and programs serving science education
within the U.S. Department of Education.
Other Subcommittees increased funding for the National Science
Foundation, the National Oceanic and Atmospheric Administration, the
National Aeronautics and Space Administration, the National Institute
of Standards and Technology, the science programs of the U.S.
Department of Energy, and the science programs of the U.S. Department
of Agriculture, among other agencies.
Taken together, the science budget of the U.S. Federal Government
is larger than ever. Total R&D funding increased 12.8 percent or $20
billion in the fiscal year 2018 budget over the fiscal year 2017 budget
according to Science Magazine, to a total of $176.8 billion. On behalf
of the all the members of ASTC, I want to say thank you, with gratitude
for a job well done.
ASTC and its member centers were involved in the effort to support
a robust science budget last year and will continue our efforts in the
future. Many of our centers hosted science days, participated in
marches, and reached out to their elected representatives to make the
case for the importance of science and STEM education. ASTC will
continue to advocate for science funding at every opportunity.
Every day, our science centers and museums open their doors for
students and the public. And every day, our centers across the United
States reach out to students of underserved populations in both urban
and rural areas, so that quality STEM education can be accessed by
every American student. Every day, our centers provide these
educational experiences with science and technology in interesting and
innovative ways. Every day, our centers reach out to every student in
their community, to ensure that our Nation has the trained STEM
workforce we will need for the future. With continued Congressional
support for informal STEM education programs, you will make our efforts
more effective.
Turning to specifics, ASTC strongly urges the Subcommittee to
appropriate $18.5 million for the Science Education Partnership Awards
(SEPA) at the National Institutes of Health.
We also urge you to fully fund the Institute of Museum and Library
Services (IMLS), and provide $38.6 million for its Office of Museum
Services. The museum programs at IMLS provide crucial resources for the
informal science activities at science centers throughout the country.
Finally, within the U.S. Department of Education, we urge you to
provide $2.065 billion for the Title II Effective Teaching Program,
$1.1 billion for the Title IV-A Students Support and Academic
Enrichment program, and $1.2 billion for the Title IV-B 21st Century
Learning Centers.
In short, ASTC strongly urges you to maintain this level of funding
in the fiscal year 2019 budget and to again reject the Administration's
proposals to cut these programs.
In summary, we continue to thank this Subcommittee for all its
support of a robust science budget. You have demonstrated your support
for crucial programs that promote STEM education for our Nation's
students. Like ASTC, you recognize these are vital investments in our
future, and we thank you in advance for taking action accordingly.

[This statement was submitted by Cristin Dorgelo, President and
Chief Executive Officer, Association of Science-Technology Centers.]
______

Prepared Statement of the Association of University Centers
on Disabilities
The Association of University Centers on Disabilities (AUCD) is a
membership organization that supports and promotes a national network
of university-based interdisciplinary programs. Network members consist
of:
--67 University Centers for Excellence in Developmental Disabilities
(UCEDDs), funded by the Administration on Intellectual and
Developmental Disabilities (AIDD);
--52 Leadership Education in Neurodevelopmental Disabilities (LEND)
Programs funded by the Maternal and Child Health Bureau (MCHB);
and
--14 Intellectual and Developmental Disability Research Centers
(IDDRCs), funded by the Eunice Kennedy Shriver National
Institute for Child Health and Development.
All of AUCD's member programs have unique strengths that they share
with each other and with the greater disability community. Some are
exemplary educators: they train professional leaders, healthcare
specialists, individuals with disabilities, and family members in areas
such as early care and education, primary healthcare, special
education, and innovative housing and employment programs. Others excel
in basic and applied research, model demonstration programs, systemic
reform, and/or policy analysis. Because these programs work
collaboratively, innovations from one program can be implemented
rapidly in communities throughout the country, thus affecting more
lives than any one program could touch.
By working together, UCEDDs, LENDs and IDDRCs engage in significant
research that informs State and national policy and best practices. The
network emphasizes implementation of evidence-based innovations in
disability-related education, healthcare, and supports and services. It
offers leadership on major social problems affecting all people with
disabilities or special health needs across the lifespan. Below is a
summary of each of these programs and their funding requests for the
upcoming fiscal year.
university centers for excellence in developmental disabilities
AUCD requests $43.5 million in fiscal year 2019 within the
Administration for Community Living (ACL) to provide continued support
to maintain the existing 67 UCEDDs. The Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (Public Law 106-402, Subtitle
D) authorizes this network to provide interdisciplinary pre-service
preparation of students and fellows, continuing education, community
training, research, model services, technical assistance, and
information dissemination. UCEDDs exist to provide a unique, expert
State and community resource to facilitate the independence and full
participation in the community of people of all ages living with
developmental and other disabilities.
Due to the funding formula in the Developmental Disabilities Act
that requires appropriated funds to provide cost of living adjustments
to Centers before funding National Training Initiatives (NTI) and
technical assistance to Centers, this level of funding is necessary to
support the core functions of the Centers in addition to being able to
fund emerging national issues.
Developmental disabilities are disabilities that significantly
affect three or more activities of daily living, occur prior to the age
of 22, and include such disabilities as autism, behavioral disorders,
cerebral palsy, brain injury, fragile X, Down syndrome and other
genetic syndromes, fetal alcohol syndrome, intellectual disabilities,
and spina bifida.
The national network of UCEDDs is well situated to facilitate
communication across agencies, schools, and other providers as they are
accustomed to blending resources and have extensive experience working
with multiple State and local agencies, interdisciplinary academic
departments, and community partners. Continued funding will be used to
address obstacles to improve outcomes for youth in ways that can save
money and lead to greater independence. Youth with intellectual and
developmental disabilities want to graduate from school, find a job
that pays a living wage, and participate fully in society as
contributing citizens. Often standing in the way of these goals are
poorly coordinated and poorly supported transitions from school to
post-secondary education and/or work, including needed services in the
housing, transportation, health and direct supports sectors.
Continued funding will also be used to leverage the UCEDDs'
existing relationships with State agencies, disability organizations,
youth with disabilities and families to help implement provisions under
the recently passed Workforce Innovations and Opportunities Act and the
Every Student Succeeds Act. This will be accomplished by training
education professionals regarding the use of evidence-based practices
in educating students with disabilities and improving comprehensive
transition outcomes from adolescence to adulthood in ways that lead to
successful post-secondary education and meaningful employment.
Additionally, this funding will help the UCEDD network to address
other critical national and emerging needs. These include developing
evidence-based interventions to support the rising numbers of
individuals on the autism spectrum, addressing the impact of the opioid
crisis on children and families and adults with disabilities,
demonstrating cost-effective long-term services and supports for adults
with disabilities and those aging with disabilities, developing
science-based information for parents with children newly diagnosed
with developmental disabilities, and supporting returning veterans with
disabilities.
leadership education in neurodevelopmental disabilities
AUCD recommends $35,245,159 for the Leadership Education in
Neurodevelopmental and Related Disabilities (LEND) program within the
Maternal and Child Health Bureau under the Health Care Resources and
Services Agency. This amount would restore funding to each LEND site
that was cut to increase the number of sites available (from 43 to 52)
to screen, diagnose and provide evidence-based interventions to
individuals with ASD/DD as authorized under the Autism CARES Act.
LEND programs provide advanced training to students and fellows
from a broad array of professional disciplines in the identification,
assessment, and treatment of children and youth with a wide range of
developmental disabilities, including autism, intellectual disability,
fragile X syndrome, cerebral palsy, spina bifida, Down syndrome,
epilepsy and many other genetic and metabolic disorders. Nationally,
there are tremendous shortages of personnel trained to screen, diagnose
and treat individuals with DD, and as a result, families often must
wait months to get a comprehensive diagnosis and begin to receive
supports and services. In addition to these practitioners, the program
also trains parents and self-advocates living with disabilities. It's a
critical capacity building program that greatly expands the disability
competency of thousands of professionals each year.
In 2006, the Combating Autism Act (Public Law 109-416) amended the
Public Health Service (PHS) Act to add an emphasis on the early
identification, diagnosis and treatment of children with Autism
Spectrum Disorder (ASD) because of the rising epidemic of children in
the US with an ASD diagnosis. This law was reauthorized in 2014 as the
Autism CARES Act (Public Law 113-157). The law recognizes the benefits
of the LEND network to address this significant public health issue by
authorizing the expansion of the network.
The LEND network is currently made up of 52 programs in 44 States,
with an additional six States and five territories reached through
program partnerships. With the expanded number of LEND grant recipients
and trainees, the LEND programs provided interdisciplinary diagnostic
evaluations for over 109,000 infants and children in 2016-2017. By
continuing to meet the growing demand for these services, the LEND
programs and their graduates are reducing wait times for diagnostic
evaluation and entry into intervention services.
Each LEND receives approximately $600,000 each year; that number
varies based on number of trainees and faculty disciplines represented.
Trainees from LEND programs go on to serve in hospitals, clinics,
schools and other community settings. They not only provide exemplary
services to children and their families, but display leadership in
local, State, and national efforts to develop more effective systems of
care. LEND disciplines include: audiology, family leadership, genetic
counseling, health administration, nursing, nutrition, occupational
therapy, pediatrics, neurology, pediatric dentistry, physical therapy,
psychology, psychiatry, public health, self-advocacy, social work,
rehabilitation counseling, special education, and speech-language
pathology.
eunice kennedy shriver intellectual and developmental disability
research centers
AUCD supports $1.531 billion, an increase of $79 million over
fiscal year 2018, for NICHD in fiscal year 2019 including a
proportionate increase for the national network of IDDRCs. Since their
inception in the late 1960s, IDDRCs have been the national resource for
basic research into the genetic and biological basis of human brain
development, greatly improving our understanding of the causes of
developmental disabilities. The IDDRCs also contribute to the
development and implementation of evidence-based practices by
evaluating the effectiveness of biological, biochemical, and behavioral
interventions. For example, exciting research results from our IDDRC
network were recently published, the University of Washington
Intellectual and Developmental Disabilities Research Center (IDDRC),
based at the Center on Human Development and Disability (CHDD). The
study reveals that autism may be predicted from an array of
neurobehavioral susceptibilities, many appreciable before the syndrome
is diagnosed, and each potentially traceable to specific sets of
genetic influence.
AUCD urges NICHD to provide additional resources to the IDDRCs for
research infrastructure and expansion of cores so that they can conduct
basic and translational research to develop effective prevention,
treatment, and intervention strategies for children and adults with
developmental disabilities.

[This statement was submitted by Andrew J. Imparato, Executive
Director, Association of University Centers on Disabilities.]
______

Prepared Statement of the Association of University Programs in
Occupational Health and Safety
My name is Elaine Symanski and I am the President of the
Association of University Programs in Occupational Health and Safety
(AUPOHS). On behalf of AUPOHS, an organization representing the 18
multidisciplinary, university-based Education and Research Centers
(ERCs), eleven Agricultural Centers for Disease and Injury Research,
Education, and Prevention (Agricultural Centers), and six Centers of
Excellence in Total Worker Health, funded by the National Institute for
Occupational Safety and Health (NIOSH), we respectfully request that
the fiscal year 2019 Labor, Health and Human Services Appropriations
bill include no less than the Fiscal 2016 level of $339.121 million for
NIOSH, including $29 million for the Education and Research Centers,
$25.5 million for the Agriculture, Forestry and Fishing (AFF) Program,
and no less than the fiscal year 2017 level for the Total Worker Health
Program.
Occupational injury and illness represent a striking burden on
America's health and well-being. Despite significant improvements in
workplace safety and health over the last several decades, daily, about
13,000 U.S. workers sustain injuries on the job that are serious enough
to require medical consultation, 12 workers die from an unintentional
injury suffered at work, and 145 workers die from work-related
diseases. This burden costs industry and citizens an estimated $4.8
billion per week. This is an especially tragic situation because work-
related fatalities, injuries and illnesses most often affect the most
productive individuals in our society and are preventable with
effective, professionally directed, health and safety programs.
NIOSH is the primary Federal agency responsible for conducting
research and making recommendations for the prevention of work-related
illness and injury. The ERCs provide regional and national resources
for those in need of occupational health and safety assistance-
industry, labor, government, academia, and the public. Collectively,
the ERCs provide training and research resources to every Federal
Region in the US. ERCs contribute to national efforts to reduce losses
associated with work-related illnesses and injuries by offering:
--Prevention Research: Developing the knowledge and associated
technologies to prevent work-related illnesses and injuries;
--Professional Training: ERCs support graduate degree programs in
Occupational Medicine, Occupational Health Nursing, Safety
Engineering, Industrial Hygiene, and other related fields to
provide qualified professionals to enter the workforce in
essential disciplines;
--Research Training: Preparing doctoral-trained scientists who will
respond to future research challenges and who will train the
next generation of occupational health and safety
professionals;
--Continuing Education: Short courses focused on workforce
development in the occupational health and safety disciplines
that enhance professional skills and maintain professional
certification for those employed in U.S. industries; and
--Regional Outreach: Responding to specific requests from employers,
healthcare professionals, workers and other stakeholders on
issues related to occupational health and safety.
The rapidly changing workplace continues to present new health
risks to American workers that need to be addressed through
occupational safety and health research. In addition, newly emerging
risks, such as Ebola and other infectious disease outbreaks, and
industrial disasters like the Deepwater Horizon Spill require swift
responses and evidence-based worker protections. In response to risks
posed by potential Ebola exposure, ERCs have delivered educational
programs and provided expertise in developing protocols and policies to
prevent hazardous worker exposures. Additionally, NIOSH is the Federal
agency that is charged with certifying and approving the respirators
that are necessary to protect U.S. workers from inhalation exposures in
the workplace to numerous chemical and biological agents.
The heightened awareness of terrorist threats, and the increased
responsibilities of first responders and other homeland security
professionals, illustrates the need for strengthened workplace health
and safety in the ongoing war on terror. The ERCs play a crucial role
in preparing occupational safety and health professionals to identify
and mitigate vulnerabilities to terrorist attacks and to increase
readiness to respond to biological, chemical, or radiological attacks.
In addition, occupational health and safety professionals have worked
for several years with emergency response teams to minimize disaster
losses, including taking a lead role in protecting the safety of 9/11
emergency responders in New York City and Virginia, with ERC-trained
professionals applying their technical expertise to meet immediate
protective needs and to implement evidence-based programs to safeguard
the health of clean-up workers. More recently, in 2018, occupational
health and safety professionals worked to minimize hazards among
workers involved in clean up and restoration in the face of the extreme
devastation caused by Hurricanes Harvey, Irma and Maria in Texas,
Florida, Puerto Rico and the US Virgin Islands.
We need manpower to address these challenges and it is the ERCs
that train the professionals who fill key positions in health and
safety programs, locally, regionally and around the Nation. ERCs
provide multi-disciplinary training and as a result, ERC graduates
protect workers in virtually every occupation.
NIOSH also focuses research and outreach efforts on the Nation's
most dangerous worksites. People who work in agriculture, forestry and
fishing experience occupational fatality rates that are 6 times to more
than 171 times higher than the average for American workers. The
Centers for Agricultural Safety and Health were established by Congress
in 1990 (Public Law 101-517) in response to evidence that agricultural,
forestry and fishing workers were suffering substantially higher rates
of occupational injury and illness than other U.S. workers.
Today the Agriculture, Forestry, and Fishing (AFF) Initiative
includes ten regional Agricultural Centers and one national center to
address children's farm safety and health. The AFF program is the only
substantive Federal effort to meet the obligation to ensure safe
working conditions in these vital production sectors. While
agriculture, forestry, and fishing constitute some of the largest
industry sectors in the U.S. (DOL 2011), most AFF operations are
themselves small: nearly 78 percent employ fewer than 10 workers, and
most rely on family members, immigrants, part-time, contract and/or
seasonal labor. Many of these agricultural workers are excluded from
labor protections, including OSHA oversight, on the vast majority of
American farms.
The AFF sector averages 540 fatalities per year resulting in the
highest fatality rate of any sector in the Nation. More than 1 in 100
AFF workers incur nonfatal injuries resulting in lost work days each
year. These reported figures do not even include men, women, and youths
on the most dangerous farms--those with fewer than 11 full-time
employees. In addition to the harm to individual men, women, and
families, these deaths and injuries inflict serious economic losses
including medical costs and lost capital, productivity, and earnings.
The life-saving, cost-effective work of the AFF program is not
replicated by any other agency. For example, State and Federal OSHA
personnel rely on NIOSH research in the development of evidence-based
standards for protecting agricultural workers and would not be able to
fulfill their mission without the AFF program. In addition, staff
members of USDA's National Institute of Food and Agriculture interact
with NIOSH occupational safety and health research experts in order to
learn about the cutting-edge research and new directions in this area.
Agricultural Center activities include:
--AFF research that has shown that the use of rollover protective
structures (ROPS or rollbars) and seatbelts on tractors can
prevent 99 percent of overturn-related deaths. The National
ROPS Rebate Program has assisted thousands of farmers with
retrofitting unprotected tractors and program participants have
reported over 200 near misses with no injuries for those
farmers who had installed ROPS through the program. The program
makes retrofitting remarkably easy and 99 percent of program
participants said they would recommend the program to other
farmers. Similar programs are also offered to prevent serious
injuries due to Power take-off (PTO) entanglements in farm
machinery.
--Working in partnership with producers and farm owners, the
Agricultural Centers have partnered to develop evidence-based
solutions for reducing exposure to pesticides and other farm
chemicals among farmers, farm workers and their children.
--Commercial Fishing has an annual fatality rate approximately 30
times higher than the rate for all U.S. workers. Research has
shown that knowledge of maritime navigation rules and emergency
preparedness means survival. One Agricultural Center team
produced an interactive navigation training CD in three
languages, demonstrating the effectiveness of refresher
survival drill instruction. Other Centers are partnering with
fishing communities to develop improved life-jacket designs
that are comfortable enough to wear while working and will
markedly improve survival and recovery in the event of a fall
overboard.
--The Agricultural Centers have partnered with producers, employers,
the Federal migrant health program, physicians, nurses, and
Internet Technology specialists to educate farmers, employers,
and healthcare providers about the best way to treat and
prevent agricultural injury and illness. For example, one
agricultural center has identified processes that occur during
recovery from agricultural dust-induced inflammation and this
research has led to novel treatments for respiratory diseases
common in farmers and ranchers. Another center has collaborated
with farmworker communities in Alabama, Florida, Georgia,
Mississippi, North Carolina, South Carolina, Puerto Rico, and
the U.S. Virgin Islands to address health concerns related to
chronic heat stress and low-level pesticide exposure.
--The logging industry has a fatality rate more than 30 times higher
than that of all US workers. The Agricultural Centers have
conducted ongoing studies and outreach efforts to ensure the
safety of our Nation's 86,000 workers in forestry & logging. An
example of these efforts is provided by the Southeast
Agricultural Center, which has been working to reduce logging
injuries and fatalities through the implementation of an
industry specific safety and health management program and by
evaluating the Timber-Safe program's impact on workplace hazard
reduction in logging operations.
NIOSH also supports six Centers of Excellence for Total Worker
Health (TWH) that complete multidisciplinary research, intervention,
outreach and education, and evaluation activities advancing the overall
safety, health, and well-being of the diverse population of workers in
our Nation. The TWH Centers supports the development and adoption of
ground-breaking research and health and safety best practices with a
primary focus on the overall health of the worker and worksite
improvements. The TWH Centers partner with government, business, labor,
and community to improve the health and productivity of the workforce.
Most TWH research, education, and outreach activities occur in
workplaces, such as hospitals, factories, offices, and construction
sites, and result in immediate improvements in health and safety.
Examples include:
--Aspects of the workplace (e.g., scheduling, shift work, heavy
lifting, toxic exposures) not only increase risk of injury and
illness, but also impact health behaviors (e.g., physical
activity, substance use, sleep) and health outcomes (e.g.,
musculoskeletal disorders, mental health, obesity). In turn,
ill health and chronic conditions impact performance at work,
increasing risk for serious injury, absenteeism, and reduced
productivity.
--Workers in some industries experience higher rates of
cardiovascular disease, obesity, depression, and even premature
death. We also see higher rates of smoking and drinking among
certain working populations. Wellness programs focus on
changing individual behaviors (e.g., eat a healthy diet,
exercise more), but they do not take into account aspects of
the workplace that impact health. For example, nationally we
have seen a reduction in smoking rates. However, certain
industries, such as construction, continue to have higher than
national average rates of smoking. Therefore, the conventional
public health approaches addressing smoking are not reaching
this population. TWH Centers are conducting research to
understand the underlying causes and to implement interventions
to addressing these causes.
--TWH Centers have also developed and evaluated interventions to
reduce injuries and disease among workers in corrections,
construction, healthcare, retail, food service, and
manufacturing. The TWH Centers partner with small and large
enterprises to address the needs of workers of all ages. These
interventions have shown changes in biomarkers of health (e.g.,
blood pressure), behaviors (e.g., smoking rates), mental
health, fewer lost work days due to injury, as well as savings
for employers.
In summary, the TWH Centers conduct and disseminate scientific,
evidence-based research and practices with the goal of improving the
overall safety, health, well-being and the productivity of the American
workforce. The TWH Centers are an investment in the American economy
that work to help businesses and communities reduce the impact and cost
of injuries and illness.
We urge you to recognize the important contribution of NIOSH,
including the ERCs, the AFF Program, and the TWH Program to the health
and productivity of our Nation's workforce. Thank you for the
opportunity to submit testimony.

[This statement was submitted by Elaine Symanski, President,
Association of University Programs in Occupational Health and Safety.]
______

Prepared Statement of the Association of Young Americans
Dear Senators Shelby, Leahy, Blunt, and Murray:
On behalf of our 8,000 members across all 50 States, the
Association of Young Americans (AYA) urges Congress to support ongoing
investments in fiscal year 2019 in programs that help make higher
education more accessible and affordable and that alleviate the
crushing college debt facing 44 million Americans today. Formed in
2016, AYA advocates for the issues that affect all young Americans
today, including the rising cost of obtaining a higher education, the
insurmountable debt students take on to attend college, and the threat
of elimination of important programs like the Public Student Loan
Forgiveness Program (PSLF).
On the subject of college affordability, AYA urges Congress to
increase Pell funding or at least maintain it at the levels in the
fiscal year 2018 omnibus, which raised the maximum award by $175 to
$6,095. Additionally, AYA supports maintaining the recent year-round
Pell expansion, which allows students to attend summer courses and
complete college in a shorter amount of time, thus reducing overall
costs. AYA also encourages Congress to continue increased investments
in programs that help first generation students, low-income families,
and non-traditional students attend and afford college including the
GEAR Up and TRIO programs. Lastly, to give high school students
academic and financial legs up for college, AYA urges Congress to
increase investments in dual-enrollment programs that allow students to
complete college courses during high school, thereby increasing college
completion rates and affordability.
AYA strongly supports the Public Service Loan Forgiveness (PSLF)
Program and urges Congress to appropriate additional funds, if
necessary, to protect individuals unwittingly enrolled in non-
qualifying loan programs. Launched in 2007, PSLF forgives the remaining
balance on student Direct Loans after students have made 120 qualifying
monthly payments under a qualifying repayment plan while working full-
time for a qualifying employer. According to USED, 800,000 borrowers
submitted at least one employer certification form that showed their
intention to apply for forgiveness and whether they are participating
in a loan program that would make them eligible for forgiveness. In
fiscal year 2018, Congress appropriated $350 million to assist income-
driven repayment plan participants who wrongfully believed that they
were participating in an eligible loan program. Hundreds of thousands
of students have relied in good faith on the availability of PSLF,
basing their decisions to attend college and work in the public
sector--both public goods--based on the availability of loan
forgiveness. This funding will protect some of those who diligently
repaid their loans and worked in the private sector but who applied for
ineligible PSLF loans mistakenly. AYA believes Congress should continue
to live up to the promise to young Americans that PSLF represents by
not only maintaining this program but also strengthening it with
additional funding if necessary.
AYA is committed to ensuring the voice of young Americans is
represented in Congress and we appreciate your consideration of our
fiscal year 2019 appropriations requests. We sincerely urge you to
continue investing in the programs that help make college more
accessible and affordable for future generations.
Sincerely.

[This statement was submitted by Ben Brown, Founder and CEO,
Association of Young Americans.]
______

Prepared Statement of Boys & Girls Clubs of America
Boys & Girls Clubs of America (BGCA) would like to thank the
Members of the Subcommittee for their leadership and continued support.
We appreciate the opportunity to comment on issues and programs related
to fiscal year 2019 appropriations and the impact on our Nation's
youth.
BGCA serves 4.3 million youth each year, with 458,000 children and
teens entering the doors of a Boys & Girls Club every day. Our nearly
4,400 Clubs represent a cross-section of American culture and
heritage--with 1,659 school-based Clubs, 1,008 Clubs in rural areas,
287 Clubs in public housing facilities, 492 affiliated youth centers on
military installations worldwide, and 177 Clubs on Native lands. We are
the largest provider of youth services on Native lands and the second
largest provider of afterschool programs in rural America, with public
schools being the largest.
At BGCA, we believe every young person deserves a great future. Our
vision is to provide a world-class Club Experience that ensures success
is within reach of every young person who enters our doors, with all
members on track to graduate from high school with a plan for the
future, demonstrating good character and citizenship, and living a
healthy lifestyle. Clubs offer young people a safe and positive place
to learn and grow so that they become productive, caring and
responsible citizens.
A growing body of evidence proves out-of-school time and summer
learning programs are effective at helping youth to improve grades and
school attendance, while fostering higher aspirations for graduating
high school and attending some form of post-secondary education.
According to our evidence-informed National Youth Outcomes Initiatives
(NYOI) \*\ report (https://www.bgca.org/about-us/club-impact):
---------------------------------------------------------------------------
\*\ NYOI is the largest set of privately-held youth development
data. It enables us to leverage member-provided data to adjust our
strategies in real-time to maximize outcomes for youth.
---------------------------------------------------------------------------
--97% of Club teens expect to graduate from high school and 87
percent plan to attend college
--84% of Club members believe they can make a difference in their
community
--84% of Club 12th graders abstain from alcohol use, compared to 58
percent of their peers nationally
--54% of alumni save the Club saved their life
The impact of Clubs extends far beyond the young people who walk
through our doors every day. A study by the Institute for Social
Research and the School of Public Health at the University of Michigan
found that for every dollar invested in Boys & Girls Clubs, $9.60 is
returned to communities, approximately $13.8 billion annually. Clubs
provide underserved youth with regular access to and engagement in
areas such as STEM, sports leagues, homework help and tutoring, summer
learning loss prevention, and engagement in the arts. As a result, Club
youth are able to leverage and create opportunities that shift the
course of their life trajectories and undermine cycles of inequity.
Additionally, access to affordable, reliable and safe out-of-school
time programs allows parents and caregivers the opportunities to
participate in the workforce. While their children are actively engaged
at the Club, families can rest assured knowing that they have access to
enhanced academic support to ensure youth are on track to graduate,
nutritious food, opportunities to be physically active and health
education, all provided by caring staff within the context of a safe
and supportive Club environment. As a result, Clubs contribute to major
savings for society by helping to prevent costly expenditures for
healthcare, public assistance programs, and criminal justice system
involvement and incarceration.
As you know, programs funded under the Labor, Health & Human
Services, Education, and Related Agencies subcommittee have a major
impact on the health and well-being of youth across the country. As
Congress negotiates fiscal year 2019 appropriations bills, we urge you
to support the following investments for the youth of this country.
department of labor--youth workforce development
By 2020, 60 percent of jobs will require education and/or training
beyond high school and if the lack of a skilled workforce is not
addressed, the U.S. economy will face a shortage of 5 million
workers.\1\ Many U.S. employers say the inability to find qualified
workers is their biggest obstacle to growth. Today, 44 percent of
employers say their greatest needs are in the area of soft skills (e.g.
communication, customer service, creativity, collaboration, critical
thinking),\2\ and 70 percent of young adults do not qualify for
military service due to character, education or fitness concerns.\3\
---------------------------------------------------------------------------
\1\ Carnevale, A.P., Smith, N., & Strohl, J. (2013, June).
Recovery: Job Growth and Education. Georgetown Center on Education and
the Workforce. Retrieved from https://cew.georgetown.edu/cew-reports/
recovery-job-growth-and- education-requirements-through-2020/.
\2\ Watch the Skills Gap. (2017, October 25). Retrieved from
https://www.adeccousa.com/employers/resources/skills- gap-in-the-
american-workforce/.
\3\ Feeney, N. (2014, June 30). Pentagon: 7 in 10 Youths Would Fail
to Qualify for Military Service. Retrieved from http://time.com/
2938158/youth-fail-to-qualify-military-service/.
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--BGCA has the reach, scale and the experience to be a key partner in
preparing today's youth for success in tomorrow's workforce.
--Organizations like BGCA with a national network in all 50 States
(touching virtually every community) are uniquely positioned to
align funding where it is needed most and provide the technical
assistance to local communities to ensure youth are getting the
job readiness skills needed to be a strong workforce for
tomorrow.
We urge the Subcommittee to support $25 million to be administered
by the Department of Labor's Employment & Training Administration
dedicated to national out-of-school time, youth-serving organizations
providing career exploration, job skills development, work-based
learning and career mapping.
health & human services--youth opioid prevention
Opioid abuse and overdose have reached epidemic levels. The
traumatic experience of growing up within a family and community where
substance use and misuse is prevalent disrupts a young person's ability
to thrive. The associated adverse experiences put young people at
increased risk for substance use and other behaviors that lead to poor
health outcomes. Over 11 million young people are unsupervised after
school, when juvenile violent crime and risky behaviors escalate. Boys
& Girls Clubs are open during a time of day when youth are most likely
to get involved in high-risk activity. This uniquely positions Clubs to
disrupt the cycle of addiction and abuse by providing a high quality
youth experience that employs evidence-informed prevention strategies
as its universal approach.
--Clubs help provide improved social & emotional resilience for all
youth by enhancing high quality youth development and risk
prevention practices and messages in programs.
--Boys & Girls Clubs effective substance abuse prevention strategies
and practices include:
--Creating meaningful opportunities to build social and emotional
development skills, specifically: self-regulation,
communication, emotional awareness, healthy decision-
making, self-efficacy, and healthy peer and adult
relationships.
--Using a trauma-informed approach that realizes the widespread
impact of trauma and responds with fully integrated trauma-
informed practices, policies and procedures.
--Creating high-yield, small group opportunities that allow youth
to develop a sense of emotional safety, peer support, trust
and transparency, collaboration, and leverage youth choice
and voice.
--Implementing prevention programs and activities that are
developmentally responsive and address all forms of
substance use.
--Engaging families intentionally within the Club, and creating
strong community partnerships to support youth and families
with needs beyond the scope of the Club.
BGCA compared regularly attending Club members and youth nationally
by grade level. Across almost all health-risk behavior indicators, with
each successive grade, the difference between Club members' abstention
rates and those of Youth Risk Behavior Surveillance System \4\
respondents increased.
---------------------------------------------------------------------------
\4\ The Youth Risk Behavior Surveillance System (YRBSS) is a
national survey administered by the Centers for Disease Control and
Prevention that monitors health-risk behaviors among youth and young
adults. The survey is administered every 2 years to students in 6th
through 12th grades in their school classrooms. The NYOI member survey
includes questions from the YRBSS.

In other words, teens who stay connected to a BGCA Club as they get
older seem better able to resist engaging in high-risk behaviors than
their counterparts nationally at the same ages.
In order to combat the opioid epidemic, greater investments in
prevention must be made. Our Clubs have widespread reach across all 50
States, with a targeted goal of servicing the most at- risk youth in
the hardest hit communities.
We urge the Subcommittee to support $25 million for national, out-
of-school time, youth- serving organizations providing prevention
services; reducing risk factors leading to addiction; and promoting
resilience in children, families and communities.
department of education--21st century community learning centers
21st CCLC (21st Century Community Learning Centers) is the only
source of Federal funding dedicated to programming in the out-of-school
time hours. Funding supports: before- and after-school, and summer
programs with: tutoring, academic support and enrichment programs, STEM
activities, and physical activities. In 2016, 21st CCLC funding
supported 565 sites at 212 Boys & Girls Clubs in 48 States plus Puerto
Rico and the Virgin Islands.
--This competitive grant provides crucial resources and establishes
support systems to close existing educational opportunity and
achievement gaps for underserved students.
--Among regularly attending students, seven in ten improved their
homework completion, almost one in three improved their math
and language arts grades, and two in three improved their
behavior in class.
We urge the Subcommittee to support $1.3 billion in funding for the
21st Century Community Learning Centers program.
conclusion
We know that an investment in America's youth will ensure our
country's success today and into the future. Prioritizing our youth not
only leads to better individual outcomes but also to a healthier, safer
and more prosperous nation. We stand willing to work with you to help
build the next generation of American leaders by increasing the number
of young adults who have the character, education, fitness and skills,
needed to be successful.
Thank you for supporting these programs that are vital to our
youth.

[This statement was submitted by Jim Clark, President & CEO, Boys &
Girls Clubs of America.]
______

Prepared Statement of the Brain Injury Association of America
Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to submit this written testimony with regard to the fiscal
year 2019 Labor-HHS-Education appropriations bill. This testimony is on
behalf of the Brain Injury Association of America (BIAA), our 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 2.5 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. Currently,
more than 5 million Americans live with a TBI-related disability.
Increasing numbers of service members returning from the conflicts
in Iraq and Afghanistan with TBI and their families are seeking
resources for information to better understand TBI and to obtain vital
support services to facilitate successful reintegration into their
communities.
BIAA is pleased that the fiscal year 2018 omnibus spending bill
passed in March included an additional $2 million for the HHS'
Administration for Community Living (ACL) TBI Federal Grant Program,
which will be split between grants for State Protection and Advocacy
systems and the Federal TBI State Implementation Grant program. We
thank you for that support.
Administration for Community Living.--The TBI Act authorizes the
Administration for Community Living (ACL) in the Department of Health
and Human Services (HHS) 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 20 years the 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, the number of State grant awards was reduced
to 15, later adding three more States, 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.
Increased funding of the program will provide resources necessary
to sustain the grants for the 20 States currently receiving funding and
to ensure funding for 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. This year, we respectfully request increased funding in the
amount of $5,000,000 for an additional 20 State grants, which would
expand the total number of State grants to 39 bringing the total State
grant allocation to just over $11,000,000.
Similarly, the 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 & referral
and legal assistance to people residing in nursing homes, to returning
military seeking veterans benefits, and students who need educational
services. We request $6,000,000 be allocated to the TBI P&A program to
allow them to serve more individuals in each State.
Effective Protection and Advocacy services for people with
traumatic brain injury are 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. An increased appropriation in this
area would ensure that each P&A can move towards providing a
significant PATBI program with appropriate staff time and expertise.
CDC--National Injury Center--$10 million (+ $5 million) for the
Centers for Disease Control and Prevention TBI Registries and
Surveillance, Brain Injury Acute Care Guidelines, Prevention and
National Public Education/Awareness.
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 2.5 million TBIs occur
each year and 5.3 million Americans live with a life-long disability as
a result of TBI. The TBI Act as amended in 2014 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.
In 2013, the National Academies of Sciences, Engineering, and
Medicine (formerly known as the Institute of Medicine, or the IOM)
issued a report calling on the CDC to establish a surveillance system
that would capture a rich set of data on sports- and recreation-related
concussions among 5-21 year olds that otherwise would not be available.
To meet this goal, we request an increase of $5 million in the CDC
budget to establish and oversee a national surveillance system to
accurately determine the incidence of concussions, particularly among
the most vulnerable of Americans--our children and youth. In the
President's fiscal year 2017 budget, a $5 million increase was included
for the Centers for Disease Control and Prevention (CDC) Injury
Prevention and Control Center to develop sports concussion surveillance
to accurately determine the incidence of sports related concussions
among youth ages 5-21.
NIDILRR TBI Model Systems of Care.--Funding for the TBI Model
Systems in the Administration for Community Living 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 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 of Care is 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 research.
In order to address TBI as a chronic condition, Congress should
increase funding in fiscal year 2019 for NIDILRR's TBI Model Systems of
Care program to add one new Collaborative Research Project and increase
the number of centers from 16 to 18. In addition, given the national
importance of this research program, the TBI Model Systems of Care
should receive ``line-item'' status within the broader NIDILRR budget.
Over the next 5 years, BIAA requests increased funding by $15 million
to expand the TBI Model Systems program:
--Increase the number of multicenter TBI Model Systems Collaborative
Research projects from one to three, each with an annual budget
of $1.0 million.
--Increase the number of competitively funded centers from 16 to 18
while increasing the per center support by $200,000; and
--Increase funding for the National Data and Statistical Center by
$100,000 annually to allow all participants to be followed over
their lifetimes.
We ask that you consider favorably these requests for the
Administration for Community Living, the CDC, and the NIDILRR's TBI
Model Systems of Care 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.
If you wish any additional information, please contact Amy Colberg,
director of government affairs at [email protected]. Thank you for
your continued support of individuals with brain injury and their
families.
______

Prepared Statement of the Bureau of Labor Statistics
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for taking the time to consider my testimony on
behalf of the Bureau of Labor Statistics. I speak to you as the Chair
of the Friends of the Bureau of Labor Statistics (BLS), and as a former
commissioner of the BLS, regarding the fiscal year 2019 Appropriation
for that agency. I urge you to provide $650 million in funding. This is
a 6 percent increase over the fiscal year 2018 appropriation, but
represents an important, efficiency-enhancing investment in America's
data infrastructure.
Accurate, timely, and readily available statistics are an essential
public good in a free enterprise economy. Good statistics help private
entities and governments make better decisions and investments, while
bad or missing statistics can undermine efficiency in private markets
and lead to bad choices that waste tax payer dollars. Federal
investment in the agencies that gather the most essential data for
America's economic and social wellbeing have flatlined, and we are
funding our Federal data infrastructure at irresponsibly low levels.
The additional funding provided for BLS in fiscal year 2018 was a good
start, but we must increase the fiscal support of the BLS to maintain
American's position as the world's leading economy, and to advance the
wellbeing of our children, families, businesses and communities.
For more than 125 years, the BLS produced vital information about
jobs and unemployment, wages, working conditions and prices, serving as
a key pillar of the data infrastructure of the Nation. The incredible
importance of these data can be seen in their use for consequential
policy and private decisions. I have provided an appendix to this
testimony that include numerous examples of the uses and users of BLS
data, from the Federal Government, to nonprofits, to university, and
families. I will only highlight a few here.
First, the Federal Reserve System's (Fed) dual mandate requires it
to pursue price stability and full employment. The inflation measures
produced by the BLS such as the Consumer Price Index, Producer Price
Index, Employment Cost Index, and the U.S. Import and Export Price
Indices are central to Fed policy decisions regarding prices.
Similarly, the Fed's assessment of employment conditions are most
strongly informed by the monthly measures of payroll jobs (from the
Current Employment Statistics) and the unemployment rate (from the
Current Population Survey), both produced by BLS.
In addition to helping the Fed make good decisions, changes to the
Consumer Price Index help the Social Security Administration make cost-
of-living adjustments to payments for its retirees and other
beneficiaries, which helps nearly 62 million Americans. In these cases,
the accuracy of BLS data is paramount.
Local Area Unemployment Statistics (LAUS) estimates are used by
Federal agencies to transparently allocate funds for important programs
such as the SNAP, Temporary Emergency Food Assistance Program, and
Temporary Assistance for Needy Families.
But it's not just the Federal Government that depends on data from
the BLS. State and Local governments use Employment Projections,
Occupational Employment Statistics and the Occupation Outlook Handbook
to make occupation projections, identify skill gaps and market
geographic areas to prospective employers. Thus, the data collected and
shared by the BLS provide a stable foundation for government
decisionmaking.
When urban and rural communities, as well as businesses of all
sizes, and families use on the data produced by BLS, they fuel economic
development. Business can find the right workers, pay them competitive
wages, while job seekers and students can make career decisions that
will lead the right workers to the right employees.
The burgeoning new world of ``Big Data'' analytics relies heavily
on official statistics to reach their conclusions as they benchmark
estimates, weight samples and validate results. Many of the most well-
known examples, including the Billion Prices Project, and products from
Indeed and Burning Glass depend on data infrastructure provided by BLS.
The increase in funding BLS received in fiscal year 2018 was
beneficial, but it cannot reverse nearly a decade of flat funding. The
BLS's purchasing power has fallen by nearly 14 percent since 2009. The
BLS has taken many steps to implement cost saving measures to make the
most of its budget. Currently, BLS is exploring options that include
centralizing more data collection, moving to a multi-year sampling and
collection protocols, using a combination of collected and modeled
data, expanding web scraping techniques and autocoding. Even though
these efforts have gone a long way, the current level of funding is not
sustainable, and means BLS cannot adequately innovate and rise to new
challenges in understanding our changing economy.
First, BLS cannot devote enough staff, data purchases, IT hardware
and software to better cover emerging economic trends, including the
growing service sectors and the gig and digital economies and expand
the use of big data. Without these, BLS data risks becoming irrelevant,
and the businesses and communities will lose the ability to make
informed, evidence-based decisions that fuel the economy.
Second, short staffing risks serious errors or last-minute delays
in major statistical releases. Less training, outdated equipment and
software, and fewer back-ups raise risks from mistakes and unforeseen
events. And these mistakes can be costly. A mistake of just 0.1 percent
in the CPI would result in an over- (or under-) payment of almost $1
billion in annual Social Security benefits. Financial markets could
also be roiled by sudden delays or large errors in jobs or inflation
data releases. BLS staff works hard to make sure this does not happen,
but the risk is growing.
With a return to full funding, BLS could reduce the risk of
operational failure, and accomplish many improvements to its programs,
and help ensure the wellbeing of American families.
Some key examples are:
--Measure the Gig Economy. The May 2017 fielding of the CPS Continent
and Alternative Employment Arrangement Supplement (CWS) was
funding as a one-time reimbursable by the DOL Chief Evaluation
Office. Without continual funding, the BLS cannot residing the
questions in the CWS and other supplements to track emerging
trends in the labor market. In addition, the employer
perspective (incentives, type and degree of use) is still
missing.
--Modernize the Consumer Expenditure Survey. BLS is redesigning the
Consumer Expenditure Survey to take advantage of new
technologies that reduce the high respondent burden and improve
data quality.
--Measure Employer-Provided Training. BLS last measured employer-
provided training in 1995. So, our country has no gold-standard
information on whether employers are providing more or less
training than in the past. What sort of training to they
provide? To whom? How do they provide it? Gathering this type
of data can help policy makers, educators and businesses
understand and address our national skills needs.
--Increase Capacity for Computationally Intensive Automation. Funds
to enhance BLS hardware, software and expertise would advance
BLS's ability to produce more detailed and improved products
from its existing programs and administrative data. This
capacity would increase the use of autocoding (to improve data
quality and reduce reporting burden) and data matching,
regional modeling, and merging.
--Design Surveys to Answer New Questions About Our Economy. BLS seeks
to add the capacity to field survey modules that can provide
gold-standard answers to urgent questions as they arise. These
modules will address key questions as they arise, such as who
employs gig workers, impacts of capital constraints, effects of
natural disasters, etc.
Good data fuels the national economy and empowers good
decisionmaking. It is essential to any effort to advance the well-being
of our children as they prepare for the labor market, for families as
they plan for their living arrangements, small and large business
owners as they plan for their future, and for policy makers as they
evaluate programs and policies.
Funding the BLS is an investment in efficient government. Public
officials and policy makers need reliable data and tools to advance
sound and responsible policies. As a producer of gold-standard data,
BLS has had a long history of independence and impartiality. Since its
inception in 1884, BLS Commissioners have always supported the
impartial and objective role of the agency. BLS follows the Office of
Management and Budget directives to adhere to objective presentation of
facts, as well as explicitly protecting data integrity and transparency
with respect to its methodologies and practices.
The statistics collected by BLS provide a stable foundation for
decisionmaking. Every community, including businesses both large and
small, relies on Federal data to fuel economic development. The BLS's
user metrics attest to the usefulness of their data. The BLS website
averages 19 million page views per month, as people access more than
107 million BLS data series.
Re-investing in BLS means the agency will continue to gather,
analyze and share the trustworthy data needed for the evidence-based
decisions that will move our economy forward. Please provide the BLS
with $650 million in fiscal year 2019 so that America's economy can
work at its best for all Americans.
Thank you for your time and consideration of this important agency.

[This statement was submitted by Erica Groshen, Industrial and
Labor Relations School, Cornell University, Chair, The Friends of the
Bureau of Labor Statistics.]
______

Prepared Statement of Campaign for Tobacco-Free Kids
I am Matthew Myers, President of the Campaign for Tobacco-Free
Kids. I am submitting this written testimony for the record in support
of funding for the Office on Smoking and Health (OSH) at the Centers
for Disease Control and Prevention (CDC). We urge the Subcommittee to
include at least $216.5 million for CDC's OSH in the Labor-HHS-Ed
appropriations bill for fiscal year 2019.
Tobacco use remains the leading cause of preventable disease and
death in the United States. More than 480,000 Americans die from
tobacco use each year, and more than 16 million Americans are currently
living with a tobacco-caused disease.\1\ Tobacco use is responsible for
32 percent of heart disease deaths, 30 percent of all cancer deaths, 87
percent of lung cancer deaths, and nearly 80 percent of all chronic
obstructive pulmonary disease (COPD) deaths.\2\ Smoking shortens the
life of a smoker by more than a decade and increases the risk of early
death much more than other risk factors.\3\
---------------------------------------------------------------------------
\1\ U.S. Department of Health and Human Services (HHS), The Health
Consequences of Smoking--50 Years of Progress: A Report of the Surgeon
General, 2014, http://www.surgeongeneral.gov/library/reports/50-years-
ofprogress/.
\2\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014; Centers for Disease Control and
Prevention (CDC) Vital Signs, Cancer and Tobacco Use, Tobacco Use
Causes Many Cancers,'' November 2016. https://www.cdc.gov/vitalsigns/
pdf/2016-11-vitalsigns.pdf.
\3\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014.
---------------------------------------------------------------------------
Given the addictiveness of nicotine, smoking is not simply a matter
of choice. Tobacco use almost always begins during adolescence. Ninety
percent of adult smokers begin as teenagers, or earlier.\4\ As youth
become adults, they typically continue to use tobacco because they have
become addicted to nicotine. Most adult smokers want to quit (nearly 70
percent) \5\ and wish they never started (70 to 85 percent).\6\ But
overcoming an addiction to nicotine is difficult, and tobacco users
often must make multiple quit attempts before they succeed.
---------------------------------------------------------------------------
\4\ Substance Abuse and Mental Health Services Administration
(SAMHSA). Center for Behavioral Health Statistics and Quality. National
Survey on Drug Use and Health (NSDUH), 2014.
\5\ Babb, S., et al., ``Quitting Smoking Among Adults--United
States, 2000-2015,'' MMWR 65(52), January 6, 2017. https://www.cdc.gov/
mmwr/volumes/65/wr/mm6552a1.htm?s_cid=
mm6552a1_w.
\6\ Nayak, P., et al., ``Regretting Ever Starting to Smoke: Results
from a 2014 National Survey,'' International Journal of Environmental
Research and Public Health, 2017; O'Connor, Richard J., et al.,
``Exploring relationships among experience of regret, delay
discounting, and worries about future effects of smoking among current
smokers.'' Substance Use & Misuse 51, no. 9 (2016).
---------------------------------------------------------------------------
Fortunately, we know how to reduce tobacco use. Smoking rates have
been cut by more than half since the first Surgeon General's report on
the harms from smoking in 1964.\7\ According to recent surveys, the
smoking rate among adults declined by one-third and the smoking rate
among high schoolers declined 70 percent between 2000 and 2016.\8\ This
progress has been driven by the implementation of policies and programs
that have proven to be highly effective in preventing youth from
starting to use tobacco products and helping adult tobacco users to
quit.
---------------------------------------------------------------------------
\7\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014.
\8\ Centers for Disease Control and Prevention (CDC), ``Current
Cigarette Smoking Among Adults--United States, 2016,'' MMWR 67(2):53-
59, January 19, 2018; CDC, ``Tobacco Use Among Middle and High School
Students--United States, 2011-2016,'' MMWR, 66(23): 597-603, June 15,
2017, https://www.cdc.gov/mmwr/volumes/66/wr/pdfs/mm6623a1.pdf.
---------------------------------------------------------------------------
These successful efforts to reduce tobacco use have generated
enormous gains for public health. People who would otherwise be
suffering from a tobacco-caused disease are living longer, healthier
lives. Over the past 50 years, tobacco control measures have prevented
at least eight million premature deaths from smoking.\9\ Thirty percent
of the increase in life expectancy between 1964 and 2012 is due to
reductions in smoking, an especially remarkable achievement when one
considers the enormous medical innovations that occurred during this
time.\10\
---------------------------------------------------------------------------
\9\ Holford, T., et al., ``Tobacco Control and the Reduction in
Smoking-Related Premature Deaths in the United States, 1964-2012,''
Journal of the American Medical Association, January 8, 2014: 311(2).
\10\ Holford, T., et al, JAMA, January 8, 2014: 311(2).
---------------------------------------------------------------------------
The CDC's Office on Smoking and Health plays a critical role in
preventing young people from using tobacco products and helping current
smokers to quit. OSH translates science into best practices for
reducing tobacco use, provides funding and technical support to
implement them, and monitors progress in reducing tobacco use rates.
Since 2012, OSH has funded a national media campaign, Tips from
Former Smokers (Tips), to encourage smokers to quit. It features real
people discussing the harsh reality of living with a disease caused by
smoking, and it has proven to be highly successful and cost-effective.
Since the campaign's inception, CDC estimates that millions of
Americans have tried to quit smoking cigarettes, at least 500,000
cigarette smokers have quit for good and about 50,000 people have been
saved from premature death.\11\ It cost just $393 for each year of life
saved, which is considered a ``best buy'' in public health.\12\
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\11\ Centers for Disease Control and Prevention (CDC), Tips From
Former Smokers Making an Impact, Impact Sheet, April 2018. Centers for
Disease Control and Prevention (CDC), fiscal year 2017 Justification of
Estimates for Appropriations Committees http://www.cdc.gov/budget/
documents/fy2017/fy-2017-cdc-congressional-justification.pdf; and CDC,
``Impact of first federally funded anti-smoking ad campaign remains
strong after 3 years,'' March 2016 http://www.cdc.gov/media/releases/
2016/p0324-anti-smoking.html; Centers for Disease Congrol and
Prevention (CDC), ``Tips from Former Smokers, About the Campaign''
https://www.cdc.gov/tobacco/campaign/tips/about/
index.html?s_cid=OSH_tips_D9393.
\12\ Xu, Xin, et al., ``Cost-Effectiveness Analysis of the First
federally Funded Antismoking Campaign,'' American Journal of Preventive
Medicine, 2014.
---------------------------------------------------------------------------
CDC also provides funding to States for quitlines, which provide
telephone-based counseling services to help tobacco users to quit and,
in some States, provide tobacco cessation medications. Smokers who use
quitlines are at least two to three times more likely to succeed than
those who try to quit on their own.\13\
---------------------------------------------------------------------------
\13\ Fiore, MC, et al., Treating Tobacco Use and Dependence: 2008
Update--Clinical Practice Guideline, U.S. Public Health Service, May
2008, http://www.surgeongeneral.gov/tobacco/treating_tobacco_use08.pdf.
---------------------------------------------------------------------------
In addition, CDC provides grants to all 50 States and the
territories to help establish and maintain tobacco prevention and
cessation programs at the State and local level. Comprehensive State
tobacco programs like the ones CDC helps to maintain have been found to
be cost-effective. A study of Washington State's tobacco prevention and
cessation program found that for every dollar spent by the State on
tobacco prevention, the State saved more than $5 in reduced
hospitalization costs.\14\
---------------------------------------------------------------------------
\14\ Dilley, Julia A., et al., ``Program, Policy and Price
Interventions for Tobacco Control: Quantifying the Return on Investment
of a State Tobacco Control Program,'' American Journal of Public
Health, Published online ahead of print December 15, 2011. See also,
Washington State Department of Health, Tobacco Prevention and Control
Program, Progress Report, March 2011, http://www.doh.wa.gov/tobacco/
program/reports/2011ProgReport.pdf. Washington State Department of
Health, Tobacco Prevention and Control Program, News Release,
``Thousands of lives saved due to tobacco prevention and control
program,'' November 17, 2010, http://www.doh.wa.gov/Publicat/2010_news/
10-183.htm.
---------------------------------------------------------------------------
CDC also conducts important surveillance and other research on
tobacco use and its impact on health. For example, the National Youth
Tobacco Survey, which CDC conducts with FDA, found that e-cigarette use
among high school students increased more than ten-fold (from 1.5
percent to 16.0 percent) from 2011 to 2015.\15\
---------------------------------------------------------------------------
\15\ U.S. Centers for Disease Control and Prevention (CDC),
``Tobacco Use Among Middle and High School Students--United States,
2011-2015,'' Morbidity and Mortality Weekly Report (MMWR) 65(14):361-
367, April 14, 2016, http://www.cdc.gov/mmwr/volumes/65/wr/pdfs/
mm6514a1.pdf.
---------------------------------------------------------------------------
We were pleased that the Senate Labor-HHS-Ed appropriations bill
for fiscal year 2018 provided level funding for OSH and that the
Consolidated Appropriations Act of 2018 (Public Law 115-141) provided a
$5 million increase for OSH, bringing overall funding for OSH to $210
million.
Regrettably, the House Labor-HHS-Ed appropriations bill for fiscal
year 2018 would have reduced funding for OSH by nearly 25 percent, from
$205 million to $155 million. Such a significant reduction would have
undermined CDC's efforts to prevent youth from starting to use tobacco
and to help adults to quit. Programs we know are working would have
been curtailed and possibly eliminated. The House's proposed funding
cut would have made it virtually impossible for CDC to continue its
successful and cost-effective Tips media campaign. This funding cut
would also likely have reduced funding to States for quitlines and
State and local tobacco prevention and cessation programs. In whole,
such a funding cut would have led to more young people using tobacco
products, fewer adult tobacco users quitting, and higher future
healthcare costs for treating tobacco-caused disease.
We remain concerned that the President's budget request for fiscal
year 2019 would again eliminate funding for OSH. It would eliminate the
Tips media campaign, eliminate dedicated funding for State quitlines
and State tobacco control programs, and eliminate or seriously weaken
CDC's ability to collect data on tobacco use and identify emerging
threats. While the President's budget request indicates that States
could use funding from a newly created America's Health Block Grant to
reduce tobacco use, there is no guarantee that States would do so, and
States would almost certainly have to substantially cut back existing
tobacco programs since the President's budget request reduces overall
funding for CDC's chronic disease prevention programs.
We urge the Subcommittee to provide at least $216.5 million for OSH
for fiscal year 2019, which is the enacted level for fiscal year 2015.
Without continued attention and resources, we risk undermining the
progress that has been made in reducing the disease and death caused by
tobacco use. We risk more cancers, heart disease, respiratory disease,
and other tobacco-caused diseases and more people dying years earlier
than if they did not smoke. Without urgent action, 5.6 million children
alive today will die prematurely from a smoking-related disease.\16\
---------------------------------------------------------------------------
\16\ HHS, The Health Consequences of Smoking--50 Years of Progress:
A Report of the Surgeon General, 2014.
---------------------------------------------------------------------------
The Federal Government cannot afford to take a hands-off approach
to tobacco use. Tobacco use not only harms the health of tobacco users
but also burdens families, the healthcare system, and government
budgets. It is responsible for approximately $170 billion in healthcare
costs each year. More than 60 percent of these healthcare costs are
paid by government programs such as Medicare and Medicaid.\17\
---------------------------------------------------------------------------
\17\ Xu, X et al., ``Annual Healthcare Spending Attributable to
Cigarette Smoking: An Update,'' American Journal of Preventive
Medicine, 2014.
---------------------------------------------------------------------------
Just as the Subcommittee supports the development of new cures and
treatments for devastating diseases, it should also support programs
that have proven effective at preventing many of those same disease,
including the cancers, heart disease, COPD and other diseases caused by
tobacco. At a time of concern about high healthcare costs, the
Subcommittee should invest in programs that reduce risk factors like
tobacco use that, if left unaddressed, will lead to higher medical
costs for treating preventable diseases in the future.
We appreciate the opportunity to share our views on the importance
of OSH's work and the need to fund the Office on Smoking and Health at
a minimum of $216.5 million, its fiscal year 2015 funding level.

[This statement was submitted Matthew L. Myers,President, Campaign
for
Tobacco-Free Kids.]
______

Prepared Statement of Cannonball Kids' cancer Foundation
Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee, thank you for your dedication to public health and your
continued efforts to adequately and appropriately invest in life-saving
research to keep our Nation's health progressing forward. My name is
Kelly King, and I am the education director at Cannonball Kids' cancer
(CKc), a nonprofit foundation focused on funding innovative and
accessible research for children fighting cancer and educating for
change. On behalf of our foundation, the 40,000 children in the United
States who are actively in treatment for pediatric cancers and the
nearly 1,800 families who will lose a child to cancer in 2018, I am
requesting you make pediatric cancer a greater national priority.
Specifically, I am asking the Subcommittee to request the NCI to create
dedicated categories of funding for the 10 under-researched forms of
pediatric cancer, including relapsed and refractory cases, and direct
$50 million in fiscal year 2019 funds to these new line items.
On April 11, 2018, I was privileged and honored to be in attendance
during the fiscal year 2019 budget hearing of your sister committee in
the U.S. House of Representatives. The focus of this hearing was
testimony from the National Institutes of Health Director Francis S.
Collins, M.D., Ph.D. While I was not able to attend the corresponding
hearing in the Senate, I viewed the video coverage on your committee's
website.
Through those hearings, I gained greater appreciation for some of
our Nation's top priorities in healthcare, such as Alzheimer's,
precision medicine, and the opioid epidemic. I witnessed how integral
this committee is to the upward trend of funding to the NIH and I
respect your commitment to preserving that momentum.
I was also encouraged to hear several members of this committee
raise the topic of pediatric cancer during the hearing, and then to see
emphasis on this disease confirmed by unanimous passing of the
Childhood Cancer STAR Act in both chambers. It is the unwavering
support and attention of champions in the Senate and on this committee,
like Senator Capito, Senator Murray, and Senator Reed, who made that
significant accomplishment possible. I speak for many childhood cancer
advocates when I say we are exceptionally grateful for the committee's
recognition of this problem, its severity, and your willingness to
stand up on our behalf.
In spite of all of the ways I've been bolstered, I wholeheartedly
believe we can still do more for childhood cancer. Private, family-
founded non-profits like CKc are required to exist to fill the funding
gap for pediatric cancer research, especially for early-stage
investigators, due to unnecessarily strong competition for NIH grants.
While our Nation's people can't rely solely on government or industry
to fund this important research, we can do better. That's why I'm
submitting this written testimony. Here are four reasons why the NCI
should be directed to re-allocate funding from other areas to the 10
types of pediatric cancers, and their hundreds of sub-types, that have
seen little change in survivability:
1. Government funding changes lives and saves lives. National
prioritization of health concerns and subsequent, designated Federal
funding has helped our country make great strides in research, leading
to revolutionary treatments and cures for many diseases. Before the
discovery of insulin in the 1920s, children with diabetes rarely lived
longer than 1 year. They also suffered side effects from their disease,
such as blindness, loss of limbs, stroke, heart attacks, and kidney
failure. (Coincidentally, these same conditions are all byproducts of
pediatric cancer treatment, and those who survive often face them.)
Diabetes may not yet be curable and still requires daily maintenance,
but only 1 percent of childhood deaths (or about 35 per year) are now
related to diabetes. This demonstrates it is possible to make drastic
changes in the survival of pediatric diseases!
In oncology, hundreds of drugs have been approved for adult
treatment in the last 40 years. Breast cancer is a supreme example of a
disease that has benefited from these drug developments. Advocacy that
began in the 1980s helped quadruple Federal research funding for breast
cancer during the 1990s. By 2010, the mortality rate from all breast
cancers fell by 36 percent, and Stage I breast cancer now sees nearly
100 percent survival.
By contrast, only four drugs have been developed specifically for
use in children during that same timeframe. Yet, general pediatric
cancer research remains at a dismal 4 percent of the NCI budget.
Additionally, the NIH has previously given individual priority to 12
specific adult cancers, but only two specific pediatric cancers. Those
same two cancers are the only ones that have seen drastic improvements
in survival in recent years, which can presumably be tied to this
subsidy. Namely, childhood leukemia and neuroblastoma have been
allocated top-down Federal research funds since at least fiscal year
2013. Leukemia funding ranged from $67 million to $164 million and
neuroblastoma from $32 million to $40 million. The 5-year survival rate
for acute lymphoblastic leukemia (ALL) was less than 10 percent 50
years ago and is now over 88 percent. In a similar timeframe, the 5-
year survival rate for neuroblastoma increased from 34 percent to 68
percent.
The changes for these cancers are commendable and have helped the
overall pediatric cancer survival rates improve dramatically. In 1975,
just over 50 percent of children diagnosed with cancer survived 5
years. Now, 83 percent of children diagnosed with cancer survive the
same timeframe, as celebrated by Dr. Ned Sharpless, Director of the
NCI, in your Subcommittee's hearing, ``We're curing more and more
kids.''
The successful advances in treating these two forms of pediatric
cancer are a core reason the STAR Act was necessary. Currently, there
are half a million pediatric cancer survivors in the U.S. In addition
to supporting necessary data gathering and management for pediatric
cancer, STAR will help facilitate the study of these survivors' long-
term toxicities as well as the management of the chronic and acute
conditions that arise from it. As such, beyond the requests outlined in
this testimony, I positively urge you to ensure the approved STAR Act
comes to fruition by receiving funding during the appropriations
process.
2. It's time to increase survivability for all forms of pediatric
cancer. Although overall survival rates have increased for pediatric
cancer, survival rates still remain very low for some childhood cancer
types. And as a result, cancer remains the number one killer by disease
of our children. In fact, cancer accounts for more deaths than all
other childhood diseases combined. Additionally, childhood cancer
incidence rates continue to rise, indicating that funding is not yet
aligned with need. Dr. Sharpless highlighted this sentiment in the
hearing, stating ``It's not enough to make progress against some
cancers. We need to make progress against all cancers.'' He added, ``As
the NCI, we need to focus not only on the cancers where we're having
success, but perhaps even more so on the ones that have been
recalcitrant and refractory to therapy to date.''
Primary brain tumors are the most common solid tumor of childhood,
and brain cancer has now replaced leukemia as the leading cause of
cancer death among one- to 19-year-olds. Yet there remains no dedicated
category of NIH funding specifically for childhood brain tumors.
As an example, there are zero survivors of diffuse intrinsic
pontine glioma (DIPG), and, at diagnosis, families are told their child
has less than 1 year to live. In 1961, astronaut Neil Armstrong's 2-
year-old daughter, Muffy, was diagnosed with DIPG. She received the
exact same prognosis that DIPG patients are given today and was
administered much of the same treatment. She died on January 28, 1962.
It is unacceptable and unnecessary that nothing has changed for DIPG in
57 years. It's time we do for children suffering from brain and other
solid tumors what we've done for leukemia, neuroblastoma, and other
pediatric diseases like diabetes.
3. There's parallel legislative precedent. Gun violence is a heated
topic of discussion in our country. The news is consumed with reports
of gun control, mass shootings, and murder. Fittingly, Congress echoes
this sentiment of concern; and, the recent omnibus appropriated funding
to the CDC for research on the causes of gun violence. Every day, four
children are deliberately killed with guns. This is unimaginable and
tragic, but, shockingly, this number is LESS than the number of deaths
per day from pediatric cancer! However, the news media has not
expressed outrage regarding pediatric cancer in the way they have for
gun violence, nor did the omnibus expressly acknowledge it. If the
Appropriations Committee can designate funds specifically for gun
violence research, then I believe they should also have the means to
further support research into a disease killing more children each day:
pediatric cancer.
4. It's personal. There are many other facts and statistics I could
use to support our request for additional funding. However, what
matters most is that behind every statistic is a child's life, a
family, who was impacted by pediatric cancer. The numbers aren't just
numbers. They represent real life. And that real life can be
unimaginable to you if you have not been personally touched by this
disease. Many of the issues and concerns raised by the Subcommittee
members during the hearings were a result of their personal experiences
or interactions with family members and constituents. I'd like to help
make childhood cancer personal to you.
1. Meet Nolan. My 3-year-old son, Nolan, died on April 1, 2017
from high-risk, Stage IV hepatoblastoma (the most common form
of pediatric liver cancer). After 15 months of surgeries and
treatments, we were told there were no clinical trials
available, and we were left to face our only option of
palliative care. However, before we could begin navigating this
``wait to die'' approach, Nolan's heart stopped unexpectedly as
a result of toxicity from the 35-year-old chemotherapy drugs
that failed to save him. Hepatoblastoma has a 20 percent
survival rate when the disease has metastasized, yet it
receives no dedicated NIH funding and there are no available
treatment options for relapsed hepatoblastoma.
2. Meet Emmi Grace. Monica Angel, education liaison at CKc, lost
her daughter, Emmi Grace, to atypical teratoid/rhabdoid tumor
(AT/RT) at 5 months of age. AT/RT is the most common malignant
central nervous system tumor in children less than 6 months old
and the survival rate is dismal, with a reported median
survival of less than 1 year. Yet there is no dedicated
category of NCI funding for AT/RT or any brain cancers specific
to children. Emmi Grace's treatments, some of which were
designed for adult, male testicular cancer, were not meant for
the tiny, rapidly developing organs of an infant. They caused
multi-organ failure just 2 months after diagnosis.
3. Meet Cannon. Melissa Wiggins, executive director of CKc, has a
6-year-old son who is the namesake of our foundation and is now
considered a ``pediatric cancer survivor.'' He was diagnosed at
20 months old with high-risk, Stage IV neuroblastoma. At the
time of his diagnosis, his parents were told he had a 50
percent chance of survival. However, by the time he finished
treatment 3 years later, a new drug specifically for pediatric
neuroblastoma had received FDA approval, and survival rates
climbed to 68 percent. However, his treatments have left him
with lifelong disabilities and obstacles, such as hearing aids,
the inability to naturally father a child, small stature,
visible scars, and an eight-times-higher mortality rate than
his peers.

It's not a coincidence that our foundation's statistics mirror
overall statistics. The child who faced a cancer receiving
institutionally-directed NCI funding survived. The two who faced
cancers without NCI-controlled funding did not. Yet Nolan, Emmi Grace,
and Cannon are not just statistics. Their stories are real. My family's
pain is real. My other two sons will grow up without their youngest
brother. My husband and I will grow old with one less child. The proper
order of life has been disrupted. And unless we place a higher priority
on researching pediatric cancers, stories like ours will be repeated .
. . daily. Every day in the U.S., 42 children will be diagnosed with
cancer, and five are tragically lost. Ninety-five percent of those who
survive 5 years will have a significant health issue by the time they
are 45, which is typically the effect of hand-me-down adult treatments.
I cannot accept this as the status quo in the United States in
2018. I know that if we continue to appropriate funds to less-
understood categories of childhood cancer, it is possible to increase
survivability and quality of life for survivors. I strongly urge the
Subcommittee to place a higher priority on those childhood cancers,
which are less studied and have little or no effective treatment
options, particularly in relapsed or refractory cases. The first step
toward doing so is a reallocation of $50 million in fiscal year 2019
funds from other diseases with improved survivability to basic science
in pediatric cancers. These funds should be distributed evenly as $5
million budget items for each of the 10 primary pediatric cancer types
that do not currently receive top-down, directed funding. Basic
research is the foundation that will help us better understand these
distinct, difficult-to-treat diseases and eventually provide access to
targeted, less toxic, and curative therapies for more children in our
country.
This approach has worked before. It's time for change, there's
precedent, and it's personal. It may be too late for my son, Nolan, but
I refuse to accept the past as the only course of action for the
future. We at Cannonball Kids' cancer believe it is unacceptable that
cancer remains the number one problem in pediatric healthcare, and we
also declare it unnecessary. Let this be the time in history that
people remember as the turning point for childhood cancer.

[This statement was submitted by Kelly A. King, Education Director,
Cannonball Kids' cancer Foundation.]
0-____

Prepared Statement of CAST
CAST is a non-profit that uses educational technology coupled with
expertise in the learning sciences to ensure all learners can and do
reach their full potential. Our primary lever for change is Universal
Design for Learning (UDL), a framework pioneered at CAST focused on
harnessing technology and instructional practices to remove barriers to
learning faced by individuals in digital as well as physical settings.
UDL encourages the proactive design of flexible learning environments
that anticipate learner variability and provides alternative routes or
paths to success; UDL acknowledges that variability across all learners
is the norm rather than the exception.
In fiscal year 2019, CAST requests the following: (1) U.S.
Department of Education (ED)--continue to fund all education programs
at levels provided in the bipartisan fiscal year 2018 Consolidated
Appropriations Act, and prioritize UDL as a necessary component of all
competitive grants made by ED. (2) U.S. Department of Labor (DOL)--
promote through report language that all Federal investments in
technical assistance for career and workforce training incorporate the
principles of UDL as defined in section 103(a)(24) of the Higher
Education Act,\1\ and as referenced and endorsed as a best practice in
the National Technology Plans of 2010 and 2016, as well as the National
Ed Tech Developer's Guide of 2015.\2\
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\1\ Sec. 103(a)(24), PL 110-315, Universal Design for Learning
means ''... a scientifically valid framework for guiding educational
practice that-(A) provides flexibility in the ways information is
presented, in the ways students respond or demonstrate knowledge and
skills, and in the ways students are engaged; and (B) reduces barriers
in instruction, provides appropriate accommodations, supports, and
challenges, and maintains high achievement expectations for all
students, including students with disabilities and students who are
limited English proficient''.
\2\ See http://www.cast.org/whats-new/news/2016/udl-in-the-
essa.html#.Wob36WbGzqQ.
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In its 30-year history, CAST has brought UDL into K-12 schools,
postsecondary settings and increasingly into workforce development and
the workplace. CAST's work is grounded in the vision of creating a
world where ``learning has no limits'' whether it be in K-12 schools,
colleges, apprenticeships, or the workforce. CAST works in partnership
with other organizations that also focus on improving access to and
inclusion in learning and work. Research, development and
implementation of UDL is supported by multiple Federal agencies, state
education systems, school districts, and private foundations.
Universal Design for Learning (UDL) is entering its third decade
influencing policy, research, and practice. Substantial Federal
investments in UDL began in the late 1990's and have steadily expanded
since then. Over $150 million has been invested via ED's competitive
grants programs to ensure that flexible and accessible learning
materials are made available to all the nation's K-12 students and UDL
has emerged as a key element in Federal education policy.\3\
---------------------------------------------------------------------------
\3\ See: PL 110-315, PL 114-95.
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As a flexible approach to addressing learner variability, UDL is
organized around three core principles: (1) multiple means of
engagement, (2) multiple means of representation, and (3) multiple
means of expression and action. The UDL core principles consider the
variability of all learners--including learners who were formerly
relegated to ``the margins'' of our educational systems but now are
recognized as part of the predictable spectrum of variation among
individuals. These principles guide the design of learning environments
with a deep understanding and appreciation for individual variability.
UDL is not a prescriptive checklist or formula with set methods and
tools to be applied in every situation.
Powerful digital technologies applied using UDL principles enable
easier and more effective customization of curricula for learners.
Advances in technology and the learning sciences have made ``on-the-
fly'' individualization of curricula possible in practical, cost-
effective ways, and many of these technologies have built-in supports,
scaffolds, and challenges to help learners understand, navigate, and
engage with the learning environment. While technologies are not the
only means of implementing UDL, their use can free instructors to be
creative and resourceful in designing flexible learning environments:
providing additional challenges for advanced students or additional
support to those that are struggling.
Interest in UDL in workforce development continues to grow.
Specifically, UDL is a required component in online and technology-
enabled courses developed by all grantees of the $2 billion Trade
Adjustment Assistance Community College & Career Training grant program
from DOL and is a foundational element of large-scale employment
training initiatives like YouthBuild and Jobs for the Future. An
ongoing 2018 Schwab Foundation-funded partnership between CAST and
Stanford University has established the UDL Innovation Studio \4\ to
explore and research ways to use UDL to increase the postsecondary
success of diverse learners and implement expanded and scalable
opportunities to aid adults in successful workforce transition. CAST's
UDL in Higher Education \5\ initiative prompts faculty designing career
pathway training to plan for ways in which industry partners and
instructors can collaborate on course development to create authentic,
engaging scenarios that enable students to learn skills in the context
of a profession. UDL has also been introduced as a method to better
serve all trainees in registered apprenticeships by the apprenticeship
training leadership of the carpenters, sheet metal workers, and
laborers unions in Boston, Massachusetts.
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\4\ See https://slc.stanford.edu/getting-started/serving-community/
students.
\5\ See http://udloncampus.cast.org/home#.Wte8tYjwY2w.
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There is a great need for workforce-related training and assistance
to assure we prepare adults to be lifelong learners, to gain the skills
and knowledge for today's careers as well as learning skills that will
help them evolve as the needs of the workplace shift. Employers need
highly skilled and qualified employees, and many are seeking ways to
diversify and expand their workforce. The UDL framework proactively
supports this by allowing a corporation, campus, business or any
organization to strategically identify the unique ways it can meet
identified needs and goals. Recent examples are: the Tennessee Board of
Regents has mandated UDL training for all college faculty through its
five-year accessibility plan; and in Syracuse, New York, Onondaga
Community College has infused UDL in its new Pathways to Careers
program.\6\
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\6\ See: http://www.sunyocc.edu/
index.aspx?menu=964&collside=544&id=35796.
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Increasingly, education and training programs of every level and
type are incorporating significant digital and online components. Yet,
despite the promise of flexibility, customized learning solutions, and
anywhere/anytime educational opportunity often associated with digital
learning, the reality is that the experience for many of today's
learners has been at best underwhelming, and at worst detrimental.
Leveraging the UDL framework is essential to mitigating the current
impact of digital learning, especially for learners with challenges--
whether they be based in poverty, language, disability or something
else. The population of digital learners that requires such training is
predictably diverse and every federally-supported training program must
plan for that.
It is imperative that all learners, including first-time career
seekers or adults desiring new opportunities, have access to workforce
development and career pathway strategies and programs that are
designed from the beginning with the variability of their learning in
mind. Continuing to invest in innovations and effective implementation
of UDL in education while prioritizing the need to include UDL as part
of the infrastructure of workforce training makes sense. This is the
ideal time for Congress to recognize the payoff investments in UDL will
continue to make for all learners.
CAST thanks you for the opportunity to provide a statement offering
recommendations and reminds you of the emphases we hope to see in
fiscal year 2019: (1) U.S. Department of Education(ED)--continue to
fund all education programs at levels provided in the bipartisan fiscal
year 2018 Consolidated Appropriations Act and prioritize UDL as a
necessary component of all competitive grants made by ED. (2) U.S.
Department of Labor (DOL)-- promote through report language that all
Federal investments in technical assistance for career and workforce
training incorporate the principles of UDL as defined in section
103(a)(24) of the Higher Education Act, and as referenced and endorsed
as a best practice in the National Technology Plans of 2010 and 2016,
as well as the National Ed Tech Developer's Guide of 2015.
______

Prepared Statement of the CDC Arthritis Coalition
On behalf of the 54 million adults and children living with doctor-
diagnosed arthritis in the United States, the CDC Arthritis Coalition
thanks Chairman Blunt and Ranking Member Murray for the opportunity to
provide written testimony to the Appropriations Subcommittee on Labor,
Health and Human Services (HHS), and Education and Related Agencies for
fiscal year 2019. To maintain the commitment to arthritis disease
management, we respectfully request $16 million as a line item for the
Centers for Disease Control and Prevention (CDC) Arthritis Program for
fiscal year 2019.
We are concerned about the impact the President's budget would have
on people with arthritis. The budget cuts nearly $900 million from the
CDC, including $138 million from the Chronic Disease Division, which
contains the Arthritis Program. Further, the budget would create a
block grant, allowing States to fund chronic disease programs as they
choose. In the absence of categorical funding, a block grant would
disadvantage smaller programs like the Arthritis Program. Arthritis is
the leading cause of disability in the United States resulting in tens
of billions of dollars in direct and indirect costs to States. Even so,
we fear States would not prioritize arthritis funding and the functions
of the program could cease to exist as we know them.
The CDC Arthritis Program is the only Federal program dedicated
solely to arthritis, a chronic disease that affects 1 in 4 Americans.
The program funds States, national partners and public health research
with the goal of understanding prevalence and targeting evidence-based
interventions to improve the health outcomes of people living with
arthritis. Disease management through proven interventions like
exercise programs and education is essential to helping people manage
their symptoms and prevent worsening of disease. Proper disease
management can save hundreds of millions of dollars in direct medical
costs from preventable joint replacements, and indirect costs from
disability compensation and lost productivity.
Below are some examples of the direct impact the CDC Arthritis
Program has on communities and on people with arthritis.
Grant funding to States allows them to tailor programs to the needs
of their communities. In Kentucky, the program's focus from 2013-2014
was to enhance its partnership with the Kentucky Department for Aging
and Independent Living, and expand the number of community program
leaders and course sites that provide evidence-based arthritis
programs. During this time, efforts increased the number of new
participants by approximately 58 percent, compared to the previous
year's reach.
In Rhode Island, the Arthritis Program developed the Community
Health Network, a centralized referral system that connects the
healthcare system to evidence-based programs located in the community.
As a result, the Rhode Island Arthritis Program reaches citizens in
every county of the State through this network. We know that these
programs are having a positive impact. One Rhode Island participant
wrote, ``I was in so much pain before this program that I couldn't walk
half a block. I was hurting from arthritis in every joint. I now walk 3
miles every day.'' Many others have written about their experience with
this program, noting they are able to move more with less pain and have
found great benefit from participating in the program.
In addition, grant funding to national organizations allows
evidence-based programs and other resources to be scaled up beyond the
12 funded States and reach more people with arthritis. The Arthritis
Foundation's Help Line and Resource Finder are available 24 hours a
day, 7 days a week to all people with arthritis, and offer people
personal assistance, in addition to connecting them to community
resources. The Resource Finder includes information on local evidence-
based programs such as Walk with Ease and EnhanceFitness.
YMCA of the USA, a CDC Arthritis Program national partner, has
offered EnhanceFitness since 2012 and, as of March 2018, has served
over 25,000 participants in 44 States. EnhanceFitness is a proven
community-based senior fitness and arthritis management program that
helps older adults become more active, energized and empowered for
independent living. In addition to empowering older adults for
independent living, the program has shown a substantive return on
investment. A 2013 CMS study showed that EnhanceFitness participants
had fewer hospitalizations and saved $945 in healthcare costs per year,
compared to non-participants.
The best case for the success of programs like EnhanceFitness comes
from participants themselves. A participant in Michigan had always been
active until rheumatoid arthritis ``attacked my body with a
vengeance.'' She was unable to lift things, walk far, or even get out
of a chair without assistance. She said, ``When the second class
started I was able to get in...it is so wonderful. I have progressed so
far I cannot believe it...I am now able to get up and down in a chair
repeatedly...my whole body feels better. The exercise also helps with
energy and I feel more energetic and positive. I cannot say enough good
things about this program....I have to have this class to be able to
keep moving and help decrease pain.''
Being able to assess the impact of arthritis, to substantiate
positions, and make decisions based on facts begins with data on the
prevalence, societal, and economic costs of arthritis. The CDC
Arthritis Program undertakes the lead work in detailing the prevalence
of arthritis in this country for The Burden of Musculoskeletal Diseases
in the United States: Prevalence, Societal and Economic Cost (BMUS)
(www.boneandjointburden.org ). Published by the United States Bone and
Joint Initiative, this is a critical publication for researchers, and
for health policy analysts.
Because of the CDC Arthritis Program, we now have a rich data set
on everything from activity limitations (24 million adults are limited
due to arthritis) to co-morbidities (49 percent of adults with heart
disease and 47 percent of adults with diabetes have arthritis). We also
know that about 2 out of 5 adults with arthritis can improve their
function by 40 percent by being physically active. Despite all that is
known about the importance of physical activity, 1 in 3 adults with
arthritis are inactive and only 1 in 10 have taken part in physical
activity programs. This exhibits a clear need to expand the CDC
Arthritis Program's resources and partnerships with States and national
organizations.
Again, we thank you for the opportunity to provide written comment
to the Subcommittee. As you write the fiscal year 2019 Labor-HHS-
Education appropriations bill, we urge you to support our goal of
reducing the impact of arthritis by funding the CDC Arthritis Program
at $16 million. Please contact Vincent Pacileo, Director of Federal
Affairs at the Arthritis Foundation, at [email protected] with any
questions.
______

Prepared Statement of the CDC Coalition
The CDC Coalition is a nonpartisan coalition of more than 140
organizations committed to strengthening our nation's prevention
programs. We represent millions of public health workers, clinicians,
researchers, educators and citizens served by CDC programs. We believe
Congress should support CDC as an agency, not just its individual
programs and urge a funding level of $8.445 billion for CDC's programs
in fiscal year 2019. We are grateful for the important increases
provided for CDC programs in the fiscal year 2018 omnibus bill and urge
Congress to continue efforts to build upon these investments to
strengthen all of CDC's programs. We continue to oppose any effort to
repeal or cut the Prevention and Public Health Fund which currently
makes up approximately 10 percent of CDC's budget. Congress must ensure
that the CDC's budget remains whole in the face of these efforts that
threaten funding for many CDC programs. We also strongly oppose all of
the proposed cuts to CDC programs contained in the president's fiscal
year 2019 budget proposal and urge the subcommittee to reject them.
CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the Zika
virus to playing a lead role in the control of Ebola in West Africa and
detecting and responding to cases in the U.S., to monitoring and
investigating disease outbreaks to pandemic flu preparedness to
combating antimicrobial resistance, CDC is the nation's--and the
world's--expert resource and response center, coordinating
communications and action and serving as the laboratory reference
center for identifying, testing and characterizing potential agents of
biological, chemical and radiological terrorism, emerging infectious
diseases and other public health emergencies. CDC serves as the lead
agency for bioterrorism and other public health emergency preparedness
and response programs and must receive sustained support for its
preparedness programs. Given the challenges of terrorism and disaster
preparedness we urge you to provide adequate funding for the Public
Health Emergency Preparedness grants which provide resources to our
state and local health departments to help them protect communities in
the face of public health emergencies. We urge you to provide adequate
funding for CDC's infectious disease, laboratory and emergency
preparedness and response activities in order to ensure we are prepared
to tackle both ongoing challenges and other public health challenges
and emergencies that may likely arise during the coming fiscal year.
Injuries are the leading causes of death for people ages 1-44.
Unintentional and violence-related injuries, such as older adult falls,
firearm injury, child maltreatment and sexual violence, account for
nearly 27 million emergency department visits each year. In 2013,
injury and violence cost the U.S. $671 billion in direct and indirect
medical costs. In 2016, opioids killed more than 42,000 individuals
nationwide. CDC provides states with resources for opioid overdose
prevention programs and to ensure that health providers to have the
information they need to improve opioid prescribing and prevent
addiction and abuse. The National Center for Injury Prevention and
Control must be adequately funded to conduct research, prevent
injuries, and help save lives.
In 2016, over 635,000 people in the U.S. died from heart disease,
the nation's number one, accounting for about 23 percent of all U.S.
deaths. More males than females died of heart disease in 2016, while
more females than males died of stroke that year. Stroke is the fifth
leading cause of death and is a leading cause of disability. In 2016,
over 142,000 people died of stroke, accounting for about one of every
19 deaths. CDC's Heart Disease and Stroke Prevention Program,
WISEWOMAN, and Million Hearts work to improve cardiovascular health.
Nearly 1.7 million new cancer cases and over 600,000 deaths from
cancer are expected in 2017. In 2014 the direct medical costs of cancer
was $87.8 billion. The National Breast and Cervical Cancer Early
Detection Program helps millions of low-income, uninsured and medically
underserved women gain access to lifesaving breast and cervical cancer
screenings and provides a gateway to treatment upon diagnosis. The
Colorectal Cancer Control Program focuses on improving screening rates
among targeted, low-income populations aged 50 --75 years in targeted
states and territories through evidence-based interventions using
partner health systems. CDC funds grants to all 50 states, DC, 7 tribes
and tribal organizations, and 7 U.S. territories and Pacific Island
jurisdictions to develop comprehensive cancer control plans, bringing
together public and private stakeholders to set priorities and
implement cancer prevention and control activities to address each
state's particular needs.
Cigarette smoking causes more than 480,000 deaths each year. CDC's
Office of Smoking and Health funds important programs and education
campaigns such as the Tips From Former Smokers campaign which has
already helped more than 500,000 individuals quit smoking and millions
more to make a serious quit attempt. We must continue to support this
and other vital programs to reduce the enormous health and economic
costs of tobacco use in the U.S.
Of the more than 29 million Americans living with diabetes, more
than 7 million cases are undiagnosed. Each year, about 1.5 million
people are 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 U.S. The total direct and indirect
costs associated with diabetes were $327 billion in 2015. We urge you
to provide adequate resources for the Division of Diabetes Translation
which funds critical diabetes prevention, surveillance and control
programs.
Obesity prevalence in the U.S. remains high. More than one-third of
adults are obese and 18.5 percent of children ages of 2 to 19 are
obese. Obesity, diet and inactivity are cross-cutting risk factors that
contribute significantly to heart disease, cancer, stroke and diabetes.
The Division of Nutrition, Physical Activity and Obesity funds programs
to encourage the consumption of fruits and vegetables, encourage
sufficient exercise and develop other habits of healthy nutrition and
physical activity and must be adequately funded.
Arthritis is the most common cause of disability in the U.S.,
striking more than 54 million Americans of all ages, races and
ethnicities. CDC's Arthritis Program helps address this growing public
health challenge and works to improve the quality of life for
individuals affected by arthritis and we urge you to support adequate
funding for the program.
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 1.2 million Americans are living
with HIV with 12.8 percent undiagnosed. Prevention of HIV transmission
is the best defense against the AIDS epidemic. Sexually transmitted
diseases continue to be a significant public health problem in the U.S.
Nearly 20 million new infections occur each year. STDs, including HIV,
cost the U.S. healthcare system almost $16 billion annually.
The National Center for Health Statistics collects 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 must be
adequately funded.
CDC's REACH program helps states address serious disparities in
infant mortality, breast and cervical cancer, cardiovascular disease,
diabetes, HIV/AIDS and immunizations and we urge the committee to
provide continued funding for these important activities.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. Childhood immunizations provide one of the best
returns on investment of any public health program. For every dollar
spent on childhood vaccines to prevent thirteen diseases, more than $10
is saved in direct and indirect costs. Over the past 20 years, CDC
estimates childhood immunizations have prevented 732,000 deaths and 322
million illnesses. We urge you to provide adequate funding for the
Section 317 Immunization program.
Birth defects affect one in 33 babies and are a leading cause of
infant death in the U.S. Children with birth defects often experience
lifelong physical and mental disabilities. Over 500,000 children are
diagnosed with a developmental disability and about 53 million adults
in the U.S live with a disability. The National Center on Birth Defects
and Developmental Disabilities conducts programs to prevent birth
defects and developmental disabilities and promote the health of people
living with disabilities and blood disorders.
The National Center for Environmental Health works to control
asthma, protect from threats associated with natural disasters and
climate change, reduce, monitor and track exposure to lead and other
environmental health hazards and ensure access to safe and clean water.
We urge you to support adequate funding for all NCEH programs.
In order to meet the many ongoing public health challenges facing
the nation, including those outlined above, we urge you to support our
fiscal year 2019 request of $8.445 billion for CDC's programs.

[This statement was submitted by Don Hoppert, Director of
Government
Relations, American Public Health Association.]
______

Prepared Statement of the Child Welfare League of America
The Child Welfare League of America offers the following testimony
requesting increased funds for the following six programs under the
supervision of the Administration for Children and Families (ACF):
Child Welfare Services (CWS), Promoting Safe and Stable Families, the
Adoption and Kinship Incentives Fund, the Adoption Opportunities Act,
the Child Abuse Prevention Treatment Act State grants, the Community-
Based Child Abuse Prevention program.
In February, Congress passed the Family First Prevention Services
Act (P.L. 115-123). The legislation has potential to expand services
that can prevent the placement of children into foster care. It
challenges States to reduce the number of children and youth in
congregate placements. It will be a challenge to States to build the
capacity and access to services (mental health, substance use, and in-
home services) and to build the infrastructure of services and
providers.
The challenge is against a backdrop of ever increasing foster care
numbers driven by the opioid epidemic in parts of the country. Since
2012 the number of children in foster care has increased by 10 percent
to 437,000 in 2016. CWLA believes it is critical for Congress to fully
fund six programs to both build capacity to effectively implement the
Family First Act, and help address the crisis many communities are
facing as foster care placement demands explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care but does not fund services to
prevent child abuse and neglect. Child welfare strategy must
significantly increase funding for child abuse prevention. We urge
appropriators to focus more attention on primary prevention through the
Child Abuse Prevention and Treatment Act (CAPTA) and the Community-
Based Child Abuse and Neglect Prevention (CB-CAP) program.
CWLA calls on Congress to fully fund Child Welfare Services from
$269 million to $325 million and Promoting Safe and Stable Families
from $99 million in discretionary funding to $200 million; increase
funding to the Adoption Opportunities Act to $60 million; fully fund
the Adoption and Kinship Incentives Fund at $75 million; fund the Child
Abuse Prevention and Treatment Act (CAPTA) at $120 million in State
grants and double funding the Community-Based Grants for the Prevention
of Child Abuse and Neglect/CB-CAP at $80 million.
Impact of Opioids on Child Abuse and Neglect and Foster Care
Earlier this year HHS through the Secretary of Planning and
Evaluation conducted an analysis of child welfare data and supplemented
that work with field level research. Some of the key findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate and a 10 percent
increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While in past drug epidemics family and communities could fill some
of the gaps, today agencies report that family members across
generations may be experiencing substance use problems forcing
greater reliance on State custody and non-relative care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history, and addressing
substance abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children longer in care which keeps existing homes
full and unable to accept new placements.
preventing child maltreatment
The Child Abuse Prevention and Treatment Act (CAPTA) State Grants
Investing in prevention is less costly to society and the
government than trying to treat problems later. Successful prevention
of child maltreatment means better outcomes for children and can
prevent the need for future intervention services or foster care.
We are pleased with the 2018 $60 million increase for CAPTA to $85
million. As Congress looks to implement CAPTA provisions for plans of
safe care, we ask the Committee to appropriate a full $120 for CAPTA
State grants. The Family First Act provides important intervention
services to prevent foster care placements. It is the role of CAPTA and
CB-CAP to fund the prevention of child abuse.
The 1974 Child Abuse Prevention and Treatment Act (CAPTA) has
helped establish national standards for reporting and response
practices for States to include in their child protection laws. CAPTA
is the only Federal legislation exclusively dedicated to preventing,
assessing, identifying, and treating child abuse and neglect.
Successful prevention means better outcomes for children and can
prevent the need for intervention services such as foster care.
According to Prevent Child Abuse America, child abuse and neglect
affects over 1 million children every year. Child abuse and neglect
costs our Nation $220 million every day through increased
investigations, foster care, healthcare costs, and behavioral health
costs and treatment. Additional costs may include special education,
juvenile and adult crime, chronic health problems, and other costs in a
life span. According to PCA, we paid $80 billion to address child abuse
and neglect in 2012. Funding CAPTA State grants beyond the small
allocation of $25 million in recent years can help develop greater
accountability and a stronger continuum of child prevention and child
protection.
The Community-Based Grants for the Prevention of Child Abuse and
Neglect (CB-CAP)
Another key prevention program is the Community-Based Grants for
the Prevention of Child Abuse and Neglect (CB-CAP), which provides
funds to States to support, develop, operate, and expand a network of
community-based, prevention-focused family support programs. Funds
coordinate family resources among a range of local public and private
organizations.
CWLA asks for a doubling of funds from $40 million to $80 million.
The advantage of this increase is that it is community-based, it is
targeted to prevention and it is designed to leverage outside sources
of funding. 70 percent of funding is allocated to States based on child
population and 30 percent is based on leveraged State, Federal and
private funds. The minimum grant award is $200,000 and States must meet
minimum 20 percent cash match (not in-kind).
In 2016, the National Resource Center for CB-CAP, (FRIENDS), funded
activities covered over 295,000 adults and caregivers; 289,000 children
and 200,000 families including those with disabilities. Over 29.4
million families were reached through public awareness activities
funded by CBCAP. These services included 21,697 parents and 19,710
children with disabilities.
Each State application must describe actions the lead agency
(frequently a Children's Prevention Trust Fund) will take to advocate
systemic changes in State policies, practices, procedures and
regulations to improve the delivery of community-based child abuse and
neglect prevention programs and activities designed to strengthen and
support families to prevent child abuse. Some of the recent work
includes: 22 States working with tribes or tribal organizations, 14
States working on human trafficking initiatives, 43 States providing
outreach and/or local programs to rural populations, and 33 States
using CBCAP funds for fatherhood initiatives and programs.
A doubling of funding will support a significant expansion in the
number of children and families served. More States might be able to
move toward a comprehensive service system, particularly where family
needs are more challenging, complex and complicated. Small States that
have low child populations and, as a result receiving the lowest
amounts from CBCAP, would likely be able to increase their ability to
provide services that would show greater impact.
This doubling of funding could also assist in addressing a need for
CBCAP State lead agencies to evaluate their efforts to know what is
working, to refine and adjust services as needed and to ensure their
services are the best fit for their population. In addition to
supporting proven effective strategies, it has always been the role of
CBCAP lead agencies to identify, assess and fund emerging, innovative
ideas and to evaluate them to determine whether continued funding is
warranted. This will help in the development of programs to be
replicated in Family First.
family first act
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community-based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post-discharge services for children
leaving institutional care. Child welfare agencies need to find and
support more family-based foster care homes. These four funds can help
States develop evidence-based services that will meet the laws ``well-
supported,'' ``supported,'' and ``promising'' standards and can assist
the coordination of community based behavioral health and human
services.
Child Welfare Services (CWS), Title IV-B part 1
We ask for $325 million for Child Welfare Services, the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet these evidence standards.
Promoting Safe and Stable Families (PSSF), Title IV-B part 2
We also asking for full funding of $200 million for Promoting Safe
and Stable Families. Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
The Adoption Opportunities Act
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently to promote adoptions of
older youth in foster care and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post adoption services to families.
The Adoption and Kinship Incentive Fund
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014 it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has been not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. Your 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018,
this September, there will have $25 million remaining. That will likely
fall short to fully fund the incentives. And we again ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services. These
funds can be used by States to build both the evidence-based adoption
services include post-adoption counseling and services that can prevent
and reduce adoption disruption. CWLA thanks you for this consideration
and stands ready to respond to your questions and concerns.

[This statement was submitted by John Sciamanna, Vice President of
Public Policy, Child Welfare League of America.]
______

Prepared Statement of Christopher & Dana Reeve Foundation
Thank you for this opportunity to submit testimony in support of an
appropriation of $8,700,000 for the Paralysis Resource Center (PRC)
within the Administration for Community Living.
I am proud to submit this testimony on behalf of the 1 in 50
individuals living with paralysis in the United States, who rely on
programs like the Paralysis Resource Center to live independent and
empowered lives. The Reeve Foundation has operated the Paralysis
Resource Center for 16 years, competing in a rigorous, competitive
bidding process every 3 years for renewal of the contract. For fiscal
year 2019, we request a funding level of $8.7 million for the Paralysis
Resource Center, which would restore the PRC to previous funding levels
and is an increase of $1 million over the fiscal year 2018 omnibus.
Despite its tremendous success, the PRC has been recommended for
elimination in the President's budget for the second year in a row. The
proposed justification is that its initiatives ``could be carried out
with other existing funding streams to deliver services more
efficiently.'' The PRC is the only program of its kind that directly
serves individuals living with spinal cord injury, MS, ALS, stroke,
spina bifida, cerebral palsy and other forms of paralysis. Attempting
to replicate the PRC's unique, well-established and thriving programs
would take years and result in greater costs--precisely the opposite of
what the Administration's budget aims to do.
Paralysis can happen to anyone at any time. According to the
Cleveland Clinic,
``A person can be born with paralysis due to a birth defect such as
spina bifida, which occurs when the brain, spinal cord, and/or
the covering that protects them do not form the right way. In
most cases, people get paralysis as the result of an accident
or a medical condition that affects the way muscles and nerves
function. The most common causes of paralysis include stroke,
spinal cord injury, head injury and multiple sclerosis.''

All too often, when someone suffers an accident that leads to
paralysis, they are unaware of existing communities that can support
them and their caregivers. When my father, Christopher Reeve, was
paralyzed from the neck down due to a spinal cord injury in 1995, we
found ourselves in total darkness as to what to do next; as my
stepmother, Dana Reeve, would later say, it was like trying to land on
the moon without a map. There was no phone number to call for guidance
or help. There were no experts reaching out to connect us to the right
rehabilitation facilities, or discuss how we could support his return
home and ongoing well-being. There was certainly no promise that an
individual living with that level spinal cord injury could lead a full
and active life as a father and husband. But, instead of accepting that
life with paralysis would be full of limitations, my father dreamed of
a brighter future.
That was the genesis of the Christopher & Dana Reeve Foundation: my
father's dream to elevate the needs and rights of the 5.4 million
Americans living with paralysis. But my father was far from alone. The
real drive behind the Paralysis Resource Center came from my
stepmother, Dana. As a caregiver herself, she knew that paralyzed
individuals and caregivers around the country need a centralized place
to call for resources and expertise.
Since the PRC opened its doors in 2002, it has served as a free,
comprehensive, national source of informational support for people
living with paralysis and their caregivers. Our work is deeply aligned
with ACL's mission to empower people living with disabilities and older
adults to live independently and participate in their communities
throughout their lives.
The PRC's Core Programs
Information Specialists.--One of the PRC's most essential functions
is the team of certified, trained Information Specialists who provide
personalized support on how to navigate the challenges of life with
paralysis. This team of experts, many living with paralysis themselves,
is often the first port of call for individuals who are newly injured
or diagnosed. They are trained to answer any question related to
paralysis, including Spanish language inquiries.
When Rutgers college football star Eric LeGrand sustained a spinal
cord injury that left him paralyzed from the neck down, his mother had
no idea how to care for her son when he returned home. She leaned on
the PRC's Information Specialists to map out a plan for Eric that
helped him thrive as a student and now college graduate. Even 7 years
after his injury, Karen LeGrand credits the Information Specialists
with being their go-to resource to keep Eric healthy and living an
active life.
To date, our Information Specialists have provided direct
counseling to 90,000 people. We have distributed 200,000 copies of our
Paralysis Resource Guide, which is a staple in hospitals and
rehabilitation facilities across the country.
Peer & Family Support Program.--A second pillar of the PRC is our
Peer & Family Support Program, a national peer-to-peer network. This
program is born of the idea that the best source of knowledge is
experience, and that peer-to-peer connections empower not only the
newly-paralyzed individual, but also the mentor. The ultimate goal of
the Peer & Family Support Program is to help individuals find support
and resources among the communities who best understand the daily
realities and long-term challenges faced by individuals living with
paralysis. Through the PRC, more than 280 peer mentors have been
trained and certified in 43 States. These individuals have mentored
8,000 peers, including 1,500 caregivers.
Quality of Life Grants Program.--Our third pillar, the Quality of
Life Grants Program, operates at the community level to fund nonprofit
initiatives across the country. Since 1999, the Quality of Life Grants
Program has directed over $24 million dollars to assist over 3,000
projects in all 50 States. This program has increased employment
trainings and accessible transportation; established adaptive sports
programs and camps for children; improved access to buildings,
playgrounds and universities; helped individuals learn how to manage
their financial well-being, and provided support services for veterans.
The growth of the Quality of Life Grants program, through budget
and reach, continues to foster real, impactful change in the paralysis
community. Targeted outreach has brought new organizations into the
competition for funds, and significant efforts are made to connect with
and fund organizations that work with underserved members of the
community. The Reeve Foundation has expended considerable effort
raising nationwide awareness of the grants program, resulting in more
rich and diverse applications. Critically, these programs use the
public attention that comes from receiving funding from a nationally-
known Foundation to raise additional funds in their community, creating
a powerful return on investment.
In addition, programs for military service members and veterans and
their families continue to be strongly funded. The PRC has dedicated a
minimum of $50,000 annually to fund military- and veteran-focused
nonprofit organizations through Quality of Life grants.
Military & Veterans Program; Multicultural Outreach Program.--The
PRC has a comprehensive Military & Veterans Program (MVP), which
provides dedicated resources to help individuals navigate military and
civilian benefits and programs as they reintegrate into their
communities. The MVP helps servicemen and women whether they are
paralyzed through combat-related, service-related, or non-service
related events, and serves all veterans regardless of the era in which
they served or how their injury was obtained.
We are able to successfully address the needs of our veterans in
part thanks to our Military &Veterans Program Advisory Council, which
was formed with Reeve staff and volunteers who have direct ties to the
military and veteran community. The Council's goals include identifying
and defining the needs of the military and veteran community and
determining how the PRC can best reach and aid our veterans, as well as
helping leverage, develop and maintain collaborative relationships and
partnerships with other national and local organizations that serve the
military and veterans community.
The PRC also facilitates a Multicultural Outreach Program that is
designed to engage and support underserved populations like ethnic
minorities, older adults, low-income earners, and LGBTQ individuals. No
matter the individual, the PRC's goal is to promote wellness,
independence, and an improved quality of life.
ChristopherReeve.org.--One of the most challenging aspects about
living with paralysis is combating feelings of isolation and exclusion,
especially for those who are unable to leave their homes due to
physical and societal barriers. The Reeve Foundation's website,
ChristopherReeve.org, provides a vibrant online community and resource
hub that attracts close to two million visitors per year.
The Value of Integrated Services
There are many examples in which an individual living with
paralysis has not only participated in one program of the PRC, but has
benefitted from our suite of free services. When Joseph Preti, from
Mill Creek, Washington, sustained a spinal cord injury in 2010, he and
his wife, Pauline, were at a loss as to how to emotionally and
physically cope with their ``new normal'' away from the structure of a
hospital or skilled nursing. They turned to the Reeve Foundation's
website to understand Joseph's prognosis and prepare for his future
needs. They referred to the Paralysis Resource Guide as a critical tool
for managing his health, and connected with an Information Specialist
who provided guidance to further improve Joseph's quality of life,
including connecting them to a local non-profit called HelpHopeLive,
which helps people living with catastrophic injury raise funds to pay
medical bills. Once Joseph and Pauline felt confident in their path
forward, Joseph became a certified peer mentor through the Peer &
Family Support Program to help other families in the Washington-area
navigate life after paralysis. Joseph's story is one of many that
demonstrates how the PRC serves as a lifeline to help families from the
moment of injury or diagnosis through the many chapters of living with
paralysis--providing a continuum of care made possible by the depth and
breadth of the PRC's offerings.
The Importance of Federal Funding
Federal funding is essential to sustain the unique suite of
services offered by the PRC. A resource center that is relied on by
literally millions of Americans affected by paralysis needs consistent,
regular funding. Because many individuals living with paralysis have to
attend rehabilitation clinics and/or draw on other resources from out
of State, nationwide expertise is required. To get the benefit of
investing in a centralized hub with comprehensive information, we need
to promote and deliver these services at scale. Federal funds are
essential for this valuable, life-changing resource to function well
and in a cost-effective way.
Federal funding for the PRC is also a good investment. The PRC's
resources help people adapt their homes and gain the tools they need to
return to their communities, and eventually to work. The programs
funded by the PRC make people less dependent on healthcare providers,
so they can reduce their medical costs--saving dollars for Medicaid and
Medicare. Our Military & Veterans Program provides an essential
continuum of support for returning heroes as they transition out of the
VA system. The PRC's national model, strong reputation and well-
developed network allows us to leverage a small team to have maximum
impact. The PRC is smart Federal funding at work.
Conclusion
My father once said, ``Hope is like a lighthouse'', helping
individuals who are lost in the darkness find their way. But like a
lighthouse, hope must be built on solid foundations. The resources,
support and community created by the PRC are the foundation for hope
for millions of individuals affected by paralysis around the country. I
urge you to protect the Paralysis Resource Center and help individuals
achieve greater quality of life, health and independence by supporting
its vital work. Thank you.

[This statement was submitted by Alexandra Reeve Givens, Board
Member, Christopher & Dana Reeve Foundation.]
______

Prepared Statement of the Coalition for
Clinical and Translational Science

fiscal year 2019 appropriations recommendations
_______________________________________________________________________

--CCTS joins the broader medical research community in asking to
provide the National Institutes of Health (NIH) with at least a
$2 billion funding increase for fiscal year 2019, to bring
total funding up to a minimum of $39.1 billion annually.
-- Please provide the Clinical and Translational Science Awards
(CTSA) program at the National Center for Advancing
Translational Sciences (NCATS) with a subsequent $27
million increase for fiscal year 2019 to bring total
funding up to $570 million. Further, please provide
adequate support to facilitate meaningful increases for all
NCATS programs, particularly the Cures Acceleration
Network.
-- Please provide the Institutional Development Awards (IDeA)
program and the Research Centers at Minority Institutions
(RCMI) program at NIH with meaningful funding increases for
fiscal year 2019.
--CCTS joins the broader medical research community in asking
Congress to provide the Agency for Healthcare Research and
Quality (AHRQ) with a $120 million increase for fiscal year
2019 to bring total funding up to $454 million annually.
-- Please continue to support research training and career
development activities at NIH and AHRQ to ensure that the
next generation of clinical and translational researchers
is well-prepared.
_______________________________________________________________________

Chairmen Blunt and Shelby, Ranking Member Murray, Vice Chair Leahy,
and distinguished members of the Subcommittee, thank you for
considering the views of CCTS and the clinical and translational
research community as work on fiscal year 2019 appropriations. Most
importantly, thank you for providing NIH with a significant $3 billion
funding increase for fiscal year 2018, for notably increasing CTSA
funding and improving stewardship of dedicated resources, and for
increasing AHRQ funding.
about the coalition for clinical and translational science
CCTS is the unified voice of the clinical and translational science
research community. CCTS is a nationwide, grassroots network of
dedicated individuals who work together to educate Congress and the
Administration about the value and importance of Federal clinical and
translational research and research training and career development
activities. The Coalition includes the Nation's leading health research
institutions. CCTS's goals are to ensure that the full spectrum of
medical research is adequately funded, the next generation of
researchers is well-prepared, and the regulatory and public policy
environment facilitates ongoing expansion and advancement of the field
of clinical and translational science.
Association for Clinical and Translational Science (ACTS)
ACTS supports investigations that continually improve team science,
integrating multiple disciplines across the full translational science
spectrum: from population based and policy research, through patient
oriented and human subject clinical research, to basic discovery. Our
goal is to improve the efficiency with which health needs inform
research and new therapies reach the public.
ACTS is the academic home for the disciplines of research
education, training, and career development for the full spectrum of
translational scientists. Through meetings, publications, and
collaborative efforts, ACTS will provide a forum for members to
develop, implement, and evaluate the impact of research education
programs.
ACTS provides a strong voice to advocate for translational science,
clinical research, patient oriented research, and research education
support. We will engage at the local, State, and Federal levels and
coordinate efforts with other professional organizations.
ACTS will promote investigations and dissemination of effective
models for mentoring future generations of translational scientists.
Through collaborative efforts, ACTS will provide a forum for members to
share studies, promote best practices, and optimize professional
relationships among trainees and mentors.
Clinical Research Forum
Clinical Research Forum was formed in 1996 to discuss unique and
complex challenges to clinical research in academic health centers.
Over the past decade, it has convened leaders in clinical research
annually and has provided a forum for discussing common issues and
interests in the full spectrum of research. Through its activities, the
Forum has enabled sharing of best clinical practices and increasingly
has played a national advocacy role in support of the boarder interests
and needs of clinical research.
Governed by a Board of Directors constituted of clinical
researchers from thirteen member institutions, Clinical Research Forum
has grown to sixty members from academia, industry, and volunteer
health organizations. Clinical Research Forum engages leaders in the
clinical research enterprise including leaders from government,
foundations, other not-for-profit organizations, and industry in
addressing the challenges and opportunities facing the clinical
research enterprise.
Parallel with our widening focus upon the broad needs of the entire
national clinical research enterprise, Clinical Research Forum is
committed to working in those areas where it is uniquely positioned to
have a significant impact. Collaboration with other organizations with
similar goals and synergizing with their efforts strengthens all
approaches to the issues facing clinical research.
key community updates and requests
NIH continues to modernize our research infrastructure and now
nearly every Institute and Center supports the full spectrum of medical
research in a meaningful way. Recent investments in NIH have
facilitated meaningful growth and development in the overall clinical
and translational research enterprise. The IDeA program and the RCMI
program both provide infrastructure resources to institutions that form
a foundation for research and also provide training and career
development opportunities.
The flagship initiative at NIH for advancing collaborative clinical
and translational research activities is the CTSA program. This effort
has grown and advanced its mission in a meaningful way. Following a
positive Institute of Medicine Review in 2013, the program now includes
nearly 60 hubs and is progressing towards full funding of $750 million
annually. The CTSA network is conducting important research into many
meaningful questions by engaging local patient communities as well as
improving implementation science and the dissemination of key findings.
CTSAs also provide many important training slots for young
investigators. As a result of your leadership, key concerns related to
the stewardship of CTSA resources are now being addressed. The CTSA
hubs are beginning to see the benefits of additional resources rather
than facing constant requests to reduce and narrow opportunities. It is
the community's hope moving forward that increased communication,
transparency, and collaboration will allow the CTSA program to move
forward with renewed vigor.
Finally, please continue to invest in AHRQ to ensure that important
health systems research can progress and so training opportunities
remain for young investigators. AHRQ plays a unique role in healthcare
that often supplements the efforts of NIH and other public health
entities. The fiscal year 2018 funding increase was an important step
in the right direction, but a more robust allocation is needed to
restore AHRQ.
Thank you for your time and your consideration of these requests.
Please consider the CCTS a resource if you have any questions or if you
would like additional information.

[This statement was submitted by Harry P. Selker, MD, MSPH,
Chairman,
Clinical Research Forum.]
______

Prepared Statement of Coalition for Health Funding
I am Donna Meltzer, CEO of the National Association of Councils on
Developmental Disabilities, and I serve as President of the Coalition
for Health Funding. The Coalition is an alliance of 95 national health
organizations representing more than 100 million patients and
consumers, health providers, professionals, and researchers. Together,
we speak with one voice before Congress and the administration in
support of federally funded health programs with the shared goal of
improved health and well-being for all. We all have our own funding
priorities within the Department of Health and Human Services (HHS),
but we also all believe that to truly improve health, you need strong,
sustained, predictable funding for all Federal agencies and programs
across the public health continuum.
These HHS agencies have different roles in addressing our Nation's
mounting health demands, but they are all interconnected. For example,
investment in medical research at the National Institutes of Health
(NIH) is important, but on its own won't improve health. You need the
Food and Drug Administration (FDA) to approve new treatments. You need
the Centers for Disease Control and Prevention (CDC), the Health
Resources and Services Administration (HRSA), the Substance Abuse and
Mental Health Services Administration (SAMHSA), the Indian Health
Service to ensure we have qualified health professionals who can move
discoveries into healthcare and public health delivery, support
Americans while they're awaiting new cures, and prevent them from
getting sick in the first place. You need the Agency for Healthcare
Research and Quality (AHRQ) to provide evidence on what treatments work
best, for whom, in what circumstances. And you need the Administration
for Community Living to support those who are aging and those who have
disabilities--as well as their caregivers--so that they can their best
life every day. Without robust funding for all agencies and programs of
the public health continuum, we're falling short on the promise to
protect Americans and improve health. Shortchanging public health and
health research programs--or cutting health programs at the expense of
others--leaves Americans vulnerable to health threats and does nothing
to prevent these problems from arising in the first place.
HHS agencies do all this important work protecting Americans health
for relatively little money as a share of our Federal budget. In fiscal
year 2017, discretionary health funding for these and other health
agencies and programs was only $60 billion, or 1.5 percent of all
Federal spending. Of this, more than half supported medical research at
the NIH, and the remainder supported all other public health
activities, including disease prevention and response, health safety
and security, workforce development, and access to primary and
preventive care. Funding for most of these public health and health
research programs is still well below 2010 levels.
Through our work with NDD United--a voluntary alliance of thousands
of national, State, and local organizations joining forces to protect
and promote nondefense discretionary programs--we have advocated to
raise the caps on domestic funding and ensure that proportional relief
is provided to HHS's agencies and programs. We thank you and your
colleagues for the Bipartisan Budget Act of 2018 and the resulting
Consolidated Appropriations Act of 2018 or ``omnibus.'' To be sure,
there is still a long road ahead to rebuild our public health
infrastructure after years of austerity, as most agencies and programs
within your subcommittee's jurisdiction are still below fiscal 2010
levels when adjusted for inflation. But the new funding provided by
these laws is an important first step in increasing our capacity to
both prevent and respond to public health threats, train an adequate
health workforce, conduct research into new treatments and cures,
improve the delivery of care, and support caregivers.
The Coalition is deeply concerned about the White House's efforts
to rescind unobligated funding, and rumored reports that the president
may consider sending a list of rescissions from the fiscal 2018 omnibus
for Congress to consider through the process outlined in the
Impoundment Control Act of 1974. Such rescissions would negatively
affect the programs identified for the rescissions and disrupt agencies
efforts to obligate funding in an already compressed timeline. In
addition, reneging on the bipartisan compromise represented by the
omnibus would be detrimental to bipartisan relations on Capitol Hill
and would hinder future spending and legislative deals. The budget deal
and omnibus were the result of more than a year of bipartisan talks
about Federal spending limits and appropriations. Members from both
sides of the Capitol and the aisle voted for this spending legislation
not because it included all of their priorities, but because it
represented a reasonable compromise. It is critical now that Congress
protect that compromise and reject proposed rescissions to already
appropriated funding.
Indeed, President Trump seems intent on rolling back funding for
nondefense discretionary programs including public health, despite the
2-year budget deal recently signed into law. President Trump's proposed
fiscal 2019 budget would double down on sequestration and shrink
available funding for public health, health research, and all other
domestic programs. In fact, the president proposes cutting this funding
by about one-quarter by 2020.
It is worth noting that the president's budget does make an
important and needed investment in combatting the opioid epidemic.
Unfortunately, the budget request shows a fundamental disregard for the
comprehensive role of Federal health agencies and programs in
protecting and promoting Americans' health security in that crisis, and
more broadly. The budget does not provide for public health programs
that benefit all Americans such as disease surveillance, health
research, emergency preparedness, and chronic disease prevention. It
hampers the ability of those working on the frontlines of public health
to protect and serve their fellow Americans--primary care providers,
public health professionals, and caregivers. Moreover, it hits our
Nation's vulnerable particularly hard, slashing or eliminating programs
designed to help the poor, women, infants and children, seniors, and
people with disabilities.
The opioid epidemic is a public health emergency worthy of
significant funding to be sure, but it is not the only health
emergency. We hope the Subcommittee will continue its efforts to
increase funding for all public health and health research programs
within its jurisdiction to address all health threats. The Coalition
for Health Funding will continue to work with our partners in the
Labor-HHS community in urging lawmakers to provide the subcommittee
receives a robust fiscal 2019 302(b) allocation in fiscal 2019.
Looking ahead, discretionary programs face a significant funding
cliff in fiscal 2020 when the current budget deal expires--more than
$65 billion. Between now and then, we will continue to educate
lawmakers about the value of public health, health research, and all
nondefense discretionary programs with our partners in NDD United. We
urge you and your colleagues to continue to demonstrate your commitment
to keeping Americans safe and healthy by supporting another bipartisan
budget deal to raise the caps on nondefense discretionary funding.
We hope in your ongoing deliberations on fiscal 2019 and beyond you
will consider the costs of discretionary spending cuts, and the value
of all public health and health research programs in improving the
lives of American families. We look forward to working with the
Subcommittee in these endeavors, and hope you will turn to the
Coalition for Health Funding as a resource in the future.

[This statement was submitted by Donna Meltzer, President,
Coalition for Health Funding.]
______

Prepared Statement of the Coalition on Adult Basic Education
The Coalition on Adult Basic Education (COABE) appreciates the
opportunity to submit testimony for the record about the funding level
for adult education programs in fiscal year 2019. COABE is a membership
organization comprised of more than 55,000 educators, administrators,
mentors, and guides working to improve educational outcomes for adults
and build strong communities. COABE serves to promote adult education
and literacy programs and other State, Federal, and private programs
that assist undereducated and/or disadvantaged adults to function
effectively. COABE works to unify the profession, develop human
resources, encourage teachers and students, promote best practices, and
otherwise advance adult education and literacy. We develop and
disseminate publications, research, methods, materials, resources, and
programs to strengthen the field of adult education and literacy. We
conduct and sponsor professional development conferences and webinars.
We work tirelessly to help underserved adults master the skills they
need to compete, build careers, and provide better futures for
themselves, their families, and their communities.
COABE appreciates the support the Committee demonstrated for Adult
Education in the fiscal year 2018 Omnibus Appropriations Act. We
respectfully ask that in fiscal year 2019, Adult Education be funded at
$664.5 million, the level authorized in the Workforce Innovation and
Opportunity Act (WIOA). WIOA recognizes the crucial role adult
education plays in teaching English and civics and preparing adults to
enter the workforce or improve their employment status. The Act
established Adult Education as one of four key partners in a system of
education and training that emphasizes greater integration of Adult
Education and the workforce system and greater emphasis on college and
career readiness. Adult Education is now a key element in a
comprehensive system of education and training. WIOA's progress in
transforming the Adult Education system cannot be attained unless
Congress supports it adequately.
Adult Education serves adults, 16 years of age and older, who are
no longer enrolled in school or required by State law to be enrolled
and who are functioning below the high school completion level.
Services include teaching foundation skills in the disciplines of
reading, math, and English, coupled with college and career readiness
skills that lead to employment or the transition to post-secondary
education. Adult Educators also help parents obtain the educational
skills necessary to become full partners in the education of their
children.
Public schools, community colleges, libraries, and community-based
organizations offer programs at the local level.
Providers of Adult Education are accountable for improving the
literacy and numeracy skills of their students as measured by
regularly-administered standardized assessments, transitioning students
to postsecondary education, employment or job training, the attainment
of a high diploma or its equivalent, and earnings outcomes.
Federally funded adult education programs serve only 1.5 million of
these adults, down from 2.8 million in 2001. Enrollment has declined by
44 percent, falling most sharply among those who most need adult
education and workforce skills services. Demand for services across the
country far exceeds supply.
One in every six adults in the U.S. lacks basic reading skills;
that means that more than 35 million people can't read a job
application, understand basic written instructions, or read information
on the Internet. One in every three adults in the U.S. cannot use basic
arithmetic, work a cash register, read graphs, or understand a transit
schedule. According to PIAAC (OECD's Program of International
Assessment of Adult Competencies), Americans lag behind the
international average for basic skills in literacy and numeracy and
``problem-solving in technology-rich environments.'' Other nations show
consistent progress in enhancing the education levels of their adult
populations. The U.S. is losing ground.
We must invest in adult education because the jobs of the future
will require postsecondary education. According to labor market
economists at the Georgetown Center on Education and the Workforce, by
2020 65 percent of all jobs in the United States will require some
level of postsecondary education or training. The American Action Forum
projects that by 2020 the United States will be short an estimated 7.5
million private sector workers across all skill levels.
The Federal investment in Adult Education is cost-effective.
Federal support for Adult Education leverages a significant investment
by States. In fiscal year 2013, each Federal dollar invested in AEFLA
generated $2.49 in non-Federal matching funds. The Federal cost per
participant in fiscal year 2012, the most recent year for which we have
data, was $298. The annual Federal cost for each Adult Education
student who advanced at least one educational level or who earned a
high school diploma or its equivalent was $589.
Adult Education brings businesses options by preparing existing
workers with the skills that companies need through flexible classrooms
and curriculum. Both urban and rural areas need trained employees. As
of 2016, there were 476 counties in the U.S. in which 20 percent or
more of the working age population lacked a high school diploma or
equivalent. Eighty percent are located in non-metro areas.
Significant underinvestment in adult education and workforce skills
development is eroding America's global competitiveness. A robust adult
education system is essential if we are to achieve our Nation's
economic goals. It will be impossible to create a workforce skilled
enough to compete in the global 21st century economy if we focus only
on secondary schools and postsecondary institutions. We must also
support adult education. High schools alone cannot provide business and
industry with the workers that are needed. Most of America's workforce
of tomorrow is already in today's workforce. They are beyond the reach
of high schools and postsecondary education. A stronger economy will
bring people back into the workforce but it won't train them. Adult
education is the best way to re-engage them.
Low skilled adults are twice as likely to be unemployed, three
times as likely to be in poverty, four times as likely to be in poor
health, and eight times as likely to be incarcerated. Low education,
and skill levels, in adults are fundamental barriers to virtually every
major challenge we face including early childhood education, education
reform, economic development, and improving the health and well-being
of the Nation's families and communities.
By neglecting the adults who need services, we affect their
children. A mother's education level is the greatest determinant of her
children's future academic success, outweighing other factors such as
neighborhood or family income. Almost 60 percent of children whose
parents don't have a college education live in low-income families and
are less likely to get a good education to qualify for family-
sustaining jobs. Mothers and fathers who learn basic skills are better
equipped to help their children succeed. Education levels have more
effect on earnings over a 40-year span in the workforce than any other
demographic factor. Research shows that ``better-educated parents raise
better-educated, more successful, children who are less likely to end
up in poverty or prison.'' According to the U.S. Department of
Education, individuals who participate in adult education and literacy
programs have higher future earnings as a result, and their income
differential grows with more intensive participation. Finally, children
whose parents are involved with them in family literacy activities
score 10 points higher on standardized reading tests.
Low skill levels and under-education are directly linked to
inequality, higher rates of unemployment, lower income, crime, poor
health, and increased hospitalizations. Adults without a high school
diploma are more than twice as likely to live in poverty as high school
graduates. They are three times more likely to be unemployed than
adults with college degrees. Experts estimate that the U.S. loses more
than $225 billion in lost tax revenue, reduced productivity, crime, and
poor health because of under-education and low skills. Investing in
adult education can improve health outcomes, reduce poverty, and reduce
recidivism.
On the other hand, a person with a high school diploma or
equivalent earns an average of $9,620 more per year than a non-
graduate. Adults with a high school degree were more likely to work
full time and average 20percent higher earnings ($30,000) well above
the poverty line for a family of four.
Furthermore, the Census Bureau projects that between 2000 and 2015
net international immigration will account for more than half of our
Nation's population growth, increasing the demand for adult English
language programs to an even greater extent. Without adequate access to
English language learning programs we lose the contributions immigrants
make to our communities and our economy with their strong work ethic
and drive to succeed.
Adult Education is about giving students a hand up by preparing
them for college as well as career readiness. Take the case of Juliana
Vrekaj, an asylum seeker from Albania, who received her GED in 2013
from the East Haven, Connecticut Adult Education program. After
marrying and starting a family, Juliana rejoined the East Haven program
to take citizenship classes. Today, both Juliana and her husband are
American citizens. She received her Associate's Degree at Gateway
Community College in December and will start classes this spring at
Southern Connecticut State University where she intends to enter the
Teacher's Program in Mathematics, specializing in elementary education.
In the meantime, Juliana and her husband have opened a cellular phone
store in East Haven. The Connecticut Association for Adult and
Continuing Education (CAACE) named Juliana its Learner of the Year.
When Arturo Flores, 33, was a young man in California, he couldn't
resist the lure of the streets and joined a gang at age 14. He dropped
out of school during 8th grade. Between ages 19 and 25, he was in
prison five times. Art discovered a new life when he entered Owensboro
Regional Recovery in Owensboro, Kentucky, in 2010 and began working
toward earning his GED diploma. Although his academic skills were at a
6th grade level, he didn't let that deter him and he earned his GED
diploma within 3 months. Art didn't stop there. He graduated from
Owensboro Community and Technical College with an Associate of Arts in
May 2014. He's now a full-time student at Western Kentucky University-
Owensboro, where he is working toward earning his bachelor's in social
work. His goal is to earn a master's in social work to help troubled
youth, especially those who are active in gangs, or older citizens who
have experienced elder abuse. Art also works full-time at Owensboro
Regional Recovery as a ``Safe Off the Streets'' (SOS) monitor, where he
works with men in the first stages of recovery. Art says, ``I let them
know they don't have to live like they've been living. ``When I was a
kid, people tried to talk to me, but I didn't listen because they
hadn't been where I was. I want to let people know there is hope to
turn things around. At some point, I believe you've got to break the
cycle.''
fiscal year 2019 funding request
COABE urges the Committee to fund Title II of the WIOA at the
fiscal year 2019 authorized level so that the statute's ambitious goals
can be realized.
Adult education is a gateway to a job and a career for under-
educated, low skilled adults. Properly funding the adult education
system would yield substantial economic benefits, adding to GDP growth,
personal incomes, yielding increased tax revenues and saving on
healthcare and incarceration.
Other nations are boosting the educational levels of their young
and working age adults at a faster rate than the U.S. and are showing
consistent progress while we are losing ground. We must invest
adequately in our adult education system to remain economically
competitive globally.
______

Prepared Statement of the College on Problems of Drug Dependence
Thank you for the opportunity to submit testimony in support of the
National Institute on Drug Abuse. The College on Problems of Drug
Dependence (CPDD), a membership organization with over 1000 members,
has been in existence since 1929. It is the longest standing group of
scholars in the U.S. addressing problems of drug dependence and abuse.
CPDD 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. In the fiscal year 2019 Labor-HHS Appropriations
bill, we request that the subcommittee provide at least $2 billion
above the fiscal year 2018 level for the National Institutes of Health,
and within that amount a proportionate increase for the National
Institute on Drug Abuse using the Institute's conferenced level of
$1,383,603,000 as NIDA's base budget for Fiscal 2019. We also
respectfully request the inclusion of the following NIDA specific
report language.
Opioid Initiative.--With additional funding for NIDA targeted at
addressing the opioid epidemic, the Institute's opioid specific
allocation should be targeted for the following areas: development of
safe and effective medications and new formulations and combinations to
treat opioid use disorders and to prevent and reverse overdose; conduct
demonstration studies to create a comprehensive care model in
communities nationwide to prevent opioid misuse, expand treatment
capacity, enhance access to overdose reversal medications, and enhance
prescriber practice; test interventions in justice system settings to
expand the uptake of medication assisted treatment and methods to scale
up these interventions for population-based impact; and develop
evidence-based strategies to integrate screening and treatment for
opioid use disorders in emergency department and primary care settings.
Opioid Misuse and Addiction.--The Committee continues to be
extremely concerned about the epidemic of prescription opioid, heroin,
and illicit synthetic opioid use, addiction and overdose in the U.S.
Approximately 174 people die each day in this country from drug
overdose (over 100 of those are directly from opioids), making it one
of the most common causes of non-disease-related deaths for adolescents
and young adults. This crisis has been exacerbated by the availability
of illicit fentanyl and its analogs in many communities. The Committee
appreciates the important role that research can and should play in the
various Federal initiatives aimed at this crisis. The Committee urges
NIDA to 1) continue funding research on medication development to
alleviate pain and to treat addiction, especially the development of
medications with reduced abuse liability; 2) as appropriate, work with
private companies to fund innovative research into such medications;
and 3) report on what we know regarding the transition from opioid
analgesics to heroin and synthetic opioid use and addiction within
affected populations.
Alcohol's Role in Opioid Overdose.--The Committee is concerned that
the role of alcohol in opioid and other drug overdoses is not receiving
the attention it should. The CDC estimates that alcohol contributes to
over 8000 annual overdose deaths that are primarily attributed to other
substances, and that data suggest alcohol is commonly omitted from
death certificates leading to underreporting. In order to address the
opioid crisis, all avenues of investigation must be addressed. The
Committee directs NIDA to work with NIAAA and any other appropriate
agencies to better understand these linkages and to support research
that will help to address this aspect of the problem.
Barriers to Research.--The Committee is concerned that restrictions
associated with Schedule 1 of the Controlled Substance Act effectively
limit the amount and type of research that can be conducted on certain
Schedule 1 drugs, especially marijuana or its component chemicals and
certain synthetic drugs. At a time when we need as much information as
possible about these drugs, we should be lowering regulatory and other
barriers to conducting this research. The Committee directs NIDA to
provide a short report on the barriers to research that result from the
classification of drugs and compounds as Schedule 1 substances.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment.--Education is a critical
component of any effort to curb drug use and addiction, and it must
target every segment of society, including healthcare providers
(doctors, nurses, dentists, and pharmacists), patients, and families.
Medical professionals must be in the forefront of efforts to curb the
opioid crisis. The Committee continues to be pleased with the NIDAMeD
initiative, targeting physicians-in-training, including medical
students and resident physicians in primary care specialties (e.g.,
internal medicine, family practice, and pediatrics). NIDA should
continue its efforts in this space, providing physicians and other
medical professionals with the tools and skills needed to incorporate
drug abuse screening and treatment into their clinical practices.
Marijuana Research.--The Committee is concerned that marijuana
public policies in the States (medical marijuana, recreational use,
etc.) are being changed without the benefit of scientific research to
help guide those decisions. NIDA is encouraged to continue supporting a
full range of research on the health effects of marijuana and its
components, including policy research focused on policy change and
implementation across the country.
Adolescent Brain Development.--The Committee recognizes and
supports the NIH Adolescent Brain and Cognitive Development (ABCD)
Study. We know that the brain continues to develop into the mid-
twenties. However, we do not yet know enough about the dramatic brain
development that takes place during adolescence and how the various
experiences people are exposed to during this time interact with each
other and their biology to affect brain development and, ultimately,
social, behavioral, health and other outcomes. The ABCD study addresses
this knowledge gap. The committee also recommends and recognizes that
the cost of this comprehensive study should not inhibit investigator-
initiated studies or any potential special appropriation for its
ongoing support. The Committee understands that recruitment and data
development efforts are proceeding well, and requests a summary report
detailing activity and progress to date.
Drug Treatment in Justice System Settings.--The Committee
understands that providing evidence-based treatment for substance use
disorders offers the best alternative for interrupting the drug use/
justice system cycle for offenders with drug problems. Untreated
substance using offenders are more likely to relapse into drug use and
criminal behavior, jeopardizing public health and safety and taxing
criminal justice system resources. Treatment has consistently been
shown to reduce the costs associated with lost productivity, crime, and
incarceration caused by drug use. The Committee applauds NIDA's focus
on adult and juvenile justice populations in its research, supports
this important work and asks for a progress report in the next
appropriations cycle.
Electronic Cigarettes.--The Committee understands that electronic
cigarettes (e-cigarettes)/other vaporizing equipment are increasingly
popular among adolescents. Lack of regulation, easy availability, and a
wide array of cartridge flavors may make them particularly appealing to
this age group. In addition to the unknown health effects, evidence
continues to suggest that e-cigarette use may serve as an introductory
product for youth who then go on to use other tobacco products,
including conventional cigarettes, which are known to cause disease and
lead to premature death. Evidence also reveals that these devices are
widely used as tools for smoking derivatives of marijuana (hash oil,
``shatter,'' etc.) The Committee requests that NIDA fund research on
the use and consequences of these devices.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a 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. 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
emphasize the fact that drug addiction is 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,
however areas of significant concern include the recent increase in
lethalities due to heroin and synthetic fentanyl, as well as the
continued abuse of prescription opioids and the recent increase in
availability of designer drugs and their deleterious effects. The need
to increase our knowledge about the effects of marijuana is most
important now that decisions are being made about its approval for
medical use and/or its legalization. We support NIDA in its efforts to
find successful approaches to these difficult problems.
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. An obvious significant result
of this type of research is the discovery and development of naloxone
and other drugs to reduce deaths due to opioid overdose. This one
success has saved many lives. 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 2019 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction deserves to
be prioritized accordingly. Thank you for your support for the National
Institute on Drug Abuse.
______

Prepared Statement of the Computer Science Education Coalition
Chairman Blunt, Ranking Member Murray, I am Erin Siefring, chair of
the Computer Science Education Coalition (CSEC). Thank you for the
opportunity to provide this written testimony for the record in support
of making funding available for computer science education for our
country's K-12 students. This year, the CSEC is asking the subcommittee
to dedicate $250 million in funding for computer science K-12
education. This funding level will build upon the important work that
has been done in the last year by this subcommittee on a bipartisan
basis, and by the Administration, to prioritize computer science
education.
Last year I stated in my submitted statement for the record,
[c]omputer science is a foundational skill for 21st century jobs.
This skill is in high demand in our military and throughout the
private sector. However, the United States is failing to take
the necessary steps to equip our current and future workforce
with the computer science skills needed to fill these
positions. Critical jobs throughout our economy are going
unfilled due to a lack of Americans qualified in computer
science. The result is a weakened homeland and an economy not
reaching its potential.

CSEC was grateful to see the fiscal year 2018 Labor, Health and
Human Services, Education, and Related Agencies bill include report
language underscoring the importance of K-12 computer science education
programs and receive $50 million under the Education Innovation and
Research program for innovative STEM education and computer science
projects.
Congress and the executive branch understand what students,
parents, and teachers have been saying: computer science education is a
key component of providing K-12 students with the skills they need to
compete in the global economy.
In another significant development, last year President Trump
issued a Presidential Memorandum for the Secretary of Education
concerned with ``Increasing Access to High-Quality Science, Technology,
Engineering, and Mathematics (STEM) Education.'' The memorandum
highlighted the importance of computer science education, and stated
that,
The Department of Education, therefore, should prioritize helping
districts recruit and train teachers capable of providing
students with a rigorous education in STEM fields, focusing in
particular on Computer Science. This will help equip students
with the skills needed to obtain certifications and advanced
degrees that ultimately lead to jobs in STEM fields.

The President directed the secretary, ``to the extent consistent
with law, establish a goal of devoting at least $200 million in grant
funds per year to the promotion of high-quality STEM education,
including Computer Science in particular.''
The combined commitment from Congress and the President is a
crucial step in the right direction in helping to secure dedicated
funding for K-12 computer science education. More work lies before us
to help provide our students with the computer science education they
need, and that our economy demands.
For example, the fields of software, computing and computer science
are plagued by tremendous underrepresentation of women. In high school,
the Advanced Placement exam in computer science has the worst gender
diversity across all AP courses--78 percent percent of the participants
are male. Just 12 percent of the students taking the exam are students
of color. This disparity extends into the software workplace, which
suffers a similar lack of diversity. Computer science majors can earn
40 times more than the average wage. If K-12 computer science education
gets the dedicated Federal funding it deserves, then the current
disparities in computer science can be more robustly addressed.
The dearth of computer science education in classrooms has left
America in the midst of a STEM jobs crisis--which is really a crisis in
computer science education. Today, there are over 500,000 computing
jobs unfilled in the United States, while our universities only
graduate about 43,000 computer scientists each year.
In order to meet the demand to fill these U.S. jobs, close the
current skills gap, and boost America's competitive position globally,
a sustained Federal investment in K-12 computer science education is
critical. If students do not have the opportunity to learn computer
science skills early in their academic careers, it is less likely that
they will consider computer science careers. An investment of $250
million annually can help spur students into computer science careers.
But this isn't just an issue of providing economic opportunity and
jobs. The security of the homeland and the effectiveness of our
military depends in part on having graduates trained in computer
science. In fact,
The new national defense strategy calls for the military to prepare
for ``contested environments,'' including space. Enemies like
Russia and China are rapidly developing electronic and cyber
weapons, the strategy warns, and the U.S. military can no
longer spend decades developing technology.

The United States needs many qualified cyberwarriors and others
trained in computer science to provide rapid responses and proactive
approaches to the fluid environment that is the cyber battlefield.
As the subcommittee considers its funding priorities for the
upcoming fiscal year, CSEC, on behalf of its over 100 members, requests
that the subcommittee provide $250 million in funding specifically for
computer science education for our country's K-12 students. This
funding will pay significant dividends in preparing our students for
the computer science jobs of today and tomorrow, helping to secure the
homeland, and assisting our military in their vital mission.
Thank you for your consideration of this request.

[This statement was submitted by Erin Siefring, Chair, Computer
Science
Education Coalition.]
______

Prepared Statement of the Consortium of Social Science Associations
On behalf of the Consortium of Social Science Associations (COSSA),
I offer this written testimony for inclusion in the official committee
record. For fiscal year 2019, COSSA urges the Committee to appropriate
$39.3 billion for the National Institutes of Health (NIH), in addition
to the funds included in the 21st Century Cures Act; $8.445 billion for
the Centers for Disease Control and Prevention (CDC), including $175
million for the National Center for Health Statistics (NCHS); $454
million for the Agency for Healthcare Research and Quality (AHRQ); $670
million for the Institute of Education Sciences (IES); and $78.5
million for the Department of Education's International Education and
Foreign Language programs.
First, allow me to thank the committee for its long-standing,
bipartisan support for scientific research, especially for the NIH.
Strong, sustained funding for all U.S. science agencies is essential if
we are to make progress toward improving the health and economic
competitiveness of the Nation. COSSA serves as a united voice for a
broad, diverse network of organizations, institutions, communities, and
stakeholders who care about a successful and vibrant social science
research enterprise. We represent the collective interests of all STEM
disciplines engaged in the rigorous study of why and how humans behave
as they do as individuals, groups and within institutions,
organizations, and society. Social and behavioral science often refers
to the disciplines of and fields within anthropology, communication,
demography, economics, geography, history, law, linguistics, political
science, psychology, sociology, and statistics, as well as countless
multidisciplinary subfields.
National Institutes of Health--$39.3 Billion
COSSA urges the Committee to appropriate $39.3 billion for the
National Institutes of Health (NIH) in fiscal year 2019 in addition to
the funds included in the 21st Century Cures Act for targeted
initiatives. COSSA appreciates the Subcommittee's leadership and its
long-standing bipartisan support of NIH, especially during difficult
budgetary times. There are, however, ongoing and emerging health
challenges confronting the United States and the world, which COSSA
believes merits continued investment in the NIH. This funding level
would enable real growth over biomedical inflation, an important step
to ensuring stability in the U.S. research capacity over the long term.
As this Committee knows, the NIH supports scientifically rigorous,
peer-reviewed, investigator-initiated research, including basic and
applied behavioral and social sciences research, as it works ``in
pursuit of fundamental knowledge about the nature and behavior of
living systems and the application of that knowledge to enhance health,
lengthen life and reduce illness and disability.'' To be truly
transformative, NIH will need to continue to embrace research from a
wide range of scientific disciplines, including the social and
behavioral sciences. Recognizing the value these disciplines add to
preventing and treating most diseases, disorders, and conditions, NIH
support for basic and applied social and behavioral science research
can be found across its 27 institutes and centers (ICs). Knowledge
about the behavioral influences on health is a crucial component in the
Nation's battles against the leading causes of morbidity and mortality,
namely, obesity, heart disease, cancer, AIDS, diabetes, age-related
illnesses, accidents, substance abuse, and mental illness. The
fundamental understanding of how disease works, including the impact of
social environment on disease processes, underpins our ability to
conquer devastating illnesses. NIH investment in social science
research is an essential piece of the public health puzzle.
Centers for Disease Control and Prevention--$8.445 Billion, Including
$175 Million for the National Center for Health Statistics
COSSA urges the Subcommittee to appropriate $8.445 billion for the
Centers for Disease Control and Prevention (CDC), including $175
million for CDC's National Center for Health Statistics (NCHS). As the
country's leading health protection and surveillance agency, the CDC
works with State, local, and international partners to keep Americans
safe and healthy. Social and behavioral science research plays a
crucial role in helping the CDC carry out this mission. Scientists in
fields ranging from psychology, sociology, anthropology, and geography
to health communications, social work, and demography work in every CDC
Center to design, analyze, and evaluate behavioral surveillance
systems, public health interventions, and health promotion and
communication programs that help protect Americans and people around
the world from disease. Further, NCHS collects data on chronic disease
prevalence, healthcare disparities, emergency room use, teen pregnancy,
infant mortality, causes of death, and rates of insurance, to name a
few. It provides critical data on all aspects of our healthcare system
through data cooperatives and surveys that serve as the gold standard
for data collection around the world. Data from NCHS surveys are used
by agencies across the Federal Government (including NIH), State and
local governments, public health officials, Federal policymakers, and
demographers, epidemiologists, health services researchers, and other
scientists to better understand the impact of policies and programs on
Americans' health.
Agency for Healthcare Research and Quality--$454 Million
COSSA urges the Subcommittee to appropriate $454 million for the
Agency for Healthcare Research and Quality (AHRQ). The requested
funding level would allow AHRQ to strengthen its research portfolios
and allow the agency to build up its base budget should the
authorization of the Patient Centered Outcomes Research (PCOR) Trust
Fund (which provides 25 percent of AHRQ's funding) lapse at the end of
fiscal year 2019. AHRQ funds research on improving the quality, safety,
efficiency, and effectiveness of America's healthcare system. It is the
only agency in the Federal Government with the expertise and explicit
mission to fund research on improving healthcare at the provider level
(i.e., in hospitals, medical practices, nursing homes, and other
medical facilities). Its work is complementary--not duplicative--of
other HHS agencies. AHRQ-funded research provides us with the evidence
and tools we need to tackle some of the healthcare system's greatest
challenges, including identifying effective strategies for helping
primary care practices cope with the challenges of the opioid epidemic
and reducing the incidence of healthcare-associated infections (HAIs)
and medical errors. AHRQ reports and data give us vital information
about the State of the U.S. healthcare system and identify areas we can
improve. AHRQ's Medical Expenditure Panel Survey (MEPS) collects data
on how Americans use and pay for medical care, providing vital
information on the impact of healthcare on the U.S. economy. COSSA
urges the Committee to ensure robust support for AHRQ's critical health
services research.
Institute of Education Sciences--$670 Million
COSSA requests a funding level of $670 million for the Institute of
Education Sciences (IES) in fiscal year 2019. As the research arm of
the Department of Education, IES supports research and data to improve
our understanding of education at all levels, from early childhood and
elementary and secondary education, through higher education. Research
further examines special education, rural education, teacher
effectiveness, education technology, student achievement, reading and
math interventions, and many other areas. IES-supported research has
improved the quality of education research, led to the development of
early interventions for improving child outcomes, generated and
validated assessment measures for use with children, and led to the
establishment of the What Works Clearinghouse for education research,
highlighting interventions that work and identifying those that do not.
With increasing demand for evidence-based practices in education,
adequate funding for IES is essential to support studies that increase
knowledge of the factors that influence teaching and learning and apply
those findings to improve educational outcomes.
International Education and Foreign Language Programs--$78.5 Million
The Department of Education's International Education and Foreign
Language programs play a major role in developing a steady supply of
graduates with deep expertise and high-quality research on foreign
languages and cultures, international markets, world regions, and
global issues. COSSA urges a total appropriation of $78.5 million
($70.5 million for Title VI and $8.0 million for Fulbright-Hays) for
these programs, which would represent a modest increase over current
budgets. In addition to broadening opportunities for students in
international and foreign language studies, such support would also
strengthen the Nation's human resource capabilities in strategic areas
of the world that impact our national security and global economic
competitiveness.
Thank you for the opportunity to present this testimony on behalf
of the social and behavioral science research community.

[This statement was submitted by Wendy Naus, Executive Director,
Consortium of Social Science Associations.]
______

Prepared Statement of the Council of Academic Family Medicine
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). CAFM
collectively includes family medicine medical school and residency
faculty, community preceptors, residency program directors, medical
school department chairs, research scientists, and others involved in
family medicine education. We urge the Committee to appropriate at
least $59 million for the Primary Care Training and Enhancement
program, authorized under Title VII, Section 747 of the Public Health
Service Act. In addition, we recommend the Committee fund the AHRQ at
least $454 million and direct $100 million to the Center for Primary
Care Research.
More than 44,000 primary care physicians will be needed by 2035,
and current primary care production rates will be unable to meet the
demand, according to the authors of an article in Annals of Family
Medicine (Petterson, et al Mar/Apr 2015). The primary care training and
enhancement programs and AHRQ research enhance our Nation's workforce
and health infrastructure, improving primary care services that produce
better health outcomes and reduce healthcare costs. We were extremely
pleased that the fiscal year 2018 funding measure included increases in
both funding levels and hope that fiscal year 2019 will build on these
increases.
Primary Care Training and Enhancement--Title VII
The Primary Care Training and Enhancement Program (Title VII,
Section 747 of the Public Health Service Act) has a long history of
funding training of primary care physicians. As experimentation with
new or different models of care continues, departments of family
medicine and family medicine residency programs will rely further on
Title VII, Section 747, grants to help develop curricula and research
training methods for transforming practice delivery. Future training
needs include: training in new clinical environments that include
integrated care with other health professionals (e.g. behavioral
health, care coordination, nursing, oral health); development and
implementation of curricula to give trainees the skills necessary to
build and work in inter-professional teams that include diverse
professions; and development and implementation of curricula to develop
leaders and teachers in practice transformation. Moreover, new
competencies are required for our developing health system.
The Advisory Committee on Training in Primary Care Medicine and
Dentistry December 2014 report states that ``[r]esources currently
available through Title VII, Part C, sections 747 and 748 have
decreased significantly over the past 10 years, and are currently
inadequate to support the [needed] system changes.''\1\ In order to
address some of these challenges, the Advisory Committee recommended
that Congress increase funding levels for training under the primary
care training health professions program to meet the pent-up demand
caused by reduced and stagnant funding levels. Only 35 schools or
institutions could obtain grant funding in the fiscal year 2015 cycle;
approximately another 37 awards were made in fiscal year 2016, but then
no new large competitive award cycles were available since then, and
only two very small competitions. Family medicine alone has over 100
departments, and over 520 residencies, while the other specialties of
general internal medicine, general pediatrics and physician assistant
programs have many more. More funding would allow for more
participation across primary care.
Primary care health professions training grants under Title VII are
vital to the continued development of a workforce designed to care for
the most vulnerable populations and meet the needs of the 21st century.
We thank you for the fiscal year 2018 increase and urge your continued
support for this program with an increase in funding levels to $59
million in fiscal year 2019 to allow for a robust competitive funding
cycle. This funding level will help continue important Title VII
programs such as the University of South Alabama who used primary care
training funding to lead in curricular innovation that resulted in a
new primary care patient curriculum for first and second year medical
students.
Agency for Health Care Research and Quality (AHRQ)
Primary care clinical research is a core function of AHRQ. Primary
care research includes: translating science into patient care, better
organizing 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. AHRQ has proved
to be uniquely positioned to support best practice primary care
research and to help disseminate the research nationwide. However,
reduced levels of AHRQ funding in the past have exacerbated disparities
in funding primary care research. Important primary care research
initiatives have been unfunded in recent years such as research for
patients with Multiple Chronic Conditions (MCC) and the statutorily
authorized Center for Primary Care Research.
With a funding increase for fiscal year 2018 to $334 million, AHRQ
is in a unique position to further primary care clinical research as
well as the implementation science to identify how to deploy new
knowledge into the hands of primary care providers and systems in
communities. For this reason, we are supporting additional overall
funding increases for fiscal year 2019 as well as specific funding for
the Center for Primary Care Research. We hope additional funding will
continue and expand the following research goals: (1) development of
clinical primary care research and researchers (2) real world
implementation of evidence, (3) the process of practice and health
system transformation, (4) how high functioning primary care systems
and practices should look, (5) how primary care practices serving rural
and other underserved populations adapt and survive, and (6) how health
extension systems serve as connectors for research institutions with
practices and communities.
Oklahoma presents some real-world examples of successful AHRQ work
that supports primary care practice and patient safety. The University
of Oklahoma, College of Medicine, in Oklahoma City, created the Primary
Healthcare Improvement Center to serve as a resource to the emerging
Primary Healthcare Extensions System. Part of the Evidence Now
Initiative, this grant supports the dissemination of research findings
into practices, develop risk management interventions in practices and
evaluate the intervention's impact on practice performance.
AHRQ research is used by practices across the Nation. Highlighting
the success of AHRQ's patient safety initiatives, a 2014 \2\ report
showed hospital care to be much safer in 2013 compared to 2010. The
report noted a decline of 17 percent in hospital-acquired conditions,
in harm to 1.3 million individuals, as well as 50,000 lives saved, and
$12 billion in reduced health spending during that period. AHRQ
supports this research that is essential to create a robust system for
our Nation that delivers quality of care while reducing the rising cost
of care.
The Administration's fiscal year 2019 budget again proposed
eliminating AHRQ and moving its functions into the National Institutes
of Health (NIH). CAFM supports an alternative approach which includes
further study of AHRQ's mission as described in report language
contained in the fiscal year 2018 spending bill. It's critical that
AHRQ retains its current unique purpose with an emphasis on primary
care and health services research for improved patient outcomes.
In conclusion, we support increased funding for AHRQ at the level
of $454 million for fiscal year 2019 which would support important
primary care and health services research efforts. We also support new
funding for the Center for Primary Care Research. CAFM looks forward to
working with the Subcommittee to protect HRSA primary care programs and
AHRQ--both entities enhance our Nation's primary care workforce and
infrastructure.
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\1\ http://www.hrsa.gov/advisorycommittees/bhpradvisory/actpcmd/
Reports/eleventhreport.pdf.
\2\ Publication # 15-0011-EF.

[This statement was submitted by Mary Hall, MD, Chair, Council of
Academic Family Medicine.]
______

Prepared Statement of Council of Chief State School Officers
Dear Chairmen Shelby and Blunt and Ranking Members Leahy and
Murray:
On behalf of chief state school officers across the country, I am
writing to convey States' priorities for K-12 education in the fiscal
year 2019 appropriations cycle. The Council of Chief State School
Officers (CCSSO) is a nonpartisan, nationwide, nonprofit organization
of public officials who head departments of elementary and secondary
education in the States, the District of Columbia, the Department of
Defense Education Activity, and five U.S. extra-State jurisdictions.
CCSSO provides leadership, advocacy, and technical assistance on major
educational issues.
In February 2017, State chiefs renewed their commitment to creating
a more equitable education system for every child by releasing Leading
for Equity, a set of ten actions States are committed to taking to
improve educational equity in their States. Across these commitments,
States demonstrate how they can better align Federal, State, and local
resources to advance equity for all students. Funding is a critical
component, though not the only component, and State chiefs see the
funding they receive from through the Federal budget as a significant
resource to improve educational outcomes.
State chiefs appreciate Congress passing a bipartisan budget
agreement on February 9 of this year that included higher spending caps
for domestic programs, such as education. CCSSO supported the fiscal
year 2018 omnibus appropriations act that Congress later passed to fund
the remainder of the current fiscal year as it increased critical
funding for major K-12 education programs, such as Title I and the
Individuals with Disabilities Education Act.
As States implement the Every Student Succeeds Act (ESSA), which
reauthorized the Elementary and Secondary Education Act (ESEA) in 2015,
Federal funding is as critical as ever to ensure States can implement
State plans aligned with ESSA with fidelity in and in keeping with the
law.
As stewards of limited resources, State chiefs recognize that every
taxpayer dollar is precious and must be administered efficiently and
effectively to better meet the needs of all students. As States move to
implement ESSA and other Federal programs, they are also working to
improve State and local stewardship over limited Federal funds to
ensure maximum impact to improve student achievement, particularly for
disadvantaged or traditionally undeserved students, as well as children
with disabilities and others with special needs. Chiefs also know and
are eager to demonstrate the positive returns the Federal Government--
and our country as a whole--can reap when investing in the next
generation.
CCSSO and our members look forward to working with Congress to
ensure that fiscal year 2019 appropriations provides the resources
needed to improve outcomes for all children in every State. State
chiefs emphasize the following K-12 funding priorities:
elementary and secondary education act
Increase funding for ESEA Title I, Part A
Title I, Part A of ESEA is at the core of the Federal-State
partnership in K-12 education. As reauthorized by ESSA, Title I-A
provides increased flexibility for States, while also calling on States
to develop and implement new accountability and school improvement
systems to support academic excellence and reduce achievement gaps.
State chiefs have committed to creating a more equitable education
system for all students, and this is the continued goal and purpose of
Title I Federal funding. During school year 2019-2020, when States and
school districts will be receiving fiscal year 2019 funding, they will
be working to increase achievement and improve student outcomes in
schools that have been identified for support and improvement through
new State accountability systems. It is essential that States and their
districts have the resources needed to bring those efforts to fruition.
To support State leaders in meeting the educational needs of all
students, we urge Congress to increase the fiscal year 2018 level of
$15.7 billion for Title I, Part A by $300 million, the same increase as
in fiscal year 2018, to $16 billion for fiscal year 2019.
Provide Authorized Funding for ESEA State Assessment Grants
ESEA, as reauthorized by ESSA, continues to require that States
administer annual assessments in specified grades in reading or
language arts, in mathematics, and in science. These assessments
provide much of the framework for States' systems of school
accountability; that is, they provide the information that States use
to determine which schools are succeeding in educating all their
students to high standards. Yet high-quality assessment can be
resource-intensive, and States continue to rely on Federal assistance
in meeting this important requirement of the reauthorized statute.
Authorized under Title I of ESEA, State Assessment Grants support
State efforts to develop and implement high-quality assessments to
measure the academic achievement of all students. Under ESSA, States
and school districts may also use these funds to audit assessment
systems in order to reduce unnecessary or duplicative assessments.
State chiefs understand that States have an important role to play in
monitoring equitable implementation of standards and assessments.
According to the Brookings Institution, States spend an estimated $1.7
billion on assessments each year, yet the Federal program pays for $378
million of that cost. State chiefs ask Congress to maintain State
Assessment Grants at the full authorized level of $378,000,000 to
ensure that students are appropriately assessed and effective targeted
instructional supports to improve academic achievement are identified.
Provide Authorized Funding for ESEA Title II, Part A, to Support
Effective Instruction
Under the Every Student Succeeds Act, every student is required to
have a highly effective teacher. No longer can poor or minority
students be disproportionately served by ineffective or out-of-field
teachers. States have been working to address this critical issue both
before and through ESSA plans. Title II, Part A funding is critical to
support States and local districts in these efforts. We urge Congress
to fund Title II, Part A funding at the full amount authorized under
ESEA to reach these goals for every child.
Communities across the country use flexible Title II-A funds to
develop the workforce they need to best serve the students who are the
intended beneficiaries of ESEA. In New Mexico, for example, the State
uses this funding to provide professional development and mentorship
programs for teachers and principals in the State's lowest-performing
schools. As a result, these schools have improved proficiency rates for
their students in English Language Arts by 4.5 times the rate of
statewide growth and 2.7 times the statewide growth rate in
mathematics. Under ESSA, Nevada plans to use Title II-A funds to
modernize its licensure requirements to incorporate meaningful
professional growth and educator effectiveness and make improvements in
the statewide evaluation system to ensure reliability, validity,
fairness, consistency, and objectivity. Massachusetts will use this
funding to review its school districts' use of Title II funds and make
sure that professional development supports more effective educators,
particularly those who serve students with disabilities, low-income
students, and students of color.
These select examples of effective uses of and plans for Title II-A
funding are just a sample of the efforts States are undertaking to
support high-quality teaching and learning. Chiefs urge Congress to
continue to support these Federal-State partnerships by funding the
program at the authorized level of $2,295,830,000 to increase teacher
effectiveness and support the use of proven strategies to improve
learning outcomes.
Preserve Funding for ESEA Title III
English learners (ELs) are a growing population group across our
States, and in recent years their enrollment has increased particularly
in States where schools have little previous experience in serving
them. Enabling ELs to achieve English language proficiency and achieve
to high standards in the regular, English-speaking classroom, is one of
the key responsibilities given to States by ESSA. Under the
reauthorized statute, States must set goals for ELs' attainment of
English proficiency and they must incorporate a measure of progress
toward that goal in their systems of school accountability. For this
reason, school year 2019-2020 will be a critical time during which
States test all ELs for proficiency, implement systems for improving
educational programs for the EL population, and provide services and
supports to schools that are not making sufficient progress in that
area.
Title III of ESEA funds State and local programs in English
language acquisition for EL and immigrant students. In order to ensure
the success of States' efforts to improve outcomes for this high-need
and growing population, we recommend that the Congress fund Title III
at the full authorization of $784,960,000.
Adequately Fund ESEA Title IV, Part A, the Student Support and Academic
Enrichment Grant
Title IV, Part A, the Student Support and Academic Enrichment Grant
program, provides Federal support for programs that support a well-
rounded education, safe and healthy students, and education technology.
Newly authorized by ESSA, this program received its first appropriation
of $400 million in fiscal year 2017, followed by an increase to $1.1
billion in fiscal year 2018.
In addition to using these funds to provide students with a well-
rounded education, States have committed to ensuring student safety by
focusing on school culture, climate, and social-emotional development.
In order to keep students safe, State leaders recognize this work
cannot just be about best practices in securing school facilities, but
also must focus on how to deepen and strengthen communities. Title IV
is particularly critical as States and local communities seek to
improve school safety; it is more important than ever that we support
State and local leaders in providing safe, supportive school
environments for all students, and we urge Congress to fund Title IV,
Part A at the authorized level of $1.6 billion.
Adequately Fund ESEA Title IV, Part B, 21st Century Community Learning
Centers
One way in which State chiefs have worked to strengthen students'
relationships with their communities is through afterschool programs.
Chiefs urge Congress to adequately fund 21st Century Community Learning
Centers so students have the supports they need outside of the
classroom to ensure success in school and in life. This program
provides students with activities to enhance their academic, social,
and overall development during their out-of-school time. Approximately
1.9 million students benefit from these programs in schools, libraries,
and communities across the country. Data show that students who
participate in these programs miss fewer days of school, have fewer
out-of-school suspensions, increase their chances of graduating, and
are more likely to continue their education after high school. Congress
should fund this program at no less than $1,211,673,000, the amount
provided in fiscal year 2018, to ensure that low-income students may
access the out-of-school time supports they need to succeed.
Support Statewide Longitudinal Data Systems
For many years, Statewide Longitudinal Data Systems (SLDS) funding
has helped State education agencies provide State leaders, district
administrators, educators, and the education community with high-
quality data on student achievement and other student outcomes and on
school performance. States use these funds to create more efficient and
effective data systems, including new ESSA requirements such as
reporting on homeless, foster, and military-connected youth, and per-
pupil expenditure at the school level. For example, one State used SLDS
grants to streamline the data collection process that school districts
must navigate annually, thereby reducing administrative burden. Through
automation this State has saved over $500,000 annually on a single data
collection requirement. These savings are driven into more important
services locally, such as teaching and learning activities. Meanwhile,
another State used an SLDS grant to develop and implement a custom
technology tool to provide educators with near real-time data to help
inform instruction. Chiefs urge Congress to build on these and similar
successes by funding this program at least at the fiscal year 2018
level of $32,281,000.
carl d. perkins career and technical education act
Adequately Fund the Carl D. Perkins Career and Technical Education Act
States are leading efforts to ensure that students graduating from
high school are prepared to enroll in postsecondary education or enter
the workforce with industry-recognized certifications or credentials
that can lead them to a well-paying career. In partnership with
JPMorgan Chase, Advance CTE and Education Strategy Group, CCSSO is
leading the New Skills for Youth Initiative and working with States to
increase the number of students who graduate prepared to compete in an
evolving job market. To support State leaders in producing graduates
who are both college- and career-ready and ensure all students have
access to pathways that prepare them for the workplace of tomorrow,
Chiefs urge Congress to appropriate at least fiscal year 2018 funding
of $1,192,598,000 for the Perkins Career and Technical Education
program.
individuals with disabilities education act
Invest in the Individuals with Disabilities Education Act (IDEA)
IDEA, Part B supports State and local programs for students with
special needs, including support for special education teachers,
related service providers, and professional development. IDEA funding
can also be used to provide more comprehensive supports that benefit
all students, such as implementing a universal design for learning
curriculum, planning and implementing new learning environments to
support all learners in an inclusive setting, or purchasing curriculum-
based screening and progress monitoring instruments. While ideally the
Federal Government would meet the statutory objective of funding 40
percent of the additional costs of educating students with
disabilities, we understand that even with higher spending caps this is
a challenging goal under current circumstances. In the fiscal year 2018
Omnibus, Congress appropriated $12.3 billion for IDEA, a significant
increase over previous years, but still far short of the Federal
commitment. Therefore, chiefs ask Congress to increase the Federal
Government's share of the excess costs of special education services to
about 15 percent, or $12,850,000,000 for IDEA in order to strengthen
services for our students with disabilities.
Thank you for considering the appropriations priorities of chief
State school officers and the students they serve. As States move to
advance equity in the public education system and implement the Every
Student Succeeds Act and other key Federal and State programs aligned
with this vision, it is imperative that the Federal Government remain a
key partner in supporting the work underway in States to provide the
necessary resources to meet the needs of all students, particularly
students with disabilities, students from low-income families, English
learners, and other students who have been traditionally undeserved by
our education system.
We look forward to working with you and your colleagues to ensure
that Congress supports educators and students with adequate resources
in fiscal year 2019.
Sincerely.

[This statement was submitted by Carissa Moffat Miller, Executive
Director, Council of Chief State School Officers.]
______

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, Education, and
Related Agencies. CSWE is a nonprofit national association representing
more than 2,500 individual members and more than 800 baccalaureate and
master's programs of professional social work education. CSWE requests:

------------------------------------------------------------------------
Agency Account Program Funding Requested
------------------------------------------------------------------------
HHS HRSA HRSA Behavioral $75 million
Health Workforce
Education and
Training Grant
Program.
HHS HRSA Scholarships for $48.970 million
Disadvantaged
Students.
HHS HRSA Mental and Behavioral $38.916 million
Health Programs.
HHS HRSA Geriatrics Programs.. $51 million
HHS HRSA New authorized $10 million
demonstration to
strengthen mental
and substance use
disorders workforce.
HHS SAMHSA Minority Fellowship $12.669 million
Program.
ED N/A Pell Grant........... $6,230 for the
maximum Pell Grant
ED N/A GAANN................ $41 million
ED N/A Loan Repayment Maintain loan
Programs. forgiveness programs
including Public
Service Loan
Forgiveness (PSLF)
program
HHS NIH Overall Funding for At least $39.3
NIH. billion
------------------------------------------------------------------------

hrsa title vii health professions programs
CSWE urges the Committee to provide $424 million in fiscal year
2019 for 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). These programs are
designed to provide health-care providers with interdisciplinary
training to meet the health-care needs of all Americans, including
underserved populations, individuals with special needs, and minority
groups that require a culturally competent health-care workforce.
Social workers and social work students are eligible for Title VII
health professions programs under HRSA, which provide loans, loan
guarantees, and scholarships to students, as well as grants to
institutions of higher education and non-profit organizations to build
and maintain a robust health-care workforce. Within the Title VII
program, CSWE specifically urges the Committee to provide:
--$75 million for HRSA's Behavioral Health Workforce Education and
Training (BHWET) program. CSWE is pleased at the increased
investments in the fiscal year 2018 Omnibus for the BHWET
program. BHWET supports the recruitment and education of
behavioral health-care providers, which is critical as the
Nation continues to combat the opioid epidemic. In 2015, the
program's first year, 4,196 social work students participated
in the BHWET program and that number continues to grow. In 2018
a new 4-year competition awarded social work programs over $17
million a year to help develop and expand the behavioral health
workforce serving populations across the lifespan, including in
rural and medically underserved areas. We hope you will support
$75 million for BHWET in fiscal year 2019; this is the enacted
level in the fiscal year 2018 omnibus.
--At least $48.970 million for Scholarships for Disadvantaged
Students. This program helps ensure that the United States has
the pipeline of health professionals to meet health needs of
underserved individuals and communities. Furthermore, this
program provides much needed opportunities for students from
disadvantaged backgrounds.
--$36.916 million for Mental and Behavioral Health programs at HRSA.
CSWE was pleased to see new investments in mental and
behavioral health programs at HRSA to support, recruit, and
train professionals and faculty in the fields of social work,
psychology, psychiatry, marriage and family therapy, substance
abuse prevention and treatment, and other areas of mental and
behavioral health. In addition, given that there was a
significant increase in the fiscal year 2018 omnibus for Mental
and Behavioral Health programs, CSWE has been made aware that
HRSA does not plan to continue to fund the Leadership in Public
Health Social Work Education (LPHSWE) Program. CSWE urges the
Committee to ensure that funding from this account supports
social work either for education and training, or through the
LPHSWE Program.
--$10 million for a demonstration program to strengthen the mental
and substance use disorders workforce. CSWE is pleased the 21st
Century Cures Act passed Congress with strong bipartisan
support. Included in the mental health provisions of this bill,
in Section 9022, is a new demonstration program to strengthen
the mental and substance use disorders workforce. Specifically,
this provision would support training for health professions,
including social workers, to provide mental and substance use
disorders services in underserved community-based settings that
integrate primary care and mental and substance use disorders
services.
samhsa minority fellowship program
CSWE urges the Committee to appropriate $12.669 million for the
Minority Fellowship Program (MFP) in fiscal year 2019. The MFP has
broad support and was recently authorized in the 21st Century Cures Act
for $12.669 million. For almost 45 years, MFP has been increasing the
number of professionals preparing for leadership roles in mental health
and substance use fields and working to reduce health disparities and
improve behavioral healthcare outcomes for racial and ethnic
populations. CSWE appreciates increased investments in the MFP in
fiscal year 2018 focused on addiction medicine to address the opioid
crisis. However, this funding did not include social work, which is one
of the largest substance use and mental health providers in the United
States. CSWE urges the committee to include $12.669 million for the
minority fellowship program for postbaccalaureate training for mental
and substance use disorder treatment professionals, as authorized in
Public Law 114-146, including in the fields of psychiatry, nursing,
social work, psychology, marriage and family therapy, mental health
counseling, and substance use disorder and addiction counseling.
CSWE urges Congress provide $12.699 million for MFP in fiscal year
2019, with funding going to support the aforementioned grantees,
including social work which has a long record of success and expertise
in substance abuse.
department of education (ed): student aid programs
CSWE supports full funding to bring the maximum individual Pell
Grant to $6,230 in fiscal year 2019. Pell Grants are one of the most
important programs to increase access and affordability to ensure that
all students, regardless of economic situations, can pursue higher
education. CSWE also urges the extension of inflationary adjustment on
mandatory funds.
The Graduate Assistance in Areas of National Need (GAANN) program
provides graduate traineeships in critical fields of study. Currently,
social work is not defined as an area of national need. We encourage ED
to include social work in the GAANN program to enhance graduate
education opportunities in social work, which will foster a sustainable
health professions workforce. CSWE urges you to support a funding level
of $41 million for the GAANN Program and include social work as an area
of national need.
Income-driven repayment plans and the Public Service Loan
Forgiveness (PSLF) program helps social work graduates serve in high-
need communities. CSWE requests your support for the continuation of
income-driven loan repayment programs and the support of the PSLF
program.
national institutes of health: support for research
For fiscal year 2019, CSWE supports $39.3 billion for the National
Institutes of Health (NIH). CSWE thanks Congress for its support of
sustained funding increases for NIH. To continue advances in research,
CSWE urges Congress to support at least $39.3 billion for NIH in fiscal
year 2019 to continue investments in biomedical and health-related
research that incorporates the social and behavioral science research
necessary to address the needs of high-risk populations including
children, racial and ethnic minorities, and older adults.
Thank you for the opportunity to express these views. Please do not
hesitate to call on the Council on Social Work Education should you
have any questions or require additional information.

[This statement was submitted by Dr. Darla Spence Coffey,
President, Council on Social Work Education.]
______

Prepared Statement of the Council on Undergraduate Research
The Council on Undergraduate Research (CUR) urges the Subcommittee
to adequately invest in programs at the Department of Education as well
as the National Institutes of Health and other programs that support
high-quality undergraduate student-faculty collaborative research and
scholarship as they consider the fiscal year 2019 Labor, Health and
Human Services and Education (LHHS) Appropriations bill.
What is CUR?
CUR is a dynamic and vibrant non-profit organization of more than
13,000 members, representing close to 1000 institutions. CUR identifies
undergraduate research as an inquiry or investigation conducted by an
undergraduate student that makes an original intellectual or creative
contribution to the discipline, in close collaboration with faculty
members and other professional mentors. Undergraduate research moves
students from passive participants in lecture-based classroom
experiences, to independent researchers, with strong critical thinking,
communication, organizational, and team work skills. Simply put,
undergraduate researchers gain the real-life experience that employers
and the research enterprise need and say they can't find in today's
novice employee or researcher.
Why Undergraduate Research?
Nearly 2 million students graduate from 4-year colleges each year,
suggesting a steady supply of skilled labor to the workforce. Yet
employers continue to bemoan the dearth of new employees with the
appropriate skills to succeed and advance in the workplace. Hart
Research Associates report that over 80 percent of employers expect
students to have strong skills in communication, problem solving, and
critical thinking; and over 90 percent of employers think these skills
are more valued by employers than a student's specific major.
Unfortunately, 58 percent of employers do not think recent graduates
demonstrate these skills effectively for entry level positions and 64
percent feel recent graduates are not prepared for advancement in a
company. Baccalaureate students who have engaged in undergraduate
research and creative experiences bring these ``skills in demand'' with
them to their first job and are better prepared to apply them
successfully.
In addition to these critical workforce skills, there is a growing
demand in the workforce for skilled labor in science and technology. At
the same time, there has been a trend toward declining numbers of
degrees in science disciplines. Only 40 percent of students who enter
college intent on majoring in Science, Technology, Engineering, and
Mathematics (STEM) disciplines graduate with STEM degrees and only 20
percent of underrepresented minority students follow through in STEM.
Economic projections show the number of STEM degrees graduated annually
will not meet our Nation's demand for more skilled workers in the
myriad of health-related fields such as practitioners, technicians and
manufacturers. As a result, the United States is quickly falling behind
on filling the science and technology positions necessary to maintain
the mantle of the world's economic leader. The President's Council of
Advisors on Science and Technology concluded that we must increase the
number of STEM degrees awarded annually by 34 percent to remain
competitive. As a means of encouraging and supporting students in STEM
disciplines, undergraduate research is a particularly robust tool and
student participation in research has been shown to increase retention,
persistence, and graduation rates in these areas.
Universities carry the responsibility to produce students ready to
meet the demands of the workforce with the necessary broad skills as
well as the appropriate degrees. Research is the ultimate form of
active learning. Students learn to conceptualize the problem, generate
potential solutions, test them, and revise the question. Skills
developed include perseverance, communication within groups, and
ability to collaborate with others in ways that will help them work
confidently with peers and supervisors in the workforce.
This is particularly important for achieving the goal of increasing
participation by currently underrepresented populations in STEM fields.
These students tend to engage in structured research opportunities in
higher percentages than do white, non-Latino students. The structured
programs develop communities that benefit Black, Latino, and Native
American students and encourage them in future academic and research
pursuits. Assessment of undergraduate research repeatedly points to its
positive educational outcomes both in the short term (early-career) and
longitudinally (mid- and late-career). As a result, 87 percent of
employers stated they were more likely to hire graduates who completed
research-based projects. This is because the mentored research process
actively engages students, more effectively developing critical
thinking, improving motivation and persistence, and building
confidence. Students self-report that they feel ``better able to think
independently and formulate their own ideas''. Research experiences
help students clarify their career goals, and they are more likely to
apply to graduate school. Finally, getting students involved in
research early in their college career helps to keep them in college
and persist in STEM majors.
A strong economy and a vibrant society thrive on an engaged and
well-trained workforce. The evidence that undergraduate research
supports these goals is clear. Thus, to accomplish the goal of
increasing undergraduate research opportunities it is essential to
support the Federal research agencies that invest in these high-impact
practices. This support may take many forms, but ensuring that Federal
research agencies have adequate funds to support faculty researchers
who are eager to use undergraduate researchers as part of their work is
crucial. Interested and committed faculty supported by substantive
financial investment can help develop the next generation of creative
and critical thinkers. Fostering these resilient and dedicated
individuals is critical to maintaining our country's leadership role in
finding and implementing innovative solutions to current and future
problems. Augmenting Federal funding streams for these high-impact
practices will result in a demonstrated return on the investment of
public money as the government seeks to strengthen the economy and
American society.
CUR members represent a diverse cross-section of the country. They
hail from community colleges to baccalaureate-granting institutions,
large public institutions and small private colleges, military and
religious institutions, rural and urban settings, and from all fifty
States. Additionally, CUR is a founding partner, along with NSF, in the
Community College Undergraduate Research Initiative (CCURI), and
continues to work with 38 institutional partners to support the
practice of undergraduate research at the community college level.
What are CUR's Funding Priorities?
Undergraduate research is supported by many programs at multiple
Federal agencies. In some instances, the program is dedicated to the
practice, such as the NSF's Research Experiences for Undergraduates. In
other instances, undergraduate research is supported in a proposal
submitted by a prospective principal investigator (PI), or a PI chooses
to use undergraduate researchers once they have won an award. As a
result, CUR and its members are interested in numerous research
opportunities available to them and their institutions. The
organization also knows that Federal student aid programs are important
to getting undergraduate researchers to campuses that support the
practice, keeping them there and ensuring they complete their intended
course of study.
With regard to funding of student aid and support programs, please
robustly support Federal TRIO programs at the Department of Education.
The program should be funded at $1.07 billion to restore services for
the more than 30,000 students who have lost access to the programs over
the last 10 years. These are investments aimed at getting more students
prepared for, into and through postsecondary education. Further, please
reject the White House proposals to transition TRIO to a single State
formula grant program and its request to discontinue support for the
Student Support Services, McNair Post-baccalaureate and Educational
Opportunity Centers programs. We also urge you to reject the
Administration's request to stop funding Gaining Early Awareness
Readiness for Undergraduate Programs (GEAR UP), and fund the program at
$375 million, which would bring approximately 70,000 new students into
the program. As you know, these programs support activities to help
first-generation, low-income and other disadvantaged students progress
through the academic pipeline from middle school through college. These
investments are crucial as we continue to see the importance of not
only getting these students to college campuses, but nurturing their
success once there.
CUR also believes that it is important that the Federal Government
continue to support the students who need Pell Grants and student loans
to advance their academic and professional endeavors. Regarding the
Pell Grant program, CUR concurs with the higher education community's
call for an increased maximum award of $6,230. This increase would help
the program to keep pace with inflation and would be crucially
important to the 7.5 million students who will use the program in the
coming academic year, according to the Congressional Budget Office.
Further, CUR strongly opposes any rescissions from this program or
using any surpluses for other programs.
As for campus-based aid programs, CUR opposes the President's
proposals for both the Supplemental Educational Opportunity Grants
(SEOG) and Federal Work-Study (FWS) programs. SEOG provides targeted,
need-based grant aid of up to $4,000 per student to 1.6 million
students, and more than 99 percent of all SEOG recipients are also Pell
Grant recipients. This makes the financial need of these students
higher, on average, than students receiving only Pell Grants. The FWS
program provides Federal and institutional funding to support part-time
employment for more than 700,000 students to help them pay their
college costs. It also supports undergraduate researchers. Over the
last decade, both of these programs have seen level or reduced funding
year after year, eroding their ability to serve low- and middle-income
students. In order to restore their purchasing power, Congress should
fund them at their pre-sequester levels, adjusted for inflation. For
SEOG, that would be $1.028 billion and for FWS it would be $1.434
billion.
In other areas of the bill, CUR and its members are concerned that
cuts or flat funding to research agencies--at a time when other
countries are making significant investments in basic research--could
lead to the erosion of America's preeminence in innovation and
scientific research. We know that the subcommittee is keenly interested
in maintaining our Nation's edge in producing the best science and
scientists, and we urge you to continue to seek opportunities to
maximize investments in the National Institutes of Health, the
Institute of Education Sciences and other research programs under your
purview.
CUR and its members are also committed to contributing to the fight
against our country's opioid epidemic and support calls for increases
in spending at HHS and the 21st Century Cures initiatives to address
the opioid crisis and serious mental illness. Undergraduate researchers
are particularly interested in discovering the causes of opioid
addiction and contributing to meaningful and effective strategies for
combatting the crisis that touches every college and university
community in the country.
Thank You
While CUR's interests are broad, we urge the Subcommittee to
develop a bill that invests adequately in the many programs that
support undergraduate research and researchers. We thank you for your
leadership on these issues and look forward to working with you further
as the fiscal year 2019 Labor, Health and Human Services and Education
Appropriations bill advances. If you or your staff have any questions
about this testimony, the citations therein, CUR, undergraduate
research or Federal policies that affect the practice, please contact
me at [email protected]. Thank you for your attention to these views.

_______________________________________________________________________

The mission of the Council on Undergraduate Research is to support
and promote high-quality undergraduate student-faculty collaborative
research and scholarship. The Council on Undergraduate Research (CUR)
and its affiliated colleges, universities, and individuals share a
focus on providing undergraduate research opportunities for faculty and
students at all institutions serving undergraduate students. CUR
believes that faculty members enhance their teaching and contribution
to society by remaining active in research and by involving
undergraduates in research, and students succeed in their studies and
professional advancement through participation in undergraduate
research. CUR's leadership works with agencies and foundations to
enhance research opportunities for faculty and students. CUR provides
support for faculty, administrator, and student development. Our
publications and outreach activities are designed to share successful
models and strategies for establishing and institutionalizing
undergraduate research programs. We assist administrators and faculty
members in improving and assessing the research environment at their
institutions. CUR also provides information on the importance of
undergraduate research to State legislatures, private foundations,
government agencies, and the U.S. Congress. CUR welcomes as members
faculty, staff, and students from all types of academic institutions.

[This statement was submitted by Elizabeth L. Ambos, Executive
Officer, Council on Undergraduate Research.]
______

Prepared Statement of Cure Alzheimer's Fund
Chairman Blunt, Ranking Member Murray, and members of the Senate
Labor, Health & Human Services, Education, and Related Agencies
Appropriations Subcommittee, I am Tim Armour, President and CEO of Cure
Alzheimer's Fund. I appreciate the opportunity to thank Congress for
the additional funding for Alzheimer's disease research across the
National Institutes of Health (NIH), and to submit this written
testimony to request at least an additional $425 million in fiscal year
2019 above the final enacted amount for fiscal year 2018 for
Alzheimer's disease research across the NIH.
Cure Alzheimer's Fund is a national nonprofit, based in
Massachusetts that funds research throughout the United States and
internationally, investigating genetic and other aspects of Alzheimer's
disease. It is the belief of Cure Alzheimer's Fund that we will not be
able to cure the disease if we do not know what causes the disease.
Cure Alzheimer's Fund wants to first acknowledge the ongoing
support of this Subcommittee for increasing funding for Alzheimer's
disease research. With this support, Federal funding for Alzheimer's
disease research across NIH is approaching the $2 billion a year called
for by research experts.
The ongoing support from this Subcommittee benefits not only the
National Institute on Aging (NIA) which supports the majority of
Alzheimer's disease research at NIH, but other institutes including the
National Institute on Neurological Disorders and Stroke (NINDS), and
the National Institute of Mental Health (NIMH).
Recently, NIH highlighted research into the impact of a lack of
sleep on developing Alzheimer's disease. This research, however, was
funded by the National Institute on Alcohol Abuse and Alcoholism
(NIAAA), with one of the lead researchers, Nora Volkow, being the
Director of the National Institute on Drug Abuse (NIDA). This shows
that discoveries and unlocking the secrets of the brain generally and
with Alzheimer's disease specifically can come from a variety of
sources. https://www.nih.gov/news-events/lack-sleep-may---be-linked-
risk-factor-alzheimers-disease.
Since 2009, Cure Alzheimer's Fund has supported research into the
impact of the lack of sleep, primarily at the laboratory of David
Holtzman, M.D. at Washington University in St. Louis, MO. This research
has led to a potential therapy target, orexin, a neurotransmitter that
regulates aspects of sleep.
Dr. Holtzman has also received funding from NINDS for his research
on sleep. Cure Alzheimer's Fund supported research, combined with NIH
supported research, shows the power and importance of collaboration and
public-private partnerships.
Another example of this public private partnership is the
development of an amyloid balancing therapy resulting from research
sponsored by Cure Alzheimer's Fund and adopted by NIA through its
prestigious ``Blue Print'' program for drug development.
A third example is the growing understanding of the role that the
innate immune system plays in the development of Alzheimer's disease.
Research that was initially funded by Cure Alzheimer's Fund into the
antibiotic role of beta amyloid in developing Alzheimer's disease is
being highlighted and supported by NIH. https://www.nih.gov/news-
events/nih-research-matters/alzheimers-protein-may-havenatural-
antibiotic-role.
This innovative and varied research highlights the important roles
played by private philanthropic organizations like Cure Alzheimer's
Fund and public organizations such as NIH. Without both of these, and
others focused on other aspects of therapeutic development, the goal
established by the National Alzheimer's Project Act of effectively
treating or preventing Alzheimer's disease by 2025 would not be
possible. But with a sustained path of increasing investment by both
private and public organizations, this goal is achievable.
Collaboration, cooperation, and coalescing within the Alzheimer's
disease research community makes the National Alzheimer's Project Act
goal achievable. Groups both public and private are working together to
further unlock the secrets of Alzheimer's disease pathology.
Without sustained increases in Alzheimer's disease research,
collaborative findings such as these would not be possible. Cure
Alzheimer's Fund has more than tripled its research funding from 2014
to the end of 2017. This has led to validation of existing theories, as
well as the development of new theories.
Because of early stage research funding provided by Cure Alzheimer'
Fund, researchers are able to gain proof of concept and initial data.
With this, researchers are then able to approach NIH for larger scale
funding. Without an increase in NIH funding for Alzheimer's disease
research, these new theories would not be able to be further reviewed
to determine if they lead to a therapy for Alzheimer's disease.
One important area where collaboration among organizations is
focused is the goal to detect Alzheimer's disease pathology earlier in
the development of the disease. The Subcommittee is well aware of the
numbers of people living with Alzheimer's disease and the cost to the
system. The Alzheimer's Association estimates that 6.0 million people
are currently living with Alzheimer's disease, and this number is
expected to reach 13.8 million by 2050. It is currently costing the
United States $277 billion to care for people living with Alzheimer's
disease, and this cost is expected to top $1 trillion by 2050.
Alzheimer's disease has the potential to bankrupt America.
It is believed that Alzheimer's disease pathology begins more than
20 years before symptoms begin to appear. Being able to detect this
pathology early and begin to treat it will have enormous positive
benefits for the healthcare system in reduced costs, as well as
enormous benefits for patients and their families.
NIH is reviewing the 2011 diagnostic guidelines to determine if
recent discoveries warrant a redefining of these guidelines. Any
redefinition would be focused on helping direct both researchers and
clinicians to better detect and diagnose Alzheimer's disease.
Cure Alzheimer' s Fund is also working on this issue. The Cure
Alzheimer's Fund Research Leadership Group recently heard a
presentation from Ron Petersen, M.D. of the Mayo Clinic and former
Chair of the National Alzheimer's Project Act Advisory Council on this
subject. Cure Alzheimer's Fund is working with NINDS to determine how
the two organizations can advance research in this area. Additionally,
Cure Alzheimer's Fund will be meeting with NIA to discuss research into
the biology of aging and how this can help to lead to a better
understanding of Alzheimer's disease pathology. It is hoped that these
discussions will lead to collaborative funding opportunities.
This type of collaboration is the path toward a cure. But, to
remain on this forward path, there needs to be consistent and sustained
funding from both private and public organizations. Cure Alzheimer's
Fund is committed to this as evidenced by the tripling of its research
budget since 2014. Since its inception in 2004, Cure Alzheimer's Fund
has funded close to $70 million, which has supported more than 100
researchers. These researchers have published more than 200 papers,
which have been cited more than 12,000 times. This investment from Cure
Alzheimer's Fund has been leveraged to more than $59 in NIH funding for
a total of close to $130 million for Alzheimer's disease research. This
has been possible because of the strong and continuing commitment to
Alzheimer's disease research exhibited by this Subcommittee.
Cure Alzheimer's Fund thanks the Subcommittee for its long-standing
commitment to increasing funding for Alzheimer's disease. Cure
Alzheimer's Fund sees itself as a partner to NIH in Alzheimer's disease
research, and the support of this Subcommittee has made that
partnership more effective.
Thank you for the opportunity to submit this written testimony and
to respectfully request at least an additional $425 million above the
final enacted level in fiscal year 2018 for fiscal year 2019 for
Alzheimer's disease research at NIH. Cure Alzheimer's Fund has worked
closely with the Subcommittee in the past, and looks forward to being
your partner as we work toward Alzheimer's disease research having the
necessary resources to end this awful disease.
Respectfully.

[This statement was submitted by Timothy Armour, President and CEO,
Cure Alzheimer's Fund.]
______

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 submit
the following testimony to the Senate Appropriations Committee's
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies on our funding requests for fiscal year 2019. We
appreciate the successful bipartisan effort by Congress earlier this
year to raise the budget caps and hope these higher numbers will allow
the Committee to prioritize funding for the vital health programs
described below. In particular, the Cystic Fibrosis Foundation
requests:
--$39.3 billion in funding for the National Institutes of Health
(NIH) to support basic, translational, and clinical science as
well as development of the next generation of researchers;
--$15.65 million for the Centers for Disease Control and Prevention's
(CDC) newborn screening program, in addition to increased
support for the CDC's flu activities and antimicrobial
resistance activities; and
--$19.9 million for the Health Resources and Services
Administration's (HRSA) heritable disorders program, a $2
million increase for the Division of Transplantation, and
increased support for HRSA's newborn screening program.
national institutes of health
NIH Supports Advances in CF through Cost-Efficient, Collaborative
Research
As the Committee considers its funding priorities for the coming
fiscal year, we urge consideration of the critical role that NIH plays
in improving the lives of patients with cystic fibrosis and other rare
diseases. Cystic fibrosis is a rare genetic disease that causes the
body to produce thick mucus that clogs the lungs and other bodily
systems, resulting in life-threatening infections, diabetes,
malnutrition, and other medical complications. Incredible progress has
been made in CF care and drug development over the last five decades.
In the 1950's, children with cystic fibrosis did not live to attend
elementary school. Today people with CF are living into their 30's,
40's, and beyond. These advancements would not have been possible
without the research supported by the NIH, and we request a funding
level of at least $39.3 billion for NIH in fiscal year 2019.
According to the NIH's RePORT system, NIH devoted $91 million to
cystic fibrosis research in fiscal year 2017, and a strong funding
partnership between NIH and the Cystic Fibrosis Foundation has enabled
additional groundbreaking research and advances. The CF Foundation
collaborates with the NIH to fund and organize initiatives at all
stages of scientific investigation from basic and translational
research to advancing new CF therapies to evaluation of existing
methods of CF care and treatment. Providing funding for the NIH is an
effective way to foster collaboration with external stakeholders,
advance new treatments for CF, and apply lessons learned from CF drug
development to bring new directions to research for other common
disorders such as chronic obstructive pulmonary disease (COPD),
pancreatic disorders, and infertility.
NIH Supports Vital Basic Research
Basic research funded by the NIH helps builds foundational
knowledge in cellular and molecular processes to help us improve our
knowledge of the underlying cause and progression of diseases like CF.
For example, researchers funded by the NIH and CFF at the University of
Alabama Birmingham and Columbia University are using cryo-electron
microscopy to better understand the structure and function of the
cystic fibrosis transmembrane regulator (CFTR) proteins inside the
body. Work like this is critical to understanding the underlying cause
of CF and may lead in the future to new targeted treatments for this
devastating rare disease.
NIH and CFF are also collaborating to tackle basic research on some
of the most complex barriers to advancing gene editing technology as a
CF therapy. Use of these new tools is especially difficult in cystic
fibrosis because the buildup of sticky mucus in the lungs of those with
CF can prevent delivery of potential gene editing treatments through
traditional methods. Earlier this year the National Heart Lung and
Blood Institute held a joint workshop with the CF Foundation to convene
researchers for a discussion on the development and evaluation of
viable gene delivery technologies in those with CF, and promising
research is ongoing in this area.
Advancing Translational Science
NIH funding for translational research tools supports the
development of new therapies for rare diseases like cystic fibrosis.
Between 2010 and 2016, NIH supported research that contributed to 210
new FDA-approved drugs, vaccines, and new indications for current
drugs.\1\ To continue this important work, the Foundation requests
robust funding for NIH's National Center for Advancing Translational
Sciences (NCATS), which catalyzes innovation by improving the
diagnostics and therapeutics development process and removing obstacles
to translating basic scientific research into treatments.
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\1\ Cleary, Ekaterina Galkina, Jennifer M. Beierlein, Navleen
Surjit Khanuja, Laura M. McNamee, and Fred D. Ledley. ``Contribution of
NIH funding to new drug approvals 2010--2016.'' Proceedings of the
National Academy of Sciences 115, no. 10 (2018): 2329-2334.
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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. Such initiatives transform the way
in which clinical and translational research is conducted and funded.
NIH Director Dr. Francis Collins has cited the CF Foundation supported
Therapeutics Development Network (TDN), a CF-dedicated clinical trials
network, as a model for TRND's innovative therapeutics development
model.
The Foundation also urges additional funding for the Cystic
Fibrosis Research & Translation Centers (CFRTCs), which provide support
for basic, preclinical, and clinical research efforts to advance
scientific knowledge and new therapies for CF at seven centers across
the country. CFRTCs are cost-efficient, providing shared resources and
facilities to enhance collaboration and multi-disciplinary work in
cystic fibrosis. NIDDK provides funding for the CFRTCs through P30
Center Core grants, which the CF Foundation is able to further support
by providing grants for individual CF researchers at the Centers.
Funding increases at NIH in recent fiscal years have provided critical
support to these programs, and momentum must continue so large centers
can continue research programs and maintain their infrastructure and
promote funding certainty for small-operation CF research programs,
which play an instrumental role in recruiting new investigators into CF
research.
Animal models are also an important, NIH-supported tool for
understanding disease progression and identifying potential new
treatments for CF and other rare diseases. The National Swine Resource
and Research Center (NSRRC), funded by the NIH and hosted at the
University of Missouri-Columbia, provides services to develop swine
models of many genetic conditions, like cystic fibrosis, in order to
facilitate research and drug development for these diseases. NIH and
the CF Foundation also jointly fund a research program at the
University of Iowa to study the effects of CF in a ferret model, and
the University of Alabama at Birmingham has used joint funding to
develop multiple CF rat models to examine methods for studying basic
mechanisms and treatment of the disease. These programs are yielding
fundamental new insights to help advance developments in the search for
life-changing treatments for CF.
Improving Clinical Care
Research in dissemination and implementation science that focuses
on integrating scientific findings and effective clinical practice into
real-world settings is crucial to providing the best possible care to
those with CF and other conditions. NIH also provides support for
advancing optimal care and treatment use for those with CF. The
OPTIMIZE study, which receives joint funding from the NIH and the CF
Foundation, has brought together hospital systems in nearly 30 States
to compare the effectiveness of combining antibiotic treatments for
lung infections in those with cystic fibrosis. Findings from this
initiative could help advance quality care for those with CF and
improve our understanding of effective use of these therapies in
specialized CF care centers.
Supporting the Next Generation of Researchers
We strongly urge the Committee to provide robust resources for the
NIH to address challenges in recruiting and retaining a strong
scientific workforce. It is difficult to recruit scientists into rare
disease research, especially in pediatric subspecialties. Robust
funding for programs like the K awards, which support early-career
investigators, are critical to attracting and retaining a strong
scientific workforce. Supporting junior investigators, especially those
who specialize in rare diseases and pediatric subspecialties is a
crucial element in the fight to find a cure for CF and countless other
diseases for which there are not adequate treatment options.
Consistent, Robust Funding for NIH is Critical for American Research
We appreciate the $3 billion funding increase provided to NIH in
fiscal year 2018. However, NIH has not yet overcome the devastating and
lasting effects of many years of sequestration and stagnant funding on
American research labs both at intramural and extramural research
institutions. Funding success rates for all investigators remain below
sustainable levels, and promising young investigators struggle to
obtain sufficient funding to remain in their respective fields. Recent
increases in funding have helped to mitigate the after effects of
stagnant funding, but this growth must continue.
Further, NIH is an important driver of the U.S. economy, providing
over 400,000 jobs and nearly $69 billion of economic output in fiscal
year 2017.\2\ Increased investment in biomedical research can provide
even greater economic benefit and support for the scientific progress
that makes the United States the international leader in biomedical
research.
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\2\ New Data Shows Economic Impact of NIH Research Funding in 50
States DC.'' United for Medical Research. February 8, 2018. http://
www.unitedformedicalresearch.com/new-data-shows-economic-impact-of-nih-
research-funding-in-50-states-dc/#.Ws9WhogbOUk.
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centers for disease control and prevention
The Centers for Disease Control and Prevention (CDC) plays an
important role in helping individuals with CF live longer, healthier
lives. Particularly, we ask you to give special consideration to CDC's
role in the facilitation of newborn screening to detect congenital
disorders, in addition to the CDC's work on antibiotic resistance and
flu.
In 2016, 62.4 percent of new CF diagnoses were detected through
newborn screening, and there is evidence that individuals diagnosed
early-on, prior to the onset of symptoms, have better lung function and
nutritional outcomes later in life. The earlier a child is diagnosed
with CF, the sooner their families and clinicians can develop a
treatment plan that includes airway clearance techniques, nutritional
therapies and medicines that may significantly reduce cumulative damage
caused by the disease. Funding for newborn screening programs from this
committee has done a tremendous amount for State-based programs.
However, more can be done to improve this critical public health
function.
In particular, the Foundation urges the Committee to provide $15.65
million (an increase of $6 million) in funding to the CDC's newborn
screening program, which is responsible for strengthening and enhancing
laboratory quality assurance programs; enabling public health
laboratories to develop and refine screening tests; conducting pilot
studies; implementing new methods to improve detection of treatable
disorders; and enhancing newborn disorder detection through the Newborn
Screening Quality Assurance Program.
The CF Foundation also calls upon the Committee to further support
the efforts of the CDC in combating antimicrobial resistance. People
with CF are subject to frequent and chronic lung infections, which are
the leading cause of morbidity and mortality for the disease. To combat
chronic lung infections, many people with CF take antibiotics as part
of their daily treatment regimen. Because people with CF are more
susceptible to lung infections, the upsurge of antibiotic resistance is
of the utmost concern. The work of the CDC to prevent the spread of
antibiotic resistant organisms through improving antibiotic prescribing
and stewardship, tracking resistance patterns, promoting immunization,
and developing new antibiotics is critical in maintaining the health of
those with CF. Through a broad agency announcement, the CDC is also
funding a project examining how to optimize therapeutic strategies to
manage polymicrobial CF lung infections. We hope the Committee will
prioritize funding for CDC's activities so this and other important
work can continue in fiscal year 2019.
Additionally, the CDC plays an important role in protecting the
safety of the public through controlling and preventing infectious
diseases. For example, the CDC is a key player in the development and
nationwide distribution of flu vaccinations as well as in flu
surveillance. People with CF are especially susceptible to contracting
the flu and, in some cases, the virus can become life-threatening and
lead to lengthy hospital stays. Because of the severity of the flu in
the CF community, we appreciate the collaborative work of the
Department of Health and Human Services, including at NIH, CDC, ASPR
and FDA to prepare for and seek to minimize the morbidity and mortality
of the flu virus every year. It is also imperative that HHS receives
the funding necessary to develop a more effective and modern universal
flu vaccine.
health resources and services administration
We also encourage the Committee to provide $19.9 million (an
increase of $6 million) for HRSA's heritable disorders program, which
evaluates the effectiveness of newborn screening and follow-up programs
and provides grants for programs to support other critical aspects of
newborn screening. Additionally, within HRSA, we encourage strong
support for the Title V Maternal and Child Health Services Block Grants
program, which provides flexible funding for States to support programs
that provide access to quality care for low-income and underserved
people and create systems of coordinated care for children with special
healthcare needs. In many States, these grants enable the provision of
comprehensive newborn screening education, services, and follow up.
Additionally, the CF Foundation appreciates the $2 million increase
in funding for the Division of Transplantation within HRSA in fiscal
year 2018 and urges the Committee to continue robust funding for the
program in fiscal year 2019. Cystic fibrosis is a degenerative disease
that can cause severe damage and ultimately failure of the lungs. Those
with CF who experience extensive lung damage may consider transplant as
a way to regain critical lung function and continue living full,
productive lives. In 2016, 1,642 individuals in the CF patient registry
identified as receiving a lung, kidney, heart, or liver transplant with
an additional 151 individuals who are approved candidates for
transplant but are on the waiting list.
The oversight HRSA provides to the transplant network through
operation of the United Network for Organ Sharing (UNOS) is crucial in
promoting the safety and efficacy of organ transplantation. In recent
years, the CF Foundation has seen a marked increase in the need for
donor lungs in our patient community. To address this need, we created
a lung transplant initiative in 2016 which offers education and support
services for CF patients seeking a lung transplant. However, we believe
that permanent changes to the geographic allocation of donor lungs are
needed to deliver lungs to the patients who need transplants the most.
To support this and other critical work at UNOS, we ask the Committee
to provide robust funding for the Division of Transplantation in fiscal
year 2019.
* * *
This is a time of great hope and optimism for the CF community and
those with other rare diseases, as more research is being conducted to
treat these life-threatening conditions. We urge you to provide at
least $39.3 billion for the National Institutes of Health as well as
robust funding for other relevant agencies to support healthcare
quality research and newborn screening. We stand ready to work with the
Committee and Congressional leaders on the challenges ahead. Thank you
for your consideration.
Sincerely.

[This statement was submitted by Preston W. Campbell, III, MD.,
President and CEO, Cystic Fibrosis Foundation.]

______

Prepared Statement of the Dave Thomas Foundation for Adoption
The Dave Thomas Foundation for Adoption offers the following
testimony requesting increased funds for the following six programs
under the supervision of the Administration for Children and Families
(ACF): Child Welfare Services (CWS), Promoting Safe and Stable
Families, the Adoption and Kinship Incentives Fund, the Adoption
Opportunities Act, the Child Abuse Prevention Treatment Act State
grants and the Community-Based Child Abuse Prevention program.
In February, Congress passed the Family First Prevention Services
Act (P.L. 115-123). The legislation has potential to expand services
that can prevent the placement of children into foster care. It
challenges States to reduce the number of children and youth in
congregate placements. It will be a challenge to States to build the
capacity and access to services (mental health, substance use, and in-
home services) and to build the infrastructure of services and
providers.
The challenge is against a backdrop of ever increasing foster care
numbers driven by the opioid epidemic in parts of the country. Since
2012, the number of children in foster care has increased by 10 percent
to 437,000 in 2016. Dave Thomas Foundation for Adoption believes it is
critical for Congress to fully fund six programs to both build capacity
to effectively implement the Family First Act, and help address the
crisis many communities are facing as foster care placement demands
explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care but does not fund services to
prevent child abuse and neglect. Child welfare strategy must
significantly increase funding for child abuse prevention. We urge
appropriators to focus more attention on primary prevention through the
Child Abuse Prevention and Treatment Act (CAPTA) and the Community-
Based Child Abuse and Neglect Prevention (CB-CAP) program.
Dave Thomas Foundation for Adoption calls on Congress to fully fund
Child Welfare Services from $269 million to $325 million and Promoting
Safe and Stable Families from $99 million in discretionary funding to
$200 million; increase funding to the Adoption Opportunities Act to $60
million; fully fund the Adoption and Kinship Incentives Fund at $75
million; fund the Child Abuse Prevention and Treatment Act (CAPTA) at
$120 million in State grants and double the funding of Community-Based
Grants for the Prevention of Child Abuse and Neglect/CB-CAP at $80
million.
Impact of Opioids on Child Abuse and Neglect and Foster Care
Earlier this year HHS, through the Secretary of Planning and
Evaluation, conducted an analysis of child welfare data and
supplemented that work with field level research. Some of the key
findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate and a 10 percent
increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While during past drug epidemics family and communities could fill
some of the gaps, today agencies report that family members
across generations may be experiencing substance use problems,
forcing greater reliance on State custody and non-relative
care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history; addressing substance
abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children in care longer, which keeps existing
homes full and unable to accept new placements.
preventing child maltreatment
The Child Abuse Prevention and Treatment Act (CAPTA) State Grants
Investing in prevention is less costly to society and the
government than trying to treat problems later. Successful prevention
of child maltreatment means better outcomes for children and can
prevent the need for future intervention services or foster care.
We are pleased with the 2018 $60 million increase for CAPTA to $85
million. As Congress looks to implement CAPTA provisions for plans of
safe care, we ask the Committee to appropriate a full $120 million for
CAPTA State grants. The Family First Act provides important
intervention services to prevent foster care placements. It is the role
of CAPTA and CB-CAP to fund the prevention of child abuse.
The 1974 Child Abuse Prevention and Treatment Act (CAPTA) has
helped establish national standards for reporting and response
practices for States to include in their child protection laws. CAPTA
is the only Federal legislation exclusively dedicated to preventing,
assessing, identifying, and treating child abuse and neglect.
Successful prevention means better outcomes for children and can
prevent the need for intervention services such as foster care.
According to Prevent Child Abuse America (PCA), child abuse and
neglect affects over one million children each year. Child abuse and
neglect costs our Nation $220 million every day through increased
investigations, foster care, healthcare costs, and behavioral health
costs and treatment. Additional costs may include special education,
juvenile and adult crime, chronic health problems, and other costs in a
life span. According to PCA, we paid $80 billion to address child abuse
and neglect in 2012. Funding CAPTA State grants beyond the small
allocation of $25 million in recent years can help develop greater
accountability and a stronger continuum of child prevention and child
protection.
The Community-Based Grants for the Prevention of Child Abuse and
Neglect (CB-CAP)
Another key prevention program is the Community-Based Grants for
the Prevention of Child Abuse and Neglect (CB-CAP), which provides
funds to States to support, develop, operate, and expand a network of
community-based, prevention-focused family support programs. Funds
coordinate family resources among a range of local public and private
organizations.
Dave Thomas Foundation for Adoption asks for a doubling of funds
from $40 million to $80 million. The advantage of this increase is that
it is community-based, it is targeted to prevention and it is designed
to leverage outside sources of funding. 70 percent of funding is
allocated to States based on child population and 30 percent is based
on leveraged State, Federal and private funds. The minimum grant award
is $200,000 and States must meet minimum 20 percent cash match (not in-
kind).
In 2016, the National Resource Center for CB-CAP funded activities
covered more than 295,000 adults and caregivers as well as 289,000
children and 200,000 families, including those with disabilities. Over
29.4 million families were reached through public awareness activities
funded by CB-CAP. These services included 21,697 parents and 19,710
children with disabilities.
Each State application must describe actions the lead agency
(frequently a Children's Prevention Trust Fund) will take to advocate
systemic changes in State policies, practices, procedures and
regulations to improve the delivery of community-based child abuse and
neglect prevention programs and activities designed to strengthen and
support families to prevent child abuse. Some of the recent work
includes: 22 States working with tribes or tribal organizations, 14
States working on human trafficking initiatives, 43 States providing
outreach and/or local programs to rural populations, and 33 States
using CB-CAP funds for fatherhood initiatives and programs.
A doubling of funding will support a significant expansion in the
number of children and families served. More States might be able to
move toward a comprehensive service system, particularly where family
needs are more challenging, complex and complicated. Small States that
have low child populations and, as a result, receiving the lowest
amounts from CB-CAP, would likely be able to increase their ability to
provide services that would show greater impact.
This doubling of funding could also assist in addressing a need for
CB-CAP State lead agencies to evaluate their efforts to know what is
working, to refine and adjust services as needed and to ensure their
services are the best fit for their population. In addition to
supporting proven effective strategies, it has always been the role of
CB-CAP lead agencies to identify, assess and fund emerging, innovative
ideas and to evaluate them to determine whether continued funding is
warranted. This will help in the development of programs to be
replicated in Family First.
family first act
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community-based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post-discharge services for children
leaving institutional care. Child welfare agencies need to find and
support more family-based foster care homes. These four funds can help
States develop evidence-based services that will meet the ``well-
supported,'' ``supported,'' and ``promising'' standards of the law and
can assist in the coordination of community-based behavioral health and
human services.
Child Welfare Services (CWS), Title IV-B part 1
We ask for $325 million for Child Welfare Services, the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet the evidence standards.
Promoting Safe and Stable Families (PSSF), Title IV-B part 2
We also asking for full funding of $200 million for Promoting Safe
and Stable Families. Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
The Adoption Opportunities Act
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently to promote adoptions of
older youth in foster care and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post-adoption services to families.
The Adoption and Kinship Incentive Fund
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014, it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has been not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. The 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018
in September, there will be $25 million remaining. That will likely
fall short to fully fund the incentives, so we would ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services and can
be used to build evidence-based adoption services and include post-
adoption counseling and services that can prevent and reduce adoption
disruption.
Thank you for your consideration of this testimony; the Dave Thomas
Foundation for Adoption stands ready to respond to your questions and
concerns.

[This statement was submitted by Rita Soronen, President & CEO,
Dave Thomas Foundation for Adoption.]
______

Prepared Statement of the Deadliest Cancers Coalition
The Deadliest Cancers Coalition is a collaboration of national
nonprofit organizations focused on addressing issues related to our
Nation's most lethal cancers, which were defined in the Recalcitrant
Cancer Research Act (Public Law 112-239) as those with a 5-year
relative survival rate below 50 percent. While any cancer with a
survival rate below 50 percent is considered part of this group, it is
notable that the definition currently includes seven site-specific
cancers: brain, esophageal, liver, lung, ovarian, pancreatic, and
stomach. We appreciate the opportunity to submit this statement in
support of strengthening the Federal investment in deadliest cancers
research conducted and supported by the National Institutes of Health
(NIH) and the National Cancer Institute (NCI).
We deeply appreciate the Subcommittee's leadership in securing the
$3 billion increase for the NIH in the fiscal year 2018 Omnibus
Appropriations bill, which brought their funding level to $37.084
billion and provided $5.965 billion for the NCI. For fiscal year 2019,
the Deadliest Cancers Coalition respectfully requests that NIH receives
$39.3 billion, including funding provided through the 21st Century
Cures Act, and $6.375 billion for the NCI.
The deadliest cancers offer a powerful example of the need for
continuing the path you started in fiscal year 2016 of providing
significant increases for the NIH and NCI. Critical progress has been
made, thanks in part to the funding increases, and yet we are still far
short of our goal of significantly improving survival.
This year, the coalition is marking the 10th anniversary of our
founding. We have made some important progress in the last 10 years,
most notably, the 5-year survival rates have increased at least
slightly for most of the deadliest cancers. While the increases have
been relatively small (in the range of 2 to 7 percent), they represent
important progress as each percentage point increase represents
thousands of patients who get to live longer than they would have 10
years ago. Further, myeloma, which was considered one of the deadliest
cancers in 2008 with a 5-year survival rate of 34 percent,
``graduated'' out of the deadliest cancers definition in 2016 and now
has a 5-year survival rate of 51 percent. These are successes worth
celebrating, but it is critical to remember that the 5-year survival
rate for all of these cancers is far below average as the 5-year
survival rate for all cancers combined is now 67 percent.
Five Year Survival Rates for the Deadliest Cancers Compared to the
Overall Cancer Survival Rate (2008-2018):

------------------------------------------------------------------------
Est. 2018 5- Est. 2008 5-
year Survival year Survival
Rates Rates
------------------------------------------------------------------------
Brain................................... 35% 35%
Esophageal.............................. 19% 16%
Liver................................... 18% 11%
Lung.................................... 18% 15%
Myeloma................................. 51% 34%
Ovarian................................. 47% 45%
Pancreas................................ 9% 5%
Stomach................................. 31% 24%
ALL CANCERS............................. 67% 66%
------------------------------------------------------------------------

It is worth noting that over the last decade, NCI funding has also
increased for most of the deadliest cancers. There has been a 33
percent increase in overall funding for the deadliest cancers since
fiscal year 2007, from $634 million to $841 million in fiscal year
2016, the latest year that is available on NCI's Funded Research
Portfolio (NFRP). While we applaud the upward trend of funding, the low
survival rates show that continued partnership between NCI and the
research/patient community is critical to developing the new treatments
and early detection tools that are so desperately needed by patients
with one of the deadliest cancers.
NCI has taken important steps to address some of these cancers
since the passage of the Recalcitrant Cancer Research Act in 2012.
However, there is still a great deal of advancement that needs to be
made. It is therefore vital that Congress not only provide sufficient
funding for the NCI, but also continue to shine a light on these
cancers so that they do not slip back into the shadows. The Deadliest
Cancers Coalition has submitted report language to Subcommittee that we
believe will help our members have more productive conversations and
collaboration with NCI to determine ways in which we can work together
to improve survival.
In addition to the need to continue the fight on the Nation's
deadliest cancers, robust increases for NCI are also needed to fill the
gap left after many years of flat funding. Even with the recent
increases, NCI purchasing power is still 16 percent below 2003 levels.
Further, while we know that NIH research supports more than 400,000
jobs and nearly $69 billion in economic activity across the United
States, the NIH budget currently represents less than 1 percent of the
Federal budget. We encourage you to continue the robust increases for
NIH and NCI so that we can not only increase the number of lives that
are saved, but also continue to reap the economic rewards that NIH
supported research offers to our communities.
The Deadliest Cancers Coalition was founded because we believe that
every patient diagnosed with cancer should have at least a 50 percent
chance shot at survival. Unfortunately, in 2018, nearly half of all
cancer-related deaths will be due to one of the deadliest cancers--a
statistic that is largely unchanged since we were founded. We clearly
still have a long road ahead of us to see more cancers ``graduate'' out
of being considered a recalcitrant cancer. We therefore urge the
Subcommittee to continue its leadership to ensure that NIH receives
$39.3 billion for fiscal year 2019, including funding provided through
the 21st Century Cures Act, and $6.375 billion for the NCI and that you
continue to shine a light on these cancers through report language.
The Deadliest Cancers Coalition:

American Association for the Study of Liver Diseases
American Gastroenterological Association
American Liver Foundation
American Society for Gastrointestinal Endoscopy
Asbestos Disease Awareness Organization
Blue Faery: The Adrienne Wilson Liver Cancer Association
Debbie's Dream Foundation: Curing Stomach Cancer
Digestive Disease National Coalition
Esophageal Cancer Action Network
Hepatitis B Foundation
Lung Cancer Alliance
Mesothelioma Applied Research Foundation
National Brain Tumor Society
National Pancreas Foundation
Ovarian Cancer Research Fund Alliance
Pancreatic Cancer Action Network
Society of Gynecologic Oncology
TargetCancer Foundation

______

Prepared Statement of the Digestive Disease National Coalition
the coalition's fiscal year 2019 l-hhs appropriations recommendations
_______________________________________________________________________

--$8.445 billion in program level funding for the Centers for Disease
Control and Prevention (CDC), which includes budget authority,
the Prevention and Public Health Fund, Public Health and Social
Services Emergency Fund, and PHS Evaluation transfers.
--$50 million for Colorectal Cancer Prevention.
--$1 million for Inflammatory Bowel Disease.
--$134 million for the Division of Viral Hepatitis.
--At least $39.3 billion in program level funding for the National
Institutes of Health (NIH).
--$2.28 billion for the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK).
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the digestive disease community. As you work to craft the
fiscal year 2019 L-HHS Appropriations Bill, we hope you will support
proportional funding increases for the National Institutes of Health
and the Centers for Disease Control and Prevention.
about the coalition
The Digestive Disease National Coalition (DDNC) is an advocacy
organization comprised of the major national voluntary and professional
societies concerned with digestive diseases. DDNC focuses on improving
public policy and increasing public awareness with respect to diseases
of the digestive system. DDNC's mission is to work cooperatively to
improve access to and the quality of digestive disease healthcare in
order to promote the best possible medical outcome and quality of life
for current and future patients.
about digestive diseases
Digestive diseases are disorders of the digestive tract, which
includes the esophagus, stomach, small and large intestines, liver,
pancreas, and the gallbladder; as such, these diseases range from
digestive cancers to functional GI and motility disorders, and
everything in between. Some of these diseases are classified as acute,
as they occur over a short period of time, while others are chronic,
life-long conditions. 60 to 70 million Americans are affected by these
diseases, accounting for 21.7 million hospitalizations and $141.8
billion in healthcare costs.
centers for disease control and prevention
DDNC joins the public health community in asking Congress to
provide the Centers for Disease Control and Prevention (CDC) with
$8.445 billion through fiscal year 2019, which includes budget
authority, the Prevention and Public Health Fund, Public Health and
Social Services Emergency Fund, and PHS Evaluation transfers. The CDC
houses several important programs related to digestive diseases,
including colorectal cancer, inflammatory bowel disease (IBD), and
viral hepatitis.
The Colorectal Cancer Control Program (CRCCP) helps States and
tribes across the United States increase colorectal cancer screening
rates among men and women aged 50 years and older, and an increase in
these screenings will reduce illness and death from this cancer.
Currently, the CRCCP funds 23 States, 6 universities, and one American
Indian tribe. A proportional increase in funding will ensure that more
vulnerable communities across the U.S. will gain the resources
necessary to adhere to regular colorectal cancer screening.
The CDC has led an epidemiological study of IBD to understand
incidence, prevalence, demographics, and healthcare utilization. The
study's goal is to learn more about the causes of IBD in order to
improve care and target interventions. A modest increase in funding
will allow CDC to improve treatments and diagnostics for patients with
IBD, including Crohn's disease and ulcerative colitis.
The Division of Viral Hepatitis (DVH), in collaboration with
domestic and global partners, provides the scientific and programmatic
foundation and leadership for the prevention and control of hepatitis
virus infections and their manifestations. Its three branches,
Epidemiology and Surveillance, Prevention, and Laboratory, work to
prevent viral hepatitis infections and associated liver disease.
Increases in funding for DVH will allow the Division to achieve the
imperatives, objectives, and strategies outlined in its 5-year
strategic plan to decrease disease incidence, morbidity and mortality,
and health disparities.
national institutes of health
DDNC joins the broader medical research community in thanking
Congress for providing a $3 billion funding increase for NIH for fiscal
year 2018 and in requesting at least a subsequent $2 billion funding
increase for fiscal year 2019 to bring NIH's budget up to $39.3
billion, which is consistent with the necessary level of funding
identified through the 21st Century Cures Act. Strengthening the
Nation's biomedical research enterprise through NIH fosters economic
growth and sustains innovations that enhance the health and well-being
of the American people. In this regard, please also provide a
proportional increase of $2.28 billion for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) for fiscal year
2019. NIDDK supports basic, translational, and clinical research into
various diseases such as inflammatory bowel disease (IBD), pancreatic
cancer, gastroparesis, and others. This federally-funded research often
serves as a catalyst with industry turning medical breakthroughs and
scientific advancements into innovative therapies and cutting-edge
diagnostic tools.
Thank you for the opportunity to testify before your committee and
for you time and consideration of our requests.

[This statement was submitted by Dr. Ralph Mckibbin, MD, President,
Digestive Disease National Coalition.]
______

Prepared Statement of the Dystonia Medical Research Foundation
summary of recommendations for fiscal year 2019
_______________________________________________________________________

--Provide $39.3 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue dystonia research supported by 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 that have demonstrated a
great benefit to patients and have been particularly useful for
controlling patient symptoms. Botulinum toxin (e.g., Botox, Xeomin,
Disport and Myobloc) injections and deep brain stimulation 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
The Dystonia Medical Research Foundation urges the Subcommittee to
continue its support for natural history studies on dystonia that will
advance the pace of clinical and translational research to find better
treatments and a cure. In addition, we encourage Congress to continue
supporting NINDS, NIDCD, and NEI in conducting and expanding critical
research on dystonia.
Currently, dystonia research at NIH is supported by the National
Institute of Neurological Disorders and Stroke (NINDS), the National
Institute on Deafness and Other Communication Disorders (NIDCD), and
the National Eye Institute (NEI).
The majority of dystonia research at NIH is supported by 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. We are continuing our
conversations with the leadership of NINDS regarding a State of the
Science conference that will bring together researchers and
stakeholders from around the country to discuss the critical needs in
researching dystonia. We were pleased to see Congress has directed
NINDS to continue discussions about this important opportunity to
advance research and we look forward to continuing our discussions with
NINDS to facilitate a conference.
NIDCD and NEI also support research on dystonia. NIDCD has funded
many studies on brainstem systems and their role in spasmodic
dysphonia, or laryngeal dystonia. 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 render a patient legally blind due to a patient's inability to open
their eyelids. We were pleased to see that Congress has encouraged both
NIDCD and NEI to expand their research into both spasmodic dysphonia
and belpharospasm.
We thank the committee for the $3 billion increase for NIH in
fiscal year 2018. We know firsthand that this will further NIH's
ability to fund meaningful research that benefits our patients.
Patient Perspectives
My dystonia first presented when I was about 8 years old and my
parents took me to many, many doctors. My foot and leg would turn in
when I tried to walk--making walking very difficult. The kids at school
would tease me and called me names like ``mental foot''. When I
couldn't explain it, they teased me more. Finally, at the age of 12 the
diagnosis of dystonia was made. I have the genetic form of dystonia--
DYT1 dystonia that is generalized and commonly affects children between
the ages of 8 to 15. For me, dystonia spread from my left foot to both
legs, my arms and my back. When I walked, my back would arch and put a
lot of pressure on the bottom of my spine which was pretty painful. My
legs were very tight. My right foot started to turn in and that put
pressure on my ankle when I walked. My right arm was very tight, so
when I had to write it was painful. I decided to pursue Deep Brain
Stimulation for my dystonia when it became too painful to walk with my
son to the park that was around the corner from our house. The results
have been life-changing. My wife and sons now have a husband and father
who, despite having dystonia, is physically able to be active and a
part of their lives. It isn't a cure but a treatment that really worked
for me. We need NIH to support dystonia research so we can advance our
understanding of dystonia and have all affected by dystonia have the
chance for a full and productive life.
I drive through Atlanta's brutal traffic when suddenly, my eyes
clamp shut. I pry my left eye open with thumb and forefinger, steer
with my right hand. My eyes open for a few seconds, then close with no
warning. What is happening? Over the next few months, these spasms
progress from eyes to lower face, neck and shoulders. A year later I am
diagnosed with Dystonia, a debilitating, little-known disease. A
healthy 49-year-old mother of three, I now fight constant pain; can no
longer work, drive or perform basic activities. Even walking our dog is
a dangerous fall risk.
Dystonia has no cure. Botox injections offer temporary relief for
some, but limited insurance coverage after deductibles is an enormous
financial burden, costing thousands of dollars. Health Care reform that
denies pre-existing conditions will force me to discontinue treatment.
As one of hundreds of thousands of Dystonia sufferers, I ask Congress
to fund NIH research.
Spasmodic dysphonia (SD), a focal form of dystonia, is a
neurological voice disorder that involves ``spasms'' of the vocal cords
causing interruptions of speech and affecting voice quality. My voice
sounds strained or strangled with breaks where no sound is produced.
When I am having trouble with my voice, it is difficult for others to
understand me. As a middle school math teacher, students and parents
depend on me to speak loudly and clearly. I have had to step down and
enlist a substitute to take my place when I cannot communicate well.
During these periods, I even have trouble with everyday tasks and
interactions and have to write notes and use gestures when I talk with
others. I receive injections of botulinum toxin into my vocal cords
every 3 months for temporary relief of symptoms. This has worked well
for me for over a decade. At the start of this year, my insurance
coverage changed when my husband's company changed providers. As a
result, I had to undergo an extensive review process and change methods
for obtaining my medicine. The review lasted for four weeks. Multiple
times during this time period, my doctor and I were told that I had
been denied coverage. We had to make numerous phone calls to encourage
the company and specialty pharmacy to review my case again and again.
These phone calls were extremely difficult as my voice deteriorated
from the delay in treatment. The automated phone systems were the
worst, but the representatives also had trouble understanding my broken
voice and I had to repeat my information over and over. Finally, the
company determined my treatment is medically necessary and has approved
it for 1 year. After a seven week delay, I am scheduled for my
injection and am looking forward to a period of spasm-free speaking.
DMRF was founded in 1976. 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 wellbeing 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.

[This statement was submitted by Janet Hieshetter, Executive
Director, Dystonia Medical Research Foundation.]
______

Prepared Statement of The Education Trust
On behalf of The Education Trust, an organization dedicated to
closing long-standing gaps in opportunity and achievement separating
low-income students and students of color from their peers, thank you
for the opportunity to present testimony on the fiscal year 2019 Labor,
Health and Human Services, Education and Related Agencies
Appropriations bill. While there are many programs under your
jurisdiction that are critical to advancing equity, for fiscal year
2019, The Education Trust is focused on two: strengthening the Pell
Grant program by increasing the maximum award to at least $6,230 and
lifting the ban on Pell eligibility for students who are incarcerated;
and supporting teachers and school leaders by level funding ESSA's
Title II-A ($2.055B), the Teacher and School Leader Incentive Program
($200 million), the Supporting Effective Educator Development Program
($75 million) and restoring funding to the School Leader Recruitment
and Support Program ($14.5M).
strengthening the pell grant program
The Pell Grant program is the cornerstone of Federal financial aid.
Created in 1972 as the Basic Educational Opportunity Grant, the program
now benefits over 7.5 million students and continues to serve as the
primary Federal effort to open the door to college for low-income
students. Over one-third of White students, two-thirds of Black
students, and half of Latino students rely on Pell Grants every
year.\1\ Pell Grant dollars are well-targeted to those in need: 83
percent of Pell recipients come from families with annual incomes at or
below $40,000, including 44 percent with annual family incomes at or
below $15,000.\2\
---------------------------------------------------------------------------
\1\ Congressional Budget Office (CBO), January 2017 baseline
projections for the Pell Grant program, http://bit.ly/2mLy0nk, Table 2;
and Ed Trust calculation NPSAS:12 using PowerStats.
\2\ https://www2.ed.gov/finaid/prof/resources/data/pell-2014-15/
pell-eoy-2014-15.html.
---------------------------------------------------------------------------
Increasing the Maximum Award
The Pell Grant program's impact is shrinking as the maximum award
has failed to keep pace with the rapidly rising cost of college. The
purchasing power of the Pell Grant has dropped dramatically since the
program's inception. In 1980, the maximum Pell Grant award covered 76
percent of the cost of attendance at a public university. Today, it
covers just over 29 percent, the lowest portion in over 40 years. The
purchasing power of Pell will further decrease with the expiration of
automatic inflation adjustments at the end of the 2017-18 award year.
If the maximum award continues to be frozen at its current level, the
grant will cover just one-fifth of college costs in 10 years.
We very much appreciate the $175 increase in the maximum award in
the fiscal year 2018 omnibus appropriations bill, and we respectfully
request that you continue to increase the maximum award amount. For
fiscal year 2019, the maximum award should be increased to at least
$6,230 to continue to keep pace with inflation. We also ask Congress to
restore the mandatory adjustment for inflation and set an ambitious
plan to reverse the downward trend of Pell's purchasing power.
Restoring Pell Eligibility to Students Who Are Incarcerated
The evidence on the impact of providing higher education
opportunities for individuals who are incarcerated is clear. Research
shows that correctional education programs reduce the rate of
recidivism by 43 percent, increase the rate of employment after release
by 13 percent, and are associated with fewer violent incidents in
participating prisons. These programs result in net savings to
taxpayers and are significantly more cost efficient than incarceration
alone. They also represent an essential strategy for breaking the
cycles of incarceration and poverty and helping formerly incarcerated
individuals reintegrate into society. There are also significant
intergenerational benefits for the more than 5 million children in our
country with one or more parent who is or has been incarcerated.
But despite the significant and positive impacts of prison
education programs, Congress instituted a ban on the use of Federal
Pell Grants by incarcerated students in the 1994 Violent Crime Control
and Law Enforcement Act. The number of postsecondary education programs
in prisons subsequently dropped from over 350 in 1990 to only a dozen
in 2005. The percentage of incarcerated individuals participating in
postsecondary education programs also dropped from 14 percent in 1991
to 7 percent in 2004. Restoring Pell eligibility for incarcerated
individuals would support the expansion of such programs and yield
significant benefits for participating students and society as a whole,
advancing justice while making our communities safer and saving
taxpayers money. Further, before the ban, the percentage of Pell Grant
recipients who were incarcerated was less than 1 percent of the entire
Pell Grant population; thus, this policy change can have great social
benefits that should not come at the expense of providing opportunities
for other low-income students.
For fiscal year 2019, Congress should strike paragraph 6 of section
401(b) in the Higher Education Act and restore Pell eligibility to
students who are incarcerated and in high-quality programs that support
students toward a degree.
supporting teachers and school leaders
Research and experience show the powerful impact that teachers and
school leaders have on student learning. ESSA's Title II program
provides grants to States and districts that can be used to invest in
the education profession. These funds can be used to, among other
things, address inequities in access to effective teachers and school
leaders, provide professional development, and improve teacher
recruitment and retention. States and districts can also apply for
additional competitive grant dollars for programs targeted at specific,
evidence-based strategies for improving teacher and school leader
effectiveness and increasing educator diversity.
Maintain funding for Title II-A (Supporting Effective Instruction), the
Teacher and School Leader Incentive Program (TSLIP), and the
Supporting Effective Educator Development (SEED) program
Despite the nationwide attention to the need to invest in
educators, the President's fiscal year 2019 budget request again called
for the elimination of the Title II-A grant, the TSLIP, and the SEED
program. We appreciate Congress' rejection of these requests in the
fiscal year 2018 omnibus appropriations bill. For fiscal year 2019,
Congress should continue funding Title II-A, TSLIP, and SEED at their
fiscal year 2018 levels: $2.055B, $200 million and $75 million,
respectively.
Restore Funding for the School Leader Recruitment and Support Program
Landmark research funded by the Wallace Foundation has found
``virtually no documented instances of troubled schools being turned
around without intervention by a powerful leader,'' and the School
Leader Recruitment and Support Program is the only Federal program
specifically focused on investing in evidence-based, locally driven
strategies to strengthen school leadership in high-need schools.
During the past decade, we have learned a lot about what works in
education leadership -lessons made possible, in part, by Federal
investments in the School Leader Program (the previous iteration of the
SLRSP). There is still a great deal of work to do, especially when it
comes to identifying and efficiently preparing effective turnaround
leaders, as well as sustainably supporting them to accelerate academic
achievement, close gaps, and maintain improvement over time for all
students and in every community. The SLRSP is a key lever for seeding
the next generation of effective school leader development programs,
promoting equity, advancing ongoing innovation, and sharing cutting-
edge lessons on transformational leadership with the broader field.
For fiscal year 2019, Congress should fund the School Leader
Recruitment and Support Program at $14.5M, its fiscal year 2017
appropriation level.

[This statement was submitted by John B. King Jr., President and
CEO, The
Education Trust.]
______

Prepared Statement of the Endocrine Society
The Endocrine Society thanks the Subcommittee for the opportunity
to submit the following testimony regarding fiscal year 2019 Federal
appropriations for biomedical research.
The Endocrine Society is the world's largest and most active
professional organization of endocrinologists representing more than
18,000 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 basic and clinical
scientists who receive Federal support from the National Institutes of
Health (NIH) to fund endocrine-related research on diseases that affect
millions of Americans, such as diabetes, cancer, fertility, aging,
obesity and bone disease. Our membership also includes clinicians who
depend on new scientific advances to better treat and cure these
diseases. To support necessary advances in biomedical research to
improve health, the Endocrine Society asks that the NIH receive total
funding of least $39.3 billion for fiscal year 2019.
endocrine research improves public health
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 United States' NIH-supported
scientists represent the vanguard of researchers making fundamental
biological discoveries and developing applied therapies that advance
our understanding of, and ability to treat human disease. Their
research has led to new medical treatments, saved innumerable lives,
reduced human suffering, and launched entire new industries.
Endocrine scientists are a vital component of our Nation's
biomedical research enterprise and are integral to the healthcare
infrastructure in the United States. Endocrine Society members study
how hormones contribute to the overall function of the body, and how
the glands and organs of the endocrine system work together to keep us
healthy. Consequently, endocrinologists contribute an important
understanding of how the various systems of the human body communicate
and interact to maintain health. The areas governed by the endocrine
system are broad and essential to overall wellbeing: endocrine
functions include reproduction, the body's response to stress and
injury, sexual development, energy balance and metabolism, bone and
muscle strength, and others. Endocrinologists also study interrelated
systems, for example how hormones produced by fat can influence the
development of bone disease.
endocrine research is supported by numerous nih institutes
Endocrine society members are funded by and contribute to the
scientific missions of many of the NIH Institutes and Centers (ICs),
reflecting the cross-cutting nature of endocrinology. For example:
--Endocrine researchers funded by the National Institute of Aging
help us understand how hormonal treatment for menopause might
improve stress responses in women; \1\
---------------------------------------------------------------------------
\1\ https://www.endocrine.org/news-room/press-release-archives/
2017/treating-menopausal-symptoms-can-protect-against-stress-negative-
effects Accessed March 11, 2018.
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--Scientists funded by the National Institute of Diabetes and
Digestive and Kidney Diseases, and the National Center for
Advancing Translational Sciences are helping us understand the
association between levels of thyroid-stimulating hormone (TSH)
and unexplained infertility.\2\
---------------------------------------------------------------------------
\2\ Orouji Jokar, T, et al., ``Higher TSH Levels Within the Normal
Range Are Associated With Unexplained Infertility'' The Journal of
Clinical Endocrinology & Metabolism. Volume 103, Issue 2, 1 February
2018, Pages 632--639.
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--Researchers funded by the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD) are discovering
how hormones influence the gut microbiome, which in turn can
influence the development of polycystic ovarian syndrome
(PCOS).\3\
---------------------------------------------------------------------------
\3\ Torres, PJ, et al., ``Gut Microbial Diversity in Women with
Polycystic Ovary Syndrome Correlates with Hyperandrogenism'' The
Journal of Clinical Endocrinology & Metabolism, jc.2017-02153.
---------------------------------------------------------------------------
--Endocrine oncologists supported by the National Cancer Institute
developed a new drug with a unique mechanism that could inhibit
the growth of drug-resistant prostate cancer.\4\
---------------------------------------------------------------------------
\4\ https://www.endocrine.org/news-room/press-release-archives/
2013/new-medication-treats-drug-resistant-prostate-cancer-in-the-
laboratory. Accessed March 11, 2018.
---------------------------------------------------------------------------
--Diabetologists funded by the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) are exploring new genes
and biological pathways that could prevent or reverse the
development of diabetes.\5\
---------------------------------------------------------------------------
\5\ Cinti, F, et al.,, Evidence of ?-Cell Dedifferentiation in
Human Type 2 Diabetes. The Journal of Clinical Endocrinology &
Metabolism, Volume 101, Issue 3, 1 March 2016, Pages 1044--1054.
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--Endocrinologists funded by NIDDK are also studying hormones that
influence eating behavior and metabolism might be potential
therapeutic targets for weight loss.\6\
---------------------------------------------------------------------------
\6\ Lawson, EA., The effects of oxytocin on eating behaviour and
metabolism in humans. Nat Rev Endocrinol. 2017 Dec;13(12):700-709.7
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An effective biomedical research enterprise requires a strong base
appropriation for the NIH and sustained support for all institutes and
centers. Many endocrine diseases and disorders are addressed by the
missions of multiple NIH ICs, therefore fundamental research on all
biological systems and disease states is necessary to advance effective
therapies for these diseases.
continuing resolutions threaten scientific momentum
The Endocrine Society appreciates the $7 billion in total increases
NIH has received in the fiscal year 2016, fiscal year 2017, and fiscal
year 2018 Omnibus Appropriations bills. This funding will help address
the erosion in buying power from appropriations not keeping pace with
biomedical research inflation. However, the NIH and other Federal
agencies have dealt with Continuing Resolutions (CRs) in each of these
years and in many years prior. Extended CRs, like those required in
fiscal year 2018, threaten to derail the significant progress gained
through recent funding increases; without a final appropriation, the
NIH cannot make decisions on many worthwhile grant applications, and
the overall pace of scientific discovery is severely diminished by
fiscal uncertainty. Well-regarded research projects are therefore left
waiting for confirmation of the status of their grant application, and
highly-qualified research staff are unable to put their expertise to
productive use. Or worse, labs are forced to reduce staff, putting
longstanding research programs in jeopardy. We urge you to support the
NIH on a more predictable funding schedule that allows the agency to
engage in more strategic and long-term planning.
researchers face increasing administrative burdens
The Endocrine Society recognizes that certain administrative tasks
are critical to the research process and we applaud NIH's efforts to
identify and reduce sources of administrative burden for researchers.
It is important to ensure that researchers spend more productive time
working on science, rather than applying for and reporting on grants.
We note that the modular budget cap has not increased with inflation,
and that grant applications with necessary costs above the modular
budget cap incur additional administrative responsibilities. The
Endocrine Society encourages the Committee to include report language
requesting an update from NIH in fiscal year 2020 regarding the effect
of modular budget cap increases on reducing administrative burdens
while maintaining appropriate fiscal oversight of grant costs.
nih requires steady, sustainable funding increases
The biomedical research community requires steady, sustainable
increases in funding to ensure that the promise of scientific discovery
can efficiently be translated into new cures. NIH grant success rates
are predicted to remain at historically low averages, meaning that
highly skilled scientists will continue to spend more time writing
highly meritorious grants that will not be funded. Young scientists
will also continue to be driven out of biomedical research careers due
to the lack of funding.
We may never be able to quantify the opportunities we have missed
to improve the health and economic status of the United States due to
persistent underinvestment in research. We do know however, that when
``laboratories lose financing; they lose people, ideas, innovations and
patient treatments.'' \7\ Based on the personal stories of researchers
who have been forced to curtail research programs, we know that
research programs to understand how genetics can influence heart
disease, develop therapeutic treatments for Parkinson's disease, and
evaluate the effect of metal contaminants on reproductive health, among
many others, are delayed or terminated.\8\
---------------------------------------------------------------------------
\7\ Teresa K. Woodruff ``Budget Woes and Research.'' The New York
Times. September 10, 2013.
\8\ Sequester Profiles: How Vast Budget Cuts to NIH are Plaguing
U.S. Research Labs. United for Medical Research. http://
www.unitedformedicalresearch.com/advocacy_reports/sequestration-
profiles/Accessed March 20, 2014.
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fiscal year 2019 nih funding request
The Endocrine Society recommends that the Subcommittee provide at
least $39.3 billion, representing further steady, sustainable,
increases in funding for NIH through the fiscal year 2019 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.
______

Prepared Statement of the Entomological Society of America
The Entomological Society of America (ESA) respectfully submits
this statement for the official record in support of funding for
arthropod-borne disease research at the U.S. Department of Health and
Human Services (HHS).
ESA requests $39.3 billion in fiscal year 2019 for the National
Institutes of Health (NIH). This should include increased support for
arthropod-borne disease research at the National Institute of Allergy
and Infectious Diseases (NIAID). The Society also supports increased
investment in the core infectious diseases budget and the global health
budget within the Centers for Disease Control and Prevention (CDC) to
fund scientific activities related to vector-borne diseases for a total
of $8.445 billion in fiscal year 2019.
Cutting-edge research in the biological sciences, including the
field of entomology, is essential for addressing societal needs related
to environmental and human health. Many species of insects and arachnid
(including ticks and mites) serve as vectors for an array of infectious
diseases that threaten the health and well-being of people across the
globe. This includes populations in every State and territory of the
United States and U.S. military personnel serving at home and abroad.
Vector-borne diseases can be particularly challenging to control;
effective vaccines are not available for many of these diseases, and
controlling the vectors is complicated by their mobility and their
propensity for developing pesticide resistance.
The risk of emerging infectious diseases grows as global travel
increases in speed and frequency and as environmental conditions
conducive to vector population growth continue to expand globally.
Entomological research aimed at understanding the relationships between
arthropod vectors and the diseases they transmit is essential for
reliable monitoring and prediction of outbreaks, effective prevention
of disease transmission, and rapid diagnosis and treatment of diseases.
The magnitude of the challenges presented by vector-borne diseases
cannot be overstated. Mosquitoes alone are considered responsible for
the deaths of more people than all other animal species combined,
including humans.
Given the enormous impact of arthropod vectors on human health, ESA
urges the subcommittee to support vector-borne disease research
programs that incorporate the entomological sciences as part of a
comprehensive approach to addressing infectious diseases.
NIH, the Nation's premier medical research agency, advances human
health by supporting research on basic human and pathogen biology and
by developing prevention and treatment strategies. More than 80 percent
of NIH funding is competitively awarded to scientists at approximately
2,500 universities, medical schools, and other research institutions
across the Nation. As one of NIH's 27 institutes and centers, NIAID
conducts and supports fundamental and applied research related to the
understanding, prevention, and treatment of infectious, immunologic,
and allergic diseases.
The necessity of investments in basic and translational research in
vector-borne diseases is exemplified by the dramatic spread of Zika
virus, a disease transmitted by the Aedes aegypti mosquito, across the
south western hemisphere starting in 2015. While scientists have been
aware of Zika for more than 40 years, it previously posed minimal
threat beyond contained regions. Epidemiologists identified the
emergence of this threat, and scientists quickly began working on a
vaccine, but validating safety and efficacy, once a potentially
successful therapeutic is created, takes time. In 2017, NIH began an
efficacy trial against Zika in North, Central, and South America. While
the preliminary results are promising, it will take time to confirm how
effective it is at eliciting an immune response and preventing
transmission.\1\ Furthermore, studies of the Zika pandemic continue not
only because it hasn't fully disappeared from the U.S., but also
because it can help us better respond to the next infectious disease
outbreak transmitted by arthropods.\2\
---------------------------------------------------------------------------
\1\ M Gaudinski et al. Zika Virus DNA Vaccine Candidates are Safe
and Immunogenic in Healthy Adults. The Lancet DOI: 10.1016/S0140-
6736(17)33105-7 (2017).
\2\ Morens, DM and Fauci, AS. Pandemic Zika: A formidable challenge
to medicine and public health. The Journal of Infectious Diseases DOI:
10.1093/infdis/jix383 (2017).
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NIAID has also funded research for a new model system, announced in
August 2017, to study the relationship between ticks and a type of
virus known as flaviviruses, which can be transmitted to humans. These
types of viruses include dengue fever and West Nile virus, which are
transmitted by mosquitoes, as well as Powassan virus disease and tick-
borne encephalitis, which are spread by ticks. However, the mechanism
by which these viruses infect the ticks is still poorly understood, and
researchers hope that this system will create a better and more
efficient way to support the development of countermeasures to tick-
borne viruses.\3\
---------------------------------------------------------------------------
\3\ J Grabowski et al. Flavivirus infection of Ixodes scapularis
(black-legged tick) ex vivo organotypic cultures and application for
control. mBio DOI: 10.1128/mBio.01255-17 (2017).
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To ensure funding for future groundbreaking projects of great
utility for public health, ESA supports increased funding for NIAID and
encourages the committee to support vector-borne disease research at
NIH.
CDC, serving as the Nation's leading health protection agency,
conducts scientific research and provides health information to prevent
and respond to infectious diseases and other global health threats,
irrespective of whether they arise naturally or via acts of
bioterrorism. Within the core infectious diseases budget of CDC, the
Division of Vector-Borne Diseases (DVBD) aims to protect the Nation
from the threat of viruses and bacteria transmitted primarily by
mosquitoes, ticks, and fleas. DVBD's mission is carried out by a staff
of experts in several scientific disciplines, including entomology.
CDC plays a critical role in surveillance systems for vector-borne
diseases and identifying emerging threats. The growing incidence of the
generally rare Bourbon virus, first discovered in Kansas in 2014 and
transmitted by Amblyomma americanum, better known as Lone Star ticks,
is being monitored in the Midwestern and southern States. However, very
little is known about this disease and there are currently no
medicines, so DVBD plays a central role in surveilling the threat and
disseminating information about how people can reduce their potential
exposure to ticks possibly carrying this disease.\4\
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\4\ https://www.cdc.gov/ncezid/dvbd/bourbon/index.html
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Another component of CDC's global health budget supports activities
on malaria and other parasitic diseases, which include maintaining a
global reference insectary that houses colonies of mosquitoes from
around the world to be used by the agency for studies on malaria
transmission.
Given that the contributions of the CDC are vital for the health
security of the Nation, ESA requests that the committee provide robust
support for CDC programs addressing vector-borne diseases.
ESA, headquartered in Annapolis, Maryland, is the largest
organization in the world serving the professional and scientific needs
of entomologists and individuals in related disciplines. As the largest
and one of the oldest insect science organizations in the world, ESA
has over 7,000 members affiliated with educational institutions, health
agencies, private industry, and government. Members are researchers,
teachers, extension service personnel, administrators, marketing
representatives, research technicians, consultants, students, pest
management professionals, and hobbyists.
Thank you for the opportunity to offer the Entomological Society of
America's support for HHS research programs. For more information about
the Entomological Society of America, please see http://
www.entsoc.org/.

[This statement was submitted by Michael Parrella, PhD, President,
Entomological Society of America.]
______

Prepared Statement of the Families and Friends of Care Facility
Residents
Chairman Blunt, Ranking Member Murray and Subcommittee Members,
thank you for the opportunity to testify.
I represent Families and Friends of Care Facility Residents (FF-
CFR), Arkansas' statewide parent-guardian association, an all-volunteer
501 (c) 3 organization. Most FF-CFR members have loved ones with life-
long cognitive and other developmental disabilities and most of our
family members with disabilities receive residential treatment services
at Arkansas' specialized intermediate care facilities (ICFs), which are
licensed by the office of long term care.
To understand my personal interest in the subcommittee's work, you
must understand my son, John, age 49, who suffered severe brain
injuries at birth. Mentally, he functions as a young toddler but he is
otherwise a non-verbal, physically strong and mobile middle-aged man.
John has the judgment of a one and a half year old. Our son's care is
beyond our family's capacities and for many years his safe home has
been a Medicaid-certified congregate care facility in Arkansas, which
sits in a protected park--like setting. To be federally certified
through CMS, his center must meet 8 major criteria on: management,
client protections, facility staffing, active treatment, client
behavior and facility practices, healthcare services, physical
environment and dietetic services. The center has many ``eyes on the
ground,'' with built-in safeguards to protect residents. These staff
members are important, because like a toddler, John is unable to report
if something were wrong; and like a toddler, he depends totally on
others for his health and safety.
The Protection and Advocacy System for Persons with Developmental
Disabilities (PADD) and three other programs (State Councils on
Developmental Disabilities, University Centers for Excellence in
Developmental Disabilities and Projects of National Significance) were
originally established by the Developmental Disabilities and Bill of
Rights Act of 1975 (``DD Act''). The programs were last reauthorized
for a period of 7 years in 2000 (Public Law 106-402- October 30, 2000).
Congressional appropriations to HHS have funded the P&As systems
and other DD Act programs since 1976 making them ``quasi-Federal
entities'' but with insufficient oversight and accountability. There
have been no public hearings on the DD Act and the activities of its
grantees and sub-grantees in over 20 years. The last reauthorization of
the DD Act was in 2000 and despite families' requests, there were no
Congressional hearings at the time nor have there been in the
intervening years. ACL|Administration on Intellectual and Developmental
Disabilities (AIDD) has not held public hearings since 2010 when I
traveled with two other FF-CFR members to Dallas, Texas to attend one
of the agency's ``listening'' sessions. Those of us who supported the
option of congregate care facilities were screened out of Day--Two of
the meeting and despite our request, we were not included in the
follow-up strategic planning meetings held by ACL|AIDD.
I am familiar with the DD Act programs, which operate in every
State. I served on the Arkansas State DD Council over 35 years ago and
I also have endured with other Arkansas families the aggressive attacks
by the Arkansas PADD program, now called Disability Rights Arkansas
(DRA), on the state's licensed intermediate care facilities (ICFs). The
extensive list of partisan actions by DRA aimed at undermining and
eliminating Arkansas' intermediate care facilities (ICFs) include
litigation, using named plaintiffs in litigation without consent or
notice to their families, testifying before legislative hearings
against appropriations for capital expenditures for the ICFs, smearing
a licensed facility in an inaccurate report and calling for its closure
in the media; lobbying other organizations to join in its work to close
the center; distributing and promoting false information about the
Supreme Court decision in Olmstead; and working in favor of one
Medicaid program (home and community programs) over another Medicaid
program (ICF programs).
People who lack the cognitive ability to report their hurts and
needs are particularly in need of specialized services and protection.
In 2010, the American Medical Association's Resolution 805-I-10 called
for the AMA to ``lobby Congress to work with the appropriate Federal
agencies, such as Department of Health and Human Services to classify
intellectually disabled persons as a medically underserved
population.'' ``People with developmental disabilities are
significantly more likely than others to be victims of violence .. Odds
of experiencing violence are two to three times higher for people with
disabilities as compared to those without.'' (Disability Scoop, Feb.
26, 2013). The DD Act PADD program is failing to comply with the DD Act
in protecting persons with developmental disabilities by not reporting
deaths of and serious injuries to the population. Last year in an e-
mail request, I asked the national association representing the
protection and advocacy systems (National Disability Rights Network--
NDRN): ``Do the DD Act P&A programs submit narrative reports to
ACL|AIDD on these (abuse, neglect, exploitation and mortality)
subjects? If so, please send me reports submitted to ACL|AIDD from the
Georgia Protection and Advocacy program on outcomes following the
Georgia Settlement Agreement with Department of Justice (October,
2010).'' On 02/13/2017, I received this reply from NDRN:

Finally, there were no mortality studies following GA-DOJ
settlement/transitions from State facilities-2012-present.

Media reports of the many unexpected deaths of persons with
developmental disabilities in the State of Georgia after
deinstitutionalization transfers required by the DOJ class action suit
are horrific.

Almost 10 percent of the 480 people with developmental
disabilities who have moved out of State hospitals since
July 2010 have died after their placement in community
residences.--Georgia Health News, January, 2014.

Christen Shermaine Hope Gordon was one of 500 patients in 2013
who died in community care while under the auspices of the
Georgia Department of Behavioral Health and Developmental
Disabilities. The 12-year-old was one of 82 classified as
unexpected deaths, including 68 who, like her, were
developmentally disabled. In 2014, an additional 498
patients who were receiving community care died, including
141 considered unexpected.--Augusta Chronicle, March, 2015

Of the estimated 503 residents with developmental disabilities
who have moved from State facilities into community-based
care, 79 have died, according to court documents filed by
the Federal Government in its request to hold the State in
contempt. Even more disturbing, according to an independent
consultant specializing in the transition of people from
institutions to community settings, Georgia only
investigated 38 of those 79 deaths, and the cause of death
for 29 patients was listed as ``unknown.''--Augusta
Chronicle, January, 2016

Where were the federally funded protection and advocacy services
for those vulnerable people in Georgia? The DD Act requires the
Secretary of Health and Human Services ``to prepare and submit to the
President, Congress and the National Council on Disability, a report
that describes the goals and outcomes of the [DD Act] programs,''
including ``reports of deaths of and serious injuries to individuals
with developmental disabilities.'' 42 USC 15005 SEC.105 REPORTS OF THE
SECRETARY. Where are the Secretary's reports on outcomes for people
with developmental disabilities in Georgia?
DD Act programs are not held accountable for use of their Federal
appropriations. There is insufficient oversight of their partisan
activities. There are no repercussions when P&As bring class action
lawsuits against facilities which are in good standing, or when State
DD Councils adopt 5 Year Plans of shifting funds away from ICFs and
goals of closing ICFs. There are no consequences when State Councils'
sub-grantees work to smear ICFs and engage in advocacy for closures of
ICFs. The use of funds by Projects of National Significance (PNS)
grantees and sub-grantees to undermine and eliminate ICFs for persons
with developmental disabilities goes unchallenged. Note: Examples
provided upon request.
There is something terribly wrong with government when public funds
are used to fund groups engaged in ideological pursuits. It should not
be acceptable that a public agency (HHS|ACL) charged with protecting
at-risk people cannot or will not provide the reforms required for the
DD Act programs which have used and are using grant funds to promote
across-the-board deinstitutionalization of persons with cognitive
deficits and to eliminate specialized long-term care programs for
persons unable to care for themselves.
requests for fiscal year 2019
--Please discontinue funding for P&A class action lawsuits against
Intermediate Care Facilities (ICFs);
--Please discontinue funding for activities of DD Act programs, their
sub-grantees and their national organizations to undermine and
eliminate Intermediate Care Facilities (ICFs), and
--Please insert Legislative text and Report Language in the fiscal
year 2019 Labor, Health and Human Services, Education and
Related Agencies Appropriations bill as follows:
Proposed Bill Language:
``. . . Provided further, That none of the funds made available
under this heading may be used by a Protection and Advocacy system (as
defined in the Developmental Disabilities and Assistance and Bill of
Rights Act of 2000 (Public Law 106-401) in class action litigation
against an Intermediate Care Facility (ICF) for people with
intellectual or developmental disabilities when the facility is in good
standing with its licensure requirements and funding authority.''
Proposed Report Language:
The Committee notes that in Olmstead v. L.C. (1999), a majority of
the Supreme Court held that the Americans with Disabilities Act does
not condone or require removing individuals from institutional settings
when they are unable to handle or benefit from a community-based
setting, and that Federal law does not require the imposition of
community-based treatment on patients who do not desire it.
Respectfully submitted.

[This statement was submitted by Carole L. Sherman, Public Affairs
Chair,
Families and Friends of Care Facility Residents.]
______

Prepared Statement of the Family Focused Treatment Association
The Family Focused Treatment Association (FFTA) offers the
following testimony requesting increased funds for the following
programs under the supervision of the Administration for Children and
Families (ACF): Child Welfare Services (CWS), Promoting Safe and Stable
Families, the Adoption and Kinship Incentives Fund, and the Adoption
Opportunities Act and to pass and fund S1357, the Family Based Care
Services Act, for safe facilitation of the Family First Prevention
Services Act (Public Law 115-123).
In February, Congress passed the Family First Prevention Services
Act (FFPSA). The legislation has potential to expand services that can
prevent the placement of children into foster care. It also challenges
States to reduce the number of children and youth in congregate
placements unless evidence clearly demonstrates that a family home is
insufficient treatment for their unique needs.
It will be a challenge to States to build the capacity and access
to services (mental health, substance use, and family-based services)
especially for children and youth with significant mental and
behavioral health conditions. However, Therapeutic Family/Foster Care
(TFC) is an evidence-informed and trauma-specific clinical intervention
to serve such youth in specially trained and supported families in
their community.
S1357/HR2290, the Family-based Care Services Act, requires the same
accreditation standard for TFC providers that FFPSA requires for
congregate care. The legislation offers a list of core services
required to meet the needs of these youth, all of which are presently
reimbursed by CMS when appropriately authorized by a State's Medicaid
plan.
Without passage of S1357/HR2290, the concerns of ``appropriateness
of placement'' and ``quality of provider'' that Congress addressed in
FFPSA can reappear in family, community settings. This challenge to
successful implementation of FFPSA can be remedied by inclusion of
S1357/HR2290 now in proposed SUD legislation.
i. the family first act
Our Nation faces these challenges against a backdrop of ever
increasing foster care numbers driven by the opioid epidemic in parts
of the country. Since 2012 the number of children in foster care has
increased by 10 percent to 437,000 in 2016. FFTA believes it is
critical for Congress to fully fund programs to both build capacity to
effectively implement the Family First Act and help address the crisis
many communities are facing as foster care placement demands explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care but does not fund services to
prevent child abuse and neglect, nor are there protections and
requirements offered for services to youth with high behavioral or
mental health conditions.
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community-based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post-discharge services for children
leaving institutional care. It is the opinion of FFTA that Congress
must include the protections and requirements outlined in S1357.
ii. child abuse prevention and treatment services
In addition to needed prevention services, Child welfare agencies
need to find and support more family-based foster care homes, including
kinship homes and non-relative homes for youth with high needs.
Child welfare strategy must significantly increase funding for
child abuse prevention. FFTA calls on Congress to fully fund Child
Welfare Services from $269 million to $325 million and Promoting Safe
and Stable Families from $99 million in discretionary funding to $200
million; increase funding to the Adoption Opportunities Act to $60
million; fully fund the Adoption and Kinship Incentives Fund at $75
million.
We support increased funding for these four funds that can help
States develop evidence-based services that will meet ``well-
supported,'' ``supported,'' and ``promising'' standards of FFPSA and
can assist the coordination of community and/or family-based behavioral
health and human services.
Child Welfare Services (CWS), Title IV-B part 1:
We ask for $325 million for Child Welfare Services, the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet these evidence standards.
Promoting Safe and Stable Families (PSSF), Title IV-B part 2:
We also asking for full funding of $200 million for Promoting Safe
and Stable Families. Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
The Adoption Opportunities Act:
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently to promote adoptions of
older youth in foster care and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post adoption services to families.
The Adoption and Kinship Incentive Fund:
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014 it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has been not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. Your 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018,
this September, there will have $25 million remaining. That will likely
fall short to fully fund the incentives. And we again ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services. These
funds can be used by States to build both the evidence-based adoption
services include post-adoption counseling and services that can prevent
and reduce adoption disruption. VFA thanks you for this consideration
and stands ready to respond to your questions and concerns.
iii. impact of opioids on child abuse and neglect and foster care
Earlier this year HHS through the Secretary of Planning and
Evaluation conducted an analysis of child welfare data and supplemented
that work with field level research. Some of the key findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate and a 10 percent
increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While in past drug epidemics family and communities could fill some
of the gaps, today agencies report that family members across
generations may be experiencing substance use problems forcing
greater reliance on State custody and non-relative care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history, and addressing
substance abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children longer in care which keeps existing homes
full and unable to accept new placements.
Children and infants ages 5 and under are the largest cohort of
youth newly entering out-of-home care. Their developmental, and often
physical, needs are severely impacted by their parents' addictions.
Older children struggle with increased trauma due to years of neglect
and/or separation from known parents and caregivers. Too many children
must face the death of a parent.
FFTA believes it is imperative that Congress fully fund:
--Implementation of FFPSA, including protections and requirements for
youth with significant mental and behavioral health issues as
outlined in S1357, the Family Based Services Act of 2017,
--Child abuse prevention services and treatment programs as outlined
above, and
--Training and support of the professional workforce who will deliver
this care.

[This statement was submitted by Laura Boyd, Ph.D., National
Director of Public Policy, Family Focused Treatment Association.]
______

Prepared Statement of the Family Planning Coalition
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
The undersigned organizations collectively represent millions of
providers, patients, administrators, researchers, and advocates who
support Federal funds for the Title X family planning program, which
helps ensure that millions of individuals can access high-quality
family planning and sexual health services. We share the approach of
former President George H.W. Bush, who, as the lead congressional
sponsor of the legislation that created the Title X program, said in
1969 about public funding for family planning:
We need to take sensationalism out of this topic so that it can no
longer be used by militants who have no real knowledge of the
voluntary nature of the program but, rather are using it as a
political stepping stone. If family planning is anything, it is
a public health matter.\1\
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\1\ Clare Coleman and Kirtly Jones, ``Title X: a proud past, an
uncertain future,'' Contraception 84 (2011): 209--211. http://
www.arhp.org/UploadDocs/journaleditorialsept2011.pdf.
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As you develop the fiscal year 2019 funding framework for the
Labor, Health and Human Services, Education, and Related Agencies
appropriations bill, we respectfully request that you similarly
recognize the essential role of publicly funded family planning and
sexual healthcare services by funding Title X at $327 million in fiscal
year 2019.
Title X helps more than 4 million people access family planning and
related services at nearly 4,000 health centers around the country
annually.\2\ For many individuals, particularly those who are low-
income, uninsured or adolescents, Title X is essential to their ability
to affordably and confidentially obtain birth control, cancer
screenings, STI tests, complete and medically accurate information
about their sexual health and family planning options, and other basic
care. Six in ten women seen at a Title X-supported healthcare center
have reported that the center was their usual source of medical
care.\3\ In 2015 alone, the contraceptive services supported by Title X
helped women avoid 822,000 unintended pregnancies, which would have
resulted in 387,000 unplanned births and 278,000 abortions.\4\
---------------------------------------------------------------------------
\2\ Christina Fowler et al, ``Family Planning Annual Report: 2016
National Summary,'' RTI International (August 2017). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2016-national.pdf.
\3\ Adam Sonfield, Kinsey Hasstedt, and Rachel Gold, ``Moving
Forward: Family Planning in the Era of Health Reform,'' Guttmacher
Institute (March 2014). https://www.guttmacher.org/report/moving-
forward-family-planning-era-health-reform.
\4\ Jennifer Frost et al, ``Publicly Funded Contraceptive Services
at U.S. Clinics, 2015,'' Guttmacher Institute (April 2017). https://
www.guttmacher.org/report/publicly-funded-contraceptive-services-us-
clinics-2015.
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In addition to direct clinical care, Title X supports critical
needs, such as staff training, that are not reimbursable under Medicaid
or private insurance. Notably, research has shown that Title X-
supported services save the Federal and State Governments approximately
$7 billion a year,\5\ and 75 percent of American adults--including 66
percent of Republicans, 75 percent of Independents, and 84 percent of
Democrats--support the program.\6\
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\5\ Adam Sonfield, ``Beyond Preventing Unplanned Pregnancy: The
Broader Benefits of Publicly Funded Family Planning Services,''
Guttmacher Policy Review (December 2014). https://www.guttmacher.org/
gpr/2014/12/beyond-preventing-unplanned-pregnancy-broader-benefits-
publicly-funded-family-planning.
\6\ Survey Says: Birth Control Support, The National Campaign to
Prevent Teen and Unplanned Pregnancy (2017). https://
thenationalcampaign.org/resource/survey-says-january-2017.
---------------------------------------------------------------------------
In spite of the increasing need for publicly funded family planning
services and the demonstrated public health and fiscal benefits of the
program, Title X investments have been substantially cut in recent
years. From 2010 to 2014 the number of women who needed publicly funded
family planning services increased by 1 million,\7\ but Congress cut
Title X's funding by $31 million over that period. That decrease
unfortunately corresponds to dramatic decreases in the number of
patients served at Title X--funded sites; the numbers dropped from 5.22
million in 2010 \8\ to just over 4 million in 2016.\9\
---------------------------------------------------------------------------
\7\ Jennifer Frost, Lori Frohwirth and Mia Zolna, ``Contraceptive
Needs and Services, 2014 Update,'' Guttmacher Institute (September
2016). https://www.guttmacher.org/report/contraceptive-needs-and-
services-2014-update.
\8\ Christina Fowler et al, ``Family Planning Annual Report: 2010
National Summary,'' RTI International (August 2011). https://
www.hhs.gov/opa/sites/default/files/fpar-2010-national-summary.pdf.
\9\ Fowler et al, ``Family Planning Annual Report: 2016 National
Summary.''
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Congress has yet to restore the program's funding to $317 million,
its peak investment (which was the appropriation in fiscal year
2010).\10\ The reduced program investment is counter to research
published in the American Journal of Public Health stating that Title X
would need at least $737 million to support all women in need of
publicly funded family planning services.\11\ We are deeply concerned
about diminishing access to high-quality family planning and sexual
health services and urge Congress to increase funding for Title X to
$327 million in fiscal year 2019 to reverse this devastating trend.
---------------------------------------------------------------------------
\10\ Title X (Public Health Service Act) Family Planning Program,
Congressional Research Service (2017).
\11\ Euna August, et al, ``Projecting the Unmet Need and Costs for
Contraception Services After the Affordable Care Act,'' American
Journal of Public Health (February 2016): 334-341.
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Beyond these fiscal challenges, Title X is facing administrative
threats to the integrity of the program and the provider network.\12\
For example, in the recently released fiscal year 2018 Funding
Opportunity Announcement (FOA), the administration removed all
references to and requirements for Title-X funded providers to follow
the nationally recognized clinical standards for family planning care,
known as the Quality Family Planning guidelines, which were jointly
developed by the Office of Population Affairs and the CDC in 2014.\13\
It also eliminated all mentions of contraception, the provision of
which is central to the mission of Title X. On top of these noteworthy
changes, the administration made a number of troubling amendments to
the FOA's selection criteria aimed at making it more difficult for
reproductive health-focused providers to participate in the program
while potentially opening the door for the participation of
ideologically-motivated organizations with little or no experience in
providing healthcare.\14\ The administration's approach, in short,
threatens access to basic, preventive healthcare for millions of
individuals in communities across the country.
---------------------------------------------------------------------------
\12\ Note that we do not address the draft NPRM released on HHS'
website on May 22, 2018, as the rule has not been published.
\13\ Loretta Gavin et al, ``Providing Quality Family Planning
Services: Recommendations of the CDC and the U.S. Office of Population
Affairs,'' Morbidity and Mortality Weekly Report 63.4 (2014).
\14\ Office of Population Affairs, ``Announcement of Anticipated
Availability of Funds for Family Planning Services Grants,'' Funding
Opportunity PA-FPH-18-001. (2018).
---------------------------------------------------------------------------
Supporting and strengthening the program is a smart investment in
public health--a fact that has been recognized by members of both
parties for over 45 years. Now a renewed commitment is needed to allow
this critical component of our Nation's safety net to continue its
mission and deliver the health, social, and economic benefits that have
made such a difference in the lives of so many.
If you have any questions or would like additional information,
please contact Lauren Weiss at the National Family Planning &
Reproductive Health Association at [email protected].
Thank you for considering these requests.
Sincerely,

AIDS Action Baltimore
AIDS Alabama
AIDS Alliance for Women, Infants, Children, Youth & Families
AIDS Foundation of Chicago
American Academy of HIV Medicine
American Academy of Pediatrics
American Atheists
American Civil Liberties Union
American College of Nurse-Midwives
American College of Obstetricians and Gynecologists
American Psychological Association
American Public Health Association
American Sexual Health Association
American Society for Reproductive Medicine
Association of Nurses in AIDS Care
Association of Reproductive Health Professionals (ARHP)
Association of Schools and Programs of Public Health
Association of Women's Health, Obstetric and Neonatal Nurses
Black Women's Health Imperative
Cascade AIDS Project
Catholics for Choice
Center for Reproductive Rights
Equality California
Equality North Carolina
Feminist Majority Foundation
Girls Inc.
Hadassah, The Women's Zionist Organization of America, Inc.
Healthy Teen Network
HIV Medicine Association
Human Rights Campaign
In Our Own Voice: National Black Women's Reproductive Justice Agenda
Los Angeles LGBT Center
March of Dimes
NARAL Pro-Choice America
NASTAD
National Abortion Federation
National Asian Pacific American Women's Forum (NAPAWF)
National Association of County and City Health Officials
National Center for Lesbian Rights
National Coalition of STD Directors
National Council of Jewish Women
National Family Planning & Reproductive Health Association
National Health Law Program
National Institute for Reproductive Health (NIRH)
National Latina Institute for Reproductive Health
National Organization for Women
National Partnership for Women & Families
National Women's Health Network
National Women's Law Center
National Working Positive Coalition
PAI
People For the American Way
Physicians for Reproductive Health
Planned Parenthood Federation of America
Population Connection Action Fund
Population Institute
Power to Decide
Sexuality Information and Education Council of the United States
(SIECUS)
Society for Adolescent Health and Medicine
Society for Maternal-Fetal Medicine
The AIDS Institute
Treatment Action Group
Unite for Reproductive & Gender Equity

______

Prepared Statement of the Federation of American Societies for
Experimental Biology
The Federation of American Societies for Experimental Biology
(FASEB) respectfully requests a minimum of $39.3 billion in fiscal year
2019 for the National Institutes of Health (NIH) within the Department
of Health and Human Services.
FASEB, a federation of 30 scientific societies, represents over
130,000 life scientists and engineers, making it the largest coalition
of biomedical research associations in the United States. Our mission
is to advance health and welfare by promoting progress and education in
biological and biomedical sciences.
The National Institutes of Health (NIH) is the Nation's largest
funder of basic biomedical research, providing competitive grants to
more than 300,000 scientists at universities, medical schools,
independent research institutions, and biotechnology companies in
nearly every State and congressional district.
Increased longevity, a reduced number of deaths from heart disease
and stroke, the development of the first hepatitis A and Ebola
vaccines, and research that led to treatments for rare autoinflammatory
diseases--all are part of NIH's outstanding legacy.\1\
---------------------------------------------------------------------------
\1\ https://www.nih.gov/about-nih.
---------------------------------------------------------------------------
Today, new breakthroughs in biomedical research are transforming
medicine. Cancer immunotherapy harnesses a patient's own immune system
to fight cancer and is giving new hope to patients who once faced dire
prognoses. Groundbreaking discoveries are enabled by a renewed
congressional commitment to NIH, including new funding authorized
through the 21st Century Cures Act. But there is much work to be done;
in real dollars, the NIH budget is approximately 12 percent below the
fiscal year 2003 level (Figure 1). Congress must marshal additional
resources.
Figure 1: NIH Appropriations

Continued progress towards new cures and better therapies also
requires support for the best and brightest young scientists. The
current funding environment makes it more difficult for younger
scientists to establish and maintain independent research careers, and
to pursue innovative scientific directions.\2\ NIH must be able to
provide sufficient support for these essential members of the
biomedical workforce.
---------------------------------------------------------------------------
\2\ Sustaining Discovery in the Biological and Biomedical Sciences:
A Framework for Discussion. Federation of American Societies for
Experimental Biology, Bethesda, MD.

FASEB Fiscal Year 2019 Recommendation: at least $39.3 billion for NIH
A $39.3 billion budget (a $2 billion increase in addition to 21st
Century Cures funding \3\) would allow NIH to accelerate progress in
all areas of biomedical science. This funding level could support about
400 additional early career and early established investigators;
provide $700 million already authorized through the 21st Century Cures
Act for key research initiatives in cancer, precision medicine,
neuroscience, and regenerative medicine; and bolster other areas in
urgent need of additional resources, including raising the NIH grant
modular budget limit (not increased since its inception in 2000). This
funding means NIH could keep pace with the increased cost and
sophistication of biomedical research.
---------------------------------------------------------------------------
\3\ H.R. 1625--Consolidated Appropriations Act, 2018.
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______

Prepared Statement of FosterAdopt Connect
FosterAdopt Connect offers the following testimony requesting
increased funds for the following five programs under the supervision
of the Administration for Children and Families (ACF): Child Welfare
Services (CWS), Promoting Safe and Stable Families, the Adoption and
Kinship Incentives Fund, and the Adoption Opportunities Act.
In February, Congress passed the Family First Prevention Services
Act (PL 115-123). The legislation has potential to expand services that
can prevent the placement of children into foster care. It challenges
States to reduce the number of children and youth in congregate
placements. It will be a challenge to States to build the capacity and
access to services (mental health, substance use, and in-home services)
and to build the infrastructure of services and providers.
The challenge is against a backdrop of ever increasing foster care
numbers driven by the opioid epidemic in parts of the country. Since
2012 the number of children in foster care has increased by 10 percent
to 437,000 in 2016. FosterAdopt Connect believes it is critical for
Congress to fully fund six programs to both build capacity to
effectively implement the Family First Act and help address the crisis
many communities are facing as foster care placement demands explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care but does not fund services to
prevent child abuse and neglect. Child welfare strategy must
significantly increase funding for child abuse prevention.
FosterAdopt Connect calls on Congress to fully fund Child Welfare
Services from $269 million to $325 million and Promoting Safe and
Stable Families from $99 million in discretionary funding to $200
million; increase funding to the Adoption Opportunities Act to $60
million; fully fund the Adoption and Kinship Incentives Fund at $75
million.
impact of opioids on child abuse and neglect and foster care
Earlier this year HHS through the Secretary of Planning and
Evaluation conducted an analysis of child welfare data and supplemented
that work with field level research. Some of the key findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate and a 10 percent
increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While in past drug epidemics family and communities could fill some
of the gaps, today agencies report that family members across
generations may be experiencing substance use problems forcing
greater reliance on State custody and non-relative care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history, and addressing
substance abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children longer in care which keeps existing homes
full and unable to accept new placements.
Family First Act
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community-based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post-discharge services for children
leaving institutional care. Child welfare agencies need to find and
support more family-based foster care homes. These four funds can help
States develop evidence-based services that will meet the laws ``well-
supported,'' ``supported,'' and ``promising'' standards and can assist
the coordination of community based behavioral health and human
services.
child welfare services, title iv-b part 1
We ask for $325 million for Child Welfare Services (CWS), the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet these evidence standards.
promoting safe and stable families, title iv-b part 2
We also asking for full funding of $200 million for Promoting Safe
and Stable Families (PSSF). Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
the adoption opportunities act
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently to promote adoptions of
older youth in foster care and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post adoption services to families.
the adoption and kinship incentive fund
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014 it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has been not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. Your 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018,
this September, there will have $25 million remaining. That will likely
fall short to fully fund the incentives. And we again ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services. These
funds can be used by States to build both the evidence-based adoption
services include post-adoption counseling and services that can prevent
and reduce adoption disruption. FosterAdopt Connect thanks you for this
consideration and stands ready to respond to your questions and
concerns.
______

Prepared Statement of Fred Hutchinson Cancer Research Center
Fred Hutchinson Cancer Research Center (Fred Hutch) is grateful to
Congress for providing strong, reliable funding for the National
Institutes of Health (NIH), which is a key national priority. The
Nation's investment in NIH research pays a lifetime of dividends in
better health and quality of life for all Americans. In fiscal year
2019, Fred Hutch recommends at least $39.3 billion for the NIH,
including funds provided to the agency through the 21st Century Cures
Act (Public Law 114-255) for targeted initiatives. Fred Hutch also
recommends the Beau Biden Cancer Moonshot program be funded at $400
million in fiscal year 2019 through the NIH Innovation Account created
by the 21st Century Cures Act. These funding levels would continue the
momentum of recent increases by enabling meaningful base budget growth
above inflation, while ensuring that the NIH Innovation Account
supplements the agency's base budget, as intended, through dedicated
funding for specific programs.
Through the strong, bipartisan leadership of this Subcommittee's
leaders, Chairman Roy Blunt and Ranking Member Patty Murray, who has
been a consistent champion for biomedical research and a leader in the
fight to end cancer, Congress is helping the agency regain lost ground
after years of effectively flat budgets. In the fiscal year 2018
omnibus, the Subcommittee's leadership ensured continued progress by
providing a substantial increase to all NIH institutes and centers, in
addition to dedicated funding through the 21st Century Cures Act and
other funding devoted to specific priorities.
The Federal investment in biomedical research has yielded a
significant number of scientific advances that help improve health
outcomes of patients suffering from disease. With its NIH funding, Fred
Hutch has been redefining what is possible across the full spectrum of
research into cancer and related diseases. Fred Hutch is committed to
working with Congress and the Administration to further the
longstanding, bipartisan tradition of enhancing the Federal investment
in medical discovery and ensuring NIH remains a top priority in fiscal
year 2019 and beyond.
about fred hutch
Fred Hutchinson Cancer Research Center, founded in 1975, is an NCI-
designated Comprehensive Cancer Center that seeks to eliminate cancer
and related diseases as causes of human suffering and death. Fred
Hutch's interdisciplinary team of world-renowned scientists and
humanitarians work together to prevent, diagnose, and treat cancer,
HIV/AIDS, and other diseases. Our groundbreaking discoveries began in
the 1970s with Dr. E. Donnall Thomas' work in bone marrow
transplantation, providing the first definitive and reproducible
example of the power of the human immune system's ability to cure
cancer.
Today, Fred Hutch continues to pave the way in research to
understand the fundamental biological mechanisms of cancer, develop new
methods to diagnose and treat cancer, and generate new knowledge to
help individuals and communities reduce the incidence and death rate
from cancer. Below are examples of how NIH funding drives Fred Hutch
innovation and accelerates research advancements in cancer and other
diseases.
--Fred Hutch is spearheading a revolutionary approach, called
immunotherapy, which is yielding cancer treatments that can be
more effective than conventional drugs, radiation, or surgery.
Fred Hutch has led the way in developing cellular
immunotherapies, as our researchers were the first to use a
melanoma patient's own cloned T cells as the sole treatment to
put his cancer into long-term remission.
--NCI-funded research at Fred Hutch showed strains of the human
papillomavirus (HPV) cause nearly all cervical cancers. The
team also found a way to produce virus-like particles that
could trigger an immune response, paving the way for today's
cancer-preventing HPV vaccines.
--Launched in 1991 with an NIH grant, the Women's Health Initiative
is one of the largest U.S. prevention studies of its kind and
the largest, most ethnically and geographically diverse study
of older women. A single study from the Fred Hutch Women's
Health Initiative showing the health risks of combined hormone
therapy led to tens of thousands fewer cases of breast cancer,
heart disease and stroke, and venous thromboembolism between
2003 and 2012, generating a net return of $37.1 billion--or
roughly $140 on every dollar invested in the trial.
--Fred Hutch research also extends to infectious diseases, reflecting
a growing understanding that eradicating certain infectious
diseases can reduce the world's cancer burden. Fred Hutch began
researching HIV in 1988, and today is home to the HIV Vaccine
Trials Network supported by the National Institute of Allergy
and Infectious Diseases (NIAID)--one of the largest HIV
research networks in the world, focused on developing and
testing a successful preventive HIV vaccine.
the value of federally-funded medical research
The Federal Government has an irreplaceable role in supporting
medical research. No other public, corporate, or charitable entity is
willing or able to provide the broad and sustained funding for the
cutting-edge research necessary to yield new innovations and
technologies of the future. The partnership between NIH and America's
scientists 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 causes of disease, and develop the next generation of
medical innovations--and innovators--that deliver better treatments and
cures to patients.
As an independent research institute with its sole mission to
pursue lifesaving discoveries, Fred Hutch depends on NIH funding to
focus exclusively on basic, translational, and clinical scientific
research and to respond quickly to the research needs of the country.
In addition to supporting robust funding, Fred Hutch opposes
provisions--such as directives to reduce the salary limit for
extramural researchers--which would harm the integrity of the research
enterprise and disproportionately affect independent research
institutes. Policies to cut salary support hinder the center's research
mission and ability to recruit and retain the talented researchers who
make U.S. institutions global leaders in advancing the biomedical
sciences and improving and saving lives.
The NIH initiatives focusing on career development and recruitment
of a diverse scientific workforce are important to innovation in
biomedical research and public health. Robust increases to the NIH
budget are critical to fostering the next generation of scientists, as
training funds work to attract the brightest minds to pursue a career
in research. Fred Hutch is committed to training the current and next
generation of scientific leaders from diverse backgrounds and supports
NIH efforts to address challenges faced by investigators seeking to
launch and sustain their research careers.
conclusion
Fred Hutch thanks the Subcommittee for its important work dedicated
to ensuring the health of the Nation and for its strong support for NIH
funding in fiscal year 2018. We appreciate the opportunity to urge the
Subcommittee to provide at least $39.3 billion in fiscal year 2019 for
NIH, including funds provided to the agency through the 21st Century
Cures Act for targeted initiatives, as the next step toward a multi-
year increase in our Nation's investment in medical research. Advances
in bioscience, technology and data science have brought us to an
inflection point. This is not a time to pull back. Given the abundance
of scientific opportunity, this recommendation represents a minimum
investment to sustain progress that only would be amplified through an
even more robust commitment.

[This statement was submitted by Gary Gilliland, MD, PhD, President
and
Director, Fred Hutchinson Cancer Research Center.]
______

Prepared Statement of the Friends of the Health Resources and Services
Administration Coalition
Friends of HRSA is a nonpartisan coalition of 170 national
organizations representing tens of millions of public health and
healthcare professionals, academicians and consumers invested in the
Health Resources and Services Administration's mission to improve
health and achieve health equity. HRSA is the primary Federal agency
responsible for improving health, and does so by supporting access to
quality health services, a skilled workforce and innovative programs.
We are grateful for the increases provided for HRSA programs in the
fiscal year 2018 omnibus, but HRSA's discretionary budget authority is
far too low to effectively address the Nation's current healthcare
needs. Additional funding will allow HRSA to fill preventive and
primary healthcare gaps and to build upon the achievements of HRSA's
90-plus programs and more than 3,000 grantees. We urge Congress to
continue their support for these important programs and we recommend
providing $8.56 billion for HRSA's total discretionary budget authority
in fiscal year 2019.
Our Nation's ability to deliver services that meet the pressing
health challenges of the 21st century is essential for a healthy and
thriving population. The Nation faces a shortage of health
professionals, and a growing and aging population which will demand
more healthcare. We must make deliberate investments in robust systems
of care, and a high-performing workforce ready to respond to the
Nation's current health demands and prepared to take on unexpected
health needs as they arise. Providing additional funding to HRSA's
discretionary budget will allow the agency to address these challenges.
The agency is continuously exploring and supporting efforts that drive
quality care, better leverage existing investments and achieve improved
health outcomes at a lower cost. HRSA's programs have been successful
in improving the health of people with complex health, behavioral and
social needs who traditionally have poor health outcomes.
HRSA operates programs in every State and U.S. territory. The
agency is a national leader in improving the health of Americans by
addressing the supply, distribution and diversity of health
professionals and supporting training in contemporary practices, and
providing quality health services. HRSA programs work in coordination
with each other to maximize resources and leverage efficiencies. For
example, Area Health Education Centers, a health professions training
program, was originally authorized at the same time as the National
Health Service Corps to increase the number of primary care providers
at health centers and other direct providers of healthcare services for
underserved areas and populations. AHECs play an integral role to
recruit providers into primary healthcareers, diversify the workforce
and develop a passion for service to the underserved among future
providers.
HRSA's programs also work synergistically across the Federal
Government to enhance health outcomes. Through maternal and child
health programs, HRSA has contributed to the decrease in infant
mortality rates, a widely used indicator of the Nation's health. While
HRSA has contributed to driving down the national rate, which is now at
a historic low of 5.8 deaths per 1,000 live births, it would not have
been possible without the effort of other Federal public health
programs, including those that address perinatal care, preventive
health screenings, cessation programs for tobacco and other substances,
healthy eating and physical activity programs, among other efforts.
HRSA grantees also play an active role in addressing emerging
health challenges. For example, HRSA's grantees provide outreach,
education, prevention, screening and treatment services for populations
affected by the health emergencies such as the Zika virus and the
opioid epidemic. However, much of this work required emergency
supplemental funding to increase capacity in health centers, support
additional National Health Service Corps providers to deliver care and
expand maternal and child health services. Strong, sustained funding
would allow HRSA to quickly and effectively respond to emerging and
unanticipated future health needs across the U.S., while continuing to
address persistent health challenges.
Our recommendation is based on the need to continue improving the
health of Americans and to provide HRSA with the resources needed to
pave the way for new achievements by supporting critical HRSA programs,
including:
--Primary care programs support more than 10,400 health center sites
in every State and territory, improving access to preventive
and primary care for more than 27 million people in geographic
areas with few healthcare providers. Health centers coordinate
a full spectrum of health services including medical, dental,
vision, behavioral and social services. Close to half of all
health centers serve rural populations. For over 50 years,
health centers have delivered comprehensive, cost-effective
care for people who otherwise may not have obtained care and
have demonstrated their ability to reduce the use of costlier
providers of care.
--Health workforce programs support the education, training,
scholarship and loan repayment of primary care physicians,
nurses, oral health professionals, optometrists, physician
assistants, nurse practitioners, clinical nurse specialists,
public health personnel, mental and behavioral health
professionals, pharmacists and other allied health providers.
With an emphasis on primary care and training in
interdisciplinary, community-based settings, these are the only
Federal programs focused on filling the gaps in the supply of
health professionals, as well as improving the geographic
distribution and diversity of the workforce so that health
professionals are well-equipped to care for the Nation's
changing needs and demographics.
--Maternal and child health programs, including the Title V Maternal
and Child Health Block Grant, Leadership Education in
Neurodevelopmental and Related Disabilities, Healthy Start and
others support initiatives designed to promote optimal health,
reduce disparities, combat infant mortality, prevent chronic
conditions and improve access to quality healthcare. MCH
programs help assure that nearly all babies born in the U.S.
are screened for a range of serious genetic or metabolic
diseases and that coordinated long-term follow-up is available
for babies with a positive screen. They also help improve early
identification and coordination of care for children with
sensory disorders, autism and other developmental disabilities.
--HIV/AIDS programs provide the largest source of Federal
discretionary funding assistance to States and communities most
severely affected by HIV/AIDS. The Ryan White HIV/AIDS Program
delivers comprehensive care, prescription drug assistance and
support services to 550,000 people impacted by HIV/AIDS.
Additionally, the program provides education and training for
health professionals treating people with HIV/AIDS and works
toward addressing the disproportionate impact of HIV/AIDS on
racial and ethnic minorities. People receiving care through the
Ryan White HIV/AIDS Program achieve significantly higher viral
suppression compared to the national average, which is central
to preventing new HIV infections.
--Title X ensures access to a broad range of reproductive, sexual and
related preventive health services for more than 4 million
women, men and adolescents, with priority given to low-income
individuals. Services include patient education and counseling
for family planning; provision of contraceptive methods;
cervical and breast cancer screenings; sexually transmitted
disease prevention education, testing and referral; and
pregnancy diagnosis. This program helps improve maternal and
child health outcomes and promotes healthy families.
--Rural health programs improve access to care for people living in
rural areas. The Office of Rural Health Policy serves as the
Nation's primary advisor on rural policy issues, conducts and
oversees research on rural health issues and administers grants
to support healthcare delivery in rural communities. Rural
health programs are designed to 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 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.
These programs maintain and facilitate organ marrow and cord
blood donation, transplantation and research, along with
efforts to promote awareness and increase organ donation rates.
Special programs also include the Poison Control Program, the
Nation's primary defense against injury and death from
poisoning for over 50 years. Poison control centers contribute
to significantly decreasing a patient's length of stay in a
hospital and save the Federal Government $662.8 billion each
year in medical costs and lost productivity.
We urge you to consider HRSA's central role in strengthening the
Nation's health and advise you to adopt our fiscal year 2019 request of
$8.56 billion for HRSA's discretionary budget authority. Thank you for
the opportunity to submit our recommendation to the subcommittee.

[This statement was submitted by Gaby Witte, Senior Manager of
Government Relations, American Public Health Association.]
______

Prepared Statement of Friends of the Institute of Education Sciences
Dear Chairman Shelby, Vice Chairman Leahy, Chairman Blunt and
Ranking Member Murray:
On behalf of the Friends of IES--a consortium of scientific
societies, research universities and independent research
organizations--we urge you to include $670 million for the Institute of
Education Science (IES) in the fiscal year 2019 Labor, Health and Human
Services, and Education Appropriations bill.
As you know, IES is the independent and nonpartisan statistics,
research, and evaluation arm of the U.S. Department of Education
charged with supporting and disseminating rigorous scientific evidence
on which to ground education policy and practice. As such, it serves as
the critical Federal source for funding groundbreaking research in
myriad aspects of education policy and practice, as well as rigorous
analysis of educational programs and initiatives.
Our member organizations rely on IES to support vital research that
probes many of the most important questions confronting American
education--from literacy and numeracy at the elementary level, to the
integration of technology in teaching and learning, to advancing STEM
education, to closing achievement gaps at every level of our
educational systems. The National Center for Education Statistics
compiles and disseminates important, scientifically valid data that is
essential to the research being conducted across the nation. Moreover,
IES helps inform policymakers, practitioners, and State and local
governments about the most effective strategies, interventions,
curricula and teacher training, through the What Works Clearinghouse
powered by IES.
Given that public education expenditures generally account for a
significant share of State and local budgets, and with the
implementation of Every Student Succeeds Act (ESSA)'s new requirements,
including those that seek to promote evidence based innovative
educational practices, it is more important than ever for the Federal
Government to provide robust funding to the agency charged with
compiling and disseminating evidence-based educational research and
data. To this end, we urge the Committee to support funding IES at $670
million in fiscal year 2019. A commitment at this level will enable IES
to more fully support research that addresses the challenges of
preparing young Americans to succeed in the knowledge-based economy
that is not only upon us now, but also the key to future American
prosperity.
Thank you for your thoughtful consideration of this request,
The Friends of IES
______

Prepared Statement of the Friends of the National
Institute on Drug Abuse
Thank you for the opportunity to submit testimony in support of the
National Institute on Drug Abuse (NIDA). The Friends of the National
Institute on Drug Abuse 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 NIDA. In the
fiscal year 2019 Labor-HHS Appropriations bill, we request that the
subcommittee provide at least $2 billion above the fiscal year 2018
level for the National Institutes of Health, and within that amount a
proportionate increase for the National Institute on Drug Abuse using
the Institute's conferenced level of $1,383,603,000 as NIDA's base
budget for Fiscal 2019. We also respectfully request the inclusion of
the following NIDA specific report language.
Opioid Initiative.--With additional funding for NIDA targeted at
addressing the opioid epidemic, the Institute's opioid specific
allocation should be targeted for the following areas: development of
safe and effective medications and new formulations and combinations to
treat opioid use disorders and to prevent and reverse overdose; conduct
demonstration studies to create a comprehensive care model in
communities nationwide to prevent opioid misuse, expand treatment
capacity, enhance access to overdose reversal medications, and enhance
prescriber practice; test interventions in justice system settings to
expand the uptake of medication assisted treatment and methods to scale
up these interventions for population-based impact; and develop
evidence-based strategies to integrate screening and treatment for
opioid use disorders in emergency department and primary care settings.
Opioid Misuse and Addiction.--The Committee continues to be
extremely concerned about the epidemic of prescription opioid, heroin,
and illicit synthetic opioid use, addiction and overdose in the U.S.
Approximately 174 people die each day in this country from drug
overdose (over 100 of those are directly from opioids), making it one
of the most common causes of non-disease-related deaths for adolescents
and young adults. This crisis has been exacerbated by the availability
of illicit fentanyl and its analogs in many communities. The Committee
appreciates the important role that research can and should play in the
various Federal initiatives aimed at this crisis. The Committee urges
NIDA to 1) continue funding research on medication development to
alleviate pain and to treat addiction, especially the development of
medications with reduced abuse liability; 2) as appropriate, work with
private companies to fund innovative research into such medications;
and 3) report on what we know regarding the transition from opioid
analgesics to heroin and synthetic opioid use and addiction within
affected populations.
Alcohol's Role in Opioid Overdose.--The Committee is concerned that
the role of alcohol in opioid and other drug overdoses is not receiving
the attention it should. The CDC estimates that alcohol contributes to
over 8000 annual overdose deaths that are primarily attributed to other
substances, and that data suggest alcohol is commonly omitted from
death certificates leading to underreporting. In order to address the
opioid crisis, all avenues of investigation must be addressed. The
Committee directs NIDA to work with NIAAA and any other appropriate
agencies to better understand these linkages and to support research
that will help to address this aspect of the problem.
Barriers to Research.--The Committee is concerned that restrictions
associated with Schedule 1 of the Controlled Substance Act effectively
limit the amount and type of research that can be conducted on certain
Schedule 1 drugs, especially marijuana or its component chemicals and
certain synthetic drugs. At a time when we need as much information as
possible about these drugs, we should be lowering regulatory and other
barriers to conducting this research. The Committee directs NIDA to
provide a short report on the barriers to research that result from the
classification of drugs and compounds as Schedule 1 substances.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment.--Education is a critical
component of any effort to curb drug use and addiction, and it must
target every segment of society, including healthcare providers
(doctors, nurses, dentists, and pharmacists), patients, and families.
Medical professionals must be in the forefront of efforts to curb the
opioid crisis. The Committee continues to be pleased with the NIDAMeD
initiative, targeting physicians-in-training, including medical
students and resident physicians in primary care specialties (e.g.,
internal medicine, family practice, and pediatrics). NIDA should
continue its efforts in this space, providing physicians and other
medical professionals with the tools and skills needed to incorporate
drug abuse screening and treatment into their clinical practices.
Marijuana Research.--The Committee is concerned that marijuana
public policies in the States (medical marijuana, recreational use,
etc.) are being changed without the benefit of scientific research to
help guide those decisions. NIDA is encouraged to continue supporting a
full range of research on the health effects of marijuana and its
components, including policy research focused on policy change and
implementation across the country.
Adolescent Brain Development.--The Committee recognizes and
supports the NIH Adolescent Brain and Cognitive Development (ABCD)
Study. We know that the brain continues to develop into the mid-
twenties. However, we do not yet know enough about the dramatic brain
development that takes place during adolescence and how the various
experiences people are exposed to during this time interact with each
other and their biology to affect brain development and, ultimately,
social, behavioral, health and other outcomes. The ABCD study addresses
this knowledge gap. The committee also recommends and recognizes that
the cost of this comprehensive study should not inhibit investigator-
initiated studies or any potential special appropriation for its
ongoing support. The Committee understands that recruitment and data
development efforts are proceeding well, and requests a summary report
detailing activity and progress to date.
Drug Treatment in Justice System Settings.--The Committee
understands that providing evidence-based treatment for substance use
disorders offers the best alternative for interrupting the drug use/
justice system cycle for offenders with drug problems. Untreated
substance using offenders are more likely to relapse into drug use and
criminal behavior, jeopardizing public health and safety and taxing
criminal justice system resources. Treatment has consistently been
shown to reduce the costs associated with lost productivity, crime, and
incarceration caused by drug use. The Committee applauds NIDA's focus
on adult and juvenile justice populations in its research, supports
this important work and asks for a progress report in the next
appropriations cycle.
Electronic Cigarettes.--The Committee understands that electronic
cigarettes (e-cigarettes)/other vaporizing equipment are increasingly
popular among adolescents. Lack of regulation, easy availability, and a
wide array of cartridge flavors may make them particularly appealing to
this age group. In addition to the unknown health effects, evidence
continues to suggest that e-cigarette use may serve as an introductory
product for youth who then go on to use other tobacco products,
including conventional cigarettes, which are known to cause disease and
lead to premature death. Evidence also reveals that these devices are
widely used as tools for smoking derivatives of marijuana (hash oil,
``shatter,'' etc.) The Committee requests that NIDA fund research on
the use and consequences of these devices.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a 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. 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
emphasize the fact that drug addiction is 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,
however areas of significant concern include the recent increase in
lethalities due to heroin and synthetic fentanyl, as well as the
continued abuse of prescription opioids and the recent increase in
availability of designer drugs and their deleterious effects. The need
to increase our knowledge about the effects of marijuana is most
important now that decisions are being made about its approval for
medical use and/or its legalization. We support NIDA in its efforts to
find successful approaches to these difficult problems.
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. An obvious significant result
of this type of research is the discovery and development of naloxone
and other drugs to reduce deaths due to opioid overdose. This one
success has saved many lives. 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 2019 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction deserves to
be prioritized accordingly. Thank you for your support for the National
Institute on Drug Abuse.
______

Prepared Statement of FSH Society
Agency: National Institutes of Health (NIH).

Account: National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIAMS), National Institute of Neurological Disorders and
Stroke (NINDS), Eunice Kennedy Shriver National, Institute of Child
Health and Human Development (NICHD), National Heart, Lung and Blood
(NHLBI) and other Institutes as appropriate.

Fiscal Year 2019 Program/Amount Language: Scientific opportunities
and recent breakthroughs alongside community defined research
priorities in facioscapulohumeral disease (FSHD) call for more funding
on the disorder. The Committee strongly encourages the NIH to
significantly increase funds to $29 million on basic and exploratory
research efforts and to accelerate clinical trials readiness funding to
foster access to treatment of facioscapulohumeral muscular dystrophy
(FSHD) and other FSHD-related-epigenetic diseases.

Honorable Chairman Blunt, Ranking Member Murray and distinguished
members of the Subcommittee, thank you for the opportunity to submit
testimony. We kindly request $29 million for fiscal year 2019 of NIH
funding for research on facioscapulohumeral disease (FSHD).
FSHD, a heritable disease, is the most common form of muscular
dystrophy with a prevalence of 1:8,000.\1\ It affects 934,000 children
and adults of both sexes worldwide. FSHD is characterized by
progressive loss of muscle strength that is asymmetric and widely
variable. Muscle weakness typically starts at the face, shoulder girdle
and upper arms, often progressing to the legs, torso and other muscles.
FSHD can cause significant disability and, in severely affected
individuals, premature death that is mainly through respiratory
failure. In addition to affecting muscle, it can bring with it hearing
loss, eye problems, asymptomatic cardiac arrhythmias and respiratory
insufficiency.
---------------------------------------------------------------------------
\1\ Deenen JC, et al, Population-based incidence and prevalence of
FSHD. Neurology. 2014 Sep 16;83(12):1056-9. Epub 2014 Aug 13.
---------------------------------------------------------------------------
I started my journey in 1989 to raise the understanding and
visibility of FSHD. I naively believed in those years that if you had a
chronic and debilitating disease that someone somewhere would be
funding research and working on a cure. We had not yet discovered that
it would happen ever so gradually and that it would take years of
personal endeavor and self-advocacy by people directly concerned with
the disease to advocate for funding and research. I co-founded the FSH
Society in 1991, we are a small group of affected, dedicated and
talented individuals working to alter the course of a disease. We
testify each year and are still here working hard for a sense of agency
and survival against extraordinary odds.
At any age an individual with FSHD should be recognized as a
lifelong survivor of severe trauma and tension. Patients and their
families deal with the continuing, unrelenting and unending loss caused
by FSHD from birth, over the months and through the years. Not for a
moment is there a reprieve from continual loss of physical ability; not
for a moment is there a time to mourn the loss; not for a moment is
there relief from the physical and mental pain that is a result of this
disease. There is no known treatment for this disease.
FSHD insidiously and systematically deprives patients and their
families of the full range of choices in life. FSHD affects the way you
walk, the way you dress, the way you work, the way you wash, the way
you sleep, the way you relate, the way you parent, the way you love,
how and where you live, and the way people perceive and treat you.
Individuals manifesting signs of the FSHD disorder cannot smile; or
hold a baby in their arms; cannot close their eyes fully either when
awake or when asleep; can no longer run or walk on the beach or climb
stairs. Every day they are keenly aware of the things that they may not
be able to do tomorrow. This is the reality for the near 41,000 people
living with FSHD in the United States of America.
Meticulous scientific efforts by world-class FSHD researchers and
clinicians working with partial seed funding from the FSH Society, the
NIH and others have yielded significant scientific discoveries
advancing epigenetic and human disease knowledge. FSHD is the only
human disease known to be caused by the contraction of repetitive
``junk' DNA. Its cause is found within a stretch of `junk DNA' thought
previously to have no biological function. A contraction of this array
of macrosatellite repeats called `D4Z4' located near the chromosome 4q
telomere causes the production of a transcription factor called DUX4.
This transcription factor is a gene which when overexpressed makes a
protein product DUX4 that causes skeletal muscle death and
degeneration. FSHD-patients' `junk' DNA contains a gene DUX4 that is
normally turned on in initial stage embryonic development and shuts off
before the embryo even implants in the uterus, and as an adult it is
packed away in the `junk'. In FSHD, when this `junk' array of DNA is
shortened, contracted or modified, the gene DUX4 is made accessible,
and is toxic to skeletal muscle.\2,3,4,5\
---------------------------------------------------------------------------
\2\ Whiddon JL, Langford AT, Wong CJ, Zhong JW, Tapscott SJ.
Conservation and innovation in the DUX4-family gene network. Nat Genet.
2017 Jun;49(6):935-940. doi: 10.1038/ng.3846. Epub 2017 May 1.
\3\ Hendrickson PG, Dora is JA, Grow EJ, Whiddon JL, Lim JW, Wike
CL, Weaver BD, Pflueger C, Emery BR, Wilcox AL, Nix DA, Peterson CM,
Tapscott SJ, Carrell DT, Cairns BR. Conserved roles of mouse DUX and
human DUX4 in activating cleavage-stage genes and MERVL/HERVL
retrotransposons. Nat Genet. 2017 Jun;49(6):925-934. doi: 10.1038/
ng.3844. Epub 2017 May 1.
\4\ De Iaco A, Planet E, Coluccio A, Verp S, Duc J, Trono D. DUX-
family transcription factors regulate zygotic genome activation in
placental mammals. Nat Genet. 2017 Jun;49(6):941-945. doi: 10.1038/
ng.3858. 2017 May 1.
\5\ Tohonen V, Katayama S, Vesterlund L, Sheikhi M, Antonsson L,
Filippini-Cattaneo G, Jaconi M, Johnsson A, Linnarsson S, Hovatta O,
Kere J. Transcription activation of early human development suggests
DUX4 as an embryonic regulator. bioRxiv. 2017: 123208.
---------------------------------------------------------------------------
The fact that reanimated `junk' DNA can cause disease in a
Mendelian fashion is so astounding NIH Director Dr. Francis Collins
emphasized its significance on the front page of the New York Times,
saying ``If we were thinking of a collection of the genome's greatest
hits, this [FSHD] would go on the list.'' \6\ This past March, NIH
funded extramural researchers highlighted groups of proteins that
normally turn DUX4 off and on (NuRD\Dux4off\, CAF-\Dux4off\ and
MBD3L2\Dux4on\) in development. Researchers found that when MBD3L2
turns DUX4 on in a muscle cell it spreads down the muscle fiber from
nucleus to nucleus in culture.\7\ Though in actual muscle tissue these
cells may not be as close to one another or touching one another--it
might perhaps explain why only muscles are affected in FSHD, as muscle-
cell nuclei unlike other cells do not have walls between them. It helps
us rationalize a mechanism whereby when at any given time we only view
under the microscope one in 1,000 cells expressing DUX4. Controlling
MBD3L2 theoretically may affect spreading and progression. Last month,
a paper came out in Molecular Therapy on FSHD screens and FSHD
candidate targets showing that FSHD causing targets can be repressed by
different methods in skeletal myocytes without major effects on certain
critical muscle genes. Both small molecules and CRISPR gene editing
techniques were independently used. This project funded by NIH NIAMS
and industry provides data demonstrating that expression of DUX4-fl
toxic variant is regulated by multiple epigenetic pathways, and
highlights multiple viable, druggable candidates for therapeutic target
development.\8\
---------------------------------------------------------------------------
\6\ 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.
\7\ Campbell AE, Shadle SC, Jagannathan S, Lim JW, Resnick R, Tawil
R, van der Maarel SM, Tapscott SJ. NuRD and CAF-1-mediated silencing of
the D4Z4 array is modulated by DUX4-induced MBD3L proteins. Elife. 2018
Mar 13;7. pii: e31023. doi: 10.7554/eLife.31023.
\8\ Himeda CL, Jones TI, Virbasius CM, Zhu LJ, Green MR, Jones PL.
Identification of Epigenetic Regulators of DUX4-fl for Targeted Therapy
of Facioscapulohumeral Muscular Dystrophy. Mol Ther. 2018 Apr 26. pii:
S1525-0016(18)30192-8. doi: 10.1016/j.ymthe.2018.04.019. [Epub ahead of
print].
---------------------------------------------------------------------------
The National Institutes of Health (NIH) is the principal worldwide
source of funding of research on FSHD. Currently active projects are
$13.654 million fiscal year 2018 (actual), a portion of the estimated
$85 million spent on all muscular dystrophies.
This Subcommittee and Congress in partnership with NIH, patients
and scientists have made truly outstanding progress in understanding
and treating the nine major types of muscular dystrophy. Congress is
responsible for this success by its sustaining support of the overall
NIH budget, and enacting the Muscular Dystrophy Community Assistance,
Research and Education Amendments of 2001 (MD-CARE Act, Public Law 107-
84). Several years past, NIH leadership and staff published the `2015
NIH Action Plan for the Muscular Dystrophies'--a research plan--written
by the Federal advisory committee mandated by MD CARE Act, called the
MDCC, along with working groups of outside scientific experts in the
field. It specifies eighty-one objectives, in six sections (mechanism,
screening, treatments, trial readiness, access to care, infrastructure
including workforce) in need of funding and further development.\9\
---------------------------------------------------------------------------
\9\ Rieff HI, Katz SI et al. The Muscular Dystrophy Coordinating
Committee Action Plan for the Muscular Dystrophies. Muscle Nerve. 2016
Mar 21. [Epub ahead of print].
---------------------------------------------------------------------------
Since inception, the FSH Society has provided approximately $9.834
million in seed funds and grants to pioneering FSHD researchers and
created an international network of patients and researchers. Recent
papers have emerged with findings on potential FSHD targets, validated
candidate targets, cell and animal models, biomarkers, muscle
pathophysiology and cell biology, genetics of FSHD, FSHD stem cell
biology, MRI, surrogate outcome measures, drug discovery and
development work--therapeutic studies using small molecules, studies in
gene therapy, genetic engineering, CRISPR, antisense oligonucleotide
(ASO), morpholino, and LNA gapmers to name a crowd of exciting
priorities and concepts. FSH Society funded researchers have shown
through peer review publications proof-of-concept in-vivo and in-vitro
studies that the DUX4 gene and protein can be turned off!\10,11,12\
---------------------------------------------------------------------------
\10\ Himeda CL, Jones, et al. CRISPR/dCas9-mediated Transcriptional
Inhibition Ameliorates the Epigenetic Dysregulation at D4Z4 and
Represses DUX4-fl in FSH Muscular Dystrophy. Mol Ther. 2016
Mar;24(3):527-35. epub 2015 Nov 3.
\11\ Chen JC, King OD, Zhang Y, et al. Morpholino-mediated
Knockdown of DUX4 Toward Facioscapulohumeral Muscular Dystrophy
Therapeutics. Molecular Therapy. 2016;24(8):1405-1411. doi:10.1038/
mt.2016.111.
\12\ Balog J, Thijssen PE, Shadle S, et al. Increased DUX4
expression during muscle differentiation correlates with decreased
SMCHD1 protein levels at D4Z4 . Epigenetics. 2015;10(12):1133-1142.
doi:10.1080/15592294.2015.
---------------------------------------------------------------------------
With more grant applications the NIH can increase the amount of
research funding on FSHD without having to increase the NIH budget or
take money from other promising areas of research. Better data, higher
quality science, and focus allows for more efficiency out of a slowly
increasing budget, while achieving the goals of the NIH Action Plan for
muscular dystrophy.
We must keep moving forward. At the FSH Society's most recent
annual International Research Consortium meeting in Boston,
Massachusetts (a meeting funded in part by the NIH NICHD University of
Massachusetts Medical School Wellstone Center for FSHD) over 110
researchers from around the world gathered to present the latest data
and discuss research strategies. The FSHD clinical and research
community listed 2016-2018 priorities in the following Table I as:

TABLE I.

_______________________________________________________________________
2017/2018 research priorities
Molecular Mechanisms
Priority 1: Understanding genetic toxicity in FSHD.
Priority 2: Understanding DUX4/Dux4 and how to silence it. How to
silence the DUX4 RNA.
Priority 3: Understanding what real pathophysiology is in FSHD.
Priority 4: Studying relationship to other markers and
correlation between the expression and activity, transcriptional
activity of DUX4.
Genetics and Epigenetic
Priority 5: Studies that focus on the uniformity in genetic
testing and subgrouping of patients.
Priority 6: Understanding epigenetic regulation of the repeats to
help better understand the disease process and the disease mechanism.
Priority 7: Research on modifiers of the disease mechanism.
Clinical and Therapeutic Studies
Priority 8: Generating and identifying surrogate outcome
biomarkers.
Priority 9: Establishing validated outcome measures.
Priority 10: More research with natural history studies.
Priority 11: Studies to identify, validate, and determine the best
standard measurements critical for trial preparedness in FSHD.
Models
Priority 12: Research to ensure clinician-researchers are
measuring the same kinds of things which translate into usable tools
for our therapeutic industry.
Priority 13: Development, characterization and use of animal
models: whole animal; mice; fish; pig mammal.
Priority 14: Emphasis on development, characterization and use of
FSHD human cellular models.
Priority 15: Research on models to develop how to deliver, how to
formulate, how to turn the conceptual entity into an effective
therapeutic use of the entity, all require something that you can test.
(Source: http://www.fshsociety.org/).
_______________________________________________________________________

NIH funding for muscular dystrophy. Mr. Chairman, these major
advances in scientific understanding and epidemiological surveillance
are not free. They come at a significant cost. Since passing the MD
CARE Act in 2001, funding at NIH for FSH muscular dystrophy has
remained far too level given the remarkable and exponential rate of
discoveries in the past 3 years.

FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH MUSCULAR DYSTROPHY FUNDING
[Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017e 2018e
--------------------------------------------------------------------------------------------------------------------------------------------------------
All MD ($ millions)............................ $39.9 $47.2 $56 $83 $86 $75 $75 $76 $78 $77 $79 $81 $85ee
FSHD ($ millions).............................. $1.7 $3 $3 $5 $6 $6 $5 $5 $7 $8 $9 $11 $13.7a
FSHD (% total MD).............................. 4% 5% 5% 6% 7% 8% 7% 7% 9% 10% 11% 14% 16%
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (a=actual, e=estimate, ee=estimate enacted).

There are 28 active projects NIH-wide totaling $13.654 million as
of April 18, 2018, versus 28 active projects NIH-wide totaling $12.751
million as of March 3, 2017, and 32 active projects NIH-wide totaling
$12.616 million on April 14, 2016 (source: NIH Research Portfolio
Online Reporting Tools (RePORT) http://report.nih.gov keyword `FSHD or
facioscapulohumeral or landouzy-dejerine'). NIH's 28 projects cover 2
F31, 1 K22, 1 K23, 12 R01, 1 R13, 4 R21, 1 R56, 1 P01, 1 P50, 2 U01,
and 2 U54 grants.
What we need. Specifically, NIH needs to increase its current
portfolio by funding substantial additional R01 and R21 style grants.
The engine of Federal research runs on the basic building blocks of
workforce training, exploratory/developmental research grants (parent
R21) and research project grants (parent R01). NIH can help by issuing
targeted funding announcements covering FSHD such as Program
Announcement (PA) and similar calls for applications. A request for
applications (RFA) on FSHD for R01 and R21 grants will yield results in
FSHD and illustrate to NIH leadership the pent up demand for funding
and let us know that leadership has listened to our concerns. These
types of efforts help convey to FSHD and allied researchers that NIH
has an elevated interest.
What we are asking for. We request for fiscal year 2019, a doubling
of the NIH FSHD research portfolio to $29 million. We are very
appreciative of the slow but steady year-to-year increases and thank
NIH and Congress. This year FSHD needs an investment in centers,
collaborative research grants--and, most importantly, a rapid ramp up
of basic grants and exploratory research awards along with the
expansion of post-doctoral and clinical training fellowships. The NIH
research plan for FSHD calls for and needs these additional funds to
succeed. The opportunities before us in FSHD are quite significant at
all levels--the time to move forward with purpose and expeditiously is
now. Mr. Chairman, thank you for this opportunity to testify before
your committee. Thank you as always for your kind consideration and
help.

[This statement was submitted by Daniel Paul Perez, co-Founder &
CSO,
FSH Society.]
______

Prepared Statement of the GBS|CIDP Foundation International
summary of recommendations for fiscal year 2018
_______________________________________________________________________

--Provide $39.3 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue expanding GBS research supported by NIH with proportional
funding increases for the National Institute of Neurological
Disorders and Stroke (NINDS), and the National Institute of
Allergy and Infectious Diseases (NIAID)
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the community of individuals impacted by Guillain-Barre
Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy
(CIDP), and related conditions as you work to craft the fiscal year
2019 L-HHS Appropriations Bill.
about gbs, cidp, variants and related conditions
Guillain-Barre Syndrome
GBS is an inflammatory disorder of the peripheral nerves outside
the brain and spinal cord. It's also known as Acute Inflammatory
Demyelinating Polyneuropathy and Landry's Ascending Paralysis. The
cause of GBS is unknown. We do know that about 50% of cases occur
shortly after a microbial infection (viral or bacterial), some as
simple and common as the flu or food poisoning.
We do know that about 50% of cases occur shortly after a microbial
infection (viral or bacterial), some as simple and common as the flu or
food poisoning. Some theories suggest an autoimmune trigger, in which
the patient's defense system of antibodies and white blood cells are
called into action against the body, damaging myelin (nerve covering or
insulation), and leading to numbness and weakness.
GBS in its early stages is unpredictable, so except in very mild
cases, most newly diagnosed patients are hospitalized. Usually, a new
case of GBS is admitted to ICU (Intensive Care) to monitor breathing
and other body functions until the disease is stabilized. Plasma
exchange (a blood ``cleansing'' procedure) and high dose intravenous
immune globulins are often helpful to shorten the course of GBS. The
acute phase of GBS typically varies in length from a few days to
months, with over 90 percent of patients moving into the rehabilitative
phase within four weeks. Patient care involves the coordinated efforts
of a team such as a neurologist, physiatrist (rehabilitation
physician), internist, family physician, physical therapist,
occupational therapist, social worker, nurse, and psychologist or
psychiatrist. Some patients require speech therapy if speech muscles
have been affected.
Recovery may occur over 6 months to 2 years or longer. A
particularly frustrating consequence of GBS is long-term recurrences of
fatigue and/or exhaustion as well as abnormal sensations including pain
and muscle aches. These can be aggravated by `normal' activity and can
be alleviated by pacing activity and rest.
chronic inflammatory demyelinating polyneuropathy
CIDP is a rare disorder of the peripheral nerves characterized by
gradually increasing weakness of the legs and, to a lesser extent, the
arms.
It is the gradual onset as well as the chronic nature of CIDP that
differentiates it from GBS. Fortunately, CIDP is even rarer than GBS.
The incidence of new cases is estimated to be between 1.5 and 3.6 in a
million people (compare to GBS: 1-2 in 100,000).
Like GBS, CIDP is caused by damage to the covering of the nerves,
called myelin. It can start at any age and in both genders. Weakness
occurs over two or more months. Unlike GBS, CIDP is not self-limiting
(with an end to the acute phase). Left untreated, 30 percent of CIDP
patients will progress to wheelchair dependence. Early recognition and
treatment can avoid a significant amount of disability.
Post-treatment life depends on whether the disease was caught early
enough to benefit from treatment options. Patients respond in various
ways. The gradual onset of CIDP can delay diagnosis by several months
or even years, resulting in significant nerve damage that may take
several courses of treatment before benefits are seen. The chronic
nature of CIDP differentiates long-term care from GBS patients.
Adjustments inside the home may need to be made to facilitate a return
to normal life.
about the foundation
The Foundation's vision is that every person afflicted with GBS,
CIDP, or variants has convenient access to early and accurate
diagnosis, appropriate and affordable treatments, and dependable
support services.
The Foundation's mission is to improve the quality of life for
individuals and families across America affected by GBS, CIDP, and
their variants by:
--Providing a network for all patients, their caregivers and families
so that GBS or CIDP patients can depend on the Foundation for
support, and reliable up-to-date information.
--Providing public and professional educational programs worldwide
designed to heighten awareness and improve the understanding
and treatment of GBS, CIDP and variants.
--Expanding the Foundation's role in sponsoring research and engaging
in patient advocacy.
centers for disease control and prevention
CDC and the National Center for Chronic Disease Prevention and
Health Promotion (NCCDPHP) have resources that could be brought to bear
to improve public awareness and recognition of CIDP and related
conditions. In order to initiate new, potentially cost-saving programs,
CDC requires meaningful funding increases to support crucial
activities. CIDP is a progressive condition with serious health
impacts. Patients can end up almost completely paralyzed and on a
ventilator. The key to limiting serious health impacts is an early and
accurate diagnosis. The time it takes for a CIDP patient to begin
therapy is linked to the length of therapy and the seriousness of the
health impacts. An early diagnosis can mean the difference between a 3
month or 18 month hospital stay, or no hospitalization at all. For the
Federal healthcare system, there is an economic incentive to ensure
early and accurate diagnosis as longer hospitalizations equate to
higher costs.
national institutes of health
NIH hosts a modest research portfolio focused on GBS, CIDP,
variants and related conditions. This research has led to important
scientific breakthroughs and is well positioned to vastly improve our
understanding of the mechanism behind these conditions. The Zika virus
has been linked to the onset of GBS, and it continues to remain
critical that NIAID and NINDS receive meaningful increase to support
their ongoing efforts into researching, understanding and combatting
the virus and associated conditions. We ask that resources continue to
be used to support a State of the Science Conference between NIAID,
NINDS and the GBS|CIDP community. This conference would allow
intramural and extramural researchers to develop a roadmap that would
lead research into these conditions into the next decade and encourage
younger investigators to apply for grants, leading to sustained
research activities. We are continuing to have conversations with the
leadership of both institutes to facilitate a robust agenda and goals
for the Conference. In our meetings with the leadership we also spoke
about the possibilities of cross-institute work between NINDS and NIAID
to expand the research and understanding of the link between Zika and
GBS. While such a conference would not require additional
appropriations, the Foundation urges you to provide NIH with meaningful
funding increases to facilitate growth in the GBS, CIDP, and related
conditions research portfolio.
patient access
As we have seen from communities that currently have access to home
infusion, such as primary immunodeficiency diseases, the cost to choose
the home as the preferred site of care has tremendous benefit in terms
of health outcomes and overall convenience for patients. Individuals
with CIDP and MMN often face mobility issues as limbs suffer nerve
damage. Traveling to receive an infusion presents a tremendous hardship
to many patients and their families. This hardship greatly affects
rural patients who have to travel hundreds of miles and long hours to
cities in order to receive treatment and are often forced to choose
between paying a bill and incurring the cost to travel for their
infusion. Through our work, the Foundation has seen that when there are
obstacles to receiving regular infusions, medical management becomes
complicated, and patients tend to skip scheduled infusions, which leads
to progressive disability.
Many CIDP and MMN patients have access to IVIG home infusion
through private insurance which allows them to lead productive and
active lives. When these individuals age on to Medicare they can face
disruption in their routine and suboptimal circumstances when seeking
to manage their condition. Further, when the body's immune system is
depressed at the end of an infusion cycle, CIDP and MMN patients face
an elevated risk of contracting illness from visiting well-traveled
sites of care for their next infusion. Most importantly patients and
physicians should be able to choose their preferred site of care. We
hope that members of this subcommittee and Congress as a whole support
the Medicare IVIG Access Enhancement Act (H.R.4724).

[This statement was submitted by Lisa Butler, Executive Director,
GBS|CIDP Foundation International.]
______

Prepared Statement of the Global Health Council
Global Health Council (GHC), the leading alliance of non-profits,
businesses, universities, and individuals dedicated to saving lives and
improving the health of people worldwide, thanks the Subcommittee for
the opportunity to submit this testimony in support for the Center for
Global Health (CGH) within the Centers for Disease Control and
Prevention (CDC). For fiscal year 2019, GHC encourages continued robust
support for CGH at a minimum of $488.6 million which maintains funding
that reflects the fiscal year 2018 enacted level. Recognizing that the
need is greater, GHC believes that $642 million is the ideal level to
support the work in CGH.
The role of CDC in responding to the current outbreak of Ebola in
the Democratic Republic of Congo (DRC), demonstrates the crucial role
that the Center for Global Health has in building the capacity of
countries to monitor and control infectious disease outbreaks, and
ultimately, in protecting the health of Americans. During the Ebola
outbreak in West Africa in 2014-2015, the CDC ultimately deployed more
than 1,400 epidemiologists, contact tracers, and virus hunters to the
affected countries. These experts were critical to ending the epidemic.
CDC serves a critical role in gathering and sharing public health
data and evidence, and one of its greatest assets is the level of
expertise it brings to both the domestic and global health spheres.
Within the CDC, the Center for Global Health protects the health of
Americans by monitoring 24/7 disease outbreaks around the world. CGH
works in over 60 countries and partners with ministries of health,
international organizations, and other global health partners to foster
local ownership and strengthen countries' capacity to prevent, detect,
and respond to outbreaks.
The Global Disease Detection program monitors 30-40 public health
threats each day. Between March 2014 and May 2016, the Global Disease
Detection Operations Center tracked over 269 outbreaks in 145
countries, keeping Americans and the global community safe from
infectious disease threats. In addition, CGH works with partner
countries to improve capacity of local emergency response centers (EOC)
to respond to disease outbreaks. And impact is already being seen: as
just one example, in Cameroon, work by CDC decreased the response time
to stopping outbreaks from 8 weeks to just 24 hours. This rapid
response can mean the difference between an isolated incident and a
global catastrophe.
Additionally, the CGH is leading the administration's engagement on
the Global Health Security Agenda (GHSA), an international effort to
accelerate progress toward a world safe and secure from infectious
disease threats. In this effort, CDC is collaborating with national
governments, international organizations, and civil society to prevent
and reduce the likelihood of disease outbreaks, detect potential and
emerging threats, and coordinate a rapid, effective response. As
demonstrated by the recent outbreaks of Ebola and Zika, prioritizing
funding and implementation of global health security objectives are
critical to protecting the health and security of citizens around the
world.
However, the Center for Global Health is about more than just
global health security. It is also home to the Global HIV/AIDS, Global
Immunization, Parasitic Disease and Malaria, and Global Public Health
Capacity Development programs. These programs position CGH as a leader
in global immunization, disease eradication, and public health capacity
building, and are critical to CDC's global health mission.
Through these programs CGH works to strengthen foreign government's
research and laboratory infrastructure, train new health professionals,
foster resilient health systems, and conduct research to develop new
technologies to combat diseases around the world. Accomplishments as a
result of these programs include:
--CGH is a key partner in the President's Emergency Plan for AIDS
Relief (PEPFAR). Working in over 75 partner countries, CGH
provides technical assistance on how to implement the latest
science, such as scaling up HIV treatment and preventing
mother-to-child transmission.
--Immunization programs have helped reduce the number of new polio
cases globally by more than 99 percent between 1988 and 2010,
and the CDC-led global campaign to eradicate Guinea worm
disease has helped reduce the disease burden from 3.5 million
cases per year in 1986 to near-eradication today.
--Malaria and Parasitic Disease programs play a key role in
developing new tools and diagnostics for malaria and neglected
tropical diseases, including conducting research to refine the
use of proven interventions to maximize effectiveness and
overcome lingering challenges.
--The Field Epidemiology Training Program (FETP) through the Public
Health Capacity Building program has trained over 3,100
epidemiologists in 72 countries on how to detect and rapidly
respond to infectious disease outbreaks, which greatly
contributed to Nigeria's ability to contain the 2014 Ebola
outbreak.
Sustained funding the Center for Global Health at CDC will ensure
that CGH continues to build strong health systems that ensure security
and improvement of health of those around the world, and also of
Americans. Moreover, we encourage you to maintain robust investments in
global health programs at CDC, while also maintaining funding for other
critical humanitarian and development programs that enable the United
States to reach its goal of ending extreme poverty and creating a more
stable, prosperous world.
Global Health Council thanks the Subcommittee for the opportunity
to submit written testimony in support of the Global Health Programs
Account. For more information on U.S. investments in global health,
visit http://ghbb.globalhealth.org.

[This statement submitted by Loyce Pace, MPH, President and
Executive
Director, Global Health Council.]
______

Prepared Statement of Global Health Technologies Coalition
Chairman Blunt, Ranking Member Murray, and members of the
Committee, thank you for the opportunity to provide testimony on the
fiscal year 2019 appropriations for the National Institutes of Health
(NIH), the Centers for Disease Control and Prevention (CDC), and the
Biological Advanced Research and Development Authority (BARDA). We
appreciate your leadership in promoting the value of global health,
particularly continued research and development (R&D) to advance new
drugs, vaccines, diagnostics, and other tools for longstanding and
emerging health challenges.
I am submitting this testimony on behalf of the Global Health
Technologies Coalition (GHTC), a group of more than 25 organizations
working together to advance policies that can accelerate the
development of global health innovations that combat global health
diseases and conditions and save lives at home and around the world.
To achieve this goal, we respectfully request maintaining robust
funding for NIH, providing funding to match CDC's increased
responsibilities in global health and global health security--at
minimum level funding of $488.62 million for the CDC Center for Global
Health (CGH) and $614.57 million for the CDC National Center for
Emerging Zoonotic and Infectious Diseases (NCEZID)--and supporting new,
dedicated funding for BARDA's critical work in emerging infectious
diseases, at a minimum of $300 million.
We also strongly urge the Committee to continue its established
support for global health R&D by urging leaders at the NIH, CDC, the
Food and Drug Administration, and other entities within the U.S.
Department of Health and Human Services, like the Office of Global
Affairs, BARDA, and the NIH Fogarty International Center, to join
leaders of other U.S. agencies to develop a cross--government global
health R&D strategy to ensure that U.S. investments in global health
research are efficient, coordinated, and streamlined.
GHTC members strongly believe that sustainable investment in R&D
for a broad range of neglected diseases and health conditions is
critical to tackling both longstanding and emerging global health
challenges that impact people around the world and in the United
States. My testimony reflects the needs expressed by our members, which
work with a wide variety of partners to develop new and improved
technologies for the world's most pressing health issues.
Critical Need for New Global Health Tools
While we have made tremendous gains in global health over the past
15 years, millions of people around the world are still threatened by
HIV/AIDS, tuberculosis (TB), malaria, and other neglected diseases and
conditions. In 2014, TB killed 1.5 million, surpassing HIV/AIDS deaths.
Sub-Saharan Africa saw 1.4 million new HIV infections. Half the global
population remains at risk for malaria with drug-resistance growing.
One out of 12 children in sub-Saharan Africa dies before the age of
five, often from preventable diseases. These figures highlight the
tremendous global health challenges that remain and the need for
sustained investment in global health R&D to deliver new tools to
combat endemic and emerging threats.
New technologies are critical to address unmet global health needs
and new challenges like drug resistance, replace outdated or toxic
treatments, and overcome barriers in administering current technologies
in remote settings. Particularly in our era of globalization where
diseases know no borders, investments today in global health
innovations will mean millions of future lives saved--at home and
around the world.
research and u.s. global health efforts
The United States is at the forefront of innovation in global
health, with NIH, CDC, and BARDA leading much of our global health
research.
NIH
The groundbreaking science conducted at the NIH has long upheld
U.S. leadership in medical research. Within the NIH, the National
Institute of Allergy and Infectious Diseases, the Office of AIDS
Research, and the Fogarty International Center all play critical roles
in developing new health technologies that save lives at home and
around the world. Recent activities have led to the creation of new
tools to combat neglected diseases, including vaccines for dengue and
trachoma, new drugs to treat malaria and TB, and multiple projects to
develop diagnostics, vaccines, and treatments for Ebola. Leadership at
NIH has long recognized the vital role the agency plays in global
health R&D and has named global health as one of the agency's top five
priorities.
We recognize and are grateful for Congress' work to bolster funding
for NIH, including through the 21st Century Cures Act. It remains
critical that support for NIH considers all pressing areas of
research--including research in neglected diseases. To deliver on the
remarkable progress being made across the institutes, it is vital that
we renew our commitment to health research and maintain steady support
for the NIH.
CDC
The CDC also makes significant contributions to global health
research, particularly through CGH and NCEZID. CDC's ability to respond
to disease outbreaks, like recent episodes of Zika and Ebola, is
essential to protecting the health of citizens both at home and abroad,
and the work of its scientists is vital to advancing the development of
tools, technologies, and techniques to detect, prevent, and respond to
urgent public health threats. Important work at NCEZID includes the
development of innovative technologies to provide a rapid diagnostic
test for the Ebola virus, a new vaccine to improve rabies control, and
a new and more accurate diagnostic test for dengue virus. The center
also plays a leading role in the National Strategy for Combating
Antibiotic-Resistant Bacteria, to prevent, detect, and control
outbreaks of antibiotic resistant pathogens, such as drug-resistant TB.
Programs at CDC's CGH--including the Global HIV/AIDS, Global
Immunization, Parasitic Diseases and Malaria, Global Disease Detection
and Emergency Response, and Global Public Health Capacity Development
programs--have also yielded tremendous results in the development and
refinement of vaccines, drugs, microbicides, and other tools to combat
HIV/AIDS, TB, malaria, and neglected tropical diseases like
leishmaniasis and dengue fever. In addition, the CGH plays a critical
role in disease detection and response, working to monitor and respond
to outbreaks, develop new tools to help detection efforts, train
epidemiologists in high-burden regions, and build capacity of health
systems.
CDC's work in novel technology development and global health
security has significantly expanded due to the increasing frequency of
global disease epidemics and engagement with the international
community on a coordinated Global Health Security Agenda (GHSA). This
increased responsibility has only been supported with one-time
supplemental funding, not sustainable appropriations. As threats
multiply, this will jeopardize CGH operations, scale-back important
programming, and ultimately put American health security at risk.
GHTC urges the Committee to dedicate new, targeted resources to
continue the GHSA work and maintain all global health security
activities. This funding should not come at the expense of other vital
global health activities at CDC, and we support appropriations for CDC
CGH and NCEZID at no less than fiscal year 2018 levels.
BARDA
BARDA plays an unmatched role in global health R&D by providing an
integrated, systematic approach to the development and purchase of
critical medical technologies for public health emergencies. By
leveraging unique contracting authorities and targeted incentive
mechanisms, BARDA partners with diverse stakeholders from industry,
academia, and nonprofits to bridge the ``valley of death'' between
basic research and advanced-stage product development for medical
countermeasures--an area where more traditional U.S. Government
research enterprises do not operate.
With these unique assets, BARDA has played a vital role in the
development of urgently needed countermeasures for emerging infectious
diseases (EIDs) like Ebola and Zika, developing at least three Ebola
vaccine candidates, at least six diagnostics for Zika, and at least
five Zika vaccine candidates in under 2 years. To date, BARDA's work in
advancing tools to protect against the threat of EIDs has been funded
through emergency funding. To ensure the continuation of this critical
work and forward-looking investments, GHTC supports the creation of a
separate line item for EIDs within BARDA, with an authorization at a
minimum of $300 million.
Innovation as a Smart Economic Choice
In addition to bringing lifesaving tools to those who need them
most, investment in global health R&D is also a smart economic
investment in the United States. $0.89 cents of every U.S. dollar
invested in global health R&D goes directly to U.S.-based researchers.
U.S. Government investment in global health R&D between 2007 and 2015
generated an estimated 200,000 new jobs and $33 billion in economic
growth. Furthermore, investments in global health R&D today can help
achieve significant cost-savings in the future. New therapies to treat
drug-resistant TB, for example, have the potential to reduce the price
of TB treatment by 90 percent and cut health system costs
significantly.
Now more than ever, Congress must make smart budget decisions.
Global health research that improves the lives of people around the
world--while at the same time supporting U.S. interests, creating jobs,
and spurring economic growth at home--is a win-win. 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.

[This statement was submitted by Jamie Bay Nishi, Director, Global
Health
Technologies Coalition.]
______

Prepared Statement of the HIV Medicine Association
The HIV Medicine Association (HIVMA) of the Infectious Diseases
Society of America (IDSA) represents more than 6,000 clinicians and
researchers working on the frontlines of the HIV epidemic. Our members
provide medical care and treatment to people living with HIV in the
U.S. and globally, lead HIV prevention programs, and conduct research
that has led to the development of effective HIV prevention and
treatment options. As you work on the fiscal year 2019 appropriations
process, we urge you to increase funding for the Ryan White HIV/AIDS
Program at the Health Resources and Services and Administration (HRSA);
increase funding for the Centers for Disease Control and Prevention's
(CDC) HIV, viral hepatitis and STD prevention programs; increase
investments in HIV/AIDS research supported by the National Institutes
of Health (NIH), including maintaining the Fogarty International
Center; and heighten our response to the opioid epidemic including its
infectious diseases consequences and the need for workforce expansion.
Three decades of American investment in evidence-based public
health approaches to HIV prevention, treatment, care, and research have
brought the fight against HIV to a tipping point, both domestically and
globally, allowing us to speak cautiously about ending the HIV
epidemic, while knowing that our progress is fragile, with
implementation of our most effective programs beginning to suffer as
funding does not keep pace with demand. U.S. investments have resulted
in groundbreaking scientific discovery, saved millions of lives, and
realized tremendous cost savings to the healthcare system by preventing
new infections and hospitalizations. We now know that early diagnosis
and continuous access to HIV treatment allows persons with HIV to live
long, healthy, and productive lives; is cost effective; and directly
benefits public health by stopping HIV transmission when people with
HIV achieve durable viral suppression by taking HIV medications without
interruption. Despite progress including a 14.8 percent reduction in
new infections between 2008 and 2015,\1\ just 50 percent of people
living with HIV are optimally benefiting from treatment.\2\ Moreover,
our progress is not uniform. The South, now the epicenter of the
epidemic with over half of new HIV diagnoses annually, lags behind
other regions in care and treatment outcomes. The funding requests in
our testimony largely reflect the consensus of the Federal AIDS Policy
Partnership, a coalition of HIV organizations from across the country,
and are estimated to be the amounts necessary to mount an effective
response to the HIV epidemic.
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\1\ Singh S, Song R, Johnson AS, McCray E, Hall HI. HIV Incidence,
HIV Prevalence, and Undiagnosed HIV Infections in Men Who Have Sex With
Men, United States. Annals of Internal Medicine, 2018 Mar 20. doi:
10.7326/M17-2082.
\2\ Centers for Disease Control and Prevention. HIV Continuum of
Care, U.S., 2014, Overall and by Age, Race/Ethnicity, Transmission
Route and Sex. https://www.cdc.gov/nchhstp/newsroom/2017/HIV-Continuum-
of-Care.html.
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health resources and services administration
HIV/AIDS Bureau
HRSA's (Health Resources and Services Administration) Ryan White
HIV/AIDS Program (RWP), conceived in 1990 as a public health response
to AIDS, stands today as the most effective and cost-effective
comprehensive care model in the U.S. As people with HIV live longer due
to effective treatment, more people need ongoing access to care. At the
same time, 37,600 new infections occur annually, straining the ability
of clinics to serve an ever-increasing patient load with flat and
increasingly inadequate funding. To continue providing comprehensive,
life-saving treatment and care for over 550,000 people with HIV, as
well as people newly coming into care, we request a $145 million
increase over fiscal year 2018 omnibus levels for the RWP for a total
of $2.465 billion. It is essential to expand overall funding levels for
the Ryan White Program at this critical time.
In particular, HIVMA urges an allocation of $225.1 million, or a
$24 million increase over current funding, for Ryan White Part C
programs. Part C-funded HIV medical clinics currently struggle to meet
the demand of increasing patient caseloads. The team-based and patient-
centered Ryan White care model has been highly successful at improving
clinical outcomes in a population with complex healthcare needs. Those
who receive Ryan White services are more likely to be prescribed HIV
treatment and to be virally suppressed. Between 2010 and 2016, the
viral suppression rate for all Ryan White clients increased from 70 to
85 percent.\3\ Annual healthcare costs for HIV patients whose virus is
not suppressed (often due to delayed diagnosis and care) are nearly 2.5
times that of healthier HIV patients.\4\
---------------------------------------------------------------------------
\3\ Health Resources and Services Administration. Ryan White HIV/
AIDS Program Annual Client-Level Data Report 2016. https://
hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-
client-level-data-report-2016.pdf.
\4\ Gilman BH, Green, JC. Understanding the variation in costs
among HIV primary care providers. AIDS Care, 2008:20;1050-6. doi:
10.1080/09540120701854626.
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As a key component of the opioid response, we recommend leveraging
the expertise of Ryan White clinics nationwide in treating individuals
with a complex condition in addition to substance use disorder (SUD)
and mental health disorders. Increased Ryan White Part C funding is
urgently needed to meet demand for SUD and mental health treatment for
people with HIV receiving care at these clinical sites. Additional non-
Ryan White funding for SUD treatment and supportive services such as
case management, would allow clinics to provide SUD treatment to
patients with other infectious diseases such as hepatitis C and SUD.
The RWP has always had bipartisan support and now reaches over half
of all people with HIV in the U.S. With instability in the individual
healthcare insurance market, new State restrictions on Medicaid
eligibility, increases in infectious diseases associated due to the
opioid crisis, and the rising number of people living with HIV, the
program's ability to meet demand for services including HIV treatment,
primary care and SUD treatment must be expanded with new resources.
centers for disease control and prevention
National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted
Diseases, and Tuberculosis Prevention
To meaningfully address the syndemic HIV, viral hepatitis, and STDs
epidemics, as well as the co-occurring crisis of addiction and
injection drug use associated with the opioid epidemic, we request a
$303 million overall increase above fiscal year 2018 levels for a total
of $1.430 billion.
For the Division of HIV/AIDS Prevention (DHAP), we request a total
of $872.7 million, which is an $84 million increase over fiscal year
2018 omnibus levels. DHAP conducts national HIV surveillance and funds
State and local health departments and community based organizations to
conduct evidence-based HIV prevention activities. In 2015, new
infections fell below 40,000 for the first time in decades. CDC's high
impact prevention strategies, grounded in the latest evidence-based HIV
prevention and treatment, are working but require new resources for
scale up. We appreciate the Administration's attention to the
infectious disease consequences of the opioid epidemic through an
``Elimination Initiative'' at CDC, but strongly oppose its short-
sighted proposal to cut $40 million from DHAP to fund it. This is not a
cost-effective way to approach the HIV epidemic. Now is a vital time to
invest new funding in all the divisions to prevent a worsening of
current epidemics. We will effectively address these overlapping
threats to individual and public health by building local and State
capacity to respond on multiple fronts.
For the Division of Viral Hepatitis (DVH), we request a total of
$134.0 million, which is a $95 million increase over fiscal year 2018
omnibus levels. On April 18, 2018, CDC announced that in 2016, there
were over 41,000 new cases of hepatitis C (HCV), a 21 percent increase
over 2015 and a 350 percent increase since 2010. New HCV and hepatitis
B (HBV) infections are being driven by injection drug use throughout
the country, and especially in regions hardest hit by the opioid
epidemic.\5\ A significant increase in resources is needed so that CDC
can adequately fund and support viral hepatitis education, prevention,
testing, and surveillance activities. With existing resources, the U.S.
is not equipped to monitor viral hepatitis cases and the impact of
these infections, much less appropriately cure and sufficiently prevent
new infections.
---------------------------------------------------------------------------
\5\ Centers for Disease Control and Prevention. Viral Hepatitis
Surveillance Report 2016. https://www.cdc.gov/hepatitis/statistics/
2016surveillance/pdfs/2016HepSurveillanceRpt.pdf.
---------------------------------------------------------------------------
For the Division of STD Prevention (DSTDP), we request a total of
$227.3 million, which is a $70 million increase over fiscal year 2018
omnibus levels. Last year, CDC reported the greatest ever number of new
STD cases, with over 1.6 million cases of chlamydia, 468,000 cases of
gonorrhea, and 28,000 cases of syphilis, including 628 cases of
congenital syphilis. This is a national public health emergency, and
should be declared as such. CDC and jurisdictional health departments
need a significant investment of new resources to expand local public
health capacity to conduct screening, linkage to treatment, and partner
services.
national institutes of health
Office of AIDS Research
To continue funding 21st century discoveries, such as an effective
vaccine, functional cure, and improved HIV prevention and treatment
options, HIVMA requests an overall fiscal year 2019 budget level of at
least $2 billion above the fiscal year 2018 omnibus for the National
Institutes of Health (NIH). Consistent with the most recent Trans-NIH
HIV/AIDS Research Professional Judgment Budget for fiscal year 2018, we
ask that at least $3.450 billion be allocated for HIV research at the
NIH in fiscal year 2019, an increase of $450 million. This level of
funding is vital to sustain the pace of research that will improve the
health and quality of life for millions of people in the U.S. and in
the developing world. Flat funding of HIV/AIDS research since fiscal
year 2015 threatens to slow progress toward a vaccine and a cure, erode
our Nation's historic worldwide leadership in HIV/AIDS research and
innovation, and discourage the next generation of scientists from
entering the field.
infectious diseases and the opioid epidemic
The ongoing opioid epidemic means we must prevent its infectious
diseases complications and bring those with addictive disease into
comprehensive treatment, medical care, and recovery services. Federal
fiscal year 2019 resources should support CDC's interventions to
prevent, track, and treat infectious diseases. Funding should support
collaboration with SAMHSA, CDC, and HRSA to support education and
training for medical providers on the frontlines of the epidemic to
expand access to coordinated care. NIH and CDC funding is needed to
expand research on opioid-related infectious diseases to include
endocarditis, and bone, skin and soft tissue infections, in addition to
HIV, and hepatitis B and C, and to address the unique barriers to care
for justice-involved individuals and rural populations.
evidence-based health policy--syringe service programs
HIVMA applauds the subcommittee's work in advancing report language
that allows for the judicious use of Federal funding for syringe
services programs as an important prevention and public health
intervention. We support the continuation of this policy.
conclusion
We will lose ground against the HIV epidemic if we fail to
prioritize HIV public health, treatment and research programs. Already,
many Ryan White clinics are underfunded to serve those with HIV who
need access to care and medications. The growing opioid crisis and
associated rise in infectious diseases, including HIV, calls for
increased investment in infectious diseases prevention, treatment,
care, and research. We will not end the HIV epidemic at home or abroad
with current levels of funding. Increasing funding for these successful
programs will save the lives of millions living with, or at risk for,
HIV, and will restore our progress toward ending HIV as a public health
crisis.

[This statement was submitted by Melanie Thompson, MD, Chair, HIV
Medicine Association.]
______

Prepared Statement of the Human Factors and Ergonomics Society
On behalf of the Human Factors and Ergonomics Society (HFES), we
are pleased to provide this written testimony to the Senate
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies for the official record. HFES urges the Subcommittee
to provide $454 million for the Agency for Healthcare Quality and
Research (AHRQ) and $339.121 million for the National Institute for
Occupational Safety and Health (NIOSH), in fiscal year 2019.
AHRQ funds research to protect and promote patient safety and care,
while identifying and evaluating efficiencies to save lives and reduce
costs. HFES requests $454 million, which is consistent with the fiscal
year 2010 level adjusted for inflation. This funding level will allow
AHRQ to rebuild portfolios terminated after the last 7 years of cuts
and will help the agency avoid a funding cliff that will result in more
than a 25 percent cut to its program level budget when the Patient-
Centered Outcomes Research (PCOR) Trust Fund is at risk of expiring at
the end of fiscal year 2019. HFES also urges the Subcommittee to
continue to fund AHRQ as its own agency, rather than integrating it
into the National Institutes of Health (NIH), as proposed in the
President's fiscal year 2019 budget request.
Additionally, HFES requests $339.121 million for NIOSH, including
funding for the Education and Research Centers (ERCs). The fiscal year
2019 President's budget request proposes reducing the NIOSH budget and
eliminating many NIOSH programs, which would limit the ability of
workers to avoid exposures that can result in injury or illnesses, push
back improved working conditions, eliminate occupational safety and
health educational services to U.S. businesses, and ultimately raise
healthcare costs. Further, support keeping NIOSH within the Centers for
Disease Control and Prevention and oppose moving it to the NIH, as
proposed in the President's fiscal year 2019 budget request.
HFES and its members recognize and appreciate the challenging
fiscal environment in which we as a nation currently find ourselves;
however, we believe strongly that investment in scientific research
serves as an important driver for innovation and the economy and for
protecting and promoting the health, safety, and wellbeing of
Americans. We thank the Subcommittee for its longtime recognition of
the value of scientific and engineering research and its contribution
to innovation and public health in the U.S.
the value of human factors and ergonomics science
HFES is a multidisciplinary professional association with over
4,500 individual members worldwide, comprised of scientists and
practitioners, all with a common interest in enhancing the performance,
effectiveness and safety of systems with which humans interact through
the design of those systems' user interfaces to optimally fit humans'
physical and cognitive capabilities.
For over 50 years, the U.S. Federal Government has funded
scientists and engineers to explore and better understand the
relationship between humans, technology, and the environment.
Originally stemming from urgent needs to improve the performance of
humans using complex systems such as aircraft during World War II, the
field of human factors and ergonomics (HF/E) works to develop safe,
effective, and practical human use of technology. HF/E does this by
developing scientific approaches for understanding this complex
interface, also known as ``human-systems integration.'' Today, HF/E is
applied to fields as diverse as transportation, architecture,
environmental design, consumer products, electronics and computers,
energy systems, medical devices, manufacturing, office automation,
organizational design and management, aging, farming, health, sports
and recreation, oil field operations, mining, forensics, and education.
With increasing reliance by Federal agencies and the private sector
on technology-aided decisionmaking, HF/E is vital to effectively
achieving our national objectives. While a large proportion of HF/E
research exists at the intersection of science and practice-that is,
HF/E is often viewed more at the ``applied'' end of the science
continuum-the field also contributes to advancing ``fundamental''
scientific understanding of the interface between human decisionmaking,
engineering, design, technology, and the world around us. The reach of
HF/E is profound, touching nearly all aspects of human life from the
healthcare sector, to the ways we travel, to the hand-held devices we
use every day.
conclusion
HFES urges the Subcommittee to provide $454 million for AHRQ and
$339.121 million for NIOSH. These investments fund important research
studies, enabling an evidence base, methodology, and measurements for
improving healthcare, safety, and public health for Americans.
On behalf of the HFES, we would like to thank you for the
opportunity to provide this testimony. Please do not hesitate to
contact us should you have any questions about HFES or HF/E research.
HFES truly appreciates the Subcommittee's long history of support for
scientific research and innovation.

[This statement was submitted by Valerie Rice, PhD, President and
Julie Freeman, Interim Executive Director, Human Factors and Ergonomics
Society.]
______

Prepared Statement of the Infectious Diseases Society of America
On behalf of the Infectious Diseases Society of America (IDSA),
which represents more than 11,000 physicians and scientists involved in
infectious disease prevention, care, research and education, I urge the
Subcommittee to reject the Trump administration's proposed budget cuts
for fiscal year 2019 and to provide robust fiscal year 2019 funding for
public health and biomedical research activities that save lives,
contain healthcare costs and promote economic growth. IDSA asks the
Subcommittee to provide $8.445 billion for the Centers for Disease
Control and Prevention (CDC), $39.3 billion for the National Institutes
of Health (NIH), and $700 million for the Biomedical Advanced Research
and Development Authority (BARDA).
centers for disease control and prevention
National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)
The NCEZID leads CDC efforts against antibiotic resistance as well
as serves to confront public health threats, including emerging and
vector-borne diseases. Given this critical work, we ask that NCEZID be
funded at $699.27 million.
Antibiotic Resistance Solutions Initiative (ARSI)
We urge $200 million in funding for the Initiative in fiscal year
2019. IDSA members see the impact daily that antimicrobial resistance
(AMR) has on patients. The Federal response to antimicrobial resistance
must be sustained to staunch the tide that now results in more than two
million infections and 23,000 deaths each year. In April 2018, a CDC
Vital Signs report, Containment of Novel Multidrug-Resistant Organisms
and Resistance Mechanisms, showed that early aggressive action does
slow the spread of resistant bacteria in healthcare settings, thereby
reducing such infections. The analysis details evidence that confirms
the value of the investment, including increased funding at CDC, to
combat AMR.
The report also highlights the need for continued and robust
funding for AMR given that nationwide testing last year documented 221
cases of so-called ``nightmare bacteria,'' that can spread resistance
to last-resort antibiotics. The report spells out the need to
accelerate efforts to curb resistance or face an increasing burden from
these health threats including novel resistance mutations. Despite the
grim warnings in the report, the administration's budget proposal would
cut funding for ARSI, threatening recent progress toward prevention and
detection of multi-drug resistant infections. The requested fiscal year
2019 funding would allow CDC to expand Healthcare-Associated Infections
(HAI)/AMR prevention efforts in all 50 States, six large cities, and
Puerto Rico. The CDC projects that over 5 years the initiative will
yield substantial declines in the leading resistant infections
affecting our communities. This funding will lead to a 60 percent
decline in healthcare-associated carbapenem-resistant
Enterobacteriaceae (CRE), a 50 percent reduction in Clostridium
difficile, a 50 percent decline in bloodstream methicillin-resistant
Staphylococcus aureus (MRSA), a 35 percent decline in healthcare-
associated multidrug-resistant Pseudomonas spp., and a 25 percent
reduction in multidrug-resistant Salmonella infections. This
substantial payoff means a clear net positive for the Federal budget to
recoup the direct costs of the program.
CDC Global Health Programs
The Administration's proposed cuts to CDC global health programs
jeopardize efforts to end HIV as a worldwide public health threat,
diminish the fight to limit drug-resistant tuberculosis, and endanger
domestic health security by reducing the ability to detect, prevent and
respond to infectious disease threats. IDSA urges the Subcommittee to
increase this investment in global health activities in fiscal year
2019 by providing $642 million in funding to support Global Health
Programs that protect Americans by improving health capacity and
outcomes overseas. This funding supports the global HIV program that is
a key implementer of PEPFAR and facilitates access to life-saving
antiretroviral treatment for 14 million people, including to pregnant
women living with HIV to prevent transmission to their children. The
CDC provides high-quality technical support for surveillance, infection
control, diagnosis and treatment of tuberculosis in 25 high burden
countries that this funding would enhance. The CDC global health
program is critical to ensure America's health security, including
strengthening laboratory capacities, disease surveillance and field
epidemiology activities in the developing world. Such steps stop health
threats overseas before they reach American soil. The CDC is a key
implementer of the Global Health Security Agenda that will expire in
September 2019 from lack of funding if additional resources are not
committed.
Vector-borne Diseases
A 2018 CDC Vital Signs report found significant increases in
vector-borne diseases over the past decade, including a doubling of
tick-borne diseases and outbreaks of mosquito-borne diseases like Zika
and Chikungunya in the US for the first time. Robust funding of at
$26.410 million for CDC's vector-borne disease efforts is necessary to
support State and local health department capacity for testing,
surveillance, and prevention.
National Healthcare Safety Network (NHSN)
Funding of $21 million in fiscal year 2019 would enhance NHSN
reporting at more than 20,000 healthcare facilities, including acute-
care hospitals, dialysis facilities, nursing homes and ambulatory
surgical centers, and enable CDC to continue to provide data for
national HAI elimination. Funding will also increase the number of
facilities reporting antibiotic use and resistance data, which is
essential to evaluate the impact of efforts to reduce inappropriate
antibiotic use and prevent the development of resistance.
Advanced Molecular Detection Initiative (AMD)
Funding of $30 million would allow CDC to more rapidly determine
where emerging diseases come from, whether microbes are resistant to
antibiotics, and how microbes are moving through a population. The AMD
strengthens CDC's epidemiologic and laboratory expertise to guide
public health action effectively.
Immunization Grant Program
$650 million in funding for the CDC's Immunization Program would
allow providers to obtain and store vaccines; establish and maintain
vaccine registries, and educate the public about the importance of
vaccines. The program helps to decrease the number of adults who die
each year from vaccine-preventable illnesses and helps prevent
outbreaks of diseases due to inadequate vaccination rates.
national institutes of health
National Institute of Allergy and Infectious Diseases (NIAID)
Within NIH, NIAID should be funded at $5.414 billion. The NIAID
plays a leading role in research for new rapid ID diagnostics,
vaccines, and therapeutics. When clinicians can quickly distinguish
between bacterial and viral infections with better diagnostics,
targeted patient therapies help preserve our increasingly tenuous
existing anti-infective drugs. These efforts, as well as research on
new antimicrobials and vaccines, are set to ramp up with the $50
million increased investment made last year. We ask that the
Subcommittee continue this work in fiscal year 2019. The Antibacterial
Resistance Leadership Group (ARLG), led by researchers at Duke
University and the University of California San Francisco, is an
example of extramural AMR research made possible by NIAID.
John C. Fogarty International Center
IDSA urges $78.500 million for the Center in fiscal year 2019. The
Fogarty Center is instrumental to our Nation's global standing, global
health security and our ability to detect and respond to pandemics.
U.S. patients and researchers benefit from Fogarty funded breakthroughs
on diseases including HIV, tuberculosis, malaria, cancer, diabetes, and
heart disease. More than 80 percent of Fogarty's extramural grant
budget goes to U.S. academic institutions, and 100 percent of funding
engages U.S scientists and researchers.
assistant secretary for preparedness and response
Biomedical Advanced Research and Development Authority
BARDA is a critical initiator of public-private collaborations for
antibiotic, diagnostic and vaccine R&D. IDSA recommends that the
Subcommittee provide $700 million for BARDA in fiscal year 2019. Such
funding is necessary to allow BARDA to pursue additional work on
antibiotic development while maintaining its strong focus on medical
countermeasures to address other biothreats. While BARDA's current
efforts have made important progress, the antibiotic pipeline remains
insufficient to meet the needs of our physicians and patients, and
severely complicates our responses to public health emergencies. The
BARDA-NIH Combating Antibiotic Resistant Bacteria Biopharmaceutical
Accelerator, or CARB-X, is one of the world's largest public-private
partnerships focused on preclinical discovery and development of new
antimicrobial products. CARB-X is working to set up a diverse portfolio
with more than 20 high-quality antibacterial products.
center for medicare and medicaid services
Despite the significant and vital contributions ID physicians make
to patient care, research and public health, their work continues to be
under-compensated. Such stresses have fueled a 20 percent decline in
physicians entering this field over the last 5 years. While over 90
percent of the care provided by ID physicians is considered evaluation
and management (E/M), current E/M codes fail to reflect the increasing
complexity of work undertaken by ID physicians to address the spectrum
of serious and emerging public health threats. The complex ID care for
patients includes the opioid user epidemic, hospital and post-visit
care coordination and patient counseling. New CMS research is needed to
identify and quantify elements required for complex medical
decisionmaking in these patients with serious infections and their
sequelae. The Subcommittee included language in the fiscal year 2017
omnibus appropriations bill directing CMS to conduct studies on E/M
codes, but the agency has not yet undertaken this research despite
acknowledging these deficiencies in the codes as recently as the 2018
Physician Payment Final Rule. However, we were pleased the
Administration's budget plan included $5 million in new funding for CMS
Program Management to study service codes. We urge the Subcommittee to
fully fund this effort and use this initial funding to study E/M codes.
infectious diseases and opioid use
The opioid epidemic is driving increasing rates of multiple
infectious diseases including HIV, hepatitis B and C, and infections of
the heart, skin and soft tissue, bones, and joints. The IDSA urges the
Subcommittee to provide funding that addresses the infectious disease
consequences of this epidemic. Since the 2015 HIV and hepatitis C
outbreak in Scott County, Indiana, the CDC has identified 220
additional counties in 26 States that are at risk for similar HIV
outbreaks among people who inject drugs. Many jurisdictions have
already reported increases in HIV cases linked to injection drug use.
The CDC estimates a 133 percent increase in acute HCV infections
directly arising from opioid use. While there are less data on many
other infections due to insufficient reporting and surveillance,
regional and State data analyses indicate a significant increase in
hospital infections due to endocarditis (an infection of the heart
valve requiring lengthy treatment) linked to injection drug use.
Federal fiscal year 2019 resources should support CDC--through the
National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention;
NCEZID; and the National Center for Injury Prevention and Control--to
integrate interventions aimed at preventing, tracking, and treating
infectious diseases with broader efforts to address the opioid
epidemic. Funding should also support collaboration with the Centers
for Medicare and Medicaid Services (CMS), SAMHSA, CDC, and HRSA, to
support education and training for medical providers on the frontlines
of the epidemic to help expand access to comprehensive, coordinated
care. Finally, NIH and CDC funding are needed to expand research on
opioid-related infectious diseases to include endocarditis,
osteomyelitis, bacteremia, skin and soft tissue infections, and
cerebral infections, in addition to HIV and hepatitis B and C and to
address the unique barriers to care and treatment for justice-involved
individuals and rural populations.
Thank you for the opportunity to submit this statement. The
Nation's ID physicians and scientists rely on strong Federal
partnerships to keep Americans healthy and urge you to support these
efforts. Please forward any questions to Lisa Cox at
[email protected].

[This statement was submitted by Paul Auwaerter, MD, President,
Infectious
Diseases Society of America.]
______

Prepared Statement of the Institute of Makers of Explosives
interest of the ime
The Institute of Makers of Explosives (IME) was founded in 1913 to
provide accurate information and comprehensive recommendations
concerning the safety and security of the commercial explosives
industry. Our mission is to promote safety, and the protection of
users, the public and environment, and to encourage the adoption of
uniform rules and regulations in the manufacture, transportation,
storage, handling, use and disposal of explosive materials used in
blasting and other essential operations.
IME represents the U.S. manufacturers and distributors of
commercial explosive materials and oxidizers as well as other companies
that that provide related services. Millions of metric tons of high
explosives, blasting agents, and oxidizers are consumed annually in the
U.S. Of this, IME member companies and their affiliates produce nearly
all of the high explosives and a great majority of the blasting agents
and oxidizers. These products are used in every State and are
distributed worldwide.
IME also publishes industry best practice standards in its Safety
Library Publications (SLPs). These standards have been incorporated in
Federal and State regulations and are used internationally. In
addition, IME publishes a number of guidance documents on various
subjects, such as our Safety and Security Guidelines for Ammonium
Nitrate \1\ and has produced several DVDs, including a DVD and Leader's
Guide for first responders detailing the proper response to
transportation incidents involving explosive materials.\2\ The SLPs are
regularly reviewed and updated by the Institute and represent the most
current, reliable and expert recommendations on explosives management
available to the industry. Last year, IME finalized: IME SLP 30, The
Safe Handling of Solid Ammonium Nitrate. Based on the AN Guidelines
mentioned above, SLP 30 is written to provide a best practice for the
safe handling of ammonium nitrate to protect the public, workplace
employees and commercial explosives businesses.
---------------------------------------------------------------------------
\1\ Safety and Security Guidelines for Ammonium Nitrate; IME,
International Association of Fire Chiefs (IAFC), International
Association of Explosive Engineers (ISEE), and the National Stone, Sand
& Gravel Association (NSSGA), (2013).
\2\ Responding to Highway Incidents Involving Commercial
Explosives, IME and Department of Transportation (2013).
---------------------------------------------------------------------------
In addition, IME has developed a comprehensive quantitative risk
assessment (QRA) software program, IMESAFR. The program is a windows-
based computer model for assessing the risk from a variety of
commercial explosives activities as an alternative to determining safe
setback distances based on decades old quantity-distance tables.
IMESAFR is a state-of-the-art tool that will prove invaluable to the
commercial explosives industry in our continuing mission to ensure the
health, safety and security of present and future generations of
explosive managers, the public and the environment.
comments
The following comments reflect our commitment to worker and public
safety.
Occupational Safety & Health Administration (OSHA)
IME reiterates our appreciation for the comments the Committee has
made in the past encouraging OSHA to conduct a cost-benefit analysis
before regulating AN within the scope of its review of ``Process Safety
Management and Prevention of Major Chemical Accidents (RIN: 1218-
AC82).'' With the particular rulemaking being moved to long term
actions, IME believes the Committee can help advance worker safety by
encouraging the OSHA to update the explosives and blasting agent
standard.
IME requests that Congress direct OSHA to update the
Sec. 1910.109(i) standard for the following reasons:
1. IME supports the continued reliance on the Sec. 1910.109(i)
standard, and updating this standard to match current industry
best practices.
a. The updates include; (1) a prohibition on the use of wooden
storage bins, (2) an instruction that fires involving AN
should not be fought (our recommendation against fighting
AN fires is aimed at offsite first responders, not to
trained, in-house fire brigades that respond to emergencies
in accordance with facility emergency action plans), and
(3) a requirement that facilities prepare emergency
response plans in accordance with 29 CFR 1910.38, and share
the plans with the local emergency responder community.
2. Current Sec. 1910.109(i) rules have proven very effective. Since
the standard was promulgated in 1974, there has not been an
accidental detonation of AN at any facility compliant with this
regulation.
3. The recommendations above in (1) are included in the previously
mentioned IME Safety & Security Guidelines for Ammonium Nitrate
(2013), SLP 30, and are largely consistent with the 2016
National Fire Protection Association (NFPA) 400 standard.
4. IME has already completed the outreach to bring in the fire
chiefs and other industry partners. IAFC, ISEE, and NSSGA, have
endorsed IME's recommendations.
5. AN is also subject to a number of other ATF, EPA, DHS, and DOT
safety and security regulations. Updating the current
regulations will provide clear and actionable steps that can be
taken to ensure safety of workers and the public, without the
substantial and recurring financial burden that compliance with
PSM, for example, would impose on hundreds of sites nationwide.
The ``technical'' grade of AN used in the explosives industry has
the same chemical composition as the ``fertilizer'' grade of AN used in
the agricultural sector; only the density of the prill is different.
AN, in either form, is not a volatile or self-reactive chemical
requiring constant diligence in its handling. Rather, it is a stable,
relatively benign substance when it is managed properly--and proper
management of AN is simple, well understood, and easily accomplished.
AN does not pose a threat of an accidental release of energy or
fumes unless subjected to substantial and sustained heat (e.g., fire),
contamination, or shock from a detonator or high impact projectiles.
For these reasons IME encourages Congress to direct OSHA to update
29 CFR 1910.109(i) to further enhance what is a proven, efficient
standard for the safe management and handling of AN.
Mine Safety & Health Administration
The fiscal year 2019 budget request for MSHA contains initiatives
that we support.
Regulatory Harmonization
Continue to work with stakeholders on regulatory reform of existing
standards. MSHA will request data and information from the mining
community to identify standards and regulations that could be improved
or made effective or less burdensome by accommodating advances in
technology, innovative techniques or less costly methods, including the
requirements that could be streamlined or replaced in frequency, in
accordance with E.O. 13777, Enforcing the Regulatory Reform Agenda.
Safety Alliances
IME formally entered into a voluntary alliance with MSHA to promote
safety across the commercial explosives sector. MSHA's Alliance Program
enables organizations, like IME, that are committed to mine safety and
health to collaborate with MSHA to prevent injuries and illnesses in
the workplace. Through the program, MSHA and its allies work together
to reach out to, educate, and lead the Nation's mine operators and
miners in improving and advancing mine safety and health. While the
safety statistics classified under Explosives and Breaking Agents by
MSHA are exemplary, IME believes that safety should never take a rest.
We look forward to continuing our work with MSHA to promote safety
across the entire commercial explosives industry.
Thank you for your attention to these requests.

[This statement was submitted by John Boling, Vice President of
Government
Affairs.]
______

Prepared Statement of the International Foundation for Functional
Gastrointestinal Disorders
fiscal year 2019 l-hhs appropriations recommendations
_______________________________________________________________________

--At least $39.3 billion in program level funding for the National
Institutes of Health (NIH)
--Proportional funding increase for NIH's National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK)
--Continued focus on digestive disease research and education at the
NIH
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, we thank you for the opportunity to present the views
of the International Foundation for Functional Gastrointestinal
Disorders (IFFGD) regarding the importance of supporting functional
gastrointestinal and motility disorders (FGIMDs) research. Established
in 1991, IFFGD is a patient-driven nonprofit organization dedicated to
improving the lives of individuals affected by chronic gastrointestinal
(GI) disorders, including FGIMDs, by providing education and support to
patients, healthcare providers, and the public. IFFGD also works to
bolster critical research aimed at advancing the development of better
treatment options and, eventually, cures for these conditions and has
worked closely with the National Institutes of Health (NIH) on research
priorities in this area.
As a patient myself, I am keenly aware of the need for increased
research, more effective and efficient treatments, and the hope for
cures for these debilitating and sometimes even life-threatening
conditions. Nearly two decades ago, as a young adult, I was diagnosed
with irritable bowel syndrome (IBS). I underwent extensive testing and
workups over many years in a costly and fruitless effort to discover
what was causing my symptoms and how to treat them. Eventually, I ended
up self-treating as best as I could and spent years trying to teach
myself to live with my illness. Unfortunately, I am not alone in these
experiences. Since becoming President of IFFGD I have heard my story
echoed back to me by thousands of others. Patients affected by these
disorders face significant delays in diagnosis, frequent misdiagnosis,
and inappropriate treatments including unnecessary surgery.
The path to diagnosis and care is slowed by the dearth of research
in this area. We ask for your consideration of supporting critical
research into the basic mechanisms and clinical care of FGIMDs through
your support of increased funding for the NIH. Thank you for your time
and your consideration of the priorities of the FGIMD community as you
work to craft the fiscal year 2019 L-HHS Appropriations Bill.
about functional gastrointestinal and motility disorders
FGIMDs are the most common digestive disorders in the general
population, occurring in about 1 in 4 people in the U.S. and accounting
for 40 percent of GI problems seen by medical providers. These
disorders are classified by symptoms related to any combination of the
following: motility disturbance, visceral hypersensitivity, altered
mucosal and immune function, altered gut microbiota, and altered
central nervous system (CNS) processing. Some examples of FGIMDs are:
dyspepsia, gastroparesis, IBS, gastroesophageal reflux disease (GERD),
bowel incontinence, and cyclic vomiting syndrome. Most FGIMDs have no
cure and limited treatment options, leaving patients to face a lifetime
of chronic disease management. The costs associated with these diseases
range from $25-$30 billion annually; economic costs are also reflected
in work absenteeism and lost productivity.
support for research at the nih
IFFGD urges Congress to fund the NIH at the level of $39.3 billion
or more for fiscal year 2019. Strengthening and preserving the Nation's
biomedical research enterprise through the NIH fosters economic growth
and sustains innovations that enhance the health and well-being of the
American people. Concurrent with overall NIH funding, IFFGD supports
the growth of research activities on FGIMDs to bolster the medical
knowledge base and improve treatment, particularly through the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The
NIDDK supports basic, clinical, and translational research on aspects
of gut physiology regulating motility and supports clinical trials
through the Motility and Functional GI Disorders Program.
patient perspective
I would like to share with you the patient perspective of one of
our members:
``My name is Melissa, in early February 2014, I spent a week in the
hospital and was eventually diagnosed with gastroparesis. My life
changed in ways I could not have imagined--overnight. One day, I was
able to eat at buffets and the next day, I was unable to tolerate all
foods and liquids. I was hospitalized with severe pain and vomiting,
put through a battery of tests, diagnosed, given only a brief
explanation of my illness and its treatment, and sent home.
For the next few weeks, I was on a liquids-only diet, and I was
told that I had to gradually work my way up to soft foods and
(eventually) solids. Unfortunately, nothing like that has occurred. I
am able to eat some soft foods, in tiny amounts, but it is becoming
clear to me that I will never again be able to eat ``normal'' foods in
``normal'' amounts.
At first, I told myself that I would not let this stupid disease
define or control me--it simply WOULD NOT be the center of my life. But
as time passed, I began to see how foolish that was. Every single day,
every second of every day, I think about food. I see it; I smell it; I
cook it and feed it to the other members of my household; but I cannot
have it myself. I look in the mirror, and I see a skeleton. I try to
eat even small amounts of food, and I am in agony. I am weak and
fatigued to levels I didn't think were possible. Some mornings, I don't
think I have enough energy to get out of bed. I can barely concentrate
and function enough to do everyday tasks. And almost every single
night, my husband has to help me up the stairs to bed because he is
afraid that if he doesn't, I might fall down those stairs. My 10-year-
old daughter has seen me vomiting, screaming in pain, lying on the
floor crying, and on the verge of passing out.
I grieve over the fact that I can no longer travel or get out of
the house for much of anything. I grieve over missing family events and
not being able to attend my daughter's activities. I grieve over not
being able to go out to eat, or on a picnic, or to another concert, or
any of the other things I know are not possible anymore. I worry that I
will not get to see my daughter graduate, or get married, or have
children.
I am not on the verge of death today, but when I look in the mirror
and think about how tired I am, I realize that people like this do not
have long life spans--and it bothers me. I get frustrated because
people do not understand how my life is affected by all of this. They
ask me all of the time if I am okay now. I can't seem to convince them
that I am never going to be okay again--not in the way they mean it. I
am told that I ``just need to eat.'' My own doctor accused me of being
an anorexic and told my husband to ``watch me.'' And though I know
people mean well and are trying their best to help, it still makes me
so frustrated.
There are hundreds (maybe thousands) of posts in my Facebook feed
every day from people who have had to go to the ER or back in the
hospital for dehydration, pain, or other such conditions. I know so
many people now who have feeding tubes or ports for nutrition. I know
many who have developed other serious conditions because of the
gastroparesis. I sometimes look at them and think that this will surely
be my future, too, and it scares me.
What I do understand is that it is important to me to let people
know what I go through--what all gastroparesis sufferers likely go
through. I am sharing these personal details in such a public forum
because I think it is important for people to see this disease. But I
think it is equally important to share how much I have been blessed
BECAUSE OF this disease and to let others know how much they matter and
how much of a difference they can make.''
Melissa's and my stories are far from unique. There are millions of
people across the U.S. suffering and sometimes dying because of these
disorders. We thank you for the opportunity to testify before your
committee on behalf of all of them and for your time and consideration
of our requests.

[This statement was submitted by Ceciel T. Rooker, President,
International Foundation for Functional Gastrointestinal Disorders.]
______

Prepared Statement of the Interstitial Cystitis Association
summary of recommendations for fiscal year 2019
_______________________________________________________________________

--Provide $1 million for the IC Education and Awareness Program and
the IC Epidemiology Study at the Centers for Disease Control
and Prevention (CDC)
--Provide $39.3 billion for the National Institutes of Health (NIH)
and Proportional Increases Across all Institutes and Centers
--Support NIH Research on IC, including the Multidisciplinary
Approach to the Study of Chronic Pelvic Pain (MAPP) Research
Network and Chronic Pain
_______________________________________________________________________

Thank you for the opportunity to present the views of the
Interstitial Cystitis Association (ICA) regarding interstitial cystitis
(IC) public awareness and research. ICA was founded in 1984 and is 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. Since its founding, ICA has acted as
a voice for those living with IC, enabling support groups and
empowering patients. ICA advocates for the expansion of the IC
knowledge-base and the development of new treatments. ICA also 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 (CPP). It is estimated that as many as 12 million
Americans have IC symptoms. Approximately two-thirds of these patients
are women, though this condition does severely impact the lives of as
many as 4 million men. IC has been seen in children and many adults
with IC report having experienced urinary problems during childhood.
However, little is known about IC in children, and information on
statistics, diagnostic tools and treatments specific to children with
IC is limited.
The exact cause of IC is unknown and there are few treatment
options available. There is no diagnostic test for IC and diagnosis is
made only after excluding other urinary/bladder conditions. It is not
uncommon for patients to experience one or more years delay between the
onset of symptoms and a diagnosis of IC. This is exacerbated when
healthcare providers are not properly educated about IC.
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, and higher rates of depression, anxiety, and sexual
dysfunction.
Some studies suggest that certain conditions occur more commonly in
people with IC than in the general population. These conditions 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 through cdc
ICA recommends a specific appropriation of $1 million in fiscal year
2018 for the CDC IC Program. This will allow CDC to fund the
Education and Awareness Program, per ongoing congressional
intent, as well as the IC Epidemiology Study.
CDC is coming to the end of the focus of the IC program on an
epidemiology study and before this the program focused primarily on
education and awareness. The IC community is concerned that focusing
solely on an epidemiology study instead of a renewed focus on education
and awareness activities is detrimental to patients and their families.
The CDC IC Education and Awareness Program is the only Federal program
dedicated to improving public and provider awareness of this
devastating disease, reducing the time to diagnosis for patients, and
disseminating information on pain management and IC treatment options.
ICA urges Congress to provide funding for IC education and awareness in
fiscal year 2019.
The IC Education and Awareness program has utilized opportunities
with charitable organizations to leverage funds and maximize public
outreach. Such outreach includes public service announcements in major
markets and the Internet, as well as a billboard campaign along major
highways across the country. The IC program has also made information
on IC available to patients and the public though videos, booklets,
publications, presentations, educational kits, websites, self-
management tools, webinars, blogs, and social media communities such as
Facebook, YouTube, and Twitter. For healthcare providers, this program
has included the development of a continuing medical education module,
targeted mailings, and exhibits at national medical conferences.
The CDC IC Education and Awareness Program also provided patient
support that empowers patients to self-advocate for their care. Many
physicians are hesitant to treat IC patients because of the time it
takes to treat the condition and the lack of answers available.
Further, IC patients may try numerous potential therapies, including
alternative and complementary medicine, before finding an approach that
works for them. For this reason, it is especially critical for the IC
program to provide patients with information about what they can do to
manage this painful condition and lead a normal life.
ic research through the national institutes of health
ICA recommends a funding level of $39.3 billion for NIH in fiscal year
2018. ICA also recommends continued support for IC research
including the MAPP Study administered by NIDDK.
The National Institutes of Health (NIH) maintains a robust research
portfolio on IC with the National Institute of Diabetes and Digestive
and Kidney Diseases (NIDDK) serving as the primary Institute for IC
research. Research currently underway holds great promise to improving
our understanding of IC and developing better treatments and a cure.
The NIDDK Multidisciplinary Approach to the Study of Chronic Pelvic
Pain (MAPP) Research Network studies the underlying causes of chronic
urological pain syndromes, including epidemiology. The MAPP Study has
continued to include cross-cutting researchers who are currently
identifying different phenotypes of the disease. Phenotype information
will allow physicians to prescribe treatments with more specificity.
Research on chronic pain that is significant to the community is also
supported by the National Institute of Neurological Disorders and
Stroke (NINDS) as well as the National Center for Complementary and
Integrative Health (NCCIH). The vast majority of IC patients often
suffer major and multiple quality of life issues due to this condition.
Many IC patients are unable to work full time because pain affects
their mobility, sleep, cognition, and mood. These are people that
simply want to lead productive lives, and need pain medication to do
so. Due to the fact that IC is categorized as a non-cancer pain
condition, IC patients already have a difficult time obtaining pain
meds. IC doctors do not have time nor the inclination to effectively
prescribe or monitor the distribution of the opioid class of
medication. They often refer their patients to Pain Management
Specialists, many who have never heard of IC, who often refuse to treat
them. In addition, antidepressants and benzodiazepines are often used
to treat both mood and sleeping disorders for IC patients.
Additionally, the NIH investigator-initiated research portfolio
continues to be an important mechanism for IC researchers to create new
avenues for interdisciplinary research.
Patient Perspective
My name is Amy Macnow and I was diagnosed with Interstitial
Cystitis about 3 years ago. A chronic bladder disease with no cure. The
first time in my life I've been sick with anything serious.
IC is a tough disease to diagnose, so it took some time. That is
one of the most challenging things to deal with, finding a Dr. that
specializes in IC that can help diagnose and treat. I can't stress
enough how important finding the right Dr.is. IC patients need a Dr.
who understands and is willing to go along with them on this long,
frustrating, painful and confusing road. I have found strength through
having this that I never knew I had, strength to keep going when all
treatments so far have failed me.
There are a small number of treatments available for managing IC
symptoms, but they only work on a small percentage of patients. I have
tried those treatments and some drugs that ``might'' help. I manage my
diet, take lots of supplements and have to see all kinds of Doctors
now. I have six! That includes holistic medicine doctors, physical
therapists, and acupuncturist. That's along with my regular MD,
Urologist and two different gynecologists. This is what my life has
become. The life of an IC patient.
I deal with one or more symptoms of IC EVERY SINGLE DAY. Some days
definitely better than others, but every single day. It affects my life
in so many ways. Work, social, travel and my intimate relationships. I
never know how I'm going to feel from one day to the next. Anxiety and
fear included.
I must say I am a bit hopeful though. Hopeful that with more
awareness raised we will start seeing more treatments, more trials.
More research and funding so one day there will be a cure. That is what
I hope for. I can learn how to live with IC. I have learned to be
strong, but I want to feel better. I want to be healthy again. I am one
of millions who feel this way.
Thank you for the opportunity to present the views of the
interstitial cystitis community.

[This statement was submitted by Lee Lowery, Executive Director,
Interstitial Cystitis Association.]
______

Prepared Statement of Jamestown S'Klallam Tribe
Chairman Blunt, Ranking Member Murray and distinguished members of
this Subcommittee, on behalf of the Jamestown S'Klallam Tribe, I would
like to thank you for this opportunity to submit written testimony on
our funding priorities and recommendations for the fiscal year 2019
appropriations process. The Federal budget for Tribal programs and
services should be reflective of the Federal Governments solemn promise
to honor and uphold its Trust and Treaty obligations to American
Indians and Alaska Natives (AI/ANs) given in exchange for vast tracks
of Tribal lands and resources. However, budgetary reductions to non-
defense discretionary programs, delayed passage of spending bills, the
absence of data to support Tribal funding requests, the failure to
ensure Tribal governmental parity with State and local governments in
various laws and regulations, and the severe and persistent
underfunding of programs and services for AI/AN and has severely
impacted our ability to maximize funding to effectively and efficiently
meet the basic needs of our Tribal communities and citizens. As a
result, our communities are more vulnerable to health risks and
disease, have a higher incidence of poverty, greater educational
discrepancies, and lower labor force participation rates.
We have shown time and again that the Federal investment in our
communities is a good investment. For example, the Jamestown Health and
Dental Clinics serve Tribal citizens, local veterans, as well as, our
non-Native surrounding communities. In providing these services, our
Tribe has realized a significant return on our investment and this
revenue is used to address healthcare needs, reduce healthcare costs,
and increase prevention and treatment services. This is just one
example of the immense potential that results when Congress empowers
Tribes to manage their own programs and services in a way that best
aligns with their communities and local needs through Self-Governance.
tribal specific health & education appropriation priorities
--Fund Medicare/Medicaid Expansion
--ESSA Title VII Impact Aid--$2 Billion
--Child Welfare Programs (Title IV--B, Subpart 1 & Subpart 2)--$280
million/$50 million
--Older Americans Act Title VI--$32 million
fund medicare/medicaid expansion
Historic and persistent underfunding of the Indian Healthcare
System is reflected in higher rates of disease and illness and shorter
life expectancy in Tribal communities. Per capita expenditures for AI/
ANs healthcare were just $3,136 per person compared to $8,760 per
person nationally based on the Indian Health Service fiscal year 2015
data. Given the inadequate funding for Tribal healthcare, Congress
authorized the Indian Health Service (IHS) and Tribal health facilities
to use Medicaid funding to supplement IHS funding for Medicaid eligible
individuals while, at the same time, ensuring that States would not
have to bear any associated costs. It is vital that the Federal
Government continue to fully fund Medicaid for eligible AI/AN because
the 3rd party revenue is used to supplement Tribal health programs.
Medicare/Medicaid has allowed our Tribe to partner with our local
communities to provide much needed healthcare services to local non-
Native community members, while at the same time, serving as
supplemental revenue which we use to leverage the Federal dollar to
address the unmet healthcare needs of our Tribal community and
citizens. Any changes to the way we receive Medicare and Medicaid
funding would negatively impact not only our Tribe but our surrounding
communities and the local economy. Our innovative approach to
healthcare is an effective and efficient use of the Federal investment
resulting in better health services and reduced healthcare costs.
ESSA Title VII Impact Aid--$2 Billion
Our mission to enhance self-reliance, self-sufficiency and
developing strong intellectually astute Tribal citizens includes
providing opportunities for personal growth through education.
Education is extremely important to our Tribe and continued and
increased funding for ESSA Title VII is needed to not only ensure the
success of our students and future Tribal leaders but to secure the
welfare and vitality of our Tribal community and culture. Currently, 93
percent of Native students are enrolled in local public schools. Impact
Aid provides essential funding to public schools serving Native
students. Schools use the money for a variety of purposes, including,
paying teacher salaries, purchasing text books and computers or for
other educational tools and objectives. Underfunding of Impact Aid has
negative consequences for AI/AN students as school districts struggle
to meet their basic educational needs. Fully and forward funding Impact
Act would ensure local school districts are not burdened with budgetary
constraints as they work together with Tribes and parents of AI/AN
students to improve educational opportunities.
Child Welfare Programs Title IV B (Subpart 1)--$280 Million & Promoting
Safe and Stable Familes Title IV B (Subpart 2)--$50 Million
Tribal child welfare case workers are deeply committed to keeping
children with their families and communities in order to maintain
cultural connections and cultural survival. Title IV B provides funding
to Tribes to support community based child welfare services. Tribal
tradition and culture is an integral component of Tribal child welfare
programs because it has been proven that culturally tailored programs
and services lead to better outcomes for AI/AN children and families.
Cultural integration leads to increased community participation and
support for these programs which in turn results in a more effective
response rate. Maximum flexibility in the use of these funds is
essential to allow Tribes to provide ancillary services, including,
parenting classes, conducting home visits, and addressing issues, such
as, alcohol and substance abuse that have a direct correlation to
American Indian/Alaska Native children becoming integrated into the
child welfare system.
Older Americans Act--$32 Million
Reducing isolation through community and cultural activities and
ensuring our Elders receive proper nutrition and healthcare is a
priority for our Tribe. Title VI of the Older Americans Act is the
primary funding source for the provision of these programs and
services. Our meal delivery program has been in service for over 20
years and serves over 1200 meals per month on average to our elders. We
use Title VI funds to prepare and deliver well-balanced meals to our
elders that incorporate traditional foods, such as, elk and fish and
vegetables grown in our community garden. Providing support services to
our elders is deeply rooted in our beliefs and ensures the survival of
our culture, traditions, and language. Our elders are the pathway to
the past, present and future for the next seven generations.
national health & education appropriation priorities
--Special Diabetes Program for Indians--$200 Million
--Alcohol and Substance Abuse Treatment--$114 Million Above the
Fiscal Year 2016 Level
Special Diabetes Program for Indians--$200 Million
The Special Diabetes Program for Indians is a critical program that
is saving lives in our Tribal communities. This program has grown to
become one of this Nation's most strategic and effective Federal
investments that is addressing the diabetes epidemic in Indian country.
In some Indian communities, nearly 60 percent of the population has
been diagnosed with this disease leading to higher medical expenditures
and lower life expectancies. Diabetes related health complications
include heart disease, neuropathy, vision issues, and a death rate that
is 1.6 times higher for AI/AN than the general population. However, the
Federal investment has already demonstrated significant improvements
for our citizens and communities. SDPI supports over 300 diabetes
prevention programs in the Indian Health Service, Tribal, and Urban
facilities in 35 States, and the results to date have been
extraordinary. In our community, blood sugar levels have decreased, the
risk of cardiovascular disease has been reduced, diabetes-related
kidney disease progression has slowed, and primary prevention and
weight management programs for adults and youth have increased. The
program has also encouraged adoption of health lifestyle behaviors and
an enhanced focus on AI/AN traditional and cultural practices of
cultivating native food sources and healthy traditional food options.
Tribes request permanent reauthorization, remaining a mandatory rather
than discretionary appropriation and a minimum increase of $50 million
for a total of $200 million for SDPI.
Alcohol and Substance Abuse Treatment--$114.5 Million Above Fiscal Year
2016 Level
Alcohol and Substance abuse has plagued Tribal communities for
years. A number of factors contribute to the high rates of abuse among
AI/ANs, including, intergenerational trauma, broken families, poverty,
erosion of traditional values, and limited socioeconomic opportunities.
Tribal communities will continue to struggle with addiction and the
inter-related social issues unless targeted funding is provided to
Tribes to address these issues in a culturally appropriate way.
The Jamestown S'Klallam Tribe continues to support the requests and
recommendations of our Regional and National Indian Organizations.
Thank you.

[This statement was submitted by Hon. W. Ron Allen, Tribal
Chairman/CEO, Jamestown S'Klallam Tribe.]
______

Prepared Statement of Johnson & Johnson
On behalf of Johnson & Johnson's 135,000 global employees, I am
pleased to provide written testimony to the House Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies in support of increased funding for the National Institutes of
Health (NIH) fiscal year 2019 budget.
Robust funding for NIH is necessary to ensure the agency's ability
to fuel innovation in medical research that advances healthcare here in
the United States and around the world, as well as to fortify America's
position at the forefront of research. This funding request also
represents what is required to remain competitive in addressing
emerging health threats confronting the United States and to continue
to encourage the pursuit of innovative solutions to address these
challenges.
As a physician and scientist, I have dedicated much of my life to
translating basic scientific research into medical advances. In my
current role as Global Head of Johnson & Johnson Global External
Innovation and as a board member of Research! America, the Nation's
largest not-for-profit public education and advocacy alliance, I am
acutely aware of the value of our country's investment in research.
In the United States, the vast majority of research into the root
causes of disease is publicly funded by the NIH through research grants
to more than 2,500 institutions across the country. This research
underpins the life sciences economy and enables healthcare companies to
transform scientific discoveries of today into the breakthrough
healthcare products of tomorrow. Furthermore, the research funded by
the NIH often enables the business case for the enormous, at-risk
investment of money and effort it takes to discover and develop an
important new medical treatment.
At Johnson & Johnson, our vision is to positively impact human
health through innovation. In 2017, $10.6 billion was invested in
research and development across our pharmaceutical, consumer and
medical devices companies. Our teams of scientists work tirelessly to
accelerate the translation of scientific discoveries into meaningful
treatments for patients in need. Much of our work, and that of
scientists across the industry, would not be possible without the
constant progression of the understanding of underlying disease
biology--precisely the type of research funded by the NIH.
In addition, Johnson & Johnson recognizes the crucial importance of
early-stage companies and the critical role NIH plays in supporting
these small businesses through Small Business Innovation Research
(SBIR) and Small Business Technology Transfer (STTR) funding. At the
Johnson & Johnson Innovation incubator sites, JLABS, we help
entrepreneurs and scientists realize their dreams of creating
healthcare solutions that improve lives by identifying and nurturing
highly innovative ideas in areas of potentially disruptive, cutting-
edge research, which may lead to novel platforms, products or
technologies. These are advances that the scientific community could
only imagine several years ago, yet they are becoming a reality today
through the support of public-private partnerships like these.
The work of the NIH is tied not only to innovation and the vitality
of the life sciences, but also to the health of our national economy.
NIH is the lifeblood of basic research for America, and is also an
incredible economic engine. In fiscal year 2017, NIH research funding
directly and indirectly supported over 400,000 jobs and spurred nearly
$69 billion in new economic activity. Moreover, the pace of medical
research must keep up with the aging of our population. There is an
urgent need, both on the individual and socioeconomic level, for
strategies to prevent illnesses associated with aging or lifestyle.
Diseases such as Alzheimer's, ALS, diabetes, cancer and heart disease
threaten to overwhelm our healthcare system in a matter of years with
enormous costs of care if we don't find ways to prevent, treat or cure
them.
Investments in biomedical research at the end of the 20th century
by the Federal Government, and pharmaceutical, medical device and
biotechnology companies, combined with the work of industry and NIH-
funded investigators across the country, have produced fundamental
scientific advances, vast new datasets, and increasingly sophisticated
areas of scientific research. As the NIH is working on projects in
areas like precision medicine, gene therapy and vaccines to prevent
infectious diseases like the influenza and HIV, there has never been a
more critical and promising time to work in medical research.
Johnson & Johnson believes that a commitment to fully funding the
NIH represents a commitment to fueling innovation in medical research.
It is also a commitment to our families by advancing science to match
medical need, to our current and future generations of scientists by
stimulating the life sciences community and to the prosperity of our
Nation as a worldwide leader in medical research. Sustainable, robust
investment is needed to strengthen this research and to realize its
benefits for improving people's lives and reducing the burden and
associated costs of today's major diseases all around the world.

[This statement was submitted by William N. Hait, MD, PhD, Global
Head,
Johnson & Johnson Global External Innovation.]
______

Prepared Statement of Kansas Neurological Institute
Parent-Guardian Group
Chairman Blunt, Ranking Member Murray, Members of the Subcommittee:
Thank you for the opportunity to provide Outside Witness Testimony
before the Senate LHHS Appropriations Subcommittee. My interest is
related to care and life-long involvement with our grandson, Aidan,
whose profound afflictions have been present since he was a young
toddler. Our respectful and urgent request is for the Subcommittee to
take distinct measures through the Appropriations process, to honor the
weakest members of society--those who are affected with the most severe
and profound Intellectual and Developmental Disabilities (I/DD). The
December 6, 2017 letter from Congressman Goodlatte, Chair of the House
Judiciary Committee, to Attorney General Jeff Sessions, regarding the
displacement of fragile Americans from licensed ICFs/IID in good
standing, largely clarifies our concerns. https://www.vor.net/news-and-
events/item/representative-bob-goodlatte-s-letter-to-a-g-jeff-sessions
The Developmental Disabilities Assistance & Bill of Rights Act of
2000 (DD Act) programs' administrative office, the Health & Human
Services Administration on Community Living (ACL), remains unresponsive
to concerns of families and legal guardians of profoundly affected DD
individuals who require close 24/7 care. ACL employees and State DD Act
program administrators hired under previous administrations continue a
troubling disregard for our most vulnerable, at-risk citizens.
Congressional oversight is desperately needed.
The growing number of abuse and deaths of individuals with
developmental disabilities occurring in community settings are often
marginalized, most notably by the DD Act program Protection and
Advocacy (P&A) systems, which operate in every State. Under the ACL
umbrella, P&A organizations, through litigation, lobbying, etc.
continue to denigrate and close specialized facilities for citizens
with developmental disabilities, which are under Federal law.
Currently in Ohio, families are enduring a class action lawsuit
brought by the federally funded Protection and Advocacy system against
the licensed facilities for their loved ones with disabilities. Such
actions by P&A representatives, carried out through skilled deception,
reveals a flagrant mis-use of public funds. Tragic outcomes in
scattered community settings are happening to such a degree that your
colleague, Senator Chris Murphy, called for a nation-wide investigation
in March of 2013.
We respectfully request the Committee to support the following
fiscal year 2019 House Appropriations report language:

`` . . . . . The Committee also notes that in Olmstead v. L.C.
(1999), a majority of the Supreme Court held that the Americans
with Disabilities Act does not condone or require removing
individuals from institutional settings when they are unable to
handle or benefit from a community-based setting, and that
Federal law does not require the imposition of community-based
treatment on patients who do not desire it.''

This leads to questions as to why Protection and Advocacy
organizations are:
--Over-imposing an extreme ideology which harms vulnerable citizens
--Allowed to disregard Federal law--and, perhaps most importantly,
--Why no one is holding federally funded P&A's accountable?
On behalf of the most vulnerable individuals unable to advocate or
defend themselves, we respectfully ask the Senate Appropriations
Committee/Subcommittee on LHHS to halt funds used for Class Action
lawsuits by Protection and Advocacy systems.
We strongly urge the Committee to include bill language that
ensures funding for P&A's is not used to remove Congressionally
authorized supports.

Respectfully.

[This statement was submitted by Joan Kelley, Vice-president,
Kansas Neurological Institute Parent Guardian Group.]
______

Prepared Statement of the Kansas Neurological Institute
Parent-Guardian Group
Chairman Blunt, Ranking Member Murray, Members of the Subcommittee:
Thank you for the opportunity to provide Outside Witness Testimony
before the Senate LHHS Appropriations Subcommittee. My interest is
related to care and life-long involvement with our grandson, Aidan,
whose profound afflictions have been present since he was a young
toddler.
Our respectful and urgent request is for the Subcommittee to take
distinct measures through the Appropriations process, to honor the
weakest members of society--those who are affected with the most severe
and profound Intellectual and Developmental Disabilities (I/DD). The
December 6, 2017 letter from Congressman Goodlatte, Chair of the House
Judiciary Committee, to Attorney General Jeff Sessions, regarding the
displacement of fragile Americans from licensed ICFs/IID in good
standing, largely clarifies our concerns. https://www.vor.net/news-and-
events/item/representative-bob-goodlatte-s-letter-to-a-g-jeff-sessions.
The Developmental Disabilities Assistance & Bill of Rights Act of
2000 (DD Act) programs' administrative office, the Health & Human
Services Administration on Community Living (ACL), remains unresponsive
to concerns of families and legal guardians of profoundly affected DD
individuals who require close 24/7 care. ACL employees and State DD Act
program administrators hired under previous administrations continue a
troubling disregard for our most vulnerable, at-risk citizens.
Congressional oversight is desperately needed.
The growing number of abuse and deaths of individuals with
developmental disabilities occurring in community settings are often
marginalized, most notably by the DD Act program Protection and
Advocacy (P&A) systems, which operate in every State. Under the ACL
umbrella, P&A organizations, through litigation, lobbying, etc.
continue to denigrate and close specialized facilities for citizens
with developmental disabilities, which are under Federal law.
Currently in Ohio, families are enduring a class action lawsuit
brought by the federally funded Protection and Advocacy system against
the licensed facilities for their loved ones with disabilities. Such
actions by P&A representatives, carried out through skilled deception,
reveals a flagrant mis-use of public funds. Tragic outcomes in
scattered community settings are happening to such a degree that your
colleague, Senator Chris Murphy, called for a nation-wide investigation
in March of 2013.
We respectfully request the Committee to support the following
fiscal year 2019 House Appropriations report language:
`` . . . . . The Committee also notes that in Olmstead v. L.C.
(1999), a majority of the Supreme Court held that the Americans
with Disabilities Act does not condone or require removing
individuals from institutional settings when they are unable to
handle or benefit from a community-based setting, and that
Federal law does not require the imposition of community-based
treatment on patients who do not desire it.''
This leads to questions as to why Protection and Advocacy
organizations are:
--Over-imposing an extreme ideology which harms vulnerable citizens
--Allowed to disregard Federal law--and, perhaps most importantly,
--Why no one is holding federally funded P&A's accountable?
On behalf of the most vulnerable individuals unable to advocate or
defend themselves, we respectfully ask the Senate Appropriations
Committee/Subcommittee on LHHS to halt funds used for Class Action
lawsuits by Protection and Advocacy systems.
We strongly urge the Committee to include bill language that
ensures funding for P&A's is not used to remove Congressionally
authorized supports.
Respectfully.

[This statement was submitted by Joan Kelley, Vice-president,
Kansas
Neurological Institute Parent Guardian Group Member.]
______

Prepared Statement of the Lower Elwha Klallam Tribe
The Lower Elwha Klallam Tribe submits this written testimony for
the record on the fiscal year 2019 President's Budget Request for
Labor, Health and Human Services and Education and Related Agencies
programs. The Lower Elwha Klallam Tribe supports a ``Department-wide
Tribal Health and Well-Being Coordinated Budget for the Department of
Health and Human Services''. Linked with the issue of mental health is
alcohol and substance abuse. Such a plan is critical to American
Indians and Alaska Natives (AI/AN) because of the epidemic rates of
alcohol and substance abuse in our communities. An integration plan of
these services would be inclusive of the Substance Abuse and Mental
Health Services Administration (SAMHSA), Administration for Children
and Families (ACF), Health Resources and Services Administration
(HRSA), Centers for Disease Control and Prevention (CDC) and the Indian
Health Service, even though the IHS appropriations is not included in
this Appropriations Subcommittee.
The Lower Elwha Klallam Tribal Health Department operates a multi-
disciplinary, ambulatory health department with 9 programs and 81
personnel. We provide services to Lower Elwha Klallam Tribal members,
other federally recognized AI/ANs, and other underserved people
residing in the greater Clallam County area. As a Tribally operated
facility, we provide direct patient care services that include medical,
dental, mental health, substance abuse, community health, prevention
health, integrative services, and purchased/referred care.
In an effort to present meaningful testimony absent the President's
fiscal year 2019 budget proposal, the Lower Elwha Klallam Tribe submits
the following requests for fiscal year 2019:

+$50 million--Tribal Behavioral Health Grants--Substance Abuse and
Mental Health Services Administration (SAMHSA);
+$50 Million--Increasing Tribal Access to Promoting Safe and Stable
Families (PSSF); and
+$3 million--Tribal Court Improvement--Tribal Court Improvement
Grants assist Tribal courts.
$50 million--Tribal Behavioral Health Grants
Substance Abuse and Mental Health Services Administration
(SAMHSA)
The Lower Elwha Klallam Tribe has a critical need to address the
mental health and chemical dependency epidemic in our community. For
our youth, substance abuse and suicide prevention efforts, the Tribe
finds that there is no budget equity and performance measures value
when Tribes have to compete with each other for critically needed
funding to address the widespread status of substance abuse and mental
health needs of our citizens. Tribal communities have a historical and
escalating need that is uncommon to the rest of the population and
requires additional resources to effectively treat the overwhelming
need. The Lower Elwha Klallam Tribe continues to see the effects of
heroin and opioid abuse in all ages at alarming, epidemic rates within
Clallam County.
The Lower Elwha Klallam Tribe uses third party revenue to subsidize
its substance abuse prevention and mental health programs in an attempt
to adequately address the treatment and long term needs of our patient
population with addiction and behavioral disorders. The Tribe realizes
the need for trauma-informed, long-term, AI/AN treatment facilities to
assist those caught in the cycle of addictions. Instead of ignoring the
rising heroine and opioid epidemic, the Tribe is in support of a budget
that will allow Tribes to facilitate culturally relevant, trauma-
informed treatment services to our patients so that they can continue
their journey of wellness in a manner that far surpasses the current
30-45 day in-patient treatment process that public insurance does not
adequately authorize or reimburse.
In the United States, we do not approach the treatment of other
chronic diseases, like cancer or heart disease, in this fashion. The
Tribe is requesting that the payment and reimbursement model for
chemical dependency in-patient and mental health services be critically
scrutinized. The Tribe urges Congress to fund the integration plan to
financially support its efforts in developing a Native best practice
treatment and payment system utilizing trauma-informed care targeted at
its families and communities.
+$50 Million--Increasing Tribal Access to ``Promoting Safe and Stable
Families (PSSF)''
Administration for Children and Families (ACF)
We support a budget request for $50 million increase in the
discretionary PSSF appropriations from the fiscal year 2016 enacted
level to increase the capacity of Tribes to administer child welfare
services. AI/AN children are disproportionately represented at two
times their population in State child welfare systems nationally. Among
individual State foster care systems they are overrepresented at as
much as 10 times their population rate. This proposal aims to address
this disproportionality by investing in Tribal child welfare systems
and, in turn, providing culturally appropriate services to Tribal
families.
Many Tribes lack infrastructure and stable funding. The Fostering
Connections to Success and Increasing Adoptions Act of 2008 allowed
Tribes to directly administer Title IV-E programs, but many Tribes need
to build their child welfare programs before they are able to consider
developing a program meeting the requirements of Title IV-E. With this
increase, total funding reserved for formula grants for Tribes would be
$56 million, including $36 million discretionary and $20 million
mandatory. We also support a proposal to improve access to PSSF funding
for Tribal grantees by eliminating the current statutory threshold of
$10,000 to receive a grant. It will be replaced with a minimum grant
award of $10,000 for all Tribes with approved plans, combined with a
hold harmless provision that guarantees that currently funded Tribes
receive not less than their current award, so as not to unintentionally
undermine the capacity of currently funded grantees. This proposal
allows access to critically important funding for preventive services
for all Tribes that wish to participate in the program and assures
greater stability and predictability in funding year-to-year.
+$3.0 Million--Tribal Court Improvement--Tribal Court Improvement
Grants assist Tribal courts to:
--Conduct assessments of how Tribal courts handle child welfare
proceedings
--Make improvements to court processes to provide for the safety,
permanency, and well-being of children as set forth in the
Adoption and Safe Families Act (ASFA) and increase and improve
engagement of the entire family in court processes relating to
child welfare, family preservation, family reunification, and
adoption
--Ensure children's safety, permanency, and well-being needs are met
in a timely and complete manner (through better collection and
analysis of data)
--Provide training for judges, attorneys, and legal personnel in
child welfare cases
This increase will allow the Administration for Children and
Families (ACF) to fund a total of 25 Tribal court improvement grants.
The expansion of the Tribal Court Improvement Program would continue to
strengthen the Tribal court's capacity to exercise jurisdiction in
Indian Child Welfare Act cases and to adjudicate child welfare cases in
Tribal court.
closing
There are additional funding areas and payment models that need to
be addressed and worked on for the overall health of American Indian
and Alaska Native citizens residing throughout the United States;
however, the support of the Congress and the Administration with the
efforts outlined in this request will help to begin addressing these
needs and is greatly appreciated.
Thank you.

[This statement was submitted by Hon. Frances G. Charles,
Chairwoman, Lower Elwha Klallam Tribe.]
______

Prepared Statement of the Lymphatic Education & Research Network
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for considering the views of the Lymphatic
Education & Research Network (LE&RN) as you begin work on fiscal year
2019 appropriations for the National Institutes of Health (NIH) and all
research and public health activities across the Department of Health
and Human Services (HHS).
about le&rn
The Lymphatic Education & Research Network (LE&RN) is an
internationally recognized non-profit organization founded in 1998 to
fight lymphatic diseases and lymphedema through education, research and
advocacy. With chapters throughout the world, LE&RN seeks to accelerate
the prevention, treatment and cure of these diseases while bringing
patients and medical professionals together to address the unmet needs
surrounding lymphatic diseases, which include lymphedema and lipedema.
about lymphedema and lymphatic diseases
The lymphatic system is a circulatory system that is critical to
immune function and good health. When it is compromised and lymph flow
is restricted, the physical impact to patients can be devastating, life
altering, and can lead to shortened lifespan. Lymphedema (LE) is one
such lymphatic disease. LE is a chronic, debilitating, and incurable
swelling that can be a result of cancer treatment, inherited or genetic
causes, damage to the lymphatic system from surgery or an accident, or
from parasites as in lymphatic filariasis. Up to 10 million Americans
and an estimated 170 million worldwide suffer from LE and related
lymphatic diseases. This includes up to 30 percent of breast cancer
survivors, children born with lymphatic diseases, veterans who have
suffered physical trauma, and tens of millions living with filariasis.
Currently, there are no cures and few treatments for these diseases.
Beyond lymphatic diseases such as lymphedema, lipedema and
filariasis, lymphatic research is impacting research on cancer
metastasis, heart disease, Alzheimer's, AIDS, Rheumatoid Arthritis,
Multiple Sclerosis, Diabetes, obesity and a host of other diseases.
fiscal year 2019 appropriations recommendations
LE&RN joins the broader medical research community in thanking
Congress for providing a $3 billion funding increase for NIH for fiscal
year 2018 and in requesting at least a subsequent $2 billion funding
increase for fiscal year 2019 to bring NIH's budget up to $39.3
billion, which is consistent with the necessary level of funding
identified through the 21st Century Cures Act.
In this regard, please provide proportional funding increases for
all NIH Institutes and Centers, including, but not limited to the
National Heart, Lung, and Blood Institute (NHLBI), the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the
National Institute of Allergy and Infectious Diseases (NIAID), the
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD), the National Eye Institute (NEI), the National
Cancer Institute (NCI), and the National Center for Advancing
Translational Sciences (NCATS). Lymphatics research impacts many
conditions and is studied across various Institutes and Centers at NIH.
Additionally, in late 2015, the National Institutes of Health (NIH)
hosted a Lymphatic Symposium that brought together leading researchers
and community stakeholders. This meeting resulted in identification of
a scientific roadmap that could build the research portfolio up to a
level of at least $70 million annually over subsequent years by funding
meritorious grants on critical topics. In an effort to further support
and enhance emerging lymphatic and lymphedema research activities, we
ask the Subcommittee to encourage further collaboration amongst
relevant Institutes and Centers conducting important research in this
area.
LE&RN also joins the broader public health community in asking
Congress to provide the Centers for Disease Control and Prevention
(CDC) with $8.445 billion through fiscal year 2019 and to provide
stability in funding regarding resources made available through the
Prevention and Public Health Fund, especially those public health and
cancer related activities with the potential to increase awareness,
education, and surveillance of lymphatic diseases. Please also
encourage CDC to partner with stakeholder organizations to advance
relevant projects in this regard.
patient perspective
I would like to share with you the patient perspective of one of
our members, Catherine, from Elkins, Arkansas:
``After I had gastric bypass in 2003 and lost 200 pounds, I started
noticing my legs swelling and asked my doctor about it. She gave me
water pills, which did not help. Every time I would see her I would
never get any answers as to why my legs were swelling.
I had made an appointment with a surgeon about getting my extra
skin removed on my stomach and she couldn't do the surgery because my
blood platelets were too low, but she did say I had lymphedema and
ordered me the strongest compression hose you can get, 40/50, which
years down the road I found out they were hurting me more than helping.
Then, I started wearing ones that weren't so strong. I now wear
compression wraps that my mother sends to me when she orders a new pair
for herself. (She too has lymphedema.)
There are days like today that my legs hurt so much. I don't know
what to do or who to talk to. It's very depressing because my family
just thinks that I can press through it and that it's not so bad. They
just don't understand. I just wish I could find a doctor who knows
what's going on with me and tell me if I'm even wearing the wraps right
or how long to wear them. I have so many questions that never seem to
get answered. It's so depressing. I wish there was someone to talk
to.''
Catherine's story helps to demonstrate the need for increased
awareness of these devastating diseases. In this regard, I would also
like to share excerpts from an NPR article written earlier this year
entitled, ``She Survived Breast Cancer, But Says A Treatment Side
Effect 'Almost Killed' Her,'' which shed light on the struggle with
lymphedema that many breast cancer survivors endure:
``After Virginia Harrod was diagnosed with stage 3 breast cancer in
2014, she had a double mastectomy. Surgeons also removed 16 lymph nodes
from under her armpit and the area around her breast, to see how far
the cancer had spread and to determine what further treatment might be
needed. Then she underwent radiation therapy.
As it turned out, the removal of those lymph nodes, along with the
radiation, put Harrod at risk for another disorder--lymphedema, a
painful and debilitating swelling of the soft tissue of the arms or
legs, and/or an increased vulnerability to infection. The lymph system
problem she developed months after her surgery was a direct result of
her lifesaving cancer treatment.''Cancer was a piece of cake,'' Harrod
says. ``It was the lymphedema that almost killed me.''
Harrod is a county prosecutor in Kentucky, and was able to return
to work just 10 days after her mastectomy. Her recovery from cancer
seemed to be proceeding well, she says, until the day--nine months
after the surgery--when her cat scratched her hand. She didn't think
much of it, she says, until the next day. ``My right arm started
itching terribly,'' Harrod says, ``and these bizarre little red
blisters were forming.''
Harrod figured it was hives, but her doctor recognized the symptoms
as a serious and advancing infection--cellulitis--and sent her to the
hospital for IV antibiotics.
Harrod was in the hospital for eight days, and that's when she
first learned she had lymphedema. Over the next 10 months, she was
readmitted twice more with dangerous infections.
It's usually a lifelong condition. Still, many people have never
heard of it. Dr. Joseph H. Dayan, a reconstructive surgeon with
Memorial Sloan Kettering Cancer Center, says he sees patients every
week who have survived breast cancer but break down in tears in his
office.
``They're crying, not only because they struggle with lymphedema,''
he says, ``but because many people, including some doctors, do not
recognize this as a debilitating condition'' that can require
laborious, daily care.
``People just don't see it,'' Dayan says. ``They don't see the
disability.'' Even for many doctors, he says, ``lymphedema is
overshadowed by the fact that cancer is the priority.''
Thank you for the opportunity to testify before your committee and
for you time and consideration of our requests.

[This statement was submitted by William Repicci, President and
Ceo, Lymphatic Education & Research Network.]
______

Prepared Statement of The Marfan Foundation
the foundation's fiscal year 2019 l-hhs appropriations recommendations
--$8.445 billion in program level funding for the Centers for Disease
Control and Prevention (CDC), which includes budget authority,
the Prevention and Public Health Fund, Public Health and Social
Services Emergency Fund, and PHS Evaluation transfers.
--$750,000 for a new rare cardiovascular conditions program at the
National Center for Chronic Disease Prevention and Health
Promotion (NCCDHP) to advance awareness activities that
would improve health for communities affected by these
conditions and lower healthcare costs with timely diagnosis
and proper management.
--At least $39.3 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increases for NIH's National Heart, Lung,
and Blood Institute (NHLBI); National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS);
National Eye Institute (NEI); and National Center for
Advancing Translational Sciences (NCATS).
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the heritable connective tissue disorders community as
you work to craft the fiscal year 2019 L-HHS Appropriations Bill.
about marfan syndrome and heritable connective tissue disorders
Connective tissue is found throughout the body and heritable
connective tissue disorders, like Marfan syndrome, can affect many
different parts of the body. Features of the disorders are most often
found in the heart, blood vessels, bones, joints, and eyes. Many of
these disorders are genetic conditions that cause the aorta (the main
blood vessel that carries blood from the heart to the rest of the body)
to enlarge, a life-threatening problem that requires appropriate and
timely medical intervention. Additionally, life-long chronic and
progressive issues remain a continuous burden.
about the foundation
The Marfan Foundation creates a brighter future for everyone
affected by Marfan syndrome and related disorders.
--We pursue the most innovative research and make sure that it
receives proper funding.
--We create an informed public and educated patient community to
increase early diagnosis and ensure life-saving treatment.
--We provide relentless support to families, caregivers, and
healthcare providers.
We will not rest until we've achieved victory--a world in which
everyone with Marfan syndrome or a related disorder receives a proper
diagnosis, gets the necessary treatment, and lives a long and full
life.
centers for disease control and prevention
At the direction of Congress, the Centers for Disease Control and
Prevention (CDC) currently makes a notable annual investment in public
health programs focused on the most common cardiovascular conditions.
These activities are tremendously valuable in terms of advancing
science, raising awareness, improving health, and lowering healthcare
costs. These successful efforts should be recognized and a parallel
program should be established in fiscal year 2019 for rare heart
conditions.
While any individual condition can be considered ``rare'', when
rare heart conditions are considered together, they impact millions of
Americans--any CDC activities would significantly benefit public
health. Moreover, many of these conditions are chronic, serious, and
have numerous comorbidities. An ongoing CDC campaign should focus on
multiple rare heart conditions in a systematic fashion through
meaningful collaboration with stakeholder organizations.
Please provide CDC with a specific funding level of $750,000 in
fiscal year 2019 (and moving forward) for a new rare cardiovascular
conditions program at the National Center for Chronic Disease
Prevention and Health Promotion.
national institutes of health
NIH, specifically NIAMS and NHLBI, have worked closely with the
Foundation to investigate the mechanisms of these conditions. In recent
decades, this research has yielded significant scientific breakthroughs
that have the potential to improve the lives of affected individuals.
In order to ensure that the heritable connective tissue disorders
research portfolios can continue to expand and advance, NIH requires
meaningful funding increases to invest in emerging and promising
activities.
patient perspective
Other than his height, Nick Vogel, a 6'9'' volleyball player from
San Diego, did not display easily-detectable characteristics of Marfan
syndrome. Intensive screening for the disorder isn't indicated nor
affordable for the average 16-18 year old who plays the sport, where
being tall is standard. It wasn't until a routine echocardiogram was
performed by the USA Volleyball Team's physician that an abnormality
was detected in Nick's aorta. Nick received the news while playing for
Club Team Friedrichshafen in Germany, and was told to stop all
strenuous activity immediately.
Genetic sequencing throughout the following weeks would reveal an
FBN1 mutation, and Nick subsequently retired from volleyball at the age
of 25. Since then, it has become Nick's mission (along with his mother
Rita) to raise awareness, to educate, and to support athletes who may
be affected by Marfan or related disorders. Without the echocardiogram
and subsequent genetic testing, Nick may not have received his
diagnosis until he had suffered a potentially life-ending aortic
aneurysm, and by then, it would be too late.

[This statement was submitted by Michael Weamer, President and CEO,
The Marfan Foundation.]
______

Prepared Statement of Mayor Robert Crowell
Chairman Blunt, Ranking Member Murray and Committee Members:
Thank you for the opportunity to inform you of essential services
for our community. As the committee works on fiscal year 2019
appropriations, please consider the following letter that explains the
critical importance of Title X to local communities in our Nation. This
program's principal role supporting providers to serve as essential
health access points for contraceptive care and related preventive
services is important to our community.
Carson City's Title X service area spans 856 square miles to
include Carson City and the adjoining Douglas County. The total
population of these two counties is approximately 102,000. Young adults
with young families are attracted to our area by employment
opportunities within the tourist and construction industries. These
families generally have income falling at the lower end of prevailing
wage scales.
Carson City Health and Human Services (CCHHS) is a local health
department that provides just over 5,000 high-quality family planning
and other preventive health visits to thousands of low income and/or
uninsured individuals. Eight-seven percent of those we serve are women
and 13 percent are men. Sixty-six percent have incomes below 100
percent of the Federal Poverty Level, 50 percent are uninsured, and 30
percent have public insurance. Access to a healthcare provider is not
readily available to all residents in our community; CCHHS is
designated by CMS as an Essential Community Provider. Services at our
Title X sites are provided at a lower cost than physician-based
clinics, as our Title X clinics are staffed with nurse practitioners
and registered nurses.
In some arenas, Title X Family Planning has been reduced to
ideological arguments surrounding birth control and abortion. In our
practice, the need for contraception brings women in for services, but
during the visit so much more is provided. In following the U.S
Preventive Task Force guidelines, men and women are screened for
weight, height, body mass index, high blood pressure and diabetes;
domestic violence and human trafficking; tobacco, alcohol and other
drug use; sexually transmitted infections and HIV; cervical and breast
cancer; and their desire for starting a family in the future. In
addition, we offer pregnancy testing, health education, along with
medical screenings that help men and women to be at their healthiest
when wanting to start a family. We, also, offer abstinence programs to
pre-teens and teens. Providing good healthcare is about offering to
clients whatever they need to improve their health and well-being.
Carson City's Title X Family Planning also plays an essential role
in testing and treating sexually transmitted infections. Out of 25
medical providers in Carson City our Title X service site reported 45
percent of all positive Chlamydia cases during 2014. Out of 22 medical
providers in the Douglas County our Title X service site reported 33
percent of all positive Chlamydia cases during 2014. Contrary to public
belief, men and women do not always want to share their reproductive
health needs with their primary care physician. Instead, residents come
to their local Title X clinic to be tested, treated and to discuss
their sexual health needs.
Carson City Health and Human Services has been in the forefront of
using an electronic health record and billing for public health
services in Nevada. Our local health department has invested in
building the infrastructure that supports quality care for our
residents. We are a responsible steward of Federal dollars--seeking out
multiple revenues streams in order to sustain our safety net
reproductive health program. The Title X program is an essential piece
of overall funding as we continue to provide health services within our
community. Without Title X funding many of our most-at-need residents
will be without the healthcare that we offer.
In 2014, Nevada's Title X Family Planning Services helped to
prevent 3,100 unintended pregnancies, which likely would have resulted
in 1,500 unintended births and 1,100 abortions. Without publicly funded
family planning, unintended pregnancies and unplanned birth in Nevada
would be 16 percent higher. For every dollar invested in Title X
supported services a savings of $7.09 is recognized. In 2010 alone,
Nevada recognized 20.5 million dollars in savings. Data from the
National Ambulatory Medical Care Survey shows only 65 percent of
generalist physicians accept new Medicaid patients. When individuals do
seek care with primary care physicians, only 23 percent of the visits
address reproductive health needs. Title X family planning clinics are
part of the medical safety net. But even more important in our Nevada
communities and across the country, Title X Family Planning is a
cohesive part of the overall fabric of comprehensive healthcare. Title
X Family planning clinics serve the preventive health needs within a
community so private medical providers and federally qualified health
centers can focus much needed and under --available services on the
care of acute and chronic diseases.
Yours Respectfully,
Mayor Robert Crowell.
______

Prepared Statement of Meals on Wheels America
Dear Chairman Blunt, Ranking Member Murray and Members of the
Subcommittee:
Thank you for the opportunity to present testimony concerning
fiscal year 2019 appropriations for the Older Americans Act (OAA)
Nutrition Program administered by the Administration for Community
Living (ACL)/Administration on Aging (AoA) within the U.S. Department
of Health and Human Services. I am providing this testimony on behalf
of the 2.4 million seniors who depend on congregate and home-delivered
meals to remain healthier and independent in their homes, as well as
the millions of volunteers and more than 5,000 local senior nutrition
programs that care for them in your own States and across the country.
We are grateful for your ongoing support of these proven and effective
nutrition programs, including the $59 million increase provided in H.R.
1625, the Consolidated Appropriations Act of 2018. We also appreciate
your concern for the issues surrounding senior hunger and isolation,
including the growing number of those who need Meals on Wheels but
remain on waiting lists for services due to limited funding. In fiscal
year 2019, we urge you to continue to build on the long-standing
bipartisan, bicameral support and increase Federal funding for the OAA
Nutrition Program by $100 million over fiscal year 2018 levels, for a
total of $996.7 million. Our specific line-item requests are:
--Congregate Nutrition Services (Title III, C-1)--$490,342,000
--Home-Delivered Nutrition Services (Title III, C-2)--$346,342,000
--Nutrition Services Incentive Program (Title III, NSIP)--
$160,069,000

At this critical juncture in our nation's history, when both the
need and demand for OAA Nutrition Program services are rapidly
climbing, we ask that you give this request your utmost consideration.
This program is one of the best examples of a successful public-private
partnership in which vulnerable seniors not only receive nutritious
meals, but also receive opportunities for socialization, safety checks
and connections to community resources that reduce healthcare costs and
benefit our communities and taxpayers, as a whole.
For more than 50 years, the OAA has been the primary piece of
legislation supporting vital services for older adults and their
caregivers, with congregate and home-delivered services being the only
Federal programs designed to meet both the social and nutritional needs
of our nation's most at-risk seniors. Proudly, the OAA Nutrition
Program has delivered over 8 billion meals since its inception, and the
network of service providers has the infrastructure and capability to
serve even more, if properly funded.
The person-centered, community-driven approach that Meals on Wheels
programs and millions of dedicated volunteers carry out each day
enables seniors to live more nourished and independent lives longer in
their own homes--where they want to be--reducing unnecessary and costly
visits to the emergency room, admissions and readmissions to hospitals,
and premature nursing home placements. In short, the OAA Nutrition
Program delivers more than just a meal to those who are fortunate
enough to receive its services and is an essential part of the solution
to reducing healthcare expenditures resulting from an aging population
that is increasingly threatened by hunger and isolation.
inadequate funding places more and more americans at risk
Today, one in four seniors lives alone and 8.6 million seniors may
not know from where their next meal will come. Yet, in 2016, funding
provided through the OAA was only able to support the provision of
meals to 2.4 million seniors nationwide. In addition, a 2015 Government
Accountability Office report found that about 83% of food insecure
seniors and 83% of physically-impaired seniors did not receive OAA
meals, but likely needed them. Further highlighting the problem, the
OAA network overall is serving 16 million fewer meals to seniors in
need than it was in 2005--representing a 6.6% decrease--due in large
part to Federal funding not keeping pace with inflation or need. Over
that same time, the population of individuals 60 and older grew by 38%.
Simply put, too few seniors who need meals are receiving them.
While the $59 million increase as part of the fiscal year 2018
Omnibus Appropriations Bill was an encouraging, desperately needed step
in the right direction, an increase of this level is not nearly enough
to close the gap between seniors in need and those served. Taking into
account that 12,000 more Americans turn 60 each day, this gap will
undoubtedly continue to grow and contribute to poorer health and
increased healthcare utilization among seniors if left unabated. We can
and must do better.
serving the most vulnerable
Data from ACL's State Program Reports and National Survey of OAA
Participants demonstrates that the seniors receiving meals at home and
in congregate settings, such as senior centers, need and rely on these
services to help them remain more healthy, safe and independent. Often,
the single meal provided through the OAA Nutrition Program represents
half or more of a senior's total daily food intake. Further, the meal
delivery volunteers, staff and/or peers at a congregate dining facility
may also be the only individuals a senior meal recipient sees in a
given day.
Below is the profile description of at-risk seniors receiving Meals
on Wheels through the OAA:
--59% are 75+ years old
--59% are women
--35% live at or below the poverty level
--46% self-report fair or poor health
--15% are veterans
--25% live in rural areas
--28% are a racial and/or ethnic minority
--82% take 3+ medications daily

The extreme vulnerability of this population was further
underscored in a groundbreaking 2015 study entitled More Than a Meal,
commissioned by Meals on Wheels America. The study found that seniors
on Meals on Wheels waiting lists were significantly more likely than a
nationally representative sample of comparably aged Americans to:
--report poorer self-rated health (71% vs. 26%);
--screen positive for depression (28% vs. 14%), and anxiety (31% vs.
16%);
--report recent falls (27% vs. 10%), and fear of falling that limited
their ability to stay active (79% vs. 42%).
Even a slight reduction in nutritional intake for a vulnerable
senior can accelerate physical and mental impairment and impede
recovery from illness, injury, treatment or surgery. A senior
struggling with hunger has physical limitations comparable to food-
secure seniors 14 years older, thereby causing a significant
discrepancy between chronological and physical age. Compounding the
struggles of hunger with the negative effects of loneliness on health--
which is comparably detrimental to smoking up to 15 cigarettes a day--
results in profound social and economic consequences. Without adequate
Federal funding, more and more seniors are forced to make daily trade-
offs between food, rent, utilities and medicine, which often
prematurely lands them in the emergency room, hospital and/or costly
long-term care facilities.
the solution exists
Older adults are often at risk of poor nutrition given the myriad
of social, economic and functional challenges that may accompany aging
and limit ability to access, prepare and consume nutritious foods. Food
insecurity and malnutrition are associated with poor health and $77
billion in healthcare costs annually. Especially frail seniors, like
those served through Meals on Wheels, mostly comprise the 5% of
individuals who account for over 50% of healthcare spending. Food-
insecure seniors are at higher risk of falls, which contributes another
$50 billion in total medical costs in 2015. However, the More Than a
Meal study referenced above found that those seniors who received daily
home-delivered meals (the traditional Meals on Wheels model of a daily,
home-delivered meal, friendly visit and safety check) experienced the
greatest improvements in health and quality of life. Specifically,
between baseline and follow-up, seniors receiving daily home-delivered
meals were more likely to exhibit improvements in physical and mental
health, including reductions in falls and the fear of falling, as well
as report fewer hospitalizations, reduced levels of anxiety, feelings
of isolation, loneliness and worry about being able to remain at home.
Investing in Meals on Wheels has also been shown to reduce hospital
readmissions and post-discharge costs. Further, in-home interactions
with a senior enables early detection of a change in condition or worse
yet, a medical emergency that can be immediately addressed. In previous
testimony, I have provided the Subcommittee with information relating
to the significant reductions in post-discharge costs--some as high as
31%--associated with interventions by Meals on Wheels. In pilot studies
in six States, 30-day readmission rates post-medical intervention
ranged from 6-7% for Meals on Wheels recipients in comparison to
national readmission rates of 15-33% over the same period. Every $25
per year per older adult spent on home-delivered meals results in a
reduction of up to 1% of the low-care nursing home population, saving
hundreds of millions of dollars in annual Medicaid costs alone, for
individuals and taxpayers. The infrastructure and cost-effective
solutions to support this unique population already exist through the
OAA network of more than 5,000 local, community-based programs. With
Federal funding as the foundation for 8 out 10 Meals on Wheels programs
that rely on the OAA to provide such critical social and nutrition
services to America's most at-risk seniors, now is the time to invest
further in these programs.
delivering a strong return on investment for our nation
We know you are tasked with making tough decisions during this
appropriations cycle; nonetheless, we make the ask for a $100 million
increase for home-delivered nutrition services because of the growing
unmet need and the powerful return to seniors and taxpayers alike.
Taking into account the undeniable success of this public-private
partnership--where $1 appropriated through the OAA leverages about $2
or more in other sources--a funding increase of $100 million could
enable the Meals on Wheels network to raise an additional $200 million,
creating the potential to serve an additional 88,000 seniors in need
annually. While still not enough to provide meals to every senior in
need, such a funding increase would build on the down payment that was
made through the fiscal year 2018 appropriations and further boost
Meals on Wheels programs' capacity to serve.
The OAA Nutrition Program currently takes up less than one-sixth of
1% of the total non-defense discretionary budget; meanwhile, Medicare
and Medicaid costs continue to rise year over year. Investing in
providing meals designed specifically for seniors' nutritional needs,
as well as creating opportunities for socialization and injury and/or
illness prevention, can change this. OAA Nutrition Programs are an
under-leveraged solution, with the potential to produce billions of
dollars in savings to the Mandatory side of the budget. By increasing
funding for meals, more seniors can remain in their own homes, driving
healthcare costs down significantly. After all, we can deliver Meals on
Wheels to a senior for an entire year for the same cost or less on
average as just one day in the hospital or ten days in a nursing home.
As your Subcommittee crafts and considers the fiscal year 2019
Labor-HHS-Education Appropriations Bill, we ask that you provide, at a
minimum, $996,753,000 for all three nutrition programs authorized under
the OAA (Congregate Nutrition Program, Home-Delivered Nutrition Program
and the Nutrition Services Incentive Program). To demonstrate
additional support for this increase, more than 30 of your colleagues
signed onto a letter on April 13, 2018, calling for a 12% increase to
all OAA programs. Again, we thank you for your leadership and continued
support through the appropriations process. We hope our testimony has
been instructive and are pleased to offer our assistance and expertise
at any time throughout this process.

[This statement was submitted by Ellie Hollander, President and
CEO, Meals on Wheels America.]
______

Prepared Statement of the Medical Library Association and Association
of Academic Health Sciences Libraries
I, Mary M. Langman, Director, Information Issues and Policy,
Medical Library Association (MLA), submit this statement on behalf of
MLA and the Association of Academic Health Sciences Libraries (AAHSL).
MLA is a global, nonprofit, educational organization with a membership
of more than 400 institutions and 3,000 professionals in the health
information field. 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. We thank the Subcommittee for
the opportunity to submit testimony supporting appropriations for the
National Library of Medicine (NLM), an agency of the National
Institutes of Health (NIH), and recommend at least $449,000,000 for NLM
in fiscal year 2019.
Working in partnership with the NIH and other Federal agencies, NLM
is the key link in the chain that translates biomedical research into
practice, making the data and results of research readily available to
all who need it. NLM is taking on additional responsibilities for NIH-
wide efforts in big data and data science. As health sciences
librarians who use NLM's programs and services every day, we can attest
that NLM resources literally save lives making NLM an investment in
good health.
nlm leverages nih investments in biomedical research
NLM's budget supports intramural services, research, and programs
that sustain the Nation's biomedical research enterprise and more--it
builds, sustains, and augments a suite of almost 300 databases which
provide information access to health professionals, researchers,
educators, and the public. It also supports the acquisition,
organization, preservation, and dissemination of the world's biomedical
literature. In fiscal year 2019 and beyond, NLM's budget must be
augmented to support expansion of its information resources, services,
research, and programs which collect, organize, and develop new ways to
make readily accessible rapidly expanding biomedical knowledge
resources and data. NLM maximizes the return on investment in research
conducted by the NIH and other organizations. It makes the results of
biomedical information accessible to researchers, clinicians, business
innovators, and the public, enabling such data and information to be
used more efficiently and effectively to drive innovation and improve
health. NLM also plays a critical role in NIH's data science
initiatives and in enhancing interoperability of health information
technology, including electronic health records (EHRs). NLM leads the
development, maintenance and dissemination of key standards for health
data interchange that are now required of certified EHRs. NLM also
addresses Congressional priorities through ClinicalTrials.gov, response
to the opioid crisis, and disaster preparedness and response efforts.
growing demand for nlm's information services
NLM delivers more than 50 trillion bytes of data to millions of
users daily 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. Every day, medical librarians
across the Nation use NLM's services to assist clinicians, students,
researchers, and the public in accessing information to save lives and
improve health. Without NLM, our Nation's medical libraries would be
unable to provide quality information services that our Nation's health
professionals, educators, researchers and patients increasingly need.
NLM's data repositories and online integrated services such as
GenBank, dbGaP, Genetics Home Reference (GHR), PubMed, and PubMed
Central (PMC) are revolutionizing medicine and ushering in an era of
personalized medicine. GenBank is the definitive source of gene
sequence information. Some 2 million users accessed consumer-level
information about genetics from GHR which contains more than 2,500
summaries of genetic conditions, genes, gene families, and chromosomes.
PubMed, with more than 27 million references to the biomedical
literature, is the world's most heavily used source of bibliographic
information with almost 1.2 million new citations added in fiscal year
2016 and more than 2.4 million users each day. PubMed Central is NLM's
digital archive which provides public access to the full-text versions
of more than 4.2 million biomedical journal articles, including those
produced by NIH-funded researchers. On a typical weekday approximately
1.4 million users download more than 2.8 million articles.
NLM's traditional print and electronic collections increase
steadily each year, standing at more than 21 million items--books,
journals, technical reports, manuscripts, microfilms, photographs and
images. NLM ensures the availability of this information for future
generations, making it accessible to all Americans, irrespective of
geography or ability to pay, and guaranteeing that citizens can make
the best, most informed decisions about their healthcare.
encourage nlm partnerships
NLM's outreach programs are essential to the MLA and AAHSL
membership and to the profession. Through the National Network of
Libraries of Medicine (NNLM), with over 6,500 members nationwide, NLM
educates medical librarians, health professionals, and the general
public about its services and provides training in their effective use.
The NNLM serves the public by promoting educational outreach for public
libraries, secondary schools, senior centers and other consumer
settings, and its outreach to underserved populations helps reduce
health disparities. NLM's ``Partners in Information Access'' provides
local public health officials with online information that protects
public health. The NNLM is partnering with the NIH All of Us Research
Program to support community engagement efforts by United States public
libraries and to raise awareness about the program.
NLM's MedlinePlus provides consumers with trusted, reliable health
information on 1,000 topics in English and Spanish. It attracts more
than 1 million visitors daily. NLM continues to enhance MedlinePlus and
disseminate authoritative information via the website, a web service,
and social media. MedlinePlus and MedlinePlus en espanol have been
optimized for easier use on mobile phones and tablets. NIH MedlinePlus
Magazine and NIH MedlinePlus Salud are available in doctors' offices
nationwide, and NLM's MedlinePlus Connect enables clinical care
organizations to link from their EHR systems to relevant patient
education materials.
emergency preparedness and response
NLM's Disaster Information Management Research Center collects and
organizes disaster- related health information, ensures effective use
of libraries and librarians in disaster planning and response, and
develops information services to assist responders. NLM responds to
specific disasters worldwide with specialized information resources
appropriate to the need, including bioterrorism, chemical emergencies,
fires and wildfires, earthquakes, tornadoes, and pandemic disease
outbreaks (e.g., Zika). MLA and NLM's Disaster Information
Specialization builds the capacity of librarians to provide disaster-
related health information outreach. Working with libraries and
publishers, NLM provides free full-text articles from hundreds of
biomedical journals and reference books to medical teams responding to
disasters.
bioinformatics research and health information technology
NLM supports informatics research, training and the application of
advanced computing and informatics to biomedical research and
healthcare delivery. NLM's National Center for Biotechnology
Information (NCBI) focuses on genomics and biological data banks, and
the Lister Hill National Center for Biomedical Communications (LHC), is
a leader in clinical information analytics and standards. Many of
today's biomedical informatics leaders are graduates of NLM-funded
informatics research programs at universities nationwide. A number of
the country's exemplary electronic and personal health record systems
benefit from findings developed with NLM grant support. A leader in
supporting the development, maintenance, and free, nationwide
dissemination of standard clinical terminologies, NLM partners with the
Office of the National Coordinator for Health Information Technology to
support adoption of interoperable EHRs. NLM also develops tools to make
it easier for EHR developers and users to implement accepted health
data standards and link to relevant patient education materials.
dissemination of clinical trial information
ClinicalTrials.gov, the world's largest clinical trials registry,
now includes more than 238,000 registered studies and summary results
for more than 24,500 trials. As health sciences librarians who fulfill
requests for information from clinicians, scientists, and patients, we
applaud NIH and NLM for implementing requirements for clinical trials
registration and results submission consistent with the FDA Amendments
Act of 2007, and for applying them to all NIH-supported clinical
trials. These efforts increase transparency of clinical trial results
and provide patients and clinicians with information to guide
healthcare decisions. They also ensure biomedical researchers have
access to results that can inform future protocols and discoveries.
improving public access to funded research results
The Department of Health and Human Services (DHHS) announced a
common policy approach to expand public access to the results of HHS-
funded scientific research. Its operating divisions, and other Federal
agencies, will use NLM's PubMed Central (PMC) as a common repository to
provide access to peer-reviewed publications resulting from their
research.
We look forward to continuing this dialogue and thank you for your
efforts to support funding of at least $449,000,000 for NLM in fiscal
year 2019, with additional increases in future years.
______

Prepared Statement of the Mesothelioma Applied Research Foundation
My name is Rich DeAugustinis. I am a patient advocate submitting
testimony on behalf of the Mesothelioma Applied Research Foundation,
and the thousands of patients afflicted with the disease in the United
States. I am requesting that the Senate Subcommittee on Labor, Health
and Human Services, and Education, and Related Agencies include
$500,000 in the Senate's fiscal year 2019 Labor/HHS appropriations bill
to fund the development of a national mesothelioma patient registry,
thus paving the way for critical advances in mesothelioma research, and
ultimately better patient outcomes for those dealing with this horrible
disease.
Mesothelioma is a cancer that occurs most frequently in the lining
of the lung or abdomen, and sometimes even in the lining of the heart
or testis. The 5-year survival rate for mesothelioma patients is grim
and ranges between 5-9 percent, with most patients dying within 2
years. Over the last 30 years, mesothelioma has claimed the lives of
nearly 100,000 Americans.
My wife is one of those that lost her life to this horrible,
preventable disease. I lost her to mesothelioma in May 2017 after a 15-
month battle with the disease. She was only 47 and in the prime of her
life. She was a beloved wife, a devoted mother, a business owner and a
hell of an engineer (we graduated from Georgia Tech together in 1992).
Tara ran her own consultancy in recent years before her death,
doing strategy and business integration with a number of clients. She
created considerable economic benefit and shareowner value to the
enterprises she was a part of during her career, contributing to the
growth of the tax base for the State of Georgia and the United States
of America.
But mesothelioma took that all away. Now my daughter Aubrey and I
are facing life without her due to this horrible disease. We need the
Federal Government to take steps to help prevent future tragedies, by
creating a national patient registry for mesothelioma. Currently, there
is no formal Federal registry to keep track of mesothelioma patients'
demographics or other important information that could help identify
gaps in current mesothelioma treatment.
The SEER registry managed by the CDC isn't useful for mesothelioma
patients, as they generally die before data is fully captured by the
Centers for Disease Control and Prevention (CDC). In fact, CDC's own
most recent research findings report an alarming number of younger
patients being diagnosed with this dreaded disease, often with no clear
exposure to asbestos. The same report also identifies a worrisome
overall rise in mesothelioma cases in the United States over the last
15 years.
The creation of a national mesothelioma patient registry is
critically important because it would allow the medical and scientific
community to:
--Establish successful treatment outcomes;
--Develop and revise standards of care and treatment and best
practices for patients with mesothelioma;
--Allow physicians across the country to share evidence-based
information;
--Implement benchmarks to improve care in mesothelioma clinics; and
--Identify centers that provide the most beneficial care to
mesothelioma patients.
The profound impact of patient registries has been demonstrated in
other diseases (such as gastrointestinal stromal tumors, Gaucher's
disease, newborn screening for inborn errors of metabolism,
interstitial pulmonary fibrosis, and muscular dystrophy) which,
following their implementation, have seen an acceleration in treatment
development and acceleration toward cures.
On behalf of mesothelioma patients and their families across the
country, I urge you to help us eradicate mesothelioma by including
$500,000 in the Senate's fiscal year 2019 Labor/HHS appropriations bill
to fund the development of a national mesothelioma patient registry.
______

Prepared Statement of METAvivor
fiscal year 2019 appropriations recommendations
_______________________________________________________________________

--Please provide the National Institutes of Health (NIH) with an
increase of at least a $2 billion in discretionary funding for
fiscal year 2019 to bring annual funding up to a minimum of
$39.1 billion.
--Please continue to support additional investment for the 21st
Century Cures Act and otherwise ensure the National Cancer
Institute (NCI) has adequate resources.
--The research portfolio focused on controlling and eliminating
cancer that has already disseminated (metastasized) is
extremely limited; yet metastatic cancer is responsible for
90 percent of all cancer deaths. I am here today to ask you
to please provide meaningful, annual funding increases for
NCI to allow research in this important area to move
forward. Further, please consider advancing committee
recommendations that further encourage NIH and NCI to
prioritize research into controlling and eliminating cancer
that has already disseminated.
--The 21st Century Cures Act and associated Cancer Moonshot, of
which my organization, METAvivor, is a part, holds
tremendous potential to improve the lives of individuals
and families affected by metastatic stage IV cancer.
However, the current plan outlines very few opportunities
in the area of metastasis except for a tangential
connection to the proposed tumor atlas through studying
cancer progression. We are asking that you support full
annual funding for the activities outlined in the 21st
Century Cures Act and work with your colleagues to ensure
this program includes new research that will benefit
patients, whose cancer has already metastasized.
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you once again for considering the views of
METAvivor and the stage IV metastatic cancer community as you work on
fiscal year 2019 appropriations for medical research. The community is
deeply grateful for the $3 billion funding increase provided to NIH in
fiscal year 2018. This investment along with past funding increases is
providing additional opportunity to our scientific investigators and
allowing NIH to enhance numerous research portfolios and initiate
critical projects.
the facts about metastatic stage iv cancer
A metastasis is defined by the dissemination or spread of cancer
from its original location to other vital organs in the body. Very few
cancers cause death without metastasis. Examples of the latter would be
brain and pancreatic cancers.
An estimated 609,640 Americans will die this year from cancer.
Close to 548,676 of these deaths (90 percent) will be caused by a
metastasis. If we wish to lower the death rate, we must tackle
metastasis. For roughly 30 years, the primary focus has been on
preventing cancer altogether and if that fails, catching it early. But
aside from convincing people to stop smoking, forbidding smoke in
common areas and removing colon polyps prior to malignancy, little
progress has been made. For many cancers, it is believed there are
multiple causes, few of which are known, making prevention a formidable
and more likely unachievable goal. Improved equipment has allowed some
cancers to be diagnosed as early as stage 0; however, stage 0 patients
are also metastasizing. And although we are slowly adding drugs to the
treatment repertoire, no drug is universal. For any given patient, some
drugs fail altogether and others last only a few months. While true
that some drugs continue to work year after year for a select group of
patients, this is the exception rather than the rule. We need not only
more treatments and therapies, we need better drugs for all metastatic/
stage IV cancer patients if we hope to change the death rate. And for
these, we need more research.
about metavivor
METAvivor Research and Support, Inc. is a volunteer-led, national
non-profit known throughout the US and Internationally. METAvivor's
mission is to fund stage IV metastatic breast cancer research to
transition the disease from terminal to one that is chronic yet
manageable and to improve the quality of life of those living with
metastatic breast cancer through support, awareness, advocacy and
education. It is further known for its peer-to-peer support program
created in 2007 as a METAvivor precursor to meet the unique support
needs of the metastatic patient community. 100 percent of every
donation goes to fund stage IV metastatic breast cancer research
grants. To date, METAvivor has awarded $4.2 million for 46 disseminated
(metastatic) breast cancer research grants.
the government, nih research and 21st century cures
While METAvivor takes pride in what our terminally ill group of
volunteers has accomplished, $4.2 million is a drop in the bucket in
terms of cancer research. Our government and the NIH/NCI need to step
up to the plate. It is our sincerest hope that one day efforts such as
METAvivor's will make a difference for the growing number of metastatic
patients dying every year.
The U.S. Government holds the responsibility for all its citizens.
The National Cancer Institute (NCI) carries the responsibility for all
cancer patients, not just those with early stage disease. Thus, we
strongly encourage the NCI to expand its portfolio to include a program
of respectable size that addresses the metastatic condition and funds
the research that will ultimately, significantly extend life with
quality and hopefully end death for at least a segment of our
community.
We are grateful that NIH has initiated important new projects in
metastatic cancer research. The administration's fiscal year 2019
budget request outlines numerous ongoing and emerging activities in the
overall field of metastasis to include the prevention of metastasis. We
urge Congress and the NIH to ensure a respectable percentage of these
projects focus on controlling existing metastases. Much more must be
done. We currently have more meritorious scientific questions than
answers. The rate of cancer mortality is unacceptable. And it will only
be changed by learning how to effectively treat metastatic cancer.
Please increase the focus and investment in this important area of
research and provide NIH and NCI with enough resources to facilitate
growth in the portfolio. Ongoing infusions of funds will ensure that we
can capitalize on emerging science and that breakthroughs are quickly
translated to innovative therapies and improved diagnostic tools that
can reverse the disease process and save lives.
The Department of Defense recently launched a metastatic breast
cancer research taskforce to bolster research efforts moving forward.
NIH would benefit from a similar sustained focus on efforts that help
control and eliminate cancer that has already disseminated.
my story
dian (``cj'') corneliussen-james, ltcol usaf ret
metastatic patient
Being Healthy Is No Guarantee: I am a retired Air Force
Intelligence Officer. Like many military professionals, I was thought
to be an example of good health. I was lean, ran daily, attended
aerobic classes, ate mostly vegetarian . . . per my doctor, I was doing
all the right things. Nine months after my Air Force retirement I had
my annual mammogram. Like all the previous scans, it was clean. Yet 3
months later I found a lump in my axillary. Shortely thereafter I was
diagnosed with Stage IIB breast cancer. Following surgery, chemotherapy
and radiation I was put on a drug maintenance program. Despite these
efforts, less than a year later my cancer had spread to my lung where
it grew rapidly, doubling in size within 90 days. My breast cancer had
metastasized. I did some research and learned that only 1-3 percent
survived the disease and that the average survival was only one to 3
years.
A Pervasive Positive Attitude and a Denial of Realities are
Thwarting Research: A diagnosis with metastatic cancer is devastating,
but I consoled myself in the belief that considerable research was
focused on finding solutions. After all, one frequently heard that we
were winning the war on cancer, especially when it came to breast
cancer. I thought that surely millions of dollars were being spent
trying to help those who metastasized. That bubble burst when in 2006,
I was watching a CNN Dr. Sanjay Gupta Special and learned that an
independent count in 2004 had established that the NIH was putting only
a pitiful 0.5 percent of its $5 billion cancer budget into metastasis
research. I found that there was a pervasive, yet inaccurate belief
that healthy, vigilant people did not metastasize. Thus, efforts to
prevent and early detect cancer were being promoted and applauded while
demands by metastasis researchers and metastatic patients to fund
research focused on lengthening and improving the lives of those who do
indeed metastasize, were being largely ignored. Indeed, one senior
metastasis research told me that the NIH had answered his request for
increased funding for metastasis research by saying: ``Why close the
barn door after the horse has escaped?'' Ours is a disease that
everyone prefers to ignore until it strikes their own families. Only
then do they seek change. Only then do they realize the reality of the
seemingly impenetrable brick wall that we face. And so the cycle
continues.
It Took the Termnally Ill to Effect Change: Outraged over this
situation, in 2007 I started a peer-to-peer support program for
metastatic breast cancer. We further began raising funds for research
that we intended to donate, but when no organizations would allow us to
earmark those funds for metastasis research, I asked three fellow
metastatic patients to join me in founding METAvivor. Our goal was to
fund our own research grants aimed solely at benefitting the already
metastasized patient. It was January 2009. We got off to a very
difficult start. Co-Founder Karen Presswood, my Director of Research
and a leading CVS pharmacist died in August 2009, Co-Founder Rhonda
Rhodes, my Vice President and Founder of a healthcare consulting firm
for underprivileged children died in January 2010. Co-Founder, Avis
Halberstadt, my treasurer, a retired math teacher and SAT coach died
July 2014. Nine additional Board Members have died since 2009. They are
among the roughly 1,500 Americans dying every single day of a
metastasized cancer. That is a staggering number.
The Metavivor Research Program: Despite METAvivor's critical
losses, we have created the first competitive, scientific peer reviewed
research grant program to ever focus solely on finding solutions for
the already metastasized patient. By working as volunteers and putting
100 percent of every donation into our research grants . . . and by
foregoing bucket lists and precious time with our families despite our
terminal conditions, our team has built a highly reputable program that
has thus far funded 46 research projects for a total of $4.2 million to
benefit the metastatic breast cancer community. But we can only do so
much on our own.
It is Time . . . time for our government to do its part. On behalf
of the entire metastatic community, I implore you to take steps now to
build a solid, government funded metastasis research program focused on
finding solutions for every metastatic patient. Thank you.

[This statement was submitted by Dian ``CJ'' Corneliussen-James,
Director Emeritus and Founder, METAvivor Research and Support.]
______

Prepared Statement of The Michael J. Fox Foundation for
Parkinson's Research
The Michael J. Fox Foundation for Parkinson's Research (MJFF)
appreciates the opportunity to comment on fiscal year 2019
appropriations for the U.S. Department of Health and Human Services.
Our comments focus on the importance of Federal investment in
biomedical research at the National Institutes of Health (NIH) and the
Centers for Disease Control and Prevention (CDC). MJFF supports at
least $39.3 billion for NIH, as well as the full authorized amount of
$5 million to implement the National Neurological Conditions
Surveillance System at CDC.
In providing more than $800 million in PD research to date, our
Foundation has fundamentally altered the trajectory of progress toward
a cure. However, MJFF investments are a complement to, rather than a
substitute for, federally funded research. Robust and reliable Federal
funding is imperative to drive progress. There are many potential
Parkinson's breakthroughs on the horizon, which are critically needed
by the millions living with this disease and the many more who will age
into Parkinson's risk.
national institutes of health
NIH Research Furthers Progress toward New Treatments and a Cure
Parkinson's is a chronic, progressive neurological disorder
affecting nearly 1 million people in the United States. The disease
costs Americans at least $26 billion each year. Without intervention,
the prevalence of Parkinson's is expected to more than double by 2040.
The financial impact and rising prevalence can be mitigated through
research to treat and cure PD.
Investing in NIH research on the front end to develop innovative
therapies and cures can lower back-end costs. Eighty percent of the
Parkinson's population relies on Medicare for healthcare coverage, and
up to one-third of people with PD are dual eligible for Medicaid due to
their income or disability status. Approximately 10 percent of
Americans with Parkinson's disease are military veterans. New
treatments would relieve the burden on Medicare, Medicaid and the
Department of Veterans Affairs. Additionally, NIH funds research in all
50 States, and every dollar of funding generates two dollars in local
economic growth.
Despite gains in the past 3 years, NIH funding has not kept pace
with medical inflation, and NIH purchasing power has declined since
2003. In 2017, NIH only funded about 12 percent of investigator-
initiated grants, leaving an untold number of breakthroughs
undiscovered. Patients and the medical community deserve stable and
reliable funding that allows for research progress and supports
innovative projects that bring us closer to cures.
While industry and philanthropy have prioritized Parkinson's
research--as evidenced, for example, in the public-private partnership
described in this testimony--these investments are not enough.
Researchers rely on federally funded basic research to make the
discoveries from which come deeper understanding and therapeutic
development. The biggest non-profit organizations and most generous
philanthropists cannot come close to the resources or scope of a
Federal agency committed to human health such as NIH.
The following projects leveraged Federal dollars to push
Parkinson's disease forward last year.
AMP PD: A Private/Public Partnership for a New Era
In January 2018, MJFF, NIH and five life sciences companies
announced a public-private partnership to advance understanding,
measurement and treatment of Parkinson's disease. Following NIH's
Accelerating Medicines Partnership (AMP) model, the new AMP PD project
will apply cutting-edge technologies to tease apart microscopic
differences in the cells of people with PD. MJFF and the five industry
partners are contributing a combined total of $12 million over 5 years
to AMP PD. National Institute of Neurological Disorders and Stroke
(NINDS), part of NIH, is matching those funds with an additional $12
million contribution. In line with MJFF and NIH open-access policies,
the partners will make data and analyses generated through this program
publicly available to the broad biomedical community.
This partnership demonstrates the amazing potential created when
Federal dollars are combined with resources from philanthropy and
private business to accelerate research and resource development. The
open access nature of data arising from the partnership will push
research forward and ensure future dollars spent build on existing
discoveries.
Identifying Genetic Links to Parkinson's Disease
About 20 years ago, researchers thought Parkinson's had no genetic
connection. Today scientists have a growing list of genetic variants
and mutations linked to the disease. While we've learned a lot in two
decades, we know there is more to discover. By comparing and
contrasting the DNA of tens of thousands of people with Parkinson's and
people without the disease, scientists are able to identify genes that
may be involved with the disease.
Previous studies using this strategy have identified a number of
potential genetic risk factors. In a recent study of data from 425,000
people, the largest of its kind for PD, NIH scientists along with
private partners confirmed a number of previously reported genetic risk
factors and identified 17 new variants associated with PD.
The Federal Government is in a unique position to access and
analyze these vast amounts of data, applying cutting-edge technologies
and statistical expertise to illuminate differences in our genes that
may predispose us to disease. Scientists can follow those genes to
investigate cellular dysfunction associated with Parkinson's--
increasing our disease understanding and nominating therapeutic
targets.
Training Computers to Analyze Living Cells
Seeing what happens in living cells is a vital part of
understanding disease. Because the human eye cannot distinguish
individual cells, even with a microscope, researchers have had to use
dyes and staining methods to make cell characteristics visible.
However, the chemicals used in this process can be lethal to the cells,
and the process is painstaking and time-consuming.
Ten years ago, a researcher at the Gladstone Institutes in
California invented a robotic microscope that could track individual
cells. Now he is using a computer and machine-learning methods to
profile the cells imaged by the robotic microscope: reporting if the
cell is alive, identifying its nucleus and naming its cell type. This
automated analysis significantly speeds up research into the living
cells, which has wide-reaching implications for the study of disease
and for drug development toward new therapies. Not limited to
Parkinson's research, this approach can help shed new light on the
mechanisms behind many complex diseases such as Alzheimer's and
amyotrophic lateral sclerosis (ALS).
centers for disease control and prevention
More Data Can Speed Breakthroughs
While there are rough estimates of the number of people diagnosed
with PD, we do not currently have accurate and comprehensive
information on how many people are living with the disease, who they
are and where they are located. This lack of core knowledge makes it
difficult to assess potential environmental triggers and other patterns
of disease. This absence of data also slows Parkinson's research and
drug development and makes it difficult to ensure healthcare services
are allocated properly.
The National Neurological Conditions Surveillance System, which was
authorized at $5 million each year by the 21st Century Cures Act, will
collect data on the number and location of people with neurological
diseases. The database will provide a foundation for understanding many
factors, such as clusters of diagnoses in certain geographic regions,
variances in the number of men and women diagnosed with neurological
diseases, and differences in healthcare practices among patients. CDC
will work efficiently to create the system by pulling information from
existing sources, such as Medicare, Medicaid and Veterans Affairs
databases, as well as State and local registries.
continued support for research is critical to drive progress
Momentum in Parkinson's disease research is strong. While we are
uncovering more about the causes and progression of Parkinson's and
testing many new treatments, many questions remain and more people are
facing a PD diagnosis. We need the financial and data resources to find
answers and slow the rise in disease prevalence. Robust investments in
NIH and CDC will continue to propel research forward, leading to life-
changing treatments and, ultimately, a cure.
Please allocate $39.3 billion for NIH, as well as the full-
authorized amount of $5 million to implement the National Neurological
Conditions Surveillance System at CDC. Thank you for the opportunity to
testify.
______

Prepared Statement of the Mine Safety and Health Administration
We are writing in support of the fiscal year 2019 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 support a full appropriation for State assistance grants for safety
and health training of our Nation's miners pursuant to section 503(a)
of the Mine Safety and Health Act of 1977. Under the State Grants
Program in fiscal year 2018, MSHA awarded $10,537,000 grant funding to
47 States, Guam, Native Village of Barrow, and the Navajo Nation. This
amount reflects a needed increase from $8,441,000 awarded in prior
fiscal years before fiscal year 2017. The States appreciate this
increase, which is essential to addressing inflationary and
programmatic cost increases experienced by the States, and providing
important safety training to the Nation's miners. We urge the
Subcommittee to maintain this statutorily authorized level of $10
million for State assistance grants so that States are able to meet the
training needs of miners and to fully and effectively carry out State
responsibilities under section 503(a) of the Act. We believe the States
can justify the need for funding at the statutorily authorized level.
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 26
member States. The States are represented by their Governors who serve
as Commissioners.
It should be kept in mind that, whereas MSHA over the years has
narrowly interpreted State assistance grants as meaning ``training
grants'' only, Section 503 was structured to be much broader in scope
and to stand as a separate and distinct part of the overall mine safety
and health program. In the Conference Report that accompanied passage
of the Federal Coal Mine Health and Safety Act of 1969 (Coal Act), the
conference committee noted that both the House and Senate bills
provided for ``Federal assistance to coal-producing States in
developing and enforcing effective health and safety laws and
regulations applicable to mines in the States and to promote Federal-
State coordination and cooperation in improving health and safety
conditions in the Nation's coal mines.'' (H. Conf. Report 91-761). The
Federal Mine Safety and Health Act (Mine Act) of 1977 expanded these
assistance grants to both coal and metal/non-metal mines and increased
the authorization for annual appropriations to $10 million. The
training of miners was only one part of the obligation envisioned in
Congress.
With respect to the training component of our mine safety programs,
IMCC's member States are concerned that without full, stable funding of
the State Grants Program, the federally required training for miners
employed throughout the U.S. 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. The situation has been further complicated
by statutory, regulatory and policy requirements that have grown out of
the various reports and recommendations attending the Upper Big Branch
investigation. We greatly appreciate Congress' recognition of this fact
and this Subcommittee's strong support for State assistance grants,
especially over the past few years when the Administration sought to
eliminate or substantially reduce those moneys.
Our experience over the past 35 years has demonstrated that the
States are often in the best position to design and offer mine safety
and health 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 most recent accounting of the number of miners
trained by a sampling of the States based on fiscal year 2017 reporting
for coal and metal/nonmetal is as follows:
--Kentucky: 10,916 miners trained
--Alaska: 929 miners trained (A noticeable upswing in numbers of
miners trained is expected in Alaska for fiscal year 2018. The
number of miners trained during the first quarter of fiscal
year 2018 increased by 10 percent over the number trained
during the same period in fiscal year 2017.)
--New Mexico: 2,431 miners trained
--Illinois: 17,094 miners and contractors trained (including
Aggregate Part 46, Accident Prevention, Certification and Mine
Rescue; and EMT training)
--Indiana: 5,773 miners and contractors trained
--Oklahoma: 3,921 miners trained
--Pennsylvania: 5,304 miners trained
--Ohio: 5,989 miners trained
--Colorado: 5,352 miners trained
--Arkansas: 2,388 miners trained
--Nevada: 2,474 miners trained
--North Carolina: 7,146 miners trained
--Maryland: 611 miners trained
--Arizona: 2,489 miners trained
--Virginia: 5,200 miners trained (Includes coal and minerals mining;
28,400 training sessions total were conducted with the miners
throughout the year in various settings)
--Mississippi: 236 miners and contractors trained
Note that numbers of miners trained has been decreased in some
years due to reductions and/or delays in State grant funding. This
continues to be a serious challenge for State training programs in
fiscal year 2018 with States still awaiting the allocation of grant
awards as of April 20, 2018--more than 6 months into the fiscal year.
We understand the fiscal year 2018 Funding Opportunity Announcement is
currently under review at MSHA and expected to be published at the end
of April. Delays in authorizing grant allocations disrupt the States'
ability to run effective training programs that rely on certain,
consistent, and timely funding. In fiscal year 2017, MSHA allowed for
incremental State grant funding during the fiscal year (as other
Federal agencies do) to overcome these challenges. Several States
received incremental funding in fiscal year 2017, including: Alabama,
Arizona, Connecticut, Iowa, Ohio, Pennsylvania, South Dakota, and
Tennessee. We appreciate MSHA having instituted the incremental State
grant funding approach in fiscal year 2017 and encourage its continued
use in future years. Having access to the funds in a timely manner is
critical to the States in order to operate their training programs
effectively.
As you consider our support of 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) and the Spanish-speaking community
in meeting their required training needs.
We appreciate the opportunity to submit our views on the MSHA
fiscal year 2019 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.

[This statement was submitted by Thomas L. Clarke, Executive
Director,
Interstate Mining Compact Commission.]
______

Prepared Statement of Morehouse School of Medicine
department of health and human services and department of education
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to submit testimony on
behalf of Morehouse School of Medicine (MSM). I am Valerie Montgomery
Rice and I serve as President and Dean of MSM located in Atlanta,
Georgia. My testimony will give a brief history of MSM, discuss how MSM
creates advancements in health research and equity, and highlight the
sources of funding which allow MSM to serve its Georgia communities.
Through our social mission, we at MSM serve underrepresented
communities, address health disparities, supply the health workforce
with highly qualified health professionals, and research chronic
diseases impacting vulnerable populations. With this in mind, I am
making the following recommendations for the fiscal year 2019
appropriations process:
--$8.56 billion for the Health Resources and Services Administration
(HRSA)
--$30 million for HRSA's Health Workforce: Centers of Excellence
(COE)
--$16 million for HRSA's Health Workforce: The National HCOP
Academy
--$2 million for HRSA's Health Workforce: Faculty Loan Repayment
--$50 million for HRSA's Health Workforce: Scholarships for
Disadvantaged Students
--$40 million for HRSA's Health Workforce: Area Health Education
Centers
--$39.3 billion for the National Institutes of Health
--$312 million for the National Institute on Minority Health and
Health Disparities
--$50.00 million for the Centers for Disease Control and Prevention's
Racial and Ethnic Approaches to Community Health (REACH)
program
--$60 million for the Department of Health and Human Services' Office
of Minority Health
--$53.90 million for the Department of Health and Human Services'
Minority HIV/AIDS initiative
--$75 million for The Department of Education's Strengthening
Historically Black Graduate Institutions Title III Program

Morehouse School of Medicine was founded in 1975 as the Medical
Education Program at Morehouse College. In 1981, MSM became an
independently chartered institution and today, MSM is among the
Nation's leading educators of primary care physicians and is recognized
as the top institution among U.S. medical schools for our social
mission. Our faculty and alumni are noted in their fields for
excellence in teaching, research, and public policy. Through our
clinical and research enterprises and community-based outreach and
engagement, MSM is forging inroads by creating and advancing health
equity and health outcomes for all communities at the highest level of
excellence. Morehouse School of Medicine recognizes the challenges
facing the health workforce in the coming decade and with your
continued support, we are positioned to facilitate a class size growth
of 20 percent across all of our disciplines by 2020. In 2017, we
successfully expanded our educational training for medical students
through our remote campus location in Columbus, Georgia, thus providing
more opportunities for MSM to reach more communities in rural areas of
the State.
At Morehouse School of Medicine, we foster success in our diverse
student body population in order to cultivate health equity.
Matriculation and academic success among underrepresented minorities
are key priorities of MSM. Through our pipeline initiatives like the
EMPOWER Conference and MSM's Health Careers Opportunity Program, we
support diverse student learners ranging from kindergartners to those
in their post-baccalaureate studies. Through these pipeline programs,
we are able to provide the necessary guidance to navigate Science,
Technology, Engineering, Arts and Mathematics (``STEAM'') studies,
professional healthcareers, and entry into medical school programs when
applicable.
Through investments in our research infrastructure with funding
from the National Institute of Health (NIH) and the Health Resources
and Services Administration (HRSA), Morehouse School of Medicine's
research stature and reputation has grown exponentially over the last
decade. In 2017, we were able to make advancements in our four core
research areas of cancer, cardiovascular diseases, neurological
diseases, and infectious diseases. In 2017, we secured over $40 million
in grant funding for new and renewed research projects. This funding
was used, in part, to address the opioid crisis in rural communities
across Georgia, discover a new method to test patients for concussions
using RNA profiles, and enhance our knowledge of sleep and its
functionality outside the biological clock within the human brain.
As Congress begins the fiscal year 2019 process, MSM asks that you
further prioritize Title VII health professions training programs,
medical research, research infrastructure, and graduate medical
education, particularly with hospitals and agencies that partner with
historically black medical schools like MSM. With support for these
initiatives, desired outcomes such as improving the quality, geographic
distribution, and diversity of the healthcare workforce for the purpose
of creating an equitable healthcare system for our Nation is possible.
Chairman Blunt, Ranking Member Murray, and members of the committee,
thank you for your time and your consideration of these requests.
Please consider Morehouse School of Medicine as a resource if you have
any questions or if you would like additional information.

[This statement was submitted by Valerie Montgomery Rice, M.D.,
President and Dean, Morehouse School of Medicine.]
______

Prepared Statement of Nation Association for Geriatric Education
As the Co-Project Directors of the Gateway Geriatric Workforce
Enhancement Program at Saint Louis University School of Medicine, we
are pleased to submit this joint statement for the record recommending
appropriations of at least $51 million in fiscal year 2019 to support
geriatrics workforce training under the Geriatrics Workforce
Enhancement Program (GWEP) and the Geriatric Academic Career Award
(GACA) program administered by the Health Resources and Services
Administration (HRSA). We thank you for your past support and
particularly for the increase of $2 million in the Consolidated
Appropriations Act, 2018.
In fiscal year 2015, HRSA combined the geriatric education programs
in Titles VII and VIII of the Public Health Service Act, including the
Geriatric Academic Career Award, as well as portions of the Alzheimer's
Disease Prevention, Education, and Outreach Program to establish the
Geriatrics Workforce Enhancement Program (GWEP). The GWEP is now the
only Federal program designed to develop a healthcare workforce
specifically trained to care for the complex health needs of older
Americans with the most effective and efficient methods, providing
higher quality care and saving valuable resources by reducing
unnecessary costs. As you are aware, the number of Americans ages 65
and older will double from 46 million today to over 98 million by 2060,
creating an imperative for policymakers to enhance the education of
health professionals to improve care of older persons and, thus
decrease costs of care.
Proven results from activities under the GWEP and its predecessor
programs include an important increase in the number of teaching
faculty with geriatrics expertise in a variety of disciplines, plus
thousands of healthcare providers and family caregivers better prepared
to support older Americans with complex chronic conditions. Therefore,
NAGE requests a total of at least $51 million for these programs, which
are critical to cost-effective care for the rapidly expanding elderly
population. In 2015, HRSA provided funding for 44 GWEPs in 29 States
which have worked with 365 health delivery sites. Our funding request
would allow for approximately eight additional GWEPs in rural and
underserved communities. In this request, we propose to reestablish
competitive grants for the Geriatrics Academic Career Award (GACA) by
providing $100,000 to each GWEP or other institutions to create a GACA.
GWEPs were funded at $40.7 million in fiscal year 2018. We recognize
that the Subcommittee faces complex decisions in a constrained budget
environment, but we believe a top priority should be a commitment to
geriatric education programs that help the nation's health workforce
better serve the rapidly increasing number of older persons.
The Nation faces a shortage of geriatrics health professionals and
direct service workers. There are not enough geriatricians, advanced
practice nurses, and other health professionals with the knowledge,
skills, and training in geriatrics to meet the needs of our rapidly
growing population of older adults and to support their family
caregivers. Too often, the result is expensive walk-in care and
inappropriate return to hospital within thirty days of discharge. We
believe that funding for GWEP-based geriatric education supports your
important work to establish a sustainable future for the nation's
healthcare and Social Security systems by ensuring that (a) healthcare
specialists trained in geriatric care do not become an expensive
resource from which only a select few are able to benefit and (b)
direct service workers and family caregivers are prepared to support a
lower cost, independent lifestyle for community residing elders.
In recent years, GWEPs have continued the impressive work of the
Geriatric Education Centers. Approximately half of the GWEPs provide
education for areas that are more than 50 percent rural. In the 2015-
2017 academic year, GWEPs provided gerontological education to well
over 100,000 healthcare professionals and students. Saint Louis
University and other GWEPs are partnering with federally Qualified
Health Centers to provide geriatric primary care education and didactic
training. GWEPs create opportunities for healthcare providers in
underserved and remote areas of the country to consult with top experts
in geriatric care through Interactive Televideo (ITV), interactive
teleconsults, and synchronous webcasts, and make available thousands of
hours of online geriatric education programs.
The Gateway Geriatric Education Center at Saint Louis University
has provided education to 25,611 health professionals and 5,904 members
of the public since 2016. These health professionals have provided
screenings for geriatric problems such as frailty, sarcopenia (muscle
weakness), falls, and dementia to 9,280 older adults in all six
Congressional districts in Missouri. More than 80 percent of this
trainings and evaluation of older persons were in primary care settings
and medically underserved communities. Developed specifically for the
GWEP, the Rapid Geriatric Assessment has been computerized in multiple
health systems, including Perry County Memorial Hospital in Perryville,
Missouri, a critical access hospital in rural Perry County, and
CARESTLHealth, a federally Qualified Health Center in north St. Louis
city, Missouri. In Perry County, over 25 percent of the older adults in
the county have been screened using this assessment process. Our
screenings thus far, have identified 25.4 percent with dementia and
31.9 percent with falls. Early intervention for these conditions can
decrease medical costs. Upon identifying concerns in any of the
assessment areas, older patients are referred for other GWEP-initiated
services, to include: Cognitive Stimulation Therapy--a non-
pharmacologic intervention for persons with dementia or Exercise and
Strengthening programming. In addition, our GWEP has provided education
through in-person and on-line continuing education, through daily
tweets on Twitter (@meddocslu)--828, to date--and with 102 postings to
LinkedIn and Facebook. Our GWEP also co-produced a regional prime time
television program on aging which was viewed by 340,739 persons. The
YouTube site has had 103,200 views.
Highlights from other GWEPS include:

--The Dartmouth GWEP is disseminating education across the Nation in
the highly successful Geriatric Interdisciplinary Team Training
program.
--The South Central Foundation GWEP is providing support for
improving home-based care for the native community throughout
the State Alaska.
--In rural eastern North Carolina, the East Carolina University GWEP
is disseminating training on caring for older members of the
farming, fishing, and lumber industries.
These are some of the highlights of the contributions made by only
four GWEPs. Obviously, the GWEPs are playing a major role in improving
healthcare for all in the aging tsunami in the United States. Multiply
this by 44 (the number of existing GWEPs) and you can begin to
visualize the scope and impact of this program across the nation. It is
important to note that every GWEP is focused on meeting the needs of
rural and/or underserved populations; many serve predominantly people
of color and those who are economically challenged.
GWEP awardees have received expanded authorization to provide
family caregivers and direct service workers with instruction on
prominent issues in the care of older adults, such as Alzheimer's
Disease and other dementias, palliative care, self-care, chronic
disease self-management, falls, and maintaining independence, among
others. In Missouri, we have developed Cognitive Stimulation Therapy
(CST) aimed at enhancing functioning in persons with moderate
Alzheimer's disease. We have trained over 1200 persons to deliver this
intervention and this has led to over 500 persons with dementia
participating in this effective intervention which our research has
shown to improve cognition. Our GWEP has recently been designated by
the founders of CST as the North American CST Training Center.
HRSA estimates that 52,352 paid and family caregivers will
participate in GWEP training programs over the current grant period.
For example, the GWEP at Saint Louis University is partnering with
several Area Agencies on Aging, the local Alzheimer's Association, a
rural hospital, a rural osteopathic school, the regional Area Health
Education Centers, and dementia-focused community care agencies to
train staff and family caregivers in assessing and supporting them
through the caregiving process. The 2016 National Academies of
Sciences, Engineering, and Medicine (NASEM) report Families Caring for
an Aging America acknowledged that training must go beyond the
healthcare professions and support family caregivers. This will improve
the quality of health outcomes while saving valuable resources in the
healthcare system.
In summary, GWEPs have improved the supply, distribution,
diversity, capabilities, and quality of healthcare professionals who
care for our nation's growing older adult population, including the
underserved and minorities. They train physicians, nurses, social
workers, dentists, mental health professionals, pharmacists, and
caregivers. In some States, the GWEP is offering training to first
responders to keep elders safe in their communities. Some of the
professionals trained through GWEPs will become academicians in
geriatric medicine, dentistry, psychiatry, nursing, and allied health
professions, thereby giving additional cohorts of professionals the
skills they need to properly serve older Americans. Furthermore, GWEPs
create and deliver community-based programs that provide patients,
families, and caregivers with the skills to care for older adults and
improve health outcomes, including Alzheimer's disease education. The
GWEPs are serving as change agents and helping to transform a
fragmented and outmoded system.
We ask for your continued support for geriatric programs to
adequately prepare the next generation of health professionals and care
providers for the rapidly changing and emerging needs of the growing
and aging population.
On behalf of NAGE and those who have benefitted in Missouri and
from our colleagues around the country, thank you for your thoughtful
consideration of our request for funding for GWEPs and GACAs in fiscal
year 2019. NAGE is a non-profit membership organization representing
GWEPs, Geriatric Education Centers, Centers on Aging, and other
programs that provide education and training to healthcare
professionals and others in geriatrics and gerontology.

[This statement was submitted by John E. Morley, MB, BCh, Dammert
Professor of Gerontology, Chair, Division of Geriatric Medicine, Dept.
Internal Medicine, Saint Louis University School of Medicine, Co-
Project Director, Gateway Geriatric Workforce Enhancement Program and
Marla Berg-Weger, PhD., LCSW, Professor, School of Social Work, Saint
Louis University, Executive Director, Gateway Geriatric
Education Center; Co-Project Director, Gateway Geriatric Workforce
Enhancement Program.]
______

Prepared Statement of the National Alliance for Eye and Vision Research
executive summary
NAEVR (National Alliance for Eye and Vision Research), on behalf of
the vision community, thanks Congress for the $2 billion NIH funding
increases in fiscal year 2016 and fiscal year 2017 and the $3 billion
increase in fiscal year 2018. Congress is helping NIH (National
Institutes of Health) to regain lost ground after years of effectively
flat budgets that did not keep up with biomedical inflation, thereby
reducing purchasing power. With the fiscal year 2018 increase, Congress
continued to make progress in reversing those losses by providing a
substantial increase to all NIH Institutes and Centers (I/Cs), in
addition to dedicated funding through the 21st Century Cures Act and
other funding devoted to specific programs.
In fiscal year 2019, NAEVR recommends at least $39.3 billion for
the NIH, including funds provided through the 21st Century Cures Act
for targeted initiatives. This funding level would continue the
momentum of recent years by enabling meaningful base budget growth
above inflation to expand NIH's capacity to support promising science
in all disciplines, and would also ensure that the Innovation Account
supplements NIH's base budget, as intended by Congress.
NAEVR also recommends at least $800 million in fiscal year 2019 NEI
(National Eye Institute) funding. In 2018, NEI celebrates the 50th
anniversary of its creation by Congress as the lead Institute for our
Nation's sight-saving and vision-restoring research. Congress must
ensure robust NEI funding to address the challenges of The Decade of
Vision 2010-2020--as recognized by Congress in S. Res. 209 in 2009--
including an aging population, disproportionate risk/incidence of eye
disease in fast-growing minority populations, and the impact on vision
of numerous chronic diseases.
Despite NIH increases, NEI's fiscal year 2018 enacted funding of
$772.3 million is just 10 percent greater than the pre-sequester fiscal
year 2012 funding of $702 million. Averaged over 6 fiscal years, the
1.6 percent annual growth rate is less than the average annual
biomedical inflation rate of 2.8 percent, thereby eroding purchasing
power. In terms of Research Project Grants (RPGs)--which at NEI are
primarily R01 Investigator-Initiated awards--in fiscal year 2017 NEI
had 130 fewer RPGs (1,157) than the 1,287 RPGs at the high-water mark
in fiscal year 2004. Since fiscal year 2004, the difference between
what NEI was able to fund and the cumulative number of projects it
would have funded if it had maintained 1,287 grants each year is 1,970
project-years (this number treats each year of a project individually,
even though average length of an NIH grant is 4 years). Any one of
these projects could have held the promise to save sight or restore
vision.
We must maintain the momentum of vision research since vision
health is vital to overall health and quality of life. Additionally,
since the United States is a world leader in vision research and in
training the next generation of vision scientists, the very health of
the global vision research community is at stake.
nei leads in genetic and regenerative medicine research
As recently as March 21, 2018, during the NEI's 50th Anniversary
Congressional Reception, NIH Director Francis Collins, MD, PHD stated
the following about the NEI:
``Due to the architecture, accessibility, and the elegance of the
eye, vision research has always been a few steps ahead in
biomedical research. Understanding the genetic basis of eye
diseases has led the way for understanding the genetic basis of
many common diseases.''
The NEI has been a leader in genetics/genomics research and
regenerative medicine.
--Genetics/Genomics: Vision researchers have found more than 50 gene
variants that cause a risk of developing age-related macular
degeneration (AMD). For glaucoma, more than 16 genes have been
identified. NEI support also made discoveries of dozens of rare
eye disease genes possible, including the discovery of RPE65,
which causes congenital blindness called Leber congenital
amaurosis (LCA). Just within the past year, NEI's initial
efforts have led to a commercialized Food and Drug
Administration (FDA)-approved gene therapy for this condition.
These gene-based discoveries are forming the basis of new
therapies that not only treat the disease, but may ultimately
prevent it.
--Regenerative Medicine: NEI is at the forefront of regenerative
medicine with its Audacious Goals Initiative (AGI), which was
launched in 2013 with the goal of restoring vision. Initially
asking a broad constituency of scientists within the vision
community and beyond to consider what could be done if
researchers employed this new era of biology, the AGI currently
funds major research consortia that are developing innovative
ways to image the visual system. Researchers can now look at
individual nerve cells in the eyes of patients in an
examination room and learn quite directly whether new
treatments are successful. Another consortium is identifying
biological factors that allow neurons to regenerate in the
retina. And the AGI is gathering considerable momentum with
current proposals to develop disease models that may result in
clinical trials for therapies within the next decade.
This year, NEI scientists on the NIH campus will launch the
first-ever clinical trial in the U.S. to test tissues derived
from induced pluripotent stem cells. Retina pigment
epithelium--tissue in the back of the eye that supports the
light-sensing cells in the retina--is being created in a lab
starting with patient blood cells. These tissues, when mature,
will be implanted in patients with AMD. The hope is that this
will be enough to save dying cells and vision.
the nation's investment in the nei results in new therapies to treat
major eye diseases
Speaking after Dr. Collins at the March 21 Reception, NEI Director
Paul Sieving, MD, PhD observed that:
``As we look back 50 years, we remember times when people had
untreatable eye diseases. These included AMD, diabetic
retinopathy, and glaucoma. These were blinding conditions, and
doctors had little more than hope to offer patients.''
The Federal commitment--made in 1968 when President Lyndon Johnson
signed legislation creating the NEI--has made possible treatments and
therapies for the very diseases that Dr. Sieving cited as previously
resulting in blindness or severe vision loss:
--AMD: The treatment of the ``wet'' form of AMD has made great
strides resulting from use of Anti-Vascular Endothelial Growth
Factor (VEGF) therapies--which emerged from initial NIH-funded
research--that stabilize vision loss and may improve lost
vision. The NEI has established an AMD Pathobiology Working
Group within its National Advisory Eye Council to evaluate
knowledge learned from its extensive AMD portfolio and identify
what is still uncertain, such as the relationship between genes
and biological pathways, therapies for the more-prevalent
``dry'' form of the disease, and how to diagnose and treat the
disease much earlier. The NEI has launched a prospective
international study of patients that uses the latest advances
in retinal imaging to identify biomarkers of the disease and
targets for early therapeutic interventions.
--Diabetic Retinopathy: Over the span of 50 years, NEI has funded a
number of randomized controlled trials (RCTs), which have led
to major vision health improvements. In the 1960s, about half
of patients with diabetic retinopathy were blind within 5 years
of diagnosis. NEI-sponsored clinical trials--starting in the
1970s with the Diabetic Retinopathy Study and most currently
with the Diabetic Retinopathy Clinical Research Network--have
reduced the incidence of severe vision loss from diabetic
retinopathy by 90 percent.
--Glaucoma: The FDA has approved two new drug therapies emerging from
decades of NEI research into the role of high intraocular
pressure (IOP) as a causal risk factor for primary open-angle
glaucoma (POAG), the most common form of the disease and a
leading cause of vision loss and blindness. Targeting the eye's
trabecular meshwork--which is one of the pathways responsible
for regulating fluid flow within the eye--the new generation of
therapies reflects an expanding menu of drugs that lower IOP
and better meet the needs of patients.
Critical to the diagnosis and monitoring of treatments for these
eye diseases is Optical Coherence Tomography (OCT), which is a non-
invasive, high-resolution imaging technology that displays a three-
dimensional cross-sectional view of the layers of the retina. Developed
over 25 years with $423 million in NIH and National Science Foundation
(NSF) funding, OCT has enabled better personalization of eye care to
facilitate more efficient use of effective but costly drug therapies. A
December 2017 American Journal of Ophthalmology article reported that
OCT saved Medicare $9 billion and patients $2.2 billion in co-pays by
reducing unnecessary injections. As the technology continues to be
applied to new medical conditions, such as Alzheimer's disease and
Parkinson's disease, it supports a private commercial market of $1
billion and more than 16,000 high-paying jobs. https://doi.org/10.1016/
j.ajo.2017.09.027.
congress must provide robust funding for the nei as it addresses the
increasing burden of vision impairment and eye disease
Despite recent NIH increases, NEI's fiscal year 2018 enacted
funding of $772.3 million is just 10 percent greater than the pre-
sequester fiscal year 2012 funding of $702 million. Averaged over the 6
fiscal years, the 1.6 percent annual growth rate is less than the
average annual biomedical inflation rate of 2.8 percent, thereby
eroding purchasing power. Robust NEI funding is necessary due to the
growing burden of eye disease:
--NEI's current $772.3 million budget is just 0.53 percent of the
$145 billion annual cost (inclusive of direct and indirect
costs) of vision impairment and eye disease, which was
projected in a 2014 Prevent Blindness study to grow to $317
billion--or $717 billion in inflation-adjusted dollars--by year
2050. http://forecasting.preventblindness.org/.
--Of the $717 billion annual cost of vision impairment by year 2050,
41 percent will be borne by the Federal Government as the Baby-
Boom generation ages into the Medicare program. A 2013 Prevent
Blindness study reported that direct medical costs associated
with vision disorders are the fifth highest --only less than
heart disease, cancers, emotional disorders, and pulmonary
conditions. The U.S. is spending only $2.30 per-person, per-
year for vision research, while the cost of treating low vision
and blindness is at least $6,680 per-person, per-year. http://
costofvision.preventblindness.org/.
--In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
reported that the number of people with legal blindness will
increase by 21 percent each decade to 2 million by 2050, while
best-corrected visual impairment will grow by 25 percent each
decade, doubling to 6.95 million people--with the greatest
burden affecting those 80 years or older. http://
jamanetwork.com/journals/jamaophthalmology/article-abstract/
2523780?resultClick=1.
--In an August 2016 JAMA Ophthalmology article, the Alliance for Eye
and Vision Research (AEVR, NAEVR's educational foundation)
reported that a majority of Americans across all racial and
ethnic lines describe losing vision as having the greatest
impact on their day-to-day life. Other studies have reported
that patients with diabetes who are experiencing vision loss or
going blind would be willing to trade years of remaining life
to regain perfect vision, since they are concerned about their
quality of life. http://jamanetwork.com/journals/
jamaophthalmology/article-abstract/2540516?resultClick=1.
Our Nation's investment in vision health is an investment in its
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. 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.
Without adequate funding, however, the NEI may not be able to fund
breakthrough research. Congress demonstrated strong support for vision
research with the creation of the NEI and recognition of its past
accomplishments and current/future challenges. NEI must be robustly
funded to continue U.S. leadership in vision research and training.
In summary, NAEVR requests fiscal year 2019 NIH funding of at least
$39.3 billion and NEI funding of at least $800 million.
NAEVR, which serves as the ``Friends of the NEI,'' is a 501(c)4
non-profit advocacy coalition comprised of 55 professional
(ophthalmology and optometry), patient and consumer, private funding
foundation, and industry organizations involved in eye and vision
research. Visit NAEVR's Web site at www.eyeresearch.org.

[This statement was submitted by James Jorkasky, Executive
Director, National Alliance for Eye and Vision Research.]
______

Prepared Statement of the National Alliance for Public Charter Schools
Mr. Chairman and Members of the Subcommittee, I am pleased to
present the views of the National Alliance for Public Charter Schools
on the fiscal year 2019 budget for the U.S. Department of Education and
specifically on the appropriation for the Charter Schools Program
(CSP). The CSP plays a crucial role in expanding options for families
and more are needed to meet growing demand across the country for high
quality schools.
Let me take this opportunity to thank the Subcommittee for
increasing the CSP appropriation from $342 million in fiscal year 2017
to $400 million in fiscal year 2018. This action will support the
creation of hundreds of additional charter schools serving thousands of
students and will provide sorely needed assistance to improve charter
school facilities. The National Alliance and the entire public charter
school community are grateful that the Congress responded to the
successes of charter schools, the growing unmet demand of families for
spaces in high-performing charter schools and our continuing facilities
challenges by providing a 17 percent increase in CSP funding. For
fiscal year 2019, the National Alliance requests $500 million for the
CSP, $150 million for replication and expansion of high-performing
charter schools. For the reasons that I will lay out in my testimony,
we believe that the proposed $100 million increase is necessary; given
the high demand of families for high quality charter schools, as well
as the needs of the charter school sector. We urge the Congress to make
that investment.
the growth of public charter schools
Since beginning with only a handful of schools in the early 1990s,
the charter school sector has grown to encompass more than 7,000
schools in 43 States and the District of Columbia serving more than 3
million pre-k to 12 students today. Between the fall of 2016 and the
fall of 2017, more than 300 new charter schools opened across the
country, and total enrollment grew by more than 150,000 students.
Charter schools now educate 6 percent of K-12 students nationally; 56
percent of which are in urban areas, 26 percent in suburban areas, 7
percent in towns, and 11 percent in rural areas. Charter schools offer
a wide range of programs and curricula, and, in particular, provide new
options to students and families who otherwise might be trapped in
lower-performing schools. In a growing number of school districts,
charter schools account for a significant percentage of total
enrollment; in the 2016-2017 school year, charter schools enrolled at
least 10 percent in 208 districts and at least 30 percent in 19
districts. Charter schools are also more likely than other public
schools to enroll students of color, as well as students from low-
income families.
CSP funding has been invaluable to the growth of high quality
charter schools in every area of the country. It has spurred the
development and initial operations of new charter schools and the
replication and expansion of successful ones. The Federal role in
supporting the development and growth of high-quality charter schools
has been indispensable. According to the latest data available, the CSP
provided start-up, replication or expansion funds to 60 percent of all
charter schools opened between SY 2006-06 and SY 2013-14.
charter school performance
Over its 26-year history, the charter school movement has been a
leader in innovation, school choice, and education reform. Our schools
have led efforts to eliminate achievement gaps, boost graduation rates,
and revitalize communities. There is compelling evidence that charter
schools are effective. Specifically, a 2015 study by the Center for
Research in Education Outcomes (CREDO) at Stanford University, covering
41 urban communities in 22 States, found that:
--Students in urban charter schools gained 40 additional days of
learning in math and 28 additional days in reading per year,
compared to their peers in non-charter public schools.
--Four or more years of enrollment in an urban charter school
resulted in 108 days of additional learning in math and 72
additional days in reading, again compared to traditional
public schools.
--In urban charter schools, low-income Hispanic students gained 48
additional days of learning per year in math and 25 additional
days in reading, while low-income Black students gained 59
additional days in math and 44 days in reading. Moreover,
Hispanic students who were identified as English learners
gained 79 additional days in math and 72 in reading.
Other studies, typically looking at a more limited number of
schools and students, have also reported very positive findings.
the continuing unmet demand for spaces in charter schools
While individual families may be unaware of the academic research
on charter school quality, many want their children to attend a charter
school. In fact, new surveys indicate that an estimated 4.8 to 5.3
million additional students would attend a charter school if space
where available in a convenient location. That means millions of
American families are now settling for schools that are less than what
they want for their children. And far too many of these students are
stuck in schools so dreadful that members of this subcommittee would
not accept them as adequate for their own children or grandchildren.
To be clear, even an increase of $100 million in fiscal year 2019
would not satisfy this demand nor rescue every child trapped in a
failing school. But it would represent ``earnest money,'' an earnest
attempt by the Congress to better provide for the education of--and
thereby safeguard the future of--America's public school students.
charter school facilities needs
The limited availability and high cost of appropriate school
facilities continues to constrain the growth of our schools. Charter
schools often do not have access to the funding sources that support
the facilities needs of district public schools, such as municipal
bonds, local property tax revenues, and State school facilities
programs. Charter schools very often must meet their facilities needs
using funds that would otherwise support their academic programs. And
because facilities financing costs are in so many communities even
compromising academic programs it is not enough to afford appropriate
space. This results in some charter schools having suboptimal
facilities that do not include common and important amenities like
kitchens, gymnasiums, libraries, and science labs; in addition to
academic programing that is not as robust as it should or would be
without the drag of high facilities costs. It's the worst of both
worlds. It's a situation that requires urgent and immediate attention.
The National Alliance is advocating for a comprehensive national
strategy for solving the facilities needs, including enactment of more
State laws ensuring charter schools' access to adequate facilities and,
at the Federal level, creation of tax incentives and other mechanisms
that make it easier for charter schools to access facilities funding.
In the meantime, the limited facilities funding provided through the
CSP--specifically, through the Credit Enhancement program and the State
Facilities Incentive Grants program--is extremely important.
Commendably, the Congress increased funding for the facilities programs
to $50 million in fiscal year 2018. We urge the Subcommittee to provide
an additional increase in 2019.
conclusion
The National Alliance for Public Charter Schools takes pride in the
accomplishments of public charter schools over the past quarter
century. More and more families now see charter schools as the best
option for their children, and more and more States and local school
districts recognize that charter schools are a vital element of the
public educational landscape. While there is, of course, great
variation in educational achievement and other outcomes across our
schools (just as there is among district schools in general), we now
have data demonstrating the success of charter schools in urban
settings and elsewhere. Yet the charter school movement still faces
major challenges, in meeting the demands for seats in our schools and
ensuring that all charter schools have appropriate facilities. We
therefore urge Congress to provide a $500 million appropriation for the
CSP for fiscal year 2019.

[This statement was submitted by Nina Rees, President and CEO,
National
Alliance for Public Charter Schools.]
______

Prepared Statement of the National Alliance on Mental Illness
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, on behalf of NAMI, the National Alliance on Mental
Illness, I am pleased to offer our views on the Subcommittee's fiscal
year 2019 bill. NAMI is the Nation's largest grassroots mental health
organization dedicated to building better lives for the millions of
Americans affected by mental illness. NAMI advocates for access to
better treatments, supports, and medical research and innovation.
mental health in the u.s.
Approximately 1 in 5 Americans live with a mental health
condition--more than 43 million people.\1\ Beyond the statistics,
individuals who live with a mental health conditions are our neighbors,
family members, and our friends. They contribute to all sectors of the
U.S. economy--building small businesses, fighting our wars, growing our
food, and composing works of art. However, without proper treatment,
many Americans with mental health conditions are not able to reach
their full potential. This is why your renewed investment in innovative
research and first-class treatment is vital to keep America strong.
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\1\ Insel, T. (2015, May 15). National Institute of Mental Health.
Prevalence of Mental Illness. Retrieved April 26, 2018, from https://
www.nimh.nih.gov/health/statistics/mental-illness.shtml.
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high cost of mental illness in america
The social and economic costs associated with mental health
conditions is devastating. According to a 2016 study, mental illness
topped the list of the most costly conditions in the United States at
$201 billion in 2013, the year examined.\2\ While this financial cost
is an incredible burden on U.S. healthcare spending, I can attest to
the fact that the personal human cost of untreated mental illness to
individuals and families is much more devastating. At NAMI we hear from
countless individuals who share their own stories of a family member or
friend that wasn't able to reach their full potential because of a lack
of necessary, innovative treatment and proactive medical research for
mental illnesses. Some also carry the burden with them of someone lost
far too soon to suicide. In fact, each year 44,965 Americans die by
suicide, and it's currently the 10th leading cause of death in the
United States.\3\ As you can see, the work of this Subcommittee and
your commitment to adequate investment in mental health research,
treatments and supports is vitally important to save American lives.
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\2\ Roehrig, C. (2016, May 18). Mental Disorders Top the List of
the Most Costly Conditions in the United States: $201 Billion. Health
Affairs. Retrieved April 26, 2018, from https://
static1.squarespace.com/static/55f9afdfe4b0f520d4e4ff43/t/
574748a007eaa0c831d7d1da/1464289441778/Health Aff-2016-Roehrig-
hlthaff.2015.1659.pdf.
\3\ American Foundation for Suicide Prevention. (2016). Suicide
Statistics. Retrieved April 26, 2018, from https://afsp.org/about-
suicide/suicide-statistics/.
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fiscal year 2018 omnibus appropriations bill
NAMI would like to thank the Chairman, Ranking Member, and the
Subcommittee for the bipartisan effort on the fiscal year 2019 Omnibus
bill, and the critical investments that were made for mental health
research and treatment. We are especially grateful for the $109.8
million increase for the National Institute of Mental Health (NIMH) and
the $140 million increase for the BRAIN Initiative, including the $43
million allocation for the NIMH. NAMI is also very appreciative of the
$160 million increase for the Mental Health Block Grant program and the
additional $100 for the ongoing Certified Community Behavioral Health
Center (CCBHC) program, a model that is improving quality of care and
outcomes for people with serious mental illness.
national institute of mental health research funding
As a member of the Ad-Hoc Group for Medical Research, NAMI endorses
the goal of at least $39.3 billion for the National Institutes of
Health (NIH), including funds provided to the agency through the 21st
Century Cures Act for targeted initiatives. This represents a $2
billion increase in base funding for the agency, in addition to the
$215 million increase scheduled through the 21st Century Cures Act
Innovation Account, for a $2.215 billion total increase.
supporting the national institute of mental health strategic plan
NAMI supports the current 5-year NIMH (National Institute of Mental
Health) Strategic Plan and its four overarching goals:
--Leveraging progress in genomics, imaging, and cognitive science to
define the biology of complex behaviors;
--Building on the concept of mental disorders as neurodevelopmental
disorders to chart trajectories and determine optimal times for
interventions;
--Using discoveries to focus on new treatments, and eventual cures,
based on precision medicine and moving trials into community
settings; and
--Increasing the public health impact of NIMH research through
improved services that improve access and quality of care.
advancing services and intervention research
Approximately 100,000 young Americans experience a first episode of
psychosis (FEP) each year. Intervening early is critical to altering
the downward trajectory associated with psychosis. Accordingly, NAMI
prioritized support for the NIMH Recovery After an Initial
Schizophrenia Episode (RAISE) Project, which resulted in Coordinated
Specialty Care (CSC) programs that are helping people with
schizophrenia experience recovery. We urge further investment into
maintaining CSC's positive treatment and quality-of-life outcomes over
the long-term--as well as expanding research into similarly effective
interventions with young people struggling with other mental health
conditions, such as bipolar disorder and major depressive disorder.
investing in early psychosis prediction and prevention (ep3)
Our organization also supports NIMH's Early Psychosis Prediction
and Prevention (EP3) initiative, which shows promise in detecting risk
States for psychotic disorders and reducing the duration of untreated
psychosis in adolescents that have experienced a first episode of
psychosis. This important research into early identification and
prevention of psychosis is potentially transformative and a high
priority for NAMI.
advancing precision medicine
We support NIMH efforts to translate basic research findings on
brain function into more person-centered and multifaceted diagnoses and
treatments for mental health conditions. The Research Domain Criteria
(RDoC) is showing promise toward efforts to build a classification
system based upon underlying biological and behavioral mechanisms,
rather than on symptoms. Through continued development, we believe RDoC
should begin to give us the precision currently lacking with
traditional diagnostic approaches to mental health conditions.
funding for samhsa programs
NAMI supports programs at the Center for Mental Health Services
(CMHS) at SAMHSA that are focused on replication and expansion of
effective, evidence-based interventions to serve children and adults
living with mental health conditions. We are extremely grateful for the
Subcommittee's recent investment of $160 million to the Mental Health
Block Grant (MHBG)--a crucial program, boosting total funding to $722.6
million.
Additionally, NAMI strongly supports to 10 percent set-aside in the
MHBG for evidence-based programs that address the needs of individuals
with early serious mental illness, including psychotic disorders,
regardless of the age of the individual at onset--a requirement that
was codified in the 21st Century Cures Act. As noted above, the NIMH
RAISE study validated the most effective approaches for providing
coordinated care for adolescents experiencing FEP. Among these is
Coordinated Specialty Care (CSC), a collaborative, recovery-oriented
approach that emulates the assertive community treatment approach,
combining evidence-based services into an effective, coordinated
package. CSC emphasizes shared decisionmaking, which NAMI strongly
supports, with the recipient of services taking an active role in
determining treatment preferences and recovery goals.
NAMI also supports the following funding priorities as outlined in
the fiscal year 2019 PB Request for CMHS:
--Children's Mental Health Services at $119 million, an increase over
fiscal year 2018 Omnibus;
--Healthy Transitions, which helps young adults ages 16-25 with
serious mental illness access treatment and gain employment and
permanent housing, at $20 million;
--Suicide Prevention Programs, including the Garrett Lee Smith
Memorial Act at $41.9 million and the Zero Suicide model
program, a comprehensive, multi-setting approach to suicide
prevention in health system at $11 million;
--Criminal and Juvenile Justice Programs, which support treatment
courts and community behavioral health services as an
alternative to incarceration, at $14.3 million;
--Continuation of the Assisted Outpatient Treatment (AOT) pilot
program at $15 million;
--Assertive Community Treatment for individuals with serious mental
illness at $15 million; and
--Mental Health System Transformation and Health Reform, which is
focused on supported employment programs for adults and youth
with serious mental illness, at $3.8 million.
Another important program NAMI supports is the Project Aware
program. NAMI is concerned with the proposed elimination of this
program in the fiscal year 2019 PB Request. We strongly support the
Subcommittee continuing to fund this vital program which supports
several strategies for addressing mental health in schools. We are
troubled by the proposed elimination of the Primary and Behavioral
Health Care Integration (PBHCI) program which supports collaboration
and infrastructure that increases primary healthcare and wellness
services for children and adults with serious mental health conditions
and co-occurring mental health and substance use conditions.
Continuation of this program is needed to support better care and
health outcomes for people with mental illness, who are dying at least
10 years earlier than their peers, largely from treatable health
conditions, like diabetes and heart disease. NAMI strongly encourages
restoration of funding at $51.5 million for this crucial program.
Additionally, NAMI encourages the Subcommittee to appropriate the
$12.5 million authorized in the 21st Century Cures Act for Crisis
Services and Online Bed Registry Databases.
health resources and services administration
We encourage the Subcommittee to fund Mental and Behavioral Health
at $36.9 million, Behavioral Health Workforce at $75.0 million, and
Increasing Access to Pediatric Mental Health Care at $10.0 million--all
level to fiscal year 2018 Omnibus funding. These programs to crucial to
supporting development of the mental health workforce.
homeless individuals living with serious mental illness
NAMI recommends $64.6 million for Projects for Assistance in
Transition from Homelessness (PATH) in fiscal year 2019, which is
consistent with the PB Request. PATH provides funding for outreach to
homeless individuals with serious mental illness and helps them
navigate systems in order to obtain the housing and treatment services
they need.
Finally, NAMI supports the request of $33.4 million for SAMHSA's
Treatment Systems for Homeless portfolio which supports services for
those with alcohol/other drug addiction and who are experiencing
homelessness, including veterans, and those experiencing chronic
homelessness.
conclusion
On behalf of NAMI, I would like to express our sincere gratitude to
the Chairman, Ranking Member and entire Subcommittee for their
investment in the necessary research, treatments, services and supports
for Americans living with mental health conditions.

[This statement was submitted by Mary Giliberti, J.D., Chief
Executive Officer, National Alliance on Mental Illness.]
______

Prepared Statement of the National Association of
Clinical Nurse Specialists
The National Association of Clinical Nurse Specialists (NACNS) is
the voice of more than 72,000 clinical nurse specialists (CNSs). CNSs
are licensed advanced practice registered nurses (APRN) who have
graduate preparation (master's or doctorate) in nursing as a clinical
nurse specialist. They have unique and advanced level competencies that
meet the increased needs of improving quality and reducing costs in
today's healthcare system. CNSs provide direct patient care, including
assessment, diagnosis, and management of patient healthcare issues.
They are leaders of change in health organizations, developers of
scientific evidence-based programs to prevent avoidable complications,
and coaches of those with chronic diseases to prevent hospital
readmissions. CNSs are facilitators of multidisciplinary teams in acute
and chronic care facilities to improve the quality and safety of care,
including preventing hospital acquired infections, reducing length of
stays, and preventing hospital readmissions.
The NACNS urges the subcommittee to fund the Title VIII Nursing
Workforce Development Programs at $266 million in fiscal year 2019.
According to the Bureau of Labor Statistics (BLS), the registered
nurse (RN) workforce will grow 15 percent from 2016 to 2026, outpacing
the 7 percent average for all occupations in the U.S. economy. BLS also
projects that this growth will result in 438,100 job openings,
representing one of the largest numeric increases for occupations.
Overall, job opportunities for nurses are expected to increase because
of employment growth and the need to replace those who retire over the
coming decade.
In addition, employment of APRNs is projected to grow 31 percent
from 2016 to 2026, much faster than the average for all occupations.
Growth will occur because of an increase in the demand for healthcare
services, particularly in medically underserved areas such as rural
areas and inner cities. According to the BLS, ``[s]everal factors will
contribute to this demand, including the fact that APRNs can perform
many of the same services as physicians . . . [and] APRNs are becoming
more widely recognized by the public as a source for primary
healthcare.'' The Bureau also notes that as States change their laws to
correct the current governing barriers to practice, APRNs' ability to
practice to the full extent of their education, training, and
certification, will be attained.
APRNs increasingly will be used in team-based models of care where
they will provide preventive and primary care. APRNs also will be
leading the care for the large, aging baby-boom population, which
likely will experience ailments and complex conditions. Their advanced
practice nursing care expertise will be tapped to keep these patients
healthy and to treat those who have chronic and acute conditions.
BLS states that the healthcare sector is a critically important
industrial complex for the Nation. It is key to economic recovery and
development with the number of jobs climbing steadily, and projected to
add more jobs than any of the other occupational groups. BLS estimates
that healthcare occupations will grow 18 percent from 2016 to 2026,
much faster than the average for all occupations, adding about 2.4
million new jobs. Over three million workers are in hospital settings,
which often are the largest employer in a State. Even through the Great
Recession, healthcare has been a stimulus program generating employment
and income, and nursing is the predominant occupation in the healthcare
industry with more than 4.6 million active, licensed RNs in the United
States in April 2018.
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. NACNS 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. NACNS contends that it is critically important that Title
VIII programs continue to have individual line items that include:
--Advanced Nursing Education (Sec. 811), which contains the Advanced
Education Nursing Traineeships and Nurse Anesthetist
Traineeships
--Nursing Workforce Diversity (Sec. 821)
--Nurse Education, Practice, Quality, and Retention (Sec. 831)
--NURSE Corps Loan Repayment and Scholarship Programs (Sec. 846)
--Nurse Faculty Loan Program (Sec. 846A)
--Comprehensive Geriatric Education (Sec. 855)
The current Federal funding falls short of the healthcare
inequities facing our Nation today. Absent consistent support, boosts
to Title VIII will not fulfill the expectation of generating quality
health outcomes, nor will episodic increases in funding fill the gap
generated by a nurse faculty shortage felt throughout the U.S. health
system.
NACNS believes that health inequities, inflated costs, and poor
quality of healthcare outcomes in regions of this country will not be
reversed until concurrent shortages of RNs, APRNs, and qualified nurse
educators are addressed. Your support will help ensure that future
nurses exist 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 the Nation
today, it will be difficult to avoid the adverse effects on the health
of our Nation from the inability of our under resourced nursing
education programs to produce sufficient numbers of high quality RNs
and APRNs.
In closing, NACNS urges the subcommittee to maintain the Title VIII
Nursing Workforce Development Programs by funding them at a level of
$266 million in fiscal year 2019.

[This statement was submitted by Anne Hysong, MSN, APRN, CCNS,
ACNS-BC, President, National Association of Clinical Nurse
Specialists.]
______

Prepared Statement of the National Association of
County and City Health Officials
The National Association of County and City Health Officials
(NACCHO) is the voice of the nearly 3,000 local health departments
across the country dedicated to keeping our communities healthy and
safe by preventing addiction and disease, preparing for public health
emergencies, and ensuring the food we eat, the water we drink and the
air we breathe is free of harm. Local health departments depend on the
support of the Department of Health and Human Services--most notably--
the Centers for Disease Control and Prevention and the Office of the
Assistant Secretary for Preparedness and Response to do this work. On
behalf of local health departments, NACCHO requests funding at the
Centers for Disease Control and Prevention (CDC) and Office of the
Assistant Secretary for Preparedness and Response (ASPR) for the
following programs:
centers for disease control and prevention
As the Nation's--and the world's--expert resource and response
center, the CDC provides critical funding and technical assistance for
State, local, and national programs to strengthen public health
capacity, share critical information, and improve health to save
millions of lives annually. NACCHO requests $8.445 billion in fiscal
year 2019 for the CDC. As part of the CDC request, NACCHO seeks the
continuation of the near $1 billion Prevention and Public Health Fund
(PPHF). This year, the PPHF accounted for nearly 12 percent of CDC's
budget and continues to serve as a lifeline for core public health
programs at the agency that have demonstrated positive health impacts
across the country.
Public Health Emergency Preparedness Program
NACCHO appreciates the increased funding for emergency preparedness
provided in fiscal year 2018 and urges the Subcommittee to provide $824
million for the Public Health Emergency Preparedness (PHEP) Cooperative
Agreements in fiscal year 2019. Without the support that PHEP provides,
local health departments--55 percent of whom rely solely on Federal
funding for emergency preparedness--would be without the critical
resources necessary to effectively prepare for and respond to public
health emergencies such as terrorist threats, infectious disease
outbreaks, natural disasters, and biological, chemical, nuclear, and
cyber emergencies. Unmitigated natural disasters and emergencies place
an incredible amount of stress on Federal, State and local resources.
In 2017, Congress spent a record breaking $80 billion to provide relief
from Hurricanes Harvey, Irma and Maria, and devastating wildfires in
California. A comprehensive, cost saving and proactive public health
approach to disaster preparedness helps communities to effectively
mitigate the damage and costs of disasters and recover in the
aftermath. Sustained funding to support local preparedness and response
capacity helps local health departments build and convene diverse
partners such as police, fire, transportation, planning departments,
and community-based organizations and develop and implement evidence-
based, community-centered strategies.
317 Immunization Program
NACCHO requests $650 million for the 317 Immunization Program in
fiscal year 2019. According to the CDC, childhood vaccines save over
10,000 lives and 5 million hospitalizations annually and account for an
estimated $10 in savings for every $1 invested. The 317 Immunization
program offers local health departments the ability to purchase cost
effective and lifesaving vaccinations, conduct widespread outreach
initiatives, provide immunization services to at-risk populations and
work with physicians to ensure the proper storage and handling of
vaccines. In light of recent vaccine-preventable infectious disease
outbreaks in parts of California, Michigan and Minnesota, the ability
of local health departments to prevent and control the spread of
infectious diseases through effective, safe and timely vaccination is
needed more now than ever. A strong and coordinated public health
immunization infrastructure at the Federal, State and local levels is
fundamental to preventing debilitating diseases such as measles, mumps,
whooping cough and the flu in both children and adults.
Public Health Workforce
In fiscal year 2019, NACCHO requests $57 million for Public Health
Workforce Development. These funds support CDC's fellowship and
training programs that fill critical gaps in the public health
workforce, provide on-the-job training, and provide continuing
education and training for the public health workforce. The Public
Health Associates program also places CDC-trained staff in the field
and strengthens local and state health department capacity and
capabilities. The Federal Government has a significant commitment to
support the training and development of the healthcare workforce. We
urge the Committee to make such a commitment to the public health
workforce.
Epidemiology and Laboratory Capacity
In fiscal year 2019, NACCHO requests at least $195 million in
ongoing funding through the Epidemiology and Laboratory Capacity (ELC)
Grant Program to address emerging infectious disease threats. The ELC
grant program is a single grant vehicle for multiple programmatic
initiatives that go to 50 State health departments, six large cities,
Puerto Rico, and the Republic of Palau. The ELC grants strengthen local
and State capacity to detect, track and respond to known infectious
disease threats and maintaining core capacity to detect new threats as
they emerge.
Core Infectious Diseases
In fiscal year 2019, NACCHO request $429 million for the Core
Infectious Disease (CID) Program. CID provides funding to 50 States and
six cities (Chicago, Houston, Los Angeles County, New York City,
Philadelphia, and Washington, D.C.) to identify and monitor the
occurrence of known infectious diseases, identify newly emerging
infectious diseases, and identify and respond to outbreaks. CID
includes funding to address Antibiotic Resistance (AR), Emerging
Infections, Healthcare-associated Infections, Infectious Disease
Laboratories, High-consequence Pathogens, and Vector-borne Diseases.
CDC's AR initiative is targeted at curbing the rate of infections
attributed to bacteria that are resistant to antibiotics, which kill
least 23,000 people each year.
NACCHO also urges additional funding to address vector-borne
diseases, such as Zika, Chikungunya, Dengue, and West Nile in response
to a NACCHO assessment that mosquito control capacity is sorely lacking
across the United States.
Opioid Prescription Drug Overdose Prevention
More than 42,000 Americans lost their lives due to an opioid
overdose in 2016, and so far the epidemic has cost the United States
over $80 billion. With rates of drug abuse and overdose continuing to
rise, it is imperative that we act quickly to and save lives and
precious resources and protect public health. NACCHO thanks the
committee for increasing funding to CDC for opioid related initiatives
by $350 million in fiscal year 2018. We urge the committee to build
upon that momentum and provide $500 million in funding for CDC in
fiscal year 2019 to bolster surveillance and allow communities to keep
building on evidence-based and experience-tested methods of prevention.
NACCHO has urged CDC to ensure that these funds reach local communities
in order to respond effectively to this epidemic. When local health
departments are given adequate resources, they rise to the occasion,
implementing effective prescription drug overdose prevention
interventions in the hardest hit communities, enhancing prescription
drug monitoring programs, implementing insurer and health system
interventions to improve prescribing practices, and collaborating with
partners including law enforcement, community-based organizations and
medical providers. For example, with adequate funding Seattle-King
County Public Health has worked with local law enforcement, providers,
and schools to increase awareness of the dangers of opioids and helped
ensure widespread access to Naloxone and other overdose reversal drugs
that have since saved hundreds of lives. Kansas City Health Department
has been able to use data and analytical tools to better surveil the
supply and use of opioids with the Subcommittee's support.
Preventive Health and Health Services Block Grant
NACCHO urges Congress to provide $760 million for the Preventive
Health and Health Services (PHHS) Block Grant in fiscal year 2018. The
PHHS Block Grant gives States the autonomy and flexibility to solve
State problems and support similar issues in local communities, while
still being held accountable for demonstrating local, State, and
national impact of their investments.
assistant secretary for preparedness and response
The ASPR (Assistant Secretary for Preparedness and Response) leads
the Nation's medical and public health preparedness for, response to,
and recovery from disasters and public health emergencies.
Hospital Preparedness Program
NACCHO thanks the Subcommittee for the $10 million increase in
fiscal year 2018 for the Hospital Preparedness Program (HPP) and
recommends an additional increase to $474 million in fiscal year 2019.
HPP funding helps enhance coordination between local public health and
the healthcare system to strengthen the ability of hospitals, medical
first responders and medical provider networks to prepare for and
respond in the case of an emergency. As the only source of Federal
funding that supports regional healthcare system preparedness, HPP
promotes a sustained national focus on improving patient outcomes,
minimizing the need for supplemental State and Federal resources during
emergencies, and enabling rapid recovery. HPP supports over 470
regional healthcare coalitions across the county, which are formal
collaborations among healthcare and public health organizations focused
on strengthening medical surge capacity and other healthcare
preparedness capabilities.
Medical Reserve Corps
In fiscal year 2019, NACCHO requests $11 million for the Medical
Reserve Corps (MRC), a program created in 2002 after the 9/11 terrorist
attacks to enable medical, public health, and other volunteers to
address local health and preparedness needs. The program includes
nearly 200,000 volunteers enrolled in almost 1,000 units across the
Nation. More than two-thirds of MRC units are operated by local health
departments. MRC volunteers are an important community asset, providing
key public health services such as immunizations, health education and
chronic disease screenings, in addition to quickly mobilizing
individuals and health systems before, during and after emergency
situations. Local health departments report that they most often engage
MRC volunteers in emergency preparedness activities, an increase from
49 percent in 2010 to 65 percent in 2016. In a 1 year period between
June 2015 and May 2016, MRC units logged more than 375,000 volunteer
hours. MRC volunteers have also provided critical support and expertise
in response to recent emergencies, including Hurricane Harvey and the
California wildfires.
Our hope is that the Subcommittee will continue its efforts to
provide funding for key public health programs that keep Americans
healthy, safe, and productive. Thank you for your attention to these
recommendations. NACCHO is happy to provide any additional information
you may need.
______

Prepared Statement of the National Association of
State Head Injury Administrators
Dear Chairman Blunt and Ranking Member Murray:
On behalf of the National Association of State Head Injury
Administrators (NASHIA), thank you for the opportunity to submit
testimony regarding the fiscal year 2019 appropriations for programs
authorized by the Traumatic Brain Injury (TBI) Act administered by the
U.S. Department of Health and Human Services' (HHS) Administration for
Community Living (ACL) and the Centers for Disease Control and
Prevention's National Center for Injury Prevention and Control, as well
as funding for the TBI Model Systems administered by the National
Institute on Disability, Independent Living, and Rehabilitation
Research (NIDILRR) housed in the ACL
NASHIA thanks the Committee for the additional $2 million for
fiscal year 2018 included in the omnibus spending bill passed in March
for the ACL TBI Federal Grant Program. These funds should be split
between grants for State Protection and Advocacy systems, known as
disability rights in some States; and the Federal TBI State
Implementation Grant program. The HHS' ACL Federal TBI State
Implementation Grant Program is the only program that assists States in
addressing the complex needs of individuals with TBI and their
families.
For fiscal year 2019 NASHIA is requesting: $11 million total for
HHS' ACL TBI State Implementation Grant Program, representing a $5
million increase for additional State grants to expand and improve
service delivery; and $5 million additional funding for CDC's National
Center for Injury Prevention and Control to establish and oversee a
national concussion surveillance system. Furthermore, NASHIA supports
funding for CDC's falls prevention program ($5 million) and the injury
control research centers ($9 million), both of which the President
proposed to eliminate in fiscal year 2019.
In addition, NASHIA recommends $15 million for the NIDILRR TBI
Model Systems to expand the number of centers and research projects.
NASHIA strongly opposes the President's budget recommendation to reduce
funding and move NIDILRR from the ACL to the National Institutes of
Health (NIH). NIDILRR was formerly located in the Department of
Education and, as the result of the Workforce Innovation and
Opportunity Act (WIOA) of 2014, was only recently transferred to the
ACL.
NASHIA is a nonprofit organization representing States
administering TBI services and is comprised of State Government
agencies and associate members consisting of professionals, consumers,
families, providers and others interested in TBI. Our mission is to
assist States in promoting partnerships and building systems to meet
the needs of individuals with TBI with the goal of all States having
resources to assist individuals with TBI to return to home, community,
work and school after sustaining a brain injury, as well as assistance
to family members who often serve as primary caregivers. The TBI Act
programs assist States to achieve this goal.
In 2013, 2.8 million Americans sought treatment for or died from a
TBI as the result of a car crash, fall, sporting or recreational
injury, an assault. The leading causes of non-fatal TBI are falls (35
percent), motor vehicle-related injuries (17 percent), and strikes or
blows to the head from or against an object (17 percent), such as in
sports injuries. The leading causes of TBI-related deaths are motor
vehicle crashes, suicides, and falls. The CDC estimates, based on data
from two States, that 3.2 million--5.3 million persons in the United
States are living with a TBI-related disability. Children aged 0--4
years, adolescents aged 15--19 years, and adults aged 75 years and
older are among the most likely to have a TBI-related emergency
department visit or to be hospitalized for a TBI. Adults aged 75 years
and older have the highest rates of TBI-related hospitalizations and
deaths among all age groups. Individuals who sustain a TBI often have
resulting problems with cognition, emotions, language, physical
mobility and sensory disabilities that can lead to lifelong problems.
TBI is a complex disability that challenges States' ability to
provide the right services at the right time. Often, several private
and public entities may be involved over the course of recovery
including, medical and rehabilitative facilities and programs,
including emergency departments, hospitals, trauma centers; post-acute
rehabilitation programs; education; vocational rehabilitation;
therapies to maintain physical and cognitive functioning; and community
services and supports to enable the individuals to live as
independently as possible. Payors for these type of services may
include private health insurance, Workers' Compensation, Medicaid,
private pay, and public assistance programs. Navigating this path to
recovery is often overwhelming for the individual and their families.
Many States have developed service coordination or case management
systems supported by Medicaid, State funding or dedicated funding from
fines or fees, referred to as trust fund programs to assist with the
coordination of rehabilitative care, services and supports..
About half of the States have enacted legislation to establish a
trust fund program specifically to fund TBI services; a few State
legislatures appropriate general revenue to fund services; about half
of the States have implemented brain injury Medicaid Home and
Community-Based Services (HCBS) waiver programs; and some States use a
combination of these funding sources to support the array of needs.
These services include post-acute rehabilitation; personal care;
service coordination or case management; assistance with activities of
daily living; in-home accommodations and modifications; transportation;
and therapies, including behavioral, cognitive, speech-language and
physical therapies. With limited State resources to address these
needs, many individuals, particularly those with behavioral issues,
addiction problems, and poor judgment, will find themselves homeless or
in correctional facilities.
Nineteen (19) States have just finished a 4-year Federal TBI State
Implementation Grant and, along with other States, are currently
awaiting the results of funding for new 3-year competitive grants to be
determined by the ACL. Over the past 4 years, State grantees have
identified and assisted high risk populations, which included youth and
adults with TBI in juvenile justice and criminal justice systems; older
adults with fall-related TBIs; and young children in pre-school
programs through screening, training, and linking individuals to
services. As States wind down these activities, the likelihood of
continuing this work is slim without continued support.
Since 2009, all 50 States and the District of Columbia have enacted
``return to play'' laws following the State of Washington, which was
the first State to do so, to address concussion management in youth
athletes. States are now beginning to address ``return to learn''
issues to identify the academic needs of students after a concussion,
regardless of cause. The requested $5 million for the CDC's National
Center for Injury Prevention and Control to establish and oversee a
national concussion surveillance system will greatly assist States as
they target their resources to better meet and understand the needs of
individuals who sustain a concussion.
Currently, there are 16 TBI Model Systems Centers which provide
comprehensive systems of specialty care from the point of injury
through return to the community. They participate in independent and
collaborative research projects developing and evaluating medical,
rehabilitation, vocational and other services designed to address the
physical, cognitive and psychological needs of individuals with TBI and
share their findings to healthcare professionals; individuals with TBI;
their families, caregivers and friends; and the general public. States
benefit from their research and tools to assist with screening,
training, and assessing program outcomes.
We are pleased that ACL is beginning to develop a Federal
Interagency Coordinating Plan, as called for by the TBI Reauthorization
of 2014, to align TBI resources with other Federal aging and disability
programs to help States maximize and to coordinate Federal resources as
States primarily incur the burden of TBI for individuals who need on-
going, intermittent, or short-term services and supports that are not
paid for through private healthcare insurance plans. The ACL resources
include Lifespan Respite Care, Aging and Disability Resource Centers,
Independent Living, NIDILRR, and Assistive Technology programs. Other
Federal resources include the National Institutes of Health (NIH); CDC;
Department of Veterans Affairs; Department of Defense; disability
benefits administered by the Social Security Administration; vocational
rehabilitation and educational services funded by the Department of
Education; children's programs (Title V) administered by HHS' Health
Resources and Services Administration (HRSA); Medicaid and Medicare
administered by the Centers for Medicare and Medicaid Services (CMS);
job training programs through the Department of Labor (DOL); housing
programs administered by the Department of Housing and Urban
Development (HUD), and transportation programs.
In closing, the TBI State Implementation Grant Program has helped
States to leverage other State and Federal funds and to bring partners
together in order to address the complex needs of individuals with TBI
and their families. To continue and expand resources we believe that
all States should have access to the Federal program to address this
growing and aging population. Therefore, we ask that you continue to
fund and increase appropriations for this important program, as well as
to establish the CDC national concussion surveillance system to improve
and expand data needed to plan for service delivery; and to increase
funding for NIDILRR TBI Model Systems to support research to address
this critical issue.
Should you wish additional information, please do not hesitate to
contact Rebeccah Wolfkiel, Executive Director, at
[email protected]. You may also contact Becky Corby, NASHIA
Government Relations at [email protected] or Susan L. Vaughn,
Director of Public Policy, at [email protected]. Thank you for
your continued support.

[This statement was submitted by Susan L. Vaughn, Director of
Public Policy.]
______

Prepared Statement of the National Association of Nutrition and
Aging Services Programs
Chairman Blunt, Ranking Member Murray: On behalf of the National
Association of Nutrition and Aging Services Programs (NANASP), an
1,100-member nonpartisan, nonprofit, membership organization for
national advocates for senior health and well-being, we thank you for
the opportunity to offer testimony in support of the Older Americans
Act Title III(C) senior nutrition program within the Administration for
Community Living (ACL) and for the Senior Community Service Employment
Program within the Department of Labor. We support funding the Title
III(C) nutrition program at $996.7 million for fiscal year 2019 and the
Senior Community Service Employment Program at $463.8 million, the
authorized level in the 2016 Older Americans Act Reauthorization, for
fiscal year 2019.
older americans act title iii(c) senior nutrition programs
Older Americans Act (OAA) congregate and home-delivered meals
programs are provided in every State and congressional district in this
Nation. Approximately 2.4 million seniors in 2014 received these
services.
First, thank you for your bipartisan leadership in the passage of
the fiscal year 2018 omnibus appropriation bill, and for the $59
million funding increase for the III(C) nutrition programs. We also
thank you for rejecting the President's call for the elimination of the
Social Services Block Grant (SSBG), which also funds home-delivered
meals, and funding it at $1.7 billion.
Thank you as well for other funding increases in the OAA, including
increases in the Supportive Services, Family Caregiver, and the Native
American Programs, all of which complement our efforts to serve
seniors. Further, we oppose all efforts of rescission of these
critically-needed resources and we urge the OMB not to delay obligating
funds intended for fiscal year 2018.
Unfortunately, these funding increases, though much needed, still
do not keep pace with the rising cost of food, inflation, and the
growing numbers of older adults. In fact, year over year, the number of
older adults receiving meals is shrinking even as the need is growing:
the OAA network overall is serving 19 million fewer meals to seniors in
need than it was in 2005. We know that 58 percent of participants have
indicated that one congregate meal provides one-half or more of their
total food for the day, and that a 2015 Government Accountability
Office report found that 83 percent of food-insecure seniors and 83
percent of physically-impaired seniors did not receive meals through
the OAA, but likely needed them. Additional funding for congregate and
home-delivered meals in fiscal year 2019 is critical to help to
counteract inflation and provide millions of additional meals when
combined with State and local funding.
Investing additional money in the OAA nutrition programs is
fiscally responsible. Access to OAA meals is essential to keeping these
older adults out of costly nursing facilities and hospitals. Data from
ACL's National Survey of OAA Participants indicates that 61 percent of
congregate and 92 percent of home-delivered meal recipients say that
the meals enable them to continue living in their homes. Further, on
average, a senior can be fed for a year for about $1,300, which is
approximately the same as the cost of one day's stay in a hospital or
less than the cost of 10 days in a nursing home. The cost savings to
Medicare and Medicaid that this creates cannot be over-emphasized.
The OAA nutrition programs provide jobs to thousands across the
country. The programs itself are also flexible, allowing local
communities to tailor their local programs to meet the needs of the
seniors they serve. These programs are the epitome of a public-private
partnership; local programs work in tandem with State and local
governments as well as private philanthropy to provide their services,
and the OAA nutrition programs participants contribute to the cost of
meals on a voluntary basis. In short, the OAA nutrition programs are
the model of successful government, and they have worked for over 45
years.
senior community service employment program
The Senior Community Service Employment Program (SCSEP), also known
as Community Service Employment for Older Americans, is authorized by
the Older Americans Act but administered and funded by the Department
of Labor. It is the only Federal program that directly helps older
workers.
SCSEP currently provides jobs for about 67,000 low-income older
adults in every State and territory, and in nearly every county in
every State. Many of these jobs are in the service of other older
adults--SCSEP participants may work as senior center staff members,
transportation providers, or home-delivered meals cooks and drivers.
SCSEP participants provided more than 34.8 million paid staff hours
to over 20,000 local public and nonprofit agencies, such as American
Job Centers, libraries, schools, and senior centers (including 7.6
million hours in aging services and programs) in PY2015. The value of
the community service provided by SCSEP participants (using Independent
Sector's estimated value of a volunteer hour) exceeded $820 million,
nearly twice the total SCSEP PY2015 appropriations of $434.4 million.
SCSEP received $400 million in fiscal year 2018, a repudiation of
the elimination of the program as supported by the President and level-
funding as compared to the previous year. However, this is not enough
to meet the growing need for SCSEP--both in participants and in wages.
Our request is based on the fiscal year 2019 authorization levels
of the 2016 OAA reauthorization--in fact, both of you voted in favor of
these levels. These levels were carefully negotiated in a bipartisan
manner between House and Senate Republicans and Democrats. They
consider the rapid growth of the older adult population and the rising
pace of inflation. They are sensible and fiscally responsible.
SCSEP is the only Federal program targeted to serve specifically
low-income older adults seeking employment and training assistance;
moreover, the Government Accountability Office has previously
identified SCSEP as one of only three Federal workforce programs with
no overlap or duplication.
The average age of a program participant is 62; according to the
Department of Labor, 65 percent of all SCSEP participants in Program
Year 2015 were women, 49 percent were minorities, and 88 percent were
at or below the Federal poverty level.
By providing subsidized employment opportunities for this highly
vulnerable and underemployed/unemployed segment of the population,
SCSEP helps participants build their resumes and receive the training
they need to transition into unsubsidized employment. These subsidized
employment opportunities also provide staff members for other community
programs that may lack funding for regular hires--not only senior
centers, but also public libraries, schools, hospitals, and other
community agencies.
Many States and localities are raising the minimum wage, and this
dilutes SCSEP funding, which must increase to match these increases.
This decreases the number of participants SCSEP can handle, yet the
older population is growing. The last time there was an increase in
funding for SCSEP, other than under the fiscal year 2009-fiscal year
2010 stimulus package, was when the Federal minimum wage was increased,
also in 2009. Though wages have not increased at the Federal level
since then, they have increased in enough States and localities to the
point that SCSEP is becoming very strained.
As a job-creator and an unduplicated, successful program, SCSEP
should receive top consideration for increased funding.
With more than 10,000 seniors turning 65 every day, now is the time
to provide an even greater investment in these proven and cost-
effective programs for older adults.
Thank you for your past and future support.

[This statement was submitted by Tony Sarmiento, Chair and Robert
Blancato, Executive Director, National Association of Nutrition and
Aging Services Programs.]
______

Prepared Statement of the National Association of RSVP Directors
We appreciate the opportunity to submit testimony about the funding
for the RSVP program in fiscal year 2019. RSVP is a senior volunteer
program administered by the Corporation for National and Community
Service (CNCS). The National Association of RSVP Directors (NARSVPD)
seeks an fiscal year 2019 funding level of $63 million. This additional
$14 million would grow the number of volunteers by 40,000 and allow
RSVP to tutor and mentor more students, help more seniors live
independent and productive lives, support more veterans and military
families, and help combat opioid abuse.
RSVP deploys 208,000 volunteers in 627 programs that support the
efforts of thousands of community organizations across the Nation. It
provides opportunities for people 55 and over to make a difference in
their communities through volunteer service. It offers maximum
flexibility and choice to its volunteers by matching the personal
interests and skills of volunteers with opportunities to help solve
community problems. It offers supplemental insurance while volunteers
are serving, pre-service orientation, and on-the-job training from the
agency or organization in which volunteers are placed. RSVP volunteers
get no stipend but are eligible for reimbursement for meals and
mileage, as long as program budgets allow for it.
RSVP programs identify community needs and continually recruit,
train, place, coach and mentor volunteers while they report to CNCS on
how programs are meeting their performance goals and other matters.
RSVP is not means tested and recruits volunteers without regard to
income. Most serve between 10 and 40 hours a week. Because RSVP is
flexible, volunteers provide a wide variety of needed services,
including transportation to medical services, offering respite to
caregivers, delivering health and nutrition services, supporting
veterans and military families, volunteering in parks, police stations
and other locations, participating in disaster prevention and relief
activities, helping prepare tax returns for elderly and low-income
people and leveraging an additional 18,000 volunteers, among many other
activities.
RSVP is cost-effective and an excellent investment:
--The average Federal RSVP grant is about $75,000--less than the
national annual median cost of a semi-private room in a nursing
home in 2017 of almost $86,000. In many States, it costs more
to put one senior in a nursing home for a year than it does to
support an RSVP program. Using Independent Sector's estimate of
the value of an hour of volunteer service, RSVP volunteers
provide more than $1 billion worth of service to the Nation
each year.
--RSVP grantees must provide a match. The required non-Federal share
is a minimum 10 percent of the total grant in year one, 20
percent in year two, and 30 percent in year three and all
subsequent years. CNCS projects that States and local
communities will have contributed $39 million in non-Federal
support in fiscal year 2017. In fiscal year 2015, RSVP
volunteers delivered an estimated 46 million hours of service.
Working through a wide variety of nonprofits, city and county
governments, local United Way organizations, and faith-based
organizations, RSVP volunteers served 329,000 veterans in
activities such as transportation and employment service
referrals; mentored more than 78,000 children; provided
independent living services to 797,000 adults, primarily frail
seniors; provided respite services to nearly 20,300 family or
informal caregivers; and engaged 20,100 veterans who served as
RSVP volunteers.
--RSVP is an important source of disaster prevention and relief. In
recent years, RSVP volunteers participated in recovery efforts
in Alabama, Missouri, Kentucky, South Carolina, Texas,
California, and New York.
--RSVP volunteers support students. The Oasis Jefferson County.
Missouri RSVP Program received a grant to build on its proven
model and expertise in engaging older adult volunteers by
recruiting and placing 75 volunteers to address educational
outcomes for economically disadvantaged and academically at-
risk children. In Jefferson County, 50.7 percent of third
graders are not proficient in reading. Over the course of 3
years, RSVP volunteers serve directly in 19 schools to provide
literacy tutoring and support to 255 students over 5,040 hours
of service.
In Davidson and Williamson Counties, Tennessee, RSVP's signature
program is Friends Learning in Pairs (FLIP), an intergenerational
volunteer tutoring program. Through weekly one-on-one tutoring
sessions, RSVP volunteers provide the individual support that
struggling young students need in order to succeed. During the 2014-15
school year, 124 RSVP volunteers provided one-on-one academic
assistance to 446 elementary school students, contributing a total of
4,556 service hours. Over the program's 21-year history, 82 percent of
participants met academic benchmarks. According to one teacher at
Franklin Elementary,'' I don't know where we would be without FLIP.
They helped six children in my class improve at least a year's growth.
These students were below level and made all benchmarks this year! ``
RSVP helps seniors to live independently: volunteering helps keep
seniors vibrant and RSVP volunteers help meet the needs of seniors to
keep them in their homes.
In rural Pike County, Alabama, 25 Volunteers transport an average
of 15 other seniors per week to medical appointments, drug stores, and
to buy groceries or other necessities. They provide over 2500 trips
annually enabling 86 seniors to get medical care and continue to live
independently in their own homes and save over $5.6 million in nursing
home costs. Another 25 RSVP Volunteers call 85 mostly rural frail
homebound seniors on a daily basis providing outreach and interaction,
helping them remain mentally alert, feel safer, and enabling them to
remain in their homes longer and avoid early institutionalization.
Fifteen RSVP volunteers assist with local meal deliveries to
homebound seniors. Last year, RSVP volunteers delivered over 4800
meals, ensuring that seniors received a nutritious meal, interacted
with volunteers and were able to remain in their homes and avoid
premature institutionalization.
The 317 RSVP volunteers with the Flint Hills Volunteer Center in
Manhattan, Kansas volunteered for a total of 25,250 hours, provided
1800 hours of volunteer tutoring, 2700 hours delivering meals to
homebound individuals, 11,600 hours supporting soldiers at Fort Riley,
and almost 900 hours serving veterans and their families. By helping
seniors continue to live independently, they saved an estimated $7.8
million in nursing home care costs.
Volunteers in the Athens, Alabama RSVP program staff the Volunteer
Income Tax Assistance (VITA) program which helps put money back into
the community. In the past year, they helped file 1891 returns that
resulted in Earned Income Tax Credits worth $324,411, Child Tax Credits
worth $119,395, Federal Returns of $1,400,450, and State returns of
$117,24. VITA volunteers served 316 veterans.
RSVP volunteers support veterans and military families. Pike County
RSVP has 20 RSVP volunteers who serve with its Veterans and Military
Families initiative in which Troy University provides a classroom with
60 available computers and RSVP volunteers assist with job search,
applying online and mock job interviews for veterans and military
families, assisting veterans and military families in researching and
locating housing, schools, and support services. All told, these RSVP
volunteers helped more than 200 veterans and military last year. The
first RSVP Veterans Coffeehouse in Connecticut was established by
Thames Valley Council for Community Action's RSVP in Killingly in 2015.
More than 433 guests, including 157 veterans, attended the coffeehouse
during its first 6 months. The coffeehouse provides socialization for
isolated veterans. Through connections made at the coffeehouse, several
veterans have been able to gain access to additional services and
benefits. Two veterans were awarded full disability for Agent Orange
complications. A 92-year-old veteran received two new hearing aids at
no charge. Eight veterans began receiving housing, energy, medical and
food assistance through the Soldiers, Sailors & Marines Fund. Other
veterans are gaining access to healthcare through the Veterans
Administration as a result of coffeehouse connections.
RSVP is a ``destination'' for retiring ``baby boomers.'' Some
10,000 ``baby boomers'' are retiring everyday and will do so every day
for the next 20 years. RSVP is the only national program able to place
large numbers senior volunteers in high quality volunteer positions.
CNCS reported that RSVP has increased the number of baby boomers in the
program and provides those volunteers with high quality activities that
make use of their skills. Baby boomers enrolled in RSVP volunteer over
100 hours more than their counterparts who are not associated with
RSVP. Virtually all of RSVP baby boomers who recruit/coordinate other
volunteers are likely to continue in the program.
Take the case of Sylvia, a retired software engineer who volunteers
with Reading Partners, which matches students with volunteers, as a
volunteer with King County RSVP in Seattle. This is Sylvia's second
year in the program. Last year she worked with a 3rd grader who was 6
months behind in reading proficiency. By the end of the year, she
brought her student up to grade level. This year's student is a 1st
grader. Sylvia says, the personal relationship formed between student
and volunteer is a key motivator in a student's success. And, she adds,
success breeds confidence and confidence breeds more success. Maya, the
site coordinator at the elementary school where Sylvia volunteers says
``This year, Sylvia is working with a 1st grader who, thanks to her
tutelage, is quickly approaching grade level in reading. With her
background in math and the sciences, Sylvia is an expert at engaging
students with books on dynamic STEM subjects--distant planets,
fascinating animals, dramatic weather patterns--and shows her students
that reading is essential for any subject area.''
Sylvia also finds time to volunteer at CourtWatch, a program under
the auspices of King County Sexual Assault Resource Center, in which
volunteers collect information is used both to track individual cases
and to identify trends/patterns within the judicial system.
RSVP is helping in the fight against opioid abuse and can do more
with additional resources. Last year, Fort Wayne RSVP received a grant
that can be replicated at scale. It covers five mostly rural counties
in Indiana: Adams, Wells, Huntington, and Whitley Counties. The main
goal is to develop TRIADS -- partnerships of three law enforcement,
older adults, and community groups--in each county. TRIADS promote
Older Adult safety and to reduce the fear of crime that older adults
often experience. The TRIAD serves as a vehicle to promote citizen
involvement to address opioid abuse in these mostly, rural counties.
RSVP Volunteers are being recruited in each county to serve in TRIAD
event planning and distribution of educational material with a focus on
Opioid Abuse. Sheriffs are identifying topics for community education
including lack of knowledge of opioids, the use of Narcan, and safe
storage of medication in the homes, and proper disposal of medications.
Because it is not means tested, RSVP is agile enough to meet local
needs that may require different models. It can recruit doctors,
nurses, other health professionals, as well as other experts.
We believe that restoring funding for RSVP to $63 million will
enable more volunteers to tutor and mentor more students, help seniors
live independent and productive lives, support more veterans and
military families, and help combat opioid abuse, resulting in
significant benefits to both the volunteers and the communities they
serve.

[This statement was submitted by Betty M. Ruth, President, National
Association of RSVP Directors.]
______

Prepared Statement of the National Coalition of STD Directors

CDC's DIVISION OF STD PREVENTION FUNDING HISTORY
------------------------------------------------------------------------
Fiscal Year ($ millions)
------------------------------------------------------------------------
Funding:
Request:
2019.............................................. 227.3
Level:
2018.............................................. 157.3
2017.............................................. 152.3
2016.............................................. 157.3
2015.............................................. 157.3
------------------------------------------------------------------------

On behalf of the members of the National Coalition of STD Directors
(NCSD), I am requesting a total of $227.310 million, a requested
increase of $70 million, for the Division of STD Prevention in fiscal
year 2019 funding. The Division of STD Prevention is part of the
National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention at
the Centers for Disease Control and Prevention (CDC). NCSD members
represent sexually transmitted disease (STD) programs in health
departments in all fifty States, seven cities counties and eight U.S.
territories.
The United States leads all industrialized nations in the incidence
of STDs. Twenty million new cases of STDs occur each year, which cost
our healthcare system $16 billion dollars annually. Stopping the spread
of STDs requires early diagnosis and prompt treatment. STDs have
serious life-long health consequences, including infertility, higher
cancer risk, disability or death. These dire health consequences
disproportionately impact women and newborn babies.
CDC reports that STDs are at a record high. In the last year,
syphilis and gonorrhea rates both increased by 20 percent. Syphilis has
increased among women at an even higher rate, which has resulted in a
30 percent increase in congenital syphilis--syphilis transmitted during
pregnancy. Congenital syphilis is entirely preventable, and a single
baby born with congenital syphilis is one too many. In 2016, rates of
congenital syphilis increase for the fourth year in a row, with over
620 babies born with congenital syphilis. Babies born with congenital
syphilis are at risk for devastating life-long consequences and death.
In addition, CDC studies have shown that STD infection rates have
increased along with heroin injections and prescription opioid misuse
disorders. People who use drug, including opioids, have high rates of
unsafe sex practices, such as sex without a condom, having sex partners
who inject drugs, and engaging in sex work. Such high-risk sex
behaviors put individuals at elevated risk for acquiring and STD and
for transmitting an STD to their sexual networks. STDs have increased
directly as a result of the increasing drug use; States across the
country report drug use in 30-80 percent of their STD cases.
Additionally, national date show that an increasing proportion of
syphilis transmission among heterosexuals is occurring among people who
use drugs, including people who inject drugs (PWID). As evidence by the
graph below (taken from CDC materials) that this is increasing so for
women; drug use is driving the increasing syphilis among women, which
results in increasing congenital syphilis.

Within STD public health programs there is a unique and vital
workforce: Disease Intervention Specialists, or DIS. DIS are key public
health staff who, among other activities, contact those who may have
been exposed to an STD to ensure they are tested and treated, leading
to improved health in the individual and stopping the spread of disease
in the community. Federal funding often supports the work of DIS making
it possible for this workforce to utilize their skills beyond STD and
HIV prevention by responding to other public health emergencies such as
zika and ebola. This staff are key to any infectious disease response
to the opioid crisis; DIS work in the community to track people
diagnosed with reportable diseases and link them to appropriate
diagnostic and treatment services.
In most States, Federal STD funding is the only funding for STD
prevention. In fiscal year 2017, DSTDP was a cut $5 million and while
this funding was restored, the program is currently operating at fiscal
year 2016 funding levels. The STD field remains historically under
resourced, resulting more disease, additional costs to our healthcare
system, and less educated clinicians.
While STDs are currently at their highest levels ever reported,
Federal STD prevention funding has seen a $16 million reduction in
annual funding since 2003. This is a nearly reduction of 40 percent in
buying power for CDC and its State, local, and territorial grantees.
And since 2003:
--Cases of syphilis have increased 230 percent;
--Cases of chlamydia have increased 75 percent;
--Only one drug is now recommended for gonorrhea treatment due to
emergence of drug resistance; in 2003, CDC recommended five
different drugs for gonorrhea treatment
As a result of funding reductions at the State and Federal level,
STD programs across the country have had to prioritize among the STDs
their programs work on and the cases DIS follow-up on to stop the
spread of that STD. Many programs prioritize work on HIV and syphilis,
and do not have the resources to track down possible contacts for
gonorrhea and chlamydia. This is particularly concerning because of the
recent news of the first fully resistance case of gonorrhea reported in
the United Kingdom. We may be in the cusp of an epidemic of drug-
resistant gonorrhea and we are unprepared to deal with such an
epidemic.
Funding DSTDP will move the country towards an STD-free America.
The goals are to improve infant and maternal health, create healthy
families, and decrease costs to the healthcare system. If this request
is fully funded, it will address the following issues:
--Prevent syphilis and eliminate congenital syphilis: Syphilis is
associated with significant complications if left untreated and
facilitates transmission and acquisition of HIV. Congenital
syphilis is now at the highest rate since 2000. Congenital
syphilis is totally preventable, and each new case represents a
major failure of our healthcare system. Passing on the
infection during pregnancy can lead to infant death in 40
percent of the cases. Infants who survive may experience severe
health and development issues.
--Prevent infertility through diagnosis and treatment for chlamydia:
In 2016, almost 1.6 million new cases of chlamydia were
reported, but this statistic is believed to be less than one-
quarter of all new cases. Up to 40 percent of women with
untreated chlamydia develop pelvic inflammatory disease (PID);
one in five women with untreated chlamydia will lose the
ability to have children. Having the disease during pregnancy
can result in passing the infection to the infant.
--Prevent gonorrhea to limit more costly treatments: Untreated
gonorrhea can cause serious and permanent health problems
including infertility. Preventing and treating gonorrhea now,
while it is easily curable, will reduce the high cost of
treating gonorrhea once drug resistance develops. In 2015-2016,
the rate of reported gonorrhea increased 18.5 percent, and
increased 48.6 percent since the historic low in 2009.
--Special Initiative for Direct STD Services: STD programs and their
partners need additional funding to scale up effective testing
and treatment for these infections. Effective testing and
treatment is a key way to halt STDs. $20 million of this
request is for a special initiative for STD screening and
treatment to better address these epidemics.
In fiscal year 2019 funding, please fund STD prevention at no less
than $227.3 million to allow an effective response to the highest
levels of STD ever recorded. For more information, please contact
NCSD's Director, Policy and Government Relations Stephanie Arnold Pang
via email at [email protected].

[This statement was submitted by David C. Harvey, Executive
Director, National Coalition of STD Directors.]
______

Prepared Statement of the National College Access Network
Dear Chairs Cole and Blunt and Ranking Members DeLauro and Murray:
Thank you for your strong leadership during the 2018 fiscal year
appropriations discussions that secured significant investments in
college affordability for low-income students in our country. As our
mission states, the National College Access Network and its members are
focused on helping historically underrepresented students achieve their
educational dreams through any high-quality pathway of postsecondary
education. The priorities shown through the fiscal year 2018 funding
decisions will help students pursue these educational dreams. Today, we
write to respectfully request a continued commitment to low-income
students through additional investment in financial aid and related
programs.
The National College Access Network, founded in 1995, represents
more than 400 members across the country that all work toward NCAN's
mission to build, strengthen, and empower communities committed to
college access and success so that all students, especially those
underrepresented in postsecondary education, can achieve their
educational dreams. NCAN's members span a broad range of the education,
nonprofit, government, and civic sectors, including national and
community-based nonprofit organizations, federally funded TRIO and GEAR
UP programs, school districts, colleges and universities, foundations,
and corporations. All are dedicated to helping underrepresented
students access, afford, and succeed in higher education. The Federal
investments that would most bolster this goal in fiscal year 2019
include the following:
Pell Grant Investments:
The Pell Grant award is the cornerstone of financial aid for low-
income students. Without this need-based grant funding, an even smaller
portion of low-income students would be able to access higher
education. Congress recognized this importance in the fiscal year 2018
budget by increasing the maximum Pell Grant award by $175, or 3
percent. This increase is crucial as automatic inflationary adjustments
previously required by the Higher Education Act expire. Even with this
increase, the purchasing power of the Pell Grant for a four-year
college degree drops to an historic low of 28 percent.
Due to this loss of purchasing power, NCAN asks for consideration
of a bold, multi-year proposal to address the long-term purchasing
power of the Pell Grant. At its peak in 1975-76, the maximum Pell Grant
award covered nearly four-fifths of a public four-year college
education. NCAN realizes the fiscal challenges that face Congress and
therefore recommends a multi-year interim step that would return Pell's
purchasing power to 50 percent of the cost of a four-year public higher
education. In order to reach that goal, as outlined below, NCAN
respectfully requests a maximum Pell Grant of $6,831.

----------------------------------------------------------------------------------------------------------------
One Year
Public Four- One-Year Pell Maximum Percentage of Percent Change
Academic Year Year Cost of Percent Change Award CoA Covered by in Pell
Attendance Pell Maximum Maximum Award
----------------------------------------------------------------------------------------------------------------
08-09........................... $14,370 -- $4,731 33% --
09-10........................... $15,240 6.1% $5,350 35% 13.1%
10-11........................... $16,180 6.2% $5,550 34% 3.7%
11-12........................... $17,160 6.1% $5,550 32% 0.0%
12-13........................... $17,820 3.8% $5,550 31% 0.0%
13-14........................... $18,380 3.1% $5,645 31% 1.7%
14-15........................... $18,930 3.0% $5,730 30% 1.5%
15-16........................... $19,570 3.4% $5,775 30% 0.8%
16-17........................... $20,150 3.0% $5,815 29% 0.7%
17-18........................... $20,770 3.1% $5,920 29% 1.8%
18-19........................... $21,393 3.0% $6,095 28% 3.0%
19-20........................... $22,035 3.0% $6,831 31% 12.1%
20-21........................... $22,696 3.0% $7,717 34% 13.0%
21-22........................... $23,377 3.0% $8,649 37% 12.1%
22-23........................... $24,078 3.0% $9,390 39% 8.6%
23-24........................... $24,800 3.0% $10,168 41% 8.3%
24-25........................... $25,544 3.0% $10,984 43% 8.0%
25-26........................... $26,311 3.0% $11,840 45% 7.8%
26-27........................... $27,100 3.0% $12,737 47% 7.6%
27-28........................... $27,913 3.0% $13,957 50% 9.6%
----------------------------------------------------------------------------------------------------------------

If the initial installment of this multi-year approach is not
fiscally possible, then we recommend that Congress continue to ensure
an inflationary adjustment (estimated at 2 percent) to Pell and
increase the maximum award to $6,217 in the fiscal year 2019
appropriations bill.
Campus-Based Aid:
As low-income students are piecing together the resources to
support their postsecondary pursuits, every dollar and every type of
aid counts. For most low-income students, the Supplemental Educational
Opportunity Grant (SEOG) and Federal Work-Study help to fill important
holes in their financial aid packages.

The average SEOG award for dependent students was $752 in 2017. For
the 2018 fiscal year, Congress generously increased the SEOG
budget by 14.6 percent, bringing it to $840,000,000. This
increase will allow institutions to offer SEOG awards to more
students to or provide additional dollars, up to $4000, to
students who need it most. For fiscal year 2019, NCAN
respectfully requests that Congress once again increase the
SEOG program budget by 14.6 percent, for a total of
$963,000,000.

Fifty-eight percent of today's students work while enrolled in
higher education. The Federal Work-Study (FWS) program allows
students to work in a flexible environment, learn important
skills, and minimize the amount of time they spend travelling
between work and campus. For the 2018 fiscal year, Congress
provided a FWS investment of $1.13 billion, an increase of 14.1
percent. For fiscal year 2019, NCAN respectfully requests that
Congress once again increase the FWS program budget by 14.1
percent, for a total of $1.29 billion.

Additionally, campus-based aid programs encourage institutions to
increase their investment in need-based financial aid as both of these
programs require a match. The larger Federal investment also means
institutions will be increasing their investment, bringing more funds
to students overall.
Federally Funded College Access Programs--TRIO and GEAR UP:
With approximately 1.8 million high school seniors defined as low-
income annually, many programs are needed to meet all of their needs as
they pursue their options after high school graduation. The NCAN
community serves approximately 2 million students annually across
ages--from middle school through college graduation. To reach all of
the students needing services nationwide, our members build important
partnerships both with TRIO and GEAR UP programs. NCAN respectfully
requests that Congress continue its investment in federally funded
college access programs at the amounts requested by their communities:
$1,070,000 for TRIO and $375 million for GEAR UP.
Corporation for National and Community Service (CNCS):
For every dollar spent on national service, the country sees a
return on investment that is almost fourfold. Service also plays an
important role in the college access movement. In particular, many of
NCAN's largest members are able to maximize their impact on
underrepresented students by participating in the AmeriCorps public-
private partnership. Continuing support for CNCS, and in particular the
AmeriCorps program, will enable additional volunteers to work with low-
income students, students of color, and students who are first in their
family to attend college. NCAN respectfully echoes the request of the
Voices for National Service to increase funding to provide for 100,000
volunteers during the fiscal year 2019.
Thank you for this opportunity to provide our funding priorities
for the fiscal year 2019. High-income students are two times more
likely to complete a postsecondary degree or credential than low-income
students. Through continued supports--both financial and programmatic--
our country can work together to close this attainment gap. Thank you
again for your support of this important goal.
Sincerely.

[This statement was submitted by Kim Cook, Executive Director,
National College Access Network.]
______

Prepared Statement of the National Council for Diversity in the
Health Professions
health resources and services administration
Chairman Blunt, Ranking Member Murray, and distinguished members of
the subcommittee, thank you for the opportunity to submit this
statement for the record on behalf of the National Council for
Diversity in the Health Professions (NCDHP). I am Dr. Wanda Lipscomb
and I serve as President of the NCDHP and Director of the Center of
Excellence for Culture Diversity in Medical Education at Michigan State
University. NCDHP was established in 2006. It is a council of the
Nation's majority and minority institutions that are either currently
or formerly distinguished as a ``Center of Excellence'' through the
Health Resources and Services Administration's (HRSA)'s Centers of
Excellence (COE) program or are a current or former recipient of the
Health Careers Opportunities Program (HCOP) grant, now known as the
National HCOP Academies program. Every member institution within the
council is committed to advancing pipeline programs and programmatic
activity that leads to diversity in the health professions. With this
in mind, I am proud to put forth the following recommendations for the
fiscal year 2019 appropriations process:
--$8.56 billion for the Health Resources and Services Administration
(HRSA)
--$30 million for HRSA's Health Workforce: Centers of Excellence
(COE)
--$16 million for HRSA's Health Workforce: The National HCOP
Academy
--$2 million for HRSA's Health Workforce: Faculty Loan Repayment
--$50 million for HRSA's Health Workforce: Scholarships for
Disadvantaged Students
NCDHP is dedicated to promoting the education and training of a
workforce that is prepared to provide quality and culturally responsive
healthcare to the diverse US population. NCDHP members across the
Nation are actively involved in health professions education and
training, the development of educational pipeline programs for
individuals from disadvantaged backgrounds, and the delivery of
healthcare to the underserved. Through HRSAs Title VII workforce
diversity programs, addressing the long-term healthcare and health
professional needs of minority and underserved communities is
obtainable. Pipeline program interventions exert a meaningful and
positive effect on student outcomes in the health professions. When
institutions are strengthened through programs like the COE program,
the national capacity to produce a healthcare workforce whose racial
and ethnic diversity is representative of the U.S. population is
greatly enhanced. The COE program provides grants to health professions
schools and other public and nonprofit health or educational entities
to increase the supply and competence of underrepresented minority
practitioners in the health professions workforce. Programs like the
National HCOP Academies or HCOP increase the diversity of the non-
nursing health professions workforce by providing grants that improve
the recruitment opportunities into the health professions and enhance
the academic preparation of students from economically and
educationally disadvantaged backgrounds. This program supports students
from high school through the completion of their health professions
degree. In many instances, it even offers opportunities such as summer
enrichment programs to ensure the retention and interest of students
recruited. Furthermore, The Title VII workforce diversity programs
allow institutions to adhere to the best practices in increasing
diversity in the health professions as well. These programs allow for
institutions to further target and recruit disadvantaged students and
offer holistic and comprehensive experiences to their students,
institutions to recruit and retain invested faculty to work in
underserved communities and underrepresented students, and students to
have the financial means of funding their educational experiences.
We were pleased to see efforts to revitalize our Nation's
commitment to diversifying the health workforce through the Title VII
work force training programs like the COE and HCOP in fiscal year 2018.
As you begin the fiscal year 2019 process, NCDHP asks that you further
prioritize Title VII health professions training programs. Mr. Chairman
and Ranking Member Murray, please allow me to express my appreciation
to you and the members of this subcommittee. With your continued help
and support, NCDHP member institutions are keeping course to overcome
health workforce and health disparities. Thank you for your time and
consideration of these requests. We look forward to working with the
Subcommittee to prioritize the health professions programs in fiscal
year 2019 and the future.

[This statement was submitted by Wanda Lipscomb, Ph.D., President,
National Council for Diversity in the Health Professions.]
______

Prepared Statement of The National Council of
State Directors of Adult Education
The National Council of State Directors of Adult Education (NCSDAE)
appreciates the opportunity to submit testimony about the funding level
for Adult Education programs in fiscal year 2019.
Adult Education helps 1.5 million Americans 16 years of age and
older, to gain the skills necessary to obtain and sustain employment
and enter postsecondary education and training. These individuals, who
are no longer in school and are functioning below the high school
completion level, would otherwise have few options to become self-
sufficient. Services include coupling the foundational skills of
reading, math, and English with job training, and incorporating college
and career readiness skills. Public schools, community colleges, and
community-based organizations provide programs at the local level.
Federal support for Adult Education leverages a significant
investment by States. Indeed, the National Council of State Directors
of Adult Education (NCSDAE) estimates that in 2015-2016, $1.24 billion
in non-Federal support matched $543 million in Federal dollars In
fiscal year 2013, each Federal dollar invested in the Adult Education
and Family Literacy Act (AEFLA) generated $2.49 in non-Federal matching
funds.
NCSDAE urges the Subcommittee to build on its record by increasing
funding for Adult Education to at least $664.5 million, the level
authorized for fiscal year 2019 in the Workforce Innovation and
Opportunity Act (WIOA), which was enacted with overwhelming bi-partisan
support and recognized the crucial role Adult Education plays in
preparing adults to enter the workforce, improve their employment
status, or pursue postsecondary education. Such improvements as the law
anticipates cannot be fully realized without sufficient resources.
Adding $35 million for Adult Education in the Consolidated Omnibus
Appropriations Act of 2018 is an important step, which we greatly
appreciate.
Adult Education programs serve only 1.5 million of the 24 million
adults in the United States who lack a high school diploma--a decline
of 44 percent from 2002 when almost 2.8 million students were served.
Adjusted for inflation, funding has declined by 20 percent since fiscal
year 2006. Additional resources would allow the system to build
capacity to serve a larger portion of the 24 million.
The United States is confronting a skills gap. By 2020, 65 percent
of all jobs in the United States will require some level of
postsecondary education or training. Yet, nearly half of the U.S.
workforce--about 88 million people--has only a high school education or
less, and/or low English proficiency. In a recent survey, 92 percent of
business leaders thought that U.S. workers were lacking the necessary
skills.
Both urban and rural areas need trained employees. As of 2016,
there were 476 counties in the U.S. in which 20 percent or more of the
working age population lacked a high school diploma or equivalent.
Eighty percent of these counties are located in non-metro areas.
We cannot depend on a robust economy to solve this problem. A
stronger economy will bring people back into the workforce but is also
creating a need for education and training. Employers can teach job
skills but aren't qualified to teach foundational and essential skills.
Adult Education can train these students to fill the jobs industry
needs today.
According to the Organization of Economic Cooperation and
Development (OECD) Program of International Assessment of Adult
Competencies (PIAAC), Americans lag behind the international average
for basic skills in literacy and numeracy and ``problem-solving in
technology-rich environments (defined as `using digital technology,
communication tools and networks to acquire and evaluate information,
communicate with others and perform practical tasks').'' Other nations
show consistent progress in enhancing the education levels of their
adult populations. The U.S. is losing ground. Twenty percent of adults
with a high school diploma have less-than-basic literacy skills and 35
percent of adults with a high school degree have less-than-basic
numeracy skills. Without access to Adult Education, undereducated,
under-prepared adults cannot qualify for jobs in high demand
occupations nor can they qualify for entry into community colleges. We
must invest in Adult Education because the jobs of the future will
require postsecondary education.
It will be impossible to create a workforce with the skills to
compete in the global 21st Century economy if we focus only on
secondary schools and postsecondary institutions. We must also support
Adult Education because much of America's future workforce consists of
adults who are already working (according to the Bureau of Labor
Statistics the median age of U.S. workers is expected to by 42.4 years
old by 2014). They are beyond the reach of the high schools and
postsecondary education. Adult education is the best way to re-engage
them.
Some Examples:
The Alabama Adult Education shows what WIOA implementation can
accomplish. It is working seamlessly with the other divisions of the
Alabama Community College System to play a major role in workforce and
economic development. It is partnering with all the Workforce
Innovation and Opportunity Act (WIOA) partners, braiding funds and
resources to train TANF and SNAP clients through Integrated Education
and Training and Career Pathway models. It also collaborates with
Pardon and Parole to assist felons to transition back to society by
providing academic and workforce skills training as well as supportive
services, which lead to employment. There are examples from across
Alabama in which AE students have attained stackable certificates and
credentials that are recognized by industry. Calhoun Community College
is an example of how IET and Bridge programs have increased enrollment
in adult education, community college training, and led to successful
completers that have gained employment. The Reid State Community
College Adult Education program is one in which Adult Education
students are integrated into its Truck Driving program. Students are
supported through contextualized academics and GED preparation embedded
into the specific technical training that leads to CDL credentials and
employment. Recently 11 students completed the short term Truck Driving
program through Reid State Adult Education and College partnership and
all are now working.
New York has an articulation agreement with its secondary Career
and Technical Education program that allows students that complete the
Health Services program enter its Practical Nursing program at a
reduced tuition rate. It has also collaborated with CTE with the Diesel
Mechanics program to have students get a Class B driving license
through its CDL program. New York is in the process of developing a
manufacturing class that will share equipment and blend students
together. Finally, New York also offers adults the opportunity to
participate in the secondary programs along with the high school
students.
Every Adult Education student in Washington State is required to be
on a dedicated college and career pathway to living wage employment.
Basic Skills now provides students with the opportunity to develop
skills to be college ready. In addition, employability skills are
taught in every class at every level. In Washington State, WIOA Title
II has dramatically changed the world of Basic Skills Education for
adults. Washington has developed a comprehensive college and career
pathway for all students. Students in levels 1-3 Adult Basic Education
and English Language Acquisition take on-ramps to I-BEST and other
college programming. The five program options include: High School 21+
(HS 21+) which allows students 21 years of age and older to receive a
competency-based high school diploma. The program awards credit for
prior learning, military experience, and work experience. Because it is
competency based it allows a student to progress as outcomes are met,
saving both time and money. The I-BEST at work on-ramp-which works with
incumbent workers in the workplace, team-taught by a basic skills
instructor and a trainer from the company. Integrated Digital English
Acceleration (I-DEA) is an ELA on-ramp which provides the lowest level
ELL students with a year of rigorous curriculum and a laptop computer,
with half of the instruction online with 24/7 Internet access to
learning. I-DEA has shown a 16 percent higher-level completion rate
over traditional programming for the last 3 years. On-ramps
contextualized in employability & College readiness. Career specific
on-ramps are contextualized to a specific career pathway like
healthcare or welding. When students are ready, they can move into I-
BEST or other college programming with their tuition funded. In their
second quarter, they can access funding to continue all the way to
their 2-year degree. Upon receiving a 2-year degree, they can also
receive their high school diploma. They then can use those same funding
sources to transfer into an applied baccalaureate degree program at a
community college or a 4-year university. I-BEST has an 88 percent
completion rate for credits attempted, and the College and Career
Research Center found that I-BEST students attempt 50 percent more
credits than traditional Workforce students and 7 credits more than
academic transfer students. Basic skills students have an 83 percent
completion rate based on performance points earned.
This foundational pathway work will frame basic skill's role in
Washington over the next 5-8 years.
In Rhode Island, five of the six Perkins grants go to local school
districts (the sixth goes to the community college). Two of those five
sub-grant to adult education providers. The programs that they are
holding include CNA, phlebotomy, customer service/clerical, and medical
records/health information technician.
In Missouri, the Independence School District Adult Education
program at the Don Bosco Center provides Contextualized Instruction in
the following trades: Construction, Warehouse, Hospitality, and
Nursing. It also partners with Job Corp in Excelsior Springs and Kansas
City that provides certification in 12 different trades. Our program
provides academic instruction and remediation using curriculum that is
industry and skill specific. Another project in is a pilot Nursing
Assistant class (CAN) for immigrants and refugees. This class is
exceptional because it works with non-traditional students in a non-
traditional nursing course. Most nursing classes require that students
be proficient in English and score at 9th grade or above on Tests of
Adult Basic Education (TABE). This program enrolled English as a Second
Language (ESL) students scoring at upper Intermediate and Advanced
levels in the class. Students attend 5.5 hours of Nursing Instruction
on Mondays and participate in a contextualized ESL/Nursing remediation
the remainder of the week with the ESL/IET teacher. The curriculum to
teach English is based on the CNA nursing manual. When students
complete the course and pass the State exam, they have been offered
jobs at a local hospital that is eager for them to start because the
students are multi-lingual. St. Luke's has even offered to pay for
additional certification and training so that students may continue on
their career pathway. To date, ISD's forklift driver training class has
certified 56 students in 7 different types of forklift certification
and OSHA safety certification. The majority of students have been
refugees and immigrants. The course is 6 weeks. Students spend 1 day a
week with the Forklift trainer in class and 1 day a week with him in
the warehouse driving. The teacher uses the vocabulary words from the
text and exam to teach English that is specific to this industry and
assures that Reading, Writing, Listening, and Speaking are part of each
lesson. Students also attend digital literacy class two days a week to
learn workforce readiness skills that include resume writing and
interview skills. ISD started a pilot this year with the Hospitality
trades at Don Bosco. Her class which meets four days a week allows
students to learn English reading, writing, listening, and speaking,
and allows them to complete their certification in the hospitality
field. ISD has partnered with hotels and restaurants in the area, and
students are able to secure jobs based on the District's
recommendation.
Maine has adopted College and Career Readiness Standards for all of
its adult education literacy instruction. This is an evidence based
approach to learning that in addition to literacy education, addresses
career specific needs to be successful in employment as learners move
along their career pathway.
Properly funding this robust adult education system would yield
substantial fiscal and social benefits, adding to GDP growth, personal
incomes, increased revenues, and savings on incarceration and
healthcare. By neglecting the adults who need services, we affect their
children, too. Almost 60 percent of children whose parents lack a
college education live in low-income families, and are less likely
themselves to get a good education and secure family sustaining jobs.
Mothers and fathers who learn basic skills are better equipped to help
their children succeed. A person with a high school diploma or
equivalent earns an average of $9,620 more per year than a non-
graduate.
Stimulated by WIOA, Adult Education is changing to meet the needs
of our 21st century economy by combining academic instruction and
occupational training, focusing on career pathways that include
intensive wraparound services, creating Adult charter schools, and
working more closely with employers. We urge you to fund Adult
Education at the level authorized in WIOA so that the ambitious goals
of that law may be realized. If Americans are to embark or continue on
pathways that lead to good jobs and good wages, we must invest
adequately in our Adult Education system to remain economically
competitive.
Fiscal Year 2019 Funding Request: The National Council of State
Directors of Adult Education strongly supports funding Adult Education
at the level authorized in WIOA.
______

Prepared Statement of the National Council of Higher Education
Resources
Dear Chairman Blunt and Ranking Member Murray:
The National Council of Higher Education Resources (NCHER) urges
the subcommittee to include statutory language extending the authority
for the U.S. Department of Education to pay Account Maintenance Fees
(AMF) and language encouraging the Department to leverage the expertise
of State and nonprofit organizations to assist student and parent
borrowers repay their student loans in the fiscal year 2019 Labor,
Health and Human Services, Education, and Related Agencies
Appropriations Act. NCHER is a national, nonprofit trade association
that represents State and nonprofit higher education agencies that work
with students and families to develop, pay for, and attain their
educational goals so they can pursue meaningful and rewarding work and
become contributing members of society.
First, NCHER's State and nonprofit guarantors appreciate the
subcommittee's recognition of the vital role that guaranty agencies
play in the Federal student loan program, and commend you for including
language extending AMF authority for an additional year in the
Bipartisan Budget Act of 2018 (Public Law 115-123). Guaranty agencies
are authorized under the Higher Education Act of 1965 to provide
important services to students, borrowers, families, and the Federal
Government by helping to manage the Federal Family Education Loan
Program (FFELP) at the local level, and increasing access to and
success in postsecondary education. Many guaranty agencies operate and
provide student support services in more than one State. These agencies
receive AMF payments from the Department to pay for their general
operating expenses. The fees are crucial to ensuring that the agencies
are able to perform critical functions that assist borrowers in
avoiding default and protect Federal taxpayers as the FFELP continues
to wind-down its operations. The fees are used to carry out the
agencies' mandate to:
--Support college access and success activities, such as financial
aid awareness, consumer education, FAFSA (Federal Application
for Federal Student Aid) completion services and events,
borrower assistance, and ombudsman support. These services are
provided to students and families in States around the country,
regardless of the type of loan they received to finance their
postsecondary education. Today, the services are provided to
Direct Loan applicants and borrowers.
--Assist struggling borrowers in avoiding default on their Federal
student loans, and help defaulted borrowers rehabilitate their
loans and repair their credit history.
--Provide schools with basic administrative support such as
information on student loan defaults and loan transfers and
training and technical assistance to lenders and schools.
--Maintain loan records for student and parent borrowers; monitor
school enrollment and repayment status; conduct comprehensive
compliance reviews of lenders and servicers; and conduct claim
reviews and issue loan holder payments.
The fees are paid quarterly and based on the original principal
balance of an agency's outstanding non-defaulted FFELP portfolio.
According to the Congressional Budget Office, the annual extension of
AMF authority is budget neutral. If AMF is eliminated, guaranty
agencies will be unable to perform their basic FFELP administrative
functions and could turn over their portfolios to the Department--
driving up the agency's administrative costs. The agencies will also be
forced to end their outreach programs to students and families that are
not otherwise provided by the Department.
The President's budget request for fiscal year 2019 included the
elimination of AMF. The budget office mistakenly believes that, because
there are no new originations under FFELP, the fees are no longer
necessary. However, there is still roughly $203.4 billion in
outstanding FFELP loans held by private lenders and guaranty agencies.
The agencies provide--and must continue to provide--services and
accountability for this sizeable Federal asset and the functions need
to continue throughout the wind-down period. The fiscal year 2016,
fiscal year 2017, and fiscal year 2018 appropriations bills included a
1 year extension of AMF because it is essential for guaranty agencies
to provide important services on behalf of the Federal Government, and
we urge the subcommittee to provide an additional 1 year extension in
the fiscal year 2019 appropriations bill.
Second, according to recent statistics, Federal student loan debt
totals nearly $1.37 trillion, an amount that policymakers and some
economists have cited is negatively impacting the ability of student
borrowers to achieve postsecondary success, own a car, buy a house, or
start a family. According to the Department, over 11 percent of
borrowers who took out a Federal student loan defaulted on that loan
within 3 years, a percentage that continues to be unnecessarily high.
Clearly, student and parent borrowers need access to more specialized
support services throughout their postsecondary education to help them
understand their financial decisions.
State and nonprofit higher education agencies, including loan
holders, loan authorities, servicers, and guaranty agencies, have been
highly successful in providing important services to struggling
borrowers for decades because they provide a holistic approach to
student success. These agencies counsel students and families on early
awareness of the variety of educational choices available beyond high
school and creating a college-going culture, the appropriate courses to
take in high school to facilitate entering the college major or career
program of their choosing, how to apply for college and navigate the
financial aid process, how to avoid overborrowing, and the importance
of managing student loan debt, as well as budgeting and personal
finance management skills. These agencies also act as borrower
advocates to help struggling borrowers understand the student loan
repayment process and options that may be available to them to help
mitigate delinquencies and defaults. However, these important services
are largely going away, and some have already been eliminated, because
of a lack of resources resulting from declining Federal Family
Education Loan Program portfolios.
NCHER believes the best solution to addressing the current
challenge of borrowers struggling to repay their student loan debt is
to encourage the Department of Education's nine national for-profit and
not-for-profit student loan servicers to work with smaller State and
nonprofit organizations--most of whom are small businesses and employ
less than 500 employees--as subcontractors to provide personalized
financial education and debt management services to struggling
borrowers. The Consolidated Appropriations Act, 2017 included language
directing the Department to put together a plan under which it will
give credit to its Federal student loan servicers to subcontract with
small businesses, including State and nonprofit organizations with
expertise in assisting borrowers in the repayment of their student
loan. In the budget justifications for fiscal year 2018, the Department
stated that there must be a slight change to the small business
designation as well to make clear that the definition of `small
business' in the student loan servicing context includes State and not-
for-profit entities, and not just one that is organized for-profit. We
urge the subcommittee to include the suggested language in the fiscal
year 2019 appropriations bill. State and nonprofit organizations with
more than 50 years of experience can help struggling borrowers address
the current challenges in the Federal student loan program, but their
work must qualify for small business credit.
NCHER appreciates the opportunity to provide feedback on its
appropriations priorities. We look forward to working with the
subcommittee as it begins drafting the fiscal year 2019 appropriations
bill to maintain and improve those services provided to struggling
borrowers.
Thank you.

[This statement was submitted by James P. Bergeron, President,
National Council of Higher Education Resources.]
______

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 this
testimony regarding the Social Security Administration's (SSA's) fiscal
year 2019 Appropriation. NCSSMA respectfully requests that Congress
provide at least $13.509 billion in fiscal year 2019 for SSA's
Limitation on Administrative Expenses (LAE) account. This level of
funding will help ensure the agency can continue to build on the
improvements currently underway due to increased funding provided for
fiscal year 2018 by Congress.
The table below outlines SSA resource levels in comparison to key
workload service delivery performance numbers. SSA must have the
resources necessary to improve and modernize customer service, make
much-needed Information Technology (IT) infrastructure and systems
upgrades, maintain program integrity workloads, deter and detect fraud
and errors, and continue to address the high volumes of initial claims
and post-entitlement work.

We recognize the current fiscal constraints facing legislators, but
we request that Congress provide fiscal year 2019 funding for SSA that
is sufficient to improve service to the public while addressing
stewardship responsibilities and making IT infrastructure and systems
upgrades. We believe that the $480 million increase provided for fiscal
year 2018 is a significant step in the right direction, but that
increased funding is needed for fiscal year 2019 as well in order to
continue addressing disability backlogs in the hearing offices, initial
claims and post-entitlement backlogs in the Program Service Centers and
significantly reduced staffing levels in both field offices and
teleservice centers. The following Report language accompanying the
fiscal year 2018 Consolidated Appropriations Act, speaks to the urgency
of this issue:
Field Offices.--The agreement is concerned that SSA may be reducing
resources for field offices and expects SSA to continue to support
frontline operations. In fiscal year 2017, SSA field offices served
approximately 42 million visitors, a 5 percent increase over fiscal
year 2015. The high volume of visitors, combined with factors such as
complex workloads, shortened public operating hours, and staff
shortages, have led to increased wait times in both field offices and
the National 800 number. SSA is directed to submit a report to the
Committees on Appropriations of the House of Representatives and the
Senate within 90 days of enactment of this Act outlining its plan for
ensuring that field offices, hearing offices, processing centers, and
teleservice centers are receiving sufficient resources to maintain at
least the current level of constituent services.
The table below outlines staffing, year-to-year losses and expected
hiring in fiscal year 2018.

community-based service
The statements below demonstrate how sufficient resources for SSA
have a positive impact on the agency's ability to deliver vital
services to the American public and in fulfilling the agency's
stewardship responsibilities.
A World War II veteran contacted the office about a Medicare B
surcharge he and his wife had been paying for years. Even though the
events described by the veteran dated back decades, the representative
researched the issue, gathered statements and evidence, and helped the
veteran to submit a request for premium surcharge rollback under
equitable relief. After a few months, the request was granted, and the
beneficiary and his wife not only reverted to the standard Medicare
part B premium, they each received a premium refund for past surcharge
amounts. Both were exceedingly grateful that an official of the
government had taken the time to listen to them and take action to help
them.--Manager, Salisbury, NC
On a daily basis, our office assists a high percentage of homeless
individuals without access to phone or Internet services. This
vulnerable segment of our population depends on face-to-face service to
apply for benefits, obtain information about their benefits and receive
benefit statement letters that they use to apply for State and local
government services. The presence of our office helps ensure that our
neediest population receives the service it so desperately needs.--
Supervisor, Manchester, NH
A claimant contacted the office because he could not get his
benefits reinstated for over a 6-month period. We were able to process
a critical payment so that he could purchase school supplies for his
children by the first day of school. He had not been able to purchase
his prescriptions since his check stopped and, although he now had
funds, he needed the Medicare reinstated. After a panicked phone call,
the customer shared he was HIV positive and with medications, he was
able to live an active life. After an escalated blood T cell count, his
doctor said that he was on the verge of full-blown AIDS and medications
were the only preventative measure. With the assistance of a Medicare
congressional liaison, we expedited the reinstatement of his Medicare
within 3 days. In the 20+ years working for the agency, I have never
seen Medicare issues resolved so quickly.--Supervisor, Georgetown, TX
A terminally ill, Stage 4, cancer patient recently came into our
office in dire need of medical care. The Claims Specialist in our
office immediately went to work securing the necessary medical
documentation needed to get the claimant's Disability Claim approved in
a matter of days. Our office serves a rural area where most people lack
access to high-speed Internet. Without a community-based field office,
most would never have any direct contact with the government. Without
our local field office, many customers would be forced to drive over an
hour for service or do without service, due to lack of Internet
availability.--Manager, Union City, TN
When SSA's administrative resource needs are unmet, it results in
deterioration in key service areas and stewardship workloads. In fiscal
year 2016, the agency saw an increase of about 2 million visitors from
the previous year. The agency expects those numbers to remain
relatively constant through fiscal year 2018. Approximately 4 million
actions are currently pending in the agency's Program Service Centers.
These actions are not just numbers, they are actual people, waiting to
receive assistance from SSA. Beginning this fiscal year through
February 2018, there has been a deterioration in SSA's 800 number
service, with an over 32-minute wait. This is a 14-minute increase over
the same period last year. At the close of fiscal year 2017, there were
1.05 million people waiting for a hearing decision, with the average
processing time at a record-setting 605 days. It is only recently that
pending hearings have fallen below the one million mark. Sadly, in
fiscal year 2017 over 10,000 individuals died while waiting for a
decision on their disability application, an increase of more than
1,300 deaths from the prior year. If SSA's administrative funding is
not sufficient, these backlogs will increase and public service levels
will degrade further.
funding for fiscal year 2019
Sufficient resource allocations in fiscal year 2019 are required to
address the massive hearings backlog, increases in other workloads,
visitors, and telephone calls in field offices and to the National 800
Number, while at the same time maintaining deficit-reducing program
integrity work. Resources are also necessary to advance SSA's efforts
to undertake an IT Modernization project that will significantly
enhance the agency's systems and improve productivity. SSA must
continue to modernize its computer language, databases and systems
infrastructure. Although the fiscal year 2018 Consolidated
Appropriations Act designated $280 million to support SSA's IT
modernization efforts, without continued funding of SSA's IT needs in
fiscal year 2019, there remains the risk for significant service
disruptions and reduced system performance and production.
conclusion
NCSSMA respectfully requests that Congress consider allocating at
least $13.509 billion for SSA's LAE account in fiscal year 2019 to meet
the agency's multitude of public service responsibilities. SSA must
have the resources necessary to provide quality service to the American
public, maintain program integrity efforts that save taxpayer dollars,
and continue to address the high volumes of initial claims being filed
and post-entitlement work.
On behalf of NCSSMA members nationwide, thank you for the
opportunity to submit this written testimony. We respectfully ask that
you consider our comments, and would appreciate any assistance you can
provide to ensure the American public receives the critical and
necessary service they deserve from the Social Security Administration.

[This statement was submitted by Christopher Detzler, President,
National
Council of Social Security Management Associations.]
______

Prepared Statement of the National Family Planning & Reproductive
Health Association
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
My name is Clare Coleman; I am the President & CEO of the National
Family Planning & Reproductive Health Association (NFPRHA), a national
membership association representing providers and administrators
committed to helping people get the family planning education and care
they need to make the best choices for themselves and their loved ones.
Many of NFPRHA's members receive Federal funding from Medicaid and
through Title X of the Public Health Service Act, the Nation's only
program dedicated to family planning. As the committee works on the
fiscal year 2019 appropriations bill, NFPRHA respectfully requests that
you make a critical investment in Title X by including $327 million for
the program and that you include language reinforcing the program's
principal role supporting providers to serve as essential health access
points for contraceptive care and related preventive services in
communities across the country. Doing so would help make progress to
restore the capacity of the program to serve those in need.
Publicly funded family planning services are provided through
State, county, and local health departments; hospitals; family planning
councils; Planned Parenthoods; federally qualified health centers; and
other private nonprofit organizations. These diverse provider networks
help millions of poor and low-income individuals as well as those who
are underinsured or uninsured receive access to high-quality
contraceptive care and other preventive health services in all 50
States, the District of Columbia, and U.S. territories.
An analysis published in the American Journal of Public Health in
January 2016 found that Title X would need to be supported with
approximately $737 million in order for all low-income, uninsured women
of reproductive age to access family planning services. It's also
important to note that the Title X program also supports men, so the
resource needs identified in the analysis are conservative. The fiscal
year 2018 omnibus provided $286.5 million for the program, which is
just a fraction of what is needed.
The Title X network will continue to play an essential role in our
Nation's service delivery framework regardless of how the healthcare
economy evolves. ``Churning'' and confidentiality issues, for example,
play a role in keeping some individuals uninsured or unable to use the
coverage they have for the full range of their family planning needs.
Furthermore, the demand for Title X clinical services is likely to
increase. As the Centers for Medicare & Medicaid Services approves new
conditions that create potential obstacles for beneficiaries to receive
coverage under State Medicaid programs, such as premiums and other
cost-sharing requirements, these displaced individuals may turn to
Title X health centers to receive their care.
More importantly, Title X-funded health centers, because of the
high quality and specialty care they provide, remain in demand for
individuals regardless of their payer source. The existing Title X-
funded provider network follows the nationally recognized clinical
standards for family planning care, known as Providing Quality Family
Planning Services (QFP), which draws on other nationally recognized
clinical guidelines and was jointly developed by the Office of
Population Affairs and the Centers for Disease Control and Prevention
(CDC) in 2014. While the administration removed all requirements for
and references to the QFP in the recent funding opportunity
announcement, high-quality contraceptive care and related preventive
services will remain a hallmark for tenured providers despite the
additional financial strain that will result if the administration is
successful in its effort to shift Title X funding toward agencies
focused on behavior change rather than clinical care.
Unfortunately, Title X, similar to other publicly funded health
programs, has suffered budget cuts and flat funding for the last
several years despite rising patient need. Between fiscal year 2010-
2014, the Title X family planning program was cut a net $31 million
(-10 percent), even though the number of women in need of publicly
funded contraceptive services and supplies rose 5 percent in that
period. Those funding cuts have not been restored. These findings are
very disturbing given that six in ten women who access care at a Title
X-funded health center say that it is their primary source of care. In
fiscal year 2019, the financial challenge looks no less dire for health
centers.
As appropriators grapple with how best to distribute limited
Federal resources, NFPRHA encourages the committee to continue to
prioritize investments in programs, including Title X, that focus on
outcomes and which provide a significant return on investment. Millions
of low-income people depend on the Title X program for affordable
access to the panoply of family planning services it supports,
including contraceptive care, breast and cervical cancer screenings,
STD testing and treatment, and HIV prevention services that help them
stay healthy. However, politically motivated attacks are jeopardizing
the Title X program's ability to help these vulnerable individuals and
families. NFPRHA urges the committee to reverse this trend by
reiterating congressional intent that Title X supports access to
complete, medically accurate, high-quality clinical family planning and
sexual health services and making a significant investment in the
Nation's family planning safety net by appropriating $327 million for
Title X in fiscal year 2019.
* * *
NFPRHA appreciates the opportunity to provide this testimony. If
you require additional information about the issues raised in this
letter, please contact Lauren Weiss, Manager, Advocacy &
Communications, at [email protected].
Sincerely.

[This statement was submitted by Clare Coleman, President & CEO,
National Family Planning & Reproductive Health Association.]
______

Prepared Statement of the National Head Start Association
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee: On behalf of the Head Start community, thank you for the
opportunity to submit written testimony regarding funding for Head
Start and Early Head Start (collectively ``Head Start'') in fiscal year
2019. The National Head Start Association (NHSA) respectfully requests
that the Subcommittee allocate $10,810,095,000 for programs within the
Office of Head Start.
Tremendous thanks are also due to this Subcommittee and the entire
Congress for continued significant and sustained support for early
childhood education. I have received appreciation from Head Start
programs from coast-to-coast and as far away as Alaska and Puerto Rico
for your efforts to bolster our workforce, expand duration, and support
Head Start programs recovering from the 2017 hurricane season. While
work remains, these efforts have not and will not be forgotten.
In building on the meaningful fiscal year 2017 and fiscal year 2018
investments, the Head Start community has four distinct funding
recommendations for the coming fiscal year and a request for
congressional assistance in resolving an acknowledged regulatory flaw.
These investments include additional resourcing in: (1) support of the
workforce, (2) locally directed quality improvement funds; and (3) a
continued commitment to extending the duration of services. Unique to
this year, NHSA also requests needed funds ($250,000,000) to support
programs grappling with opioid and substance abuse. Finally, while the
Head Start Program Performance Standards (HSPPS) have ushered in many
excellent changes, a flaw in the evaluation process for Designated
Renewal System (DRS) has unfortunately snagged and crippled solid,
well-performing programs. Each of these priorities is further discussed
below:
(1) Support Quality Workforce: Within the sum provided, NHSA
recommends the allocation of $233,600,000 (including $16,600,000 for
Early Head Start-Child Care Partnership grantees) in fiscal year 2019
for Workforce Investments through a cost-of-living adjustment in line
with the Consumer Price Index-Urban.
The Head Start workforce is at the core of Head Start's success.
Without home visitors, teachers, family service workers, education
coordinators, and all those who create the vibrant, successful programs
within communities across the country, Head Start simply would not
thrive. Without adequate investment in our workforce, Head Start will
continue to suffer from detrimental rates of staff turnover as quality,
dedicated staff leave for jobs that can better support their families.
The outcomes that Head Start creates for children and families is
inextricably tied to programs' ability to retain and develop quality
staff, and it is the Head Start community's hope that this importance
is reflected by the Subcommittee's fiscal year 2019 funding decisions.
(2) Promote Quality Improvement: To complement workforce
investments and the expansion of services and duration, NHSA recommends
that $339,500,000 be allocated for Quality Improvement Funds (QIF) in
fiscal year 2019.\1\ As outlined in the 2007 Head Start Act, these
funds may be used for increasing duration of services to better support
working families, train staff, improve community-wide coordination,
enhance classroom environments, and strengthen transportation safety.
In fiscal year 2019, these funds would serve to meet the already
existing needs of Head Start programs across the country while
providing the flexibility to address local priorities.
---------------------------------------------------------------------------
\1\ Per the Head Start Act, funds appropriated to Head Start should
include no less than 4.5 percent set aside for Migrant and Seasonal
programs, and no less than 3 percent for American Indian/Alaska Native
programs.
---------------------------------------------------------------------------
While programs must meet the same rigorous bar of quality and
common threads of continuous quality improvement run throughout the
community, no two Head Start programs are alike. Each program must
adapt its services to meet the unique needs of its communities and
families. Similarly, Federal support and funds must also include
adequate flexibility for programs to invest in critical, local
priorities. QIF was authorized with this exact purpose in mind. In
Alabama, for example, St. Clair County Head Start seeks to use QIF to
support infrastructure investments. In addition to the stellar services
it provides directly to children and families, this rural Head Start
program offers significant support to the surrounding area, such as
their partnership with a local automotive plant to provide
certification classes to parents to meet employment eligibility..
However, inadequate facility space limits success and keeps over 60
children on a waitlist for Head Start participation. In unique
instances such as these, to meet an acute need, QIF dollars could go a
long way.
(3) Extend Duration: For programs to meet the needs of working
families and fulfill the duration mandate by 2021, additional funding
will be needed in fiscal years 2019 and 2020.\2\ Based on the
information offered in the regulatory impact analysis done by the
Office of Management and Budget, NHSA recommends an increase of
$374,000,000 in fiscal year 2019 to make necessary progress towards
meeting the requirement. In 2016, revised HSPPS called for the
extension of the duration of classroom hours, based on strong research
evidence. In fiscal year 2016 and fiscal year 2018, Head Start received
increased funding to better serve working families through extended
duration of services. The fiscal year 2016 extended duration funds
($294,000,000) were met with overwhelming interest and appreciation by
programs across the Nation, as is expected when the fiscal year 2018
extended duration grants become available.
---------------------------------------------------------------------------
\2\ 45 CFR Chapter XIII RIN 0970-AC63 Head Start Program
Performance Standards, Preamble Part II.
---------------------------------------------------------------------------
(4) Addressing Substance Abuse and Addiction: Separate and apart
from the NHSA fiscal year 2019 Head Start Recommendation is an fiscal
year 2019 request for specific assistance to respond to the tremendous
challenge of opioid, methamphetamine, and prescription drug abuse.
Because of Head Start's unique whole family and multi-generational
model, Congress should leverage the interwoven relationship between
families and Head Start staff, the current on-the-ground efforts, and
long-trusted embedded services, with an fiscal year 2019 Office of Head
Start investment of $250,000,000 to combat the scourge of opioid,
addiction, substance abuse, and Neonatal Abstinence Syndrome (NAS)--
affecting children and families across the Nation. These funds will
provide additional resources for more than 20,000 children and their
families in existing Head Start programs.
Head Start grantees, particularly those in severely impacted opioid
regions, need training and programming support to identify signs of
home drug use, respond to children exhibiting increased developmental
and behavioral challenges, and skills to intervene with families and
children grappling with the many dimensions and tragedies of opioid
addiction. Examples of successful interventions and partnerships led by
Head Start exist in communities across the country--such as the
targeted home-visiting program at Meeting Street in Boston or the
Allentown, Pennsylvania based SafeStart which serves children who are
born suffering from NAS and their families by providing high-impact
child-teacher ratios, treatment transportation, routine home visits,
and specialized mental health and addiction counseling for the whole
family.
Other Head Start programs have seen similar impacts of opioids and
addiction on their communities, but lacking local or philanthropic
resources are unable to recreate similar models. Central Missouri
Community Action in Osage County, is a prime example of this. This
highly-regarded, rural area Head Start program serves children and
families impacted by substance misuse and addiction, but currently is
unable to tailor care to adequately respond. With additional funds,
however, they would be able to expand trainings and supports for home
visitors to spot the signs of substance abuse and follow reporting
protocols. Further, additional funds could be used to establish a
family-focused, trauma-informed mental health program.
With such targeted funding, Head Start can help reduce the societal
costs of drug abuse by supporting the healthy development of drug-
exposed children, helping these children ``catch-up'' to their peers
while providing interventions for parents and families. Intervention at
these early stages can provide real opportunities for these children
and their families to succeed while simultaneously resulting in
monumental societal cost savings in the judicial, child welfare, and
education systems. Based on input and insight from Head Start programs
across the Nation, NHSA will be releasing a report later this summer
that details the role Head Start is currently playing and with
additional supports and resources, could play in supporting children
victimized by opioids. We look forward to sharing this document with
Congress soon.
Head Start programs in communities across the country routinely
face hard choices, pitting necessary investment in staff against
increasing enrollment against implementing further quality
improvements. These investments in fiscal year 2019 will allow local
programs to make critical improvements while also expanding services to
more children and extending hours based on community needs.
(5) DRS Ten Percent Provision Reform: Authorized in 2007 and first
implemented in 2011, the Designated Renewal System (DRS) was intended
to strengthen Head Start. While DRS overall has been welcomed by the
Head Start community and is considered to be successful, one specific
provision--the lowest 10 percent provision of the CLASS condition--has
been found to be ineffective and continues to unfairly burden Head
Start programs. Following the previous Administration's report in
November 2016 detailing flaws in the `lowest ten percent' provision of
the CLASS condition, the current Administration released a December
2017 ``Request for Comments'' to adjust the condition. NHSA submitted
comments, which were signed by more than 3,250 programs, organizations,
and individuals, encouraging the Administration to quickly amend DRS
before any additional grantees are unfairly impacted. While the Head
Start community appreciates the Administration's leadership in
recognizing flaws in the DRS rubric, the pace of correction is
worrisome. NHSA encourages the Congress to continue to pressure the
Administration to resolve this issue before additional programs are
evaluated using a flawed system.
In closing, the Head Start community understands the challenges
that the Subcommittee faces in the fiscal year 2019 appropriations
process, and we are deeply grateful for the commitment shown by
Congress to keep early learning, and Head Start in particular, a
priority. fiscal year 2018 provided remarkable funding, support, and
stabilization and the Head Start community is grateful. We agree that
sound investment in children today will lead to the success and
betterment of our Nation for generations to come. As an established
vehicle of change for entire families, Head Start represents an
unparalleled opportunity for Congress to invest in our country's
children, families, and future, and NHSA looks forward to working
closely with the Subcommittee to realize this opportunity.
Sincerely.

[This statement was submitted by Yasmina Vinci, Executive Director,
National Head Start Association.]
______

Prepared Statement of the National Indian Child Welfare Association
The National Indian Child Welfare Association (NICWA), located in
Portland, Oregon, has over 35 years of policy experience advocating on
behalf of American Indian and Alaska Native (AI/AN) children in child
welfare and children's mental health systems. Thank you for the
opportunity to provide fiscal year 2019 budget recommendations for
child welfare and children's mental health programs administered by the
Department of Health and Human Services (DHHS). Our full
recommendations appear in the charts below with our priority
recommendations described in more detail underneath the charts.

Child Welfare
----------------------------------------------------------------------------------------------------------------
Fiscal year 2018 Fiscal year 2019
Agency Program enacted recommended
----------------------------------------------------------------------------------------------------------------
DHHS Promoting Safe and Stable Families-- $99 million \1\ $110 million \2\
ACF/CB Discretionary (Tribal) ($1.8million) ($2.1million)
Tribal Court Impro($1.0 million) ($3.0 million)
rrrrrrrrrrrrrrrrrrr
DHHS Child Abuse Discret$33.0m Activities $38.0m
ACF/CB (Tribal) (unknown) (unknown)
rrrrrrrrrrrrrrrrrrr
DHHS Community-Based Chi$39.7mse Prevention $50m
ACF/CB (Tribal) ($416k) (estimated $500k)
rrrrrrrrrrrrrrrrrrr
DHHS Child Welfare Serv$268.7m $268.7m
ACF/CB (Tribal) ($6.3m) (estimated $6.3m)
rrrrrrrrrrrrrrrrrrr
DHHS Maternal Infant & Early Childhood Home $400m $420m
Visiting
HRSA Program (Tribal) ($12m) ($12.6m)
----------------------------------------------------------------------------------------------------------------
\1\ Includes $40 million of new funds with $20 million designated for Kinship Navigator Programs and $20 million
for Substance Abuse Grants (competitive grants for Tribes and States). Discretionary funding for Promoting
Safe and Stable Families programs remains at fiscal year 2017 level of $59 million ($1.8 million for tribes).
\2\ Recommended increase for fiscal year 2019 is dedicated to Promoting Safe and Stable Families discretionary
funding for States and Tribes (not Kinship Navigator and Substance Abuse grants). Only by increasing
discretionary funds does tribal funding increase under this program.

priority recommendations
Promoting Safe and Stable Families recommendation (Title IV-B,
Subpart 2-Discretionary Portion): Increase discretionary funding under
this program to $70 million (not including Kinship Navigator and
Substance Abuse grants at $40 million) to provide additional access to
tribes who are currently not eligible to apply for these funds based
upon the current eligibility criteria that are tied to the funding
formula, and increase tribal court improvement funding to $3 million.
The Promoting Safe and Stable Families Program provides funds to
tribes for coordinated child welfare services that include family
preservation, family support, family reunification, and adoption
support services. This program has a mandatory capped entitlement
appropriation as well as a discretionary appropriation. There is a 3
percent set-aside for tribes under each program. All tribes with
approved plans are eligible for a portion of the set-aside that is
equal to the proportion of their member children compared to the total
number of member children for all tribes with approved plans. Based on
this formula, tribes who would qualify for less than $10,000 are not
eligible to receive any funding. This means that many tribes, typically
those tribes that are most in need, cannot access it because the
overall appropriation is currently too low. Out of the 567 federally
recognized tribes, over 100 tribes have no access to these funds.
Tribal systems endeavor to reduce out-of-home placements whenever
possible, saving children and their families additional trauma and
helping States with services to Native families under their
jurisdiction. Native children in State child welfare systems are three
times more likely to be removed from their homes-as opposed to
receiving family preservation services-than their non-Native
counterparts.\1\ Tribes are providing intensive family preservation and
family reunification services in spite of inadequate funding and
insufficient staffing, which is putting incredible strain on individual
workers and programs.\2\ New prevention services funding under Title
IV-E will help a small portion of tribes, typically those that already
receive Promoting Safe and Stable Funding, but many smaller tribes do
not have access to Title IV-E and rely on these kinds of funds to
reduce out of home placements and stabilize families.
---------------------------------------------------------------------------
\1\ Hill, R. B. (2008). An analysis of racial/ethnic
disproportionality and disparity at the national, State, and county
levels (p. 9). Seattle, WA: Casey Family Programs, Casey-CSSP Alliance
for Racial Equity in Child Welfare, Race Matters Consortium Westat.
\2\ National Child Welfare Resource Center for Tribes. (2011).
Findings from the national needs assessment of American Indian/Alaska
Native child welfare programs (p. 23). Retrieved from nrc4tribes.org/
files/NRCT%20Needs%20Assessment%20Findings_APPROVED.pdf.
---------------------------------------------------------------------------
The Promoting Safe and Stable Families Program offers support for
culturally based services that tribes already have experience with,
such as parenting classes, home visiting services, and respite care for
caregivers of children. This program is vital to the tribes that depend
on it to support efforts to prevent the unnecessary removal of AI/AN
children from their homes.
Tribes are also eligible to apply for the Tribal Court Improvement
Program, a competitive grant program authorized under Promoting Safe
and Stable Families. This program is authorized for $30 million of
mandatory funding plus 3.3 percent of all discretionary funds. A $1
million tribal set-aside was created in the 2011 Child and Family
Services Improvement and Innovation Act, Public Law No. 112-34 (2011).
Five tribal court improvement project grantees are currently funded
under this program. They are using these funds to strengthen their
family courts and better integrate the work of their courts with their
child welfare systems and with their State court partners who serve
Native children and families under their jurisdiction.
Child Abuse Discretionary Activities, Innovative Evidence-Based
Community Prevention Program: Increase overall appropriations to $38
million to account for tribes' recent eligibility for these funds
through a competitive grant process.
Child Abuse Discretionary Activities, including the Innovative
Evidence-Based Community Prevention Program, support a variety of
activities including research and demonstration projects on the causes,
prevention, identification, assessment, and treatment of child abuse
and neglect, and the development and implementation of evidence-based
training programs. In 2010, tribes were provided access to this program
through a competitive grant process that includes States and other
entities, but appropriation levels did not increase to account for the
expanded pool of grant applicants. The majority of entities that have
historically received funding are universities and research hospitals,
rather than tribes or entities with tribal partners.
An accurate understanding of successful child abuse and neglect
interventions for Native families allows child abuse prevention
programs to target the correct issues, provide the most effective
services, and allocate resources wisely. Although promising practices
for child protection, child abuse prevention, and trauma-informed child
welfare services exist throughout Indian Country, not enough
information is available on the implementation and effectiveness of
these programs to make them easily replicable.\3\
---------------------------------------------------------------------------
\3\ U.S. Department of Justice, Office of Justice Programs, Office
of Juvenile Justice and Delinquency Prevention. (2014). Attorney
General's Advisory Committee on American Indian/Alaska Native Children
Exposed to Violence: Ending violence so children can thrive (p. 81).
Retrieved from www.justice.gov/sites/default/files/defendingchildhood/
pages/attachments/2014/11/18/finalaianreport.pdf.
---------------------------------------------------------------------------
The Child Abuse Discretionary Activities Program is the only
funding available to help tribes engage in the research necessary to
test treatment and interventions. The surest way to effectuate this
recommendation is to provide funding under the Child Abuse
Discretionary Activities Program that supports tribal access to these
funds.

Children's Mental Health
----------------------------------------------------------------------------------------------------------------
Fiscal year 2018 Fiscal year 2019
Agency Program enacted recommended
----------------------------------------------------------------------------------------------------------------
DHHS Programs of Regional and National $7.2 million $7.2 million
SAMHSA Significance--Childr(no funds reserved (Reserve $6.5m for Circles
Programs (includes Circles of Care) for Circles of Care) of Care)
rrrrrrrrrrrrrrrrrr
DHHS Children's Mental H$125m Services $125m
SAMHSA Program-- (no funding (Reserve funding for State
Systems of Care reserved for State and Tribal children's
mental
or Tribal System of health grants)
Care grants)
rrrrrrrrrrrrrrrrrr
DHHS GLS State/Tribal Youth Suicide $35.4m $40.5m
SAMHSA Prevention
(Tribes receive portion of grant funds)
rrrrrrrrrrrrrrrrrr
DHHS GLS Campus Suicide Prev$6.5mn $9.1m
SAMHSA Program
rrrrrrrrrrrrrrrrrr
DHHS AI/AN Suicide Prevention $2.9m $4.0m
SAMHSA
rrrrrrrrrrrrrrrrrr
DHHS Tribal Behavioral Health Grant $30m $50m
SAMHSA (divided between substance abuse
prevention and mental health services)
----------------------------------------------------------------------------------------------------------------

Programs of Regional and National Significance, Children and Family
Programs (includes Circles of Care): Ensure that $6.5 million under
this line item continues to be reserved specifically for the tribal and
urban Indian community Circles of Care program in fiscal year 2019.
The Children and Family Programs under Programs of Regional and
National represents funds allocated to support the tribal Circles of
Care program. Circles of Care is a competitive grant program
exclusively for Tribal communities. It is the cornerstone of tribal
children's mental health programming.
Circles of Care is a 3-year planning grant that helps communities
design programs to specifically serve AI/AN children with serious
behavioral health issues. Specifically, Circles of Care funds the
development of the tribal capacity and infrastructure necessary to
support a coordinated network of holistic, community-based, mental and
behavioral health interventions in tribal communities.
Circles of Care is one of only two SAMHSA programs that allow
tribes and tribal organizations to apply for funding without competing
with other governmental entities (States, counties, or cities). There
are currently 11 communities receiving Circles of Care funding.
AI/AN children and youth face a ``disproportionate burden'' of
mental health issues while simultaneously facing more barriers to
quality mental healthcare.\4\ Since its inception in 1998, the Circles
of Care program has affected 49 different tribal and urban Indian
communities. These programs have been incredibly successful. The
majority of tribes who have received these grants have created long-
term, sustainable systems of care for their children.
---------------------------------------------------------------------------
\4\ American Psychiatric Association. (2010). Mental health
disparities factsheet: American Indians and Alaska Natives (p. 4).
---------------------------------------------------------------------------
Of the 31 total graduated Circles of Care grantees, 12 have
obtained direct funding to implement their system change efforts
through System of Care (SOC) grants, and four others have partnered
with other SOC grantees to implement their models. The others have
developed various alternative strategies to operationalize and sustain
their system change plans to care for youth with mental health
challenges.
Children's Mental Health Initiative (Systems of Care): Continue
funding at $125 million to allow for continued support of the current
4-year grantees and funding of new grantees in fiscal year 2019. We are
asking for Congress to specify that these funds must be used for System
of Care grants for States and Tribes.
The children's mental health initiative supports the development of
comprehensive, community-based ``systems of care'' for children and
youth with serious emotional disorders. This includes funding for 1
year System of Care Expansion Planning Grants, 4-year System of Care
Expansion Implementation Grants, and 6-year Children's Mental Health
Initiative System of Care Grants. AI/AN communities are eligible for,
and recipients of, each of these grants, but must compete with non-
tribal applicants to receive these funds.
Children's Mental Health Initiative System of Care Grants support a
community's efforts to further plan and implement strategic approaches
to mental health services. These approaches are based on important
principles: they must be family-driven; youth-guided; and meet the
intellectual, emotional, cultural, and social needs of children and
youth. Since 1993, 180 total projects have been funded, dozens of which
have been in tribal communities. Currently, 12 tribal communities are
funded.
Evaluation studies of System of Care have indicated return on
investment from cost-savings in reduced use of in-patient psychiatric
care, emergency room care, and residential treatment even when other
community- or home-based care is provided. There are also cost savings
from decreased involvement in juvenile justice systems, fewer school
failures, and improved family stability.\5\
---------------------------------------------------------------------------
\5\ Stroul, B. (2015). Return on investment on System of Care for
children with behavioral health challenges: A look at wraparound. The
TA Telescope, 1(2), pp. 1-2.
---------------------------------------------------------------------------
Programs of Regional and National Significance, Tribal Behavioral
Health Program: Increase funding for the Tribal Behavioral Health
program (mental health and substance abuse prevention programs) to $50
million in fiscal year 2019.
In the fiscal year 2018 Consolidated Appropriations Act, Tribal
Behavioral Health Grants were funded at $30 million ($15 million in the
Mental Health appropriation and $15 million in the Substance Abuse
Prevention appropriation). NICWA recommends $50 million in fiscal year
2019 to continue to address the expansion of suicide prevention, mental
health, and substance abuse activities for Native communities.
These are to be competitive grants designed to target tribal
entities with the highest rates of suicide per capita over the last 10
years. These funds must be used for effective and promising strategies
to address the problems of substance abuse and suicide and promote
mental health among AI/AN young people.
AI/AN young people are more likely than other youth to have an
alcohol use disorder. In 2007, 8.5 percent of all AI/AN youth struggled
with alcohol use disorders compared to 5.8 percent of the general youth
population.\6\ Although these statistics are troubling, with adequate
resources tribes are best able to serve these young people and help
them heal before they reach adulthood:
---------------------------------------------------------------------------
\6\ U.S. Department of Justice, Office of Justice Programs, Office
of Juvenile Justice and Delinquency Prevention. (2014). Attorney
General's Advisory Committee on American Indian/Alaska Native Children
Exposed to Violence: Ending violence so children can thrive (p. 81).
Retrieved from www.justice.gov/sites/default/files/defendingchildhood/
pages/attachments/2014/11/18/finalaianreport.pdf.
---------------------------------------------------------------------------
There is growing evidence that Native youth who are culturally and
spiritually engaged are more resilient than their peers. Research has
revealed that 34 percent of Native adolescents preferred to seek mental
or substance abuse services from a cultural- or religious-oriented
service provider. In other research, American Indian caregivers
preferred cultural treatments (e.g., sweat lodge, prayer) for their
children and found the traditionally based ceremonies more effective
than standard or typical behavioral health treatment.\7\
---------------------------------------------------------------------------
\7\ Novins, D. K., & Bess, G. (2011). 10. Systems of mental
healthcare for American Indian and Alaska Native children and
adolescents. In P. Spicer, P. Farrell, M. C. Sarche, & H. E. Fitzgerald
(Eds.), American Indian and Alaska Native children and mental health:
Development, context, prevention, and treatment. Santa Barbara, CA:
SABC-CLIO, LLC.
---------------------------------------------------------------------------
______

Prepared Statement of the National Indian Education Association
Dear Chairman Blunt:
On behalf of the National Indian Education Association (NIEA), I
respectfully submit the following comments in response to the
President's fiscal year 2019 Budget Request for programs that impact
Native students.
NIEA is the most inclusive national organization advocating for
improved educational opportunities for American Indian, Alaska Native,
and Native Hawaiian students. Our mission is to ensure that Native
students have access to a high-quality academic and cultural education,
a goal that is only possible if Congress upholds the Federal trust
responsibility to tribes.
the federal trust relationship
Congress has a Federal trust responsibility for the education of
Native students. Established through treaties, Federal law, and U.S.
Supreme Court decisions, the Federal Government's trust responsibility
to tribes includes the obligation to provide parity in access and equal
resources to all American Indian and Alaska Native students, regardless
of where they attend school. The Federal trust responsibility is an
obligation shared between the Congress and the Administration for
federally-recognized tribes.
niea's specific requests
NIEA's budget requests for 2019 are outlined below:
ESSA Title VI: Indian Education Formula Grants
Provide $198 million for Title VI, Part A. An increase of $92.7
million above fiscal year 2018 enacted. Authorized funding for Title
VI, Part A for fiscal year 2018 is $105.3 million. Increases are needed
as this critical grant funding is designed to supplement the regular
school program and assist Native students so they have the opportunity
to achieve the same educational standards and attain parity with their
non-Native peers.
--Title VI funds support early-childhood and family programs,
academic enrichment programs, curriculum development,
professional development, and culturally-related activities.
ESSA Title VI, Part A, Subpart 2: Special Programs and Projects to
Improve Educational Opportunities for Indian Children
Provide $67.9 million for Title VI, Part A, Subpart 2: Special
Programs and Projects to Improve Educational Opportunities for Indian
Children. An increase of $10 million above fiscal year 2018 enacted.
--ED's Native Youth Community Projects initiative provides better
comprehensive, community-driven strategies to improve college
and career-readiness of Native youth.
ESSA Title VI, Part A, Subpart 3: Language Immersion and National
Activities
Provide $10 million for Title VI, Part A, Subpart 3. An increase of
$3.1 million above fiscal year 2018 enacted.
--Native language funding is critically important to tribes and
Native communities across the country. The research supporting
Native language funding is clear and the investment in the
National Activities fund a will support the critical building
block of Native languages for our students.
ESSA Title VI, Part B: Native Hawaiian Education Program
Provide $36.4 million Title VI, Part B. Level with the fiscal year
2018 appropriation.
--The Native Hawaiian Education program empowers innovative
culturally appropriate programs to enhance the quality of
education for Native Hawaiians. When establishing the Native
Hawaiian Education Program, Congress acknowledged the trust
relationship between the Native Hawaiian people and the United
States.
ESSA Title VI, Part C: Alaska Native Education Equity Assistance
Program
Provide $36.4 million for Title VI, Part C. An increase of $1.1
million over the 2018 enacted.
--This funding is crucial to closing the gap between Alaska Native
students and their non- Native peers as eligible activities
include professional development for educators, activities
carried out through Even Start programs and Head Start
programs, family literacy services, and dropout prevention
programs.
ESSA Title VII: Impact Aid
Provide $2 billion for Title VII. An increase of $589 million above
fiscal year 2018 enacted.
--Impact Aid provides direct payments to public school districts as
reimbursement for the loss of traditional property taxes due to
a Federal presence or activity, including the existence of an
Indian reservation.
--With nearly 93 percent of Native students enrolling in public
schools, Impact Aid provides essential funding for schools
serving Native students.
HEA Title III: Tribal Colleges and Universities: Supporting Financially
Disadvantaged Students
Provide $65 million ($35 million in discretionary funding and $30
million in mandatory funding) for Title III-A grants under the Higher
Education Act for Tribal Colleges and Universities. An increase of $5.3
million above the fiscal year 2018 enacted.
--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 accredited TCUs serve Native and
non-Native students in some of the most impoverished areas in
the Nation.
HEA Title III: Tribal Colleges and Universities: Adult/Basic Education
Provide $8 million for American Indian Adult/Basic Education at
Tribal Colleges and Universities, from existing funds appropriated for
State block grant funding. No such set- aside from existing funds
included in fiscal year 2018 enacted.
--Despite an absence of dedicated funding, TCUs must find ways to
continue to provide basic adult education classes for those
American Indians that the present K-12 Indian education system
has failed.
Perkins: Tribally Controlled Post-Secondary Career and Technical
Institutions
Provide $10 million for postsecondary career and technical
institutions program funds under Carl Perkins Technical and Career
Education Act. An increase of $1.7 million above fiscal year 2018
enacted.
--Section 117 of the Carl Perkins Career and Technical Education
Improvement Act authorizes funding for operations at tribally-
controlled postsecondary career and technical institutions.
--Vocational education/training programs are very expensive to
conduct, but are vital to preparing a future workforce that
will operate safely and efficiently contributing greatly to the
global economy.
conclusion
Through these recommendations on the fiscal year 2019 Budget
Request for Indian programs, NIEA looks forward to working with the
Chairman to pass a budget that serves the unique needs of the only
students that the Federal Government has a direct responsibility to
educate--Native students. If you have any questions, please contact
Matt de Ferranti, NIEA's Legislative Director, at [email protected].
Sincerely.

[This statement was submitted by Ahniwake Rose, Executive Director,
National Indian Education Association.]
______

Prepared Statement of the National Indian Head Start Directors
Association and the National Migrant and Seasonal Head Start
Association
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
On behalf of the National Indian Head Start Directors Association
(NIHSDA) and the National Migrant and Seasonal Head Start Association
(NMSHSA), we are writing to urge you to provide increased funding for
Indian Head Start and Migrant and Seasonal Head Start in fiscal year
2019. With the $2.2 billion increase allocated for the Labor-HHS-
Education account in fiscal year 2019, the Senate Appropriations
Committee has the opportunity to provide urgently needed investment in
these programs.
Background.--Congress authorized Indian Head Start and Migrant and
Seasonal Head Start in response to the unique needs of American Indian
families and farmworker families. In so doing, Congress committed the
Federal Government to ensuring that Head Start benefits are extended to
all of our Nation's children. Both Indian Head Start and Migrant and
Seasonal Head Start were established as national programs and to this
day both are administered by the Office of Head Start within the
Department of Health and Human Services.
Since its inception in 1965, Indian Head Start has played a
critical role in providing American Indian and Alaska Native children
with a strong foundation for life-long academic achievement and
personal resiliency. Its strength is rooted in a two-generational model
of early childhood development that responds to the unique needs of
children and their families. It does this through a highly effective
program model that encompasses the whole child, family, and community--
through education, health, language, and culture--to create a vibrant
and nurturing learning environment. Because of this holistic approach,
Indian Head Start is currently the most successful Federal program
focused on Native early childhood education.
Similarly, since 1969, Migrant and Seasonal Head Start programs
have delivered comprehensive, high-quality Head Start to farmworker
families using a unique service delivery model that addresses the
demands of the agriculture labor market. This unique design allows
programs to operate seasonally to accommodate parents working in the
fields and packing houses. During peak agricultural seasons, for
example, programs operate up to 7 days a week for 8-14 hours per day.
Migrant Head Start is the only Head Start program that requires parents
to work in order to be eligible for services and about 80 percent of
the enrolled households have both parents working in agriculture. Local
childcare resources are often not available when farmworker families
arrive to new worksites. Parents have few choices in these situations,
oftentimes arranging for unlicensed childcare or taking their children
with them to the fields, where they may be exposed to pesticides,
hazardous equipment, extreme heat, and other health dangers. Despite
working long hours in labor-intensive jobs, our parents are actively
engaged in their children's education and the operation of their Head
Start centers, which has contributed to the success of Migrant and
Seasonal Head Start programs.
Despite its documented accomplishments, only about 16 percent of
the age-eligible Native child population is enrolled in Indian Head
Start; and only 188 of 573 federally recognized tribes operate Indian
Head Start programs. This means that approximately 385 tribal nations
do not have direct access to these critical services. The numbers are
equally startling for Migrant and Seasonal Head Start programs working
to reach and serve families working in various sectors of agriculture
and often living in remote rural areas. Of the Native and farmworker
communities that do have Head Start programs, many are plagued by
inadequate classroom facilities, high staff turnover, cost-prohibitive
Federal in-kind contribution requirements, and culturally inappropriate
evaluation metrics. Strengthening and expanding programs through
increased Federal support is, therefore, paramount to continuing our
programs' success.
Base Funding of Head Start and Early Head Start Programs.--Together
with the National Head Start Association, we would like to express our
appreciation for Congress' commitment to providing all children with a
head start in life through the provision of high-quality early
childhood education. To continue to serve the dire and ever-increasing
needs of American working and low-income families, we recommend funding
Head Start and Early Head Start at $10,810,095,000 in fiscal year 2019.
Within this amount, we recommend the allocation of $339,500,000 for
Quality Improvement funding to support the implementation of the Head
Start Program Performance Standards issued in 2016. It is essential
that these funds be provided with flexibility, so programs are
empowered to address areas of greatest need, such as staff training,
integrating culturally and linguistically appropriate classroom
practices, increasing duration of services to support working families,
and strengthening transportation safety.
We also recommend the allocation of $233,600,000 for Workforce
Investments through a cost of living adjustment. Recruiting and
training qualified teachers is a persistent challenge for Indian Head
Start and Migrant and Seasonal Head Start programs, which are generally
located in remote or rural communities with limited economic
development opportunities. A cost of living adjustment is sorely needed
to retain qualified staff and effectively serve the children and
families enrolled in our programs.
Full Funding of the 3 Percent Set Aside for Indian Head Start and
the 4.5 percent Set Aside for Migrant and Seasonal Head Start.--Prior
to the reauthorization of the Head Start Act in December 2007, the Act
had a funding formula that established a 12 percent set aside for five
priority programs, including Indian Head Start. During the 2007
reauthorization process, the Department of Health and Human Services,
under questioning from congressional staff, divulged that 3--4 percent
of the 12 percent (essentially one-third of the set aside amount) had
been transferred away from the priority programs to supplement regional
Head Start programs. Congress's express set aside was effectively
reduced to 8--9 percent by unilateral and undisclosed administrative
action and, necessarily, the funding of the priority programs was
reduced as well.
To address this irregularity and assure that our programs could
recover financial ground, the 2007 Act provided for special expansion
funds for Indian Head Start and for Migrant and Seasonal Head Start. 42
U.S.C. Sec. 9835. The formula is very complicated and difficult to
parse, however, it essentially provided that both of our programs would
receive increases of up to $10 million per year for fiscal years 2008--
2010 for expanded enrollment so long as there was sufficient funding to
ensure that all Head Start programs received cost of living increases
(this was to ensure that there would be no loss of slots in regional
programs to make up for the unseen losses in our programs). Because of
flat funding in fiscal years 2008 and 2010, we only received special
expansion funds in fiscal year 2009. As a result, there has never been
real mitigation of Indian Head Start and Migrant and Seasonal Head
Start losses arising from the earlier diversion of priority program
funds.
All of this could change, however, if Congress acts now to provide
Indian Head Start with the full 3 percent set aside and Migrant and
Seasonal Head Start the full 4.5 percent set aside of Head Start
funding in fiscal year 2019. Section 640(a)(4)(D)(ii) of the 2007 Act
provides for special expansion funds of not less than 3 percent for
Indian Head Start programs, and not less than 4.5 percent for Migrant
and Seasonal Head Start programs, with an additional percentage
increase available at the Secretary's discretion. We have never
received our full set aside amounts. Taking advantage of the current
budget deal to fully fund the Indian Head Start and Migrant and
Seasonal Head Start set asides would help fulfill Congress's unfunded
mandate and set our programs on the long-overdue path towards parity
with our colleagues in regional Head Start.
Unique Challenges Facing Our Programs Warrant Additional Funding.--
Indian Head Start programs are deeply committed to serving Native
children, families, and communities who on a daily basis must deal with
depression-era economics, high rates of crime, limited educational
resources, and poor health outcomes. Migrant and Seasonal Head Start
programs are equally committed to ensuring that farmworker children and
families have access to first-rate, consistent educational services as
parents work to ensure that families across the country have access to
safe, secure and affordable food.
Both of our programs desperately need facilities and quality
improvement funds for staff training and development, staff retention,
improved classroom facilities, increased services, and other program
needs. We, thus, urge Congress to take advantage of this unique
opportunity in the Federal budgeting process to fully fund the 3
percent and 4.5 percent set asides for Indian Head Start and Migrant
and Seasonal Head Start, respectively, so that our programs can
continue to fulfill their critical role in developing youth resiliency
and strengthening entire families and communities.
On behalf of NIHSDA and the NMSHSA, we thank you for your continued
leadership in the Federal appropriations process. The members and staff
of the Senate Labor--HHS Appropriations Subcommittee have been and
continue to be strong allies of early childhood education. Please know
that NIHSDA and the NMSHSA stand ready to serve as a resource to you
and your staff on the unique needs of Indian Head Start and Migrant and
Seasonal Head Start. Thank you for your time and consideration of this
critical request.
Sincerely.

[This statement was submitted by Lee Turney, President, National
Indian Head Start Directors Ass'n, and Delia Garcia, Executive
Director, National Migrant & Season Head Start Ass'n.]
______

Prepared Statement of the National Indian Health Board
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, thank you for the opportunity to offer this written
testimony. On behalf of the National Indian Health Board (NIHB) and the
573 Tribal Nations we serve, I, Stacy A. Bohlen, CEO of NIHB, submit
this testimony on the fiscal year 2019 budget for the Department of
Health and Human Services (HHS).
Since the earliest days of the Republic, all branches of the
Federal Government have acknowledged the Nation's obligations to the
Tribes and the special trust relationship between the United States and
Tribes. In 2010, as part of the Indian Health Care Improvement Act,
Congress reaffirmed the duty of the Federal Government to American
Indians and Alaska Natives (AI/ANs), declaring that ``it is the policy
of this Nation, in fulfillment of its special trust responsibilities
and legal obligations to Indians--to ensure the highest possible health
status for Indians and urban Indians and to provide all resources
necessary to effect that policy.'' \1\ Though the Indian Health Service
(IHS) was established to help the Federal Government fulfill the trust
responsibility for health, Congress has never provided IHS with enough
funding to meet the needs of Indian Country. As a result of this
underfunding, historical trauma, and a Federal-State centric public
health system, AI/ANs suffer some of the worst health disparities in
almost every category. The Federal trust responsibility is the
responsibility of all government agencies, including others within HHS.
Agencies like the Centers for Disease Control and Prevention (CDC);
Substance Abuse and Mental Health Services Administration (SAMHSA); and
Centers for Medicare and Medicaid Services (CMS) all must ensure that
Tribes have access to preventative and direct health services.
NIHB would first like to thank the subcommittee for the efforts to
improve health for AI/ANs over the last several years. The inclusion of
a $50 million Tribal set aside in the State Targeted Response to Opioid
Grants as well as the $5 million Tribal set aside for the Medication
Assisted Treatment Program in the fiscal year 2018 Omnibus
Appropriations Act are critical investments that will enable Tribal
communities to make important progress when it comes to opioid use
disorder, prevention and treatment.
However, there is much work to be done. Generally speaking, Tribal
health systems are simply left out of many funding streams within HHS
for a variety of reasons. Federal block grants flow to States, leaving
little opportunity for Tribal governments to receive this funding.
Tribes are eligible to apply for many other Federal grants that address
public health and other issues, however, many of these programs have
little penetration into Indian Country because Tribes have difficulty
meeting the service population requirements, match requirements, or are
under resourced to apply for the grants. Generally speaking, funding
should flow through to Tribes on a recurring, formula basis, so that
Tribal health programs have funds they can count on from year to year.
centers for disease control and prevention
Preventive Health and Health Services (PHHS) Block Grant:
Public health infrastructure in Indian Country is one of the most
severely underfunded and under developed areas of the health service
delivery system. Like State and territorial governments, Tribes have
both the rights and responsibilities to provide vital public health
services for their communities. To do this, they must also have the
tools to carry out these functions. Establishing Tribal-specific
funding streams, scaled for impact, will allow Tribes to secure needed
funding and design and implement public health programs that meet the
specific needs of their Tribal citizens. Therefore, NIHB requests that,
in fiscal year 2019, Congress create base funding for Tribal
communities through the PHHS grant program by allocating at least 5
percent to Indian Tribes directly, annually.
Good Health and Wellness in Indian Country:
The President's fiscal year 2019 Budget request eliminated funding
for the Good Health and Wellness in Indian Country (GHWIC) program
(currently funded at $16 million). GHWIC is CDC's largest investment in
the wellbeing of American Indian and Alaska Natives. The twelve Tribes
and eleven Tribal organizations in the program have utilized community-
driven, culturally adapted strategies to improve public health in their
communities. GHWIC is a lifeline for these communities who would
otherwise have no public health investment. CDC has told Tribal leaders
on March 1, 2018 that they are replacing GHWIC with the proposed
``America's Health Block Grant.'' That funding has no indicated set
aside for Tribes or Tribal epi-centers so there is zero guarantee that
this funding would reach AI/AN communities. Instead, the Committee
should reject this elimination of GHWIC and double the size of the
program to $32 million in fiscal year 2019.
Public Health Emergency Preparedness:
The Public Health Emergency Preparedness (PHEP) Cooperative
Agreements at CDC provide base funding to States, territories and major
cities to upgrade their ability to respond to a public health crises.
But again, Tribal communities do not receive this funding directly, and
few, if any, see any support from their State programs. Failure to fund
Tribal communities will mean that large land areas of this country are
not covered for emergency infrastructure support, causing a domino
effect throughout the rest of the Nation when it comes to pandemics or
natural disasters. NIHB requests that Congress direct at least 5
percent of PHEP funds to Tribes so that they can develop comprehensive
and achievable response plans for public health crises.
substance abuse and mental health services administration
Nowhere is the issue of lack of solid infrastructure support more
acute than when it comes to mental and behavioral health services. AI/
AN children and communities grapple with complex behavioral health
issues at higher rates than any other population. Destructive Federal
Indian policies and unresponsive or harmful human service systems have
left AI/AN communities with unresolved historical and generational
trauma, leading to contemporary trauma.\2\
State Targeted Response to Opioid Grants (STR):
As noted above, Tribes were glad to see a $50 million Tribal set-
aside for the State targeted response to opioid grants in the fiscal
year 2018 Omnibus Appropriations Act. We request that the Committee
expand and improve this set-aside for fiscal year 2019. The CDC reports
that AI/ANs consistently had the highest drug overdose death rate by
race every year from 2008-2015, and the highest percentage increase in
drug overdose deaths from 1999-2015 at 519 percent.\3\ Therefore, we
believe that it is critical to provide at least a 10 percent Tribal set
aside for STR grants. With a larger pool of money, funding could also
be distributed in a formula basis, instead of competitive grants which
force Tribes to compete against each other.
Mental Health Service Block Grant:
Access to behavioral health services for AI/ANs would be improved
if Tribes had access to the Mental Health Service Block Grant. Without
this critical funding, comprehensive mental health services are not
reaching Tribal communities, though States are awarded these funds. IHS
has limited mental health funding, but has always been underfunded to
provide sustained mental health infrastructure. Congress should
dedicate funding to Tribes directly for the Mental Health Services
Block Grant.
Tribal Behavioral Health Grants (TBHG):
At SAMHSA, several programs specifically target Tribal communities.
TBHG is designed to address the high incidence of substance use and
suicide among AI/AN populations and it is a vital component of ensuring
that behavioral health challenges are addressed across Indian Country.
In fiscal year 2019, NIHB requests funding of $50 million for the TBHG
program.
Circles of Care:
The SAMHSA Circles of Care Program offers 3-year infrastructure/
planning grants and seeks to eliminate mental health disparities by
providing AI/AN communities with tools and resources to design and
sustain their own culturally competent system of care approach for
children. In fiscal year 2019, we recommend increasing Circles of Care
funding to $8.5 million.
Substance Abuse Block Grant:
The purpose of the SAMHSA Substance Abuse Block Grant (SABG) is to
implement activities to treat and prevent substance abuse throughout
the country. Few places have greater need than Indian Country when it
comes to these issues. However, SABG is operated by State governments,
which means that Tribal communities are often left out. We recommend
that the Committee allocate specific funding for SABG directly to
Tribal communities so that there can be sustained funding to help
address long-term substance abuse issues in Tribal communities.
centers for medicare and medicaid services
The Medicaid system is a critical lifeline in Tribal communities.
Moving Medicaid to a block grant system, as proposed in the President's
fiscal year 2019 Budget Request, will have major fiscal impacts on
Tribal health reimbursements, and would devastate Tribal health. This
puts an unequal burden on the IHS budget which is reliant on these
resources to make up for chronic funding shortfalls. We also urge
Congress to reinforce the trust responsibility of the Federal
Government and the unique political relationship between Tribes and the
Federal Government by exempting AI/ANs from any new burdens put on
Medicaid like work requirements. AI/ANs already have access to
healthcare through the IHS, so work requirements only serve to inhibit
the use of Medicaid in Tribal communities, and thereby increase
pressure on the IHS, which already is strained by chronic underfunding.
secretary's minority aids initiative fund
AI/AN communities face the lowest survival rates after an AIDS
diagnosis among all demographics, and one of the lowest rates of viral
suppression. SMAIF (Secretary's Minority AIDS Initiative Fund) is a
vital source of funding to improve HIV/AIDS prevention and treatment
initiatives in American Indian and Alaska Native (AI/AN) communities.
SMAIF dollars are the only source of HIV specific funding to the IHS,
supporting fifteen critical projects across Indian Country and
accounting for nearly 99 percent of all IHS HIV initiatives. From 2005
to 2016, IHS successfully increased prenatal HIV screening to 87
percent, and expanded its reportable quality of care metrics which led
to 80,000 AI/AN individuals receiving HIV screening for the first time.
Overall, IHS has improved HIV screening by 22 percent. These statistics
demonstrate the vital role that SMAIF dollars play in improving IHS'
HIV initiatives.
In fiscal year 2016, SMAIF was funded at $53.9 million, of which
$3.6 million was awarded to IHS via competitive grants. This funding
provided technical assistance and training to improve delivery of HIV
services at IHS, Tribal, and Urban Indian facilities, improved clinical
support for HIV care coordination, expanded HIV screening services,
bolstered HIV and sexually transmitted infection outreach and education
initiatives for AI/AN youth, and built the capacity of Tribal
communities to respond to new HIV infections and improve linkage to
care.
Currently, there is no guarantee that Indian Country receives SMAIF
dollars because IHS must compete with other Federal agencies for
awards. This poses a significant barrier for IHS, as unlike other
Federal agencies, it does not receive funds via congressional
appropriations from the separate Minority AIDS Initiative. NIHB
strongly urges the Committee to reauthorize SMAIF for fiscal year 2019
and establish a $5 million set aside for IHS to ensure that critical
HIV/AIDS prevention and treatment initiatives continue, and to ensure
that IHS is not forced to compete on an unfair playing field for these
vitally important dollars.
expansion of self-governance at hhs
For over a decade, Tribes have been advocating for expanding self-
governance authority to programs at HHS. Self-governance represents
efficiency, accountability and best practices in managing and operating
Tribal programs and administering Federal funds at the local level.
This proposal was deemed feasible by a Tribal/Federal HHS workgroup in
2011. Therefore, we request that the Appropriations Committee direct
HHS to enter into pilot projects for self-governance at the agency in
fiscal year 2019.
Thank you again for the opportunity to offer to participate in the
Public Witness Hearing for fiscal year 2019. As noted above, the
Federal trust responsibility for health extends beyond the IHS to all
agencies of the Federal Government. We thank the committee for the
efforts it has put forward to prioritize this issues at the Department
of Health and Human Services. Please do not hesitate to contact our
offices directly if you have any questions or if you require additional
information.
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\1\ 25 U.S.C. 1602
\2\ Braveheart, M. Y. A., & DeBruyn, I. M. (1998). The American
Indian Holocaust: healing historical unresolved grief. American Indian
and Alaska Native Mental Health Research, 8(2).
\3\ Mack KA, Jones CM, Ballesteros MF. Illicit Drug Use, Illicit
Drug Use Disorders, and Drug Overdose Deaths in Metropolitan and
Nonmetropolitan Areas--United States. MMWR Surveill Summ 2017;66(No.
SS-19):1--12. DOI: http://dx.doi.org/10.15585/mmwr.ss6619a1.
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______

Prepared Statement of the National Indian Youth Council, Inc.
The National Indian Youth Council, Inc. (NIYC) is grateful for this
opportunity to submit this statement urging the continuation of funding
for American Indians and Alaska Natives via the U.S. Department of
Labor's Division of Indian and Native American Program (DINAP) grants
under Section 166 of the Workforce Innovation and Opportunity Act
(WIOA). NIYC also would advocate that all WIOA programs receive the
same, at a minimum, funding amounts as they did in fiscal year 2018.
NIYC, a national nonprofit with 501(c) (3) tax status, has served
the interests of American Indians and Alaska Natives in this country
since the early 1960's. In 1974, NIYC began to focus a large part of
its programming efforts on ensuring that Native Americans, specifically
off-reservation Native people living in the State of New Mexico, had
access to employment and training services in order to fully
participate in the American workforce and provide economic security for
themselves and their families. Since the 70's, NIYC has received
employment and training program funding from the U.S. Department of
Labor's (DOL), Employment and Training Administration, beginning with
the former Comprehensive Employment and Training Act (CETA) program.
NIYC has continued to receive similar funding through the subsequent
programs, including the Job Training and Partnership Act, the Workforce
Investment Act, and now the Workforce Innovation and Opportunity Act.
Throughout all these changes, NIYC has been a top performing grantee
serving off-reservation Native Americans. The purpose of this program
is to ``support employment and training activities for Indian, Alaska
Native, and Native Hawaiian individuals in order to: (A) develop more
fully the academic, occupational, and literacy skills of such
individuals; (B) make such individuals more competitive in the
workforce and equip them with the entrepreneurial skills necessary for
successful self-employment; and (C) promote the economic and social
development of Indian, Alaska Native, and Native Hawaiian communities
in accordance with the goals and values of such communities.''
According to the 2000 U.S. Census, 64,434 off-reservation/urban
American Indian, Alaska Native, and Native Hawaiians live directly
within NIYC's designated WIOA service areas (which covers 31 of New
Mexico's 33 counties), with a total statewide population of
approximately 195,000 American Indian, Alaska Native, and Native
Hawaiians, roughly equivalent to 10 percent of the entire State's
population. Nationally, over 75 percent of the American Indian, Alaska
Native, and Native Hawaiian population lives outside of reservation
lands, with the higher concentrations occurring in cities and other
urban areas. This is largely a result of U.S. Government policy, namely
the Indian Relocation Act of 1956 (also known as Public Law 959), which
relocated many Native peoples to the cities. Prior to the 1950's, less
than 6 percent lived in urban areas. These relocation programs provided
up to four (4) weeks of support for people who agreed to relocate. Not
surprisingly, the programs were not successful. Relocated tribal
members became isolated from their communities and faced racial
discrimination and segregation. Many found only low-paying jobs with
little advancement potential, and suffered from the lack of community
support, and the higher expenses typical for urban areas.
In 2015, according to the New Mexico 2017 State of the Workforce
Report, ``Native Americans in New Mexico had a 16 percent unemployment
rate, compared to the overall State unemployment rate of 7.4 percent,
the highest of all racial and ethnic groups. As with all of New
Mexico's populations, American Indians faced large job losses during
the recession. What is more unique to American Indians is that
unemployment has been consistently high, even prior to the recession.''
Further, the report indicated that Native Americans in New Mexico had
the lowest labor force participation rate of any racial group in the
State, at just 56.1 percent compared to the overall State participation
rate of 58.4 percent. Statewide, the percentage of people living below
the poverty level in New Mexico, in 2015, was 20.4 percent, down from
21.3 percent in 2014, but still 5.7 percentage points higher than the
national average (14.7 percent). Among all States, only Mississippi had
a larger share of people living below the poverty level. In New Mexico,
approximately one-third (33 percent) of all Native Americans were
living below the poverty level.
workforce innovation and opportunity act
The DOL's Training and Employment Services (TES) programs exist to
provide employers with skilled and qualified workers to fill their
current and future openings and help Americans get and keep family-
sustaining jobs. The majority of the program activities are authorized
by the WIOA. Under TES, all WIOA programs serve as the primary vehicle
for helping adults with barriers to employment gain new skills and find
in-demand jobs in sectors that are projected to grow.
State operated WIOA Adult programs serve as the primary vehicle to
help adults with barriers to employment gain new skills and find in-
demand jobs in sectors that are projected to grow. However, these
programs are not culturally-sensitive, nor are they as successful in
reaching out to the Native populations with their multiple barriers to
employment.
Because of this, WIOA programming under Section 166, Indian and
Native American Programs, supports underemployed and unemployed Native
Americans pursuing improved job skills. Improving employees' skillsets
builds stronger workforces and ensures sustainable employment over
time. Programs funded by WIOA via DINAP offer training opportunities
for American Indian and Alaska Natives to earn a GED, learn computing
skills, and obtain certificates in specialized areas of various fields.
The training offered to participants is based on the current labor
market information determined by the various States and is designed to
satisfy future job opportunities. Like the programs operated by the
States, all qualifying U.S. Armed Services veterans and their spouses
are given priority in the services offered. WIOA's Section 166 program
supports employment and training activities specifically for American
Indians and Alaska Natives, serving over 32,000 unemployed,
underemployed, and under-skilled, low-income Native people annually.
Given the employment challenges and growing population in Indian
Country, targeted programs are essential to meeting the challenges of
today's economy.
fiscal year 2019 budget impact
Nationally, DOL's Indian and Native American Employment and
Training Program (section 166 grantees) currently funds 176 grants with
funding amounts ranging from $14,803 to $5,525,686 for the
Comprehensive Services Program (CSP) and $1,006 to $2,885,909 for the
Supplemental Youth Services Program (SYSP). For 2018, the DOL allocated
almost $50 million to Indian and Native American Programs and almost
$815 million for State WIOA Adult programs. Thus, the 176 Indian and
Native American grantees, under Section 166, were receiving funding
equivalent to 6 percent of the Adult workforce programs.
This year, the DOL, in response to President Trump's proposed
fiscal year 2019 budget which would substantially underfund DOL and
WIOA compared to prior administrations, has prepared a proposed budget
that would allocate just $490 million to fund State Adult WIOA programs
for fiscal year 2019, compared to the nearly $815 million in fiscal
year 2018, a 40 percent cut in funding. Even more alarming, to NIYC and
other current Section 166 grantees, the Department's proposed budget
would eliminate, entirely, the Division of Indian and Native American
Programs and create a set-aside of just 1.5 percent of that budget for
adult employment and training services under the Adult WIOA programs to
American Indians, Alaska Natives, and Native Hawaiians, equivalent to
$7.35 million, which when compared to fiscal year 2018's $49 million,
is a reduction of 85%! This makes no sense. Native programs place
people into employment, often with less money per person than the
States, while serving a population that is harder to serve due to
substantially heavier obstacles to overcome. Section 166 grantees know
how to get results with this population.
With the proposed budget cuts to TES and WIOA, NIYC and the other
off-reservation, nonprofit WIOA grantees serving America's off-
reservation (again, over 75 percent of Native people live off-
reservation) Native population will be unable to continue their
services. WIOA funding is often all that is available for these
activities. According to the organization, Native Americans in
Philanthropy's website, ``...despite Native Americans accounting for
nearly 2 percent (5.4 million) of the U.S. population, philanthropic
funding for the population remains less than 0.5 percent of annual
foundation grant dollars. Most philanthropic efforts to improve the
lives of men and women of color overlook the distinctive needs of
Native Americans.'' Thus, looking to private foundations for funding is
not a viable option. Without access to WIOA funds, our ability (and
that of other Native organizations) to serve our urban Native community
is essentially wiped out. Likewise, the reduction to the States' adult
programs means even less funding to go around, with an increase in
demand, as Native peoples have to turn to the States for employment and
training services. Native people, who already are discriminated against
and leery of Federal and State programs are likely to suffer in such a
scenario.
niyc--a wioa grantee
With WIOA funding, NIYC is able to enroll over 325 low income
adults in its three field offices. It will also serve an additional
1,100 who are not enrolled into a particular program, but who access
``self-services.'' NIYC's average cost per participant in its last
program year $4,291.00. Sixty-one (61) were still employed in the 4th
quarter after exiting the program, with the total median earnings
(unsubsidized) of the participants at $8,523.31, in just their second
quarter after exiting.
One of many success stories of WIOA participants funded by DINAP/
WIOA, in her own words, follows:

My name is Tashina S., I am an enrolled Tribal member of the
Navajo Nation and currently live in Albuquerque, NM. I'm
employed with the American Indian Chamber of Commerce of NM as
the Membership Manager. Before this job, I was a young
unemployed Native American woman trying to make ends meet on
unemployment benefits and food stamps for over half a year
until I realized those benefits weren't enough for me to
continue relying on. That's when I applied for the National
Indian Youth Council's Employment and Training Program. ...
[T]here were times when I wanted to throw in the towel, but I
did not want to label myself as a quitter because I knew I
could not rely on my unemployment benefits much longer. I had
several interviews but never seemed to have met the
qualifications, so I pushed myself to try harder and not to
give up. I applied for the Employment program at NIYC and the
staff there were very helpful and understanding.
I got approved for NIYC's Employment program...then, a position
was available with the American Indian Chamber of Commerce of
New Mexico as an Office Clerk and I was recommended to AICCNM
by my job developer, Tera Frank. She knew that I was dedicated
to finding a job and seen the opportunity for me to potentially
get hired on with them; in which, AICCNM took me in as an
Intern through the program. Upon successfully completing my
Employment program with NIYC, I was hired on as a Full-Time
employee with the American Indian Chamber of Commerce and took
the position as the Membership Manager. A year after being
employed with AICCNM, another opportunity was offered to me as
the Administrative Assistant for the Santa Fe Minority Business
Development Agency which is currently operated by AICCNM under
the U.S Department of Commerce. I now hold multiple job
responsibilities within AICCNM and MBDA which keeps me busy
throughout the day and I've had the opportunity to travel to
various cities for business trips, meet some wonderful people
and learn from my experiences throughout the process.
NIYC has helped me tremendously by getting me back on my feet,
not once but twice. I know there are several other temporary
work services around but they don't give the dedication and 1-
to-1 attention that NIYC Employment & Training program offers.
I know for a fact that NIYC wants their participants to come
out successful from the program and is willing to help
participants who work hard enough for it. I am an example of
that dedication and integrity. I am very grateful for the
National Indian Youth Council Program and all that they do to
help our Native community and Youth.
Continued full funding of WIOA and the Division of Indian and
Native American Programs by the U.S. and its Department of Labor
ensures that there will be more success stories such as Tashina's.
Leaving Native Americans with just a 1.5 percent set-aside of a
decimated WIOA budget will not be enough, we respectfully ask that you
maintain the current levels of funding to both.
NIYC stands ready to support the Committee in any way as it
develops funding priorities for the DOL. If you have any questions,
please contact Tina Farrenkopf via email or the telephone number listed
above.

[This statement was submitted by Tina M. Farrenkopf, Executive
Director,
National Indian Youth Council, Inc.]
______

Prepared Statement of the National Institute on Disability, Independent
Living and Rehabilitation Research
Smith-Kettlewell, an Independent Eye Research Institute, thanks
Congress for continuing to support both the National Institutes of
Health and the Administration for Community Living, and their different
missions.
We would like to express our strong support for keeping the
National Institute on Disability, Independent Living and Rehabilitation
Research (NIDILRR) under the aegis of ACL, with whose mission it is
most compatible. We understand there has been a proposal to move this
agency to NIH, which we believe would be a mistake. Reconstituting
NIDILRR as just another research institute within the NIH model would
have very negative consequences, since the NIDILRR mission, goals, sub-
components, organization, culture, target population, and practical
impact are so different and incompatible with the more homogeneous and
narrowly focused basic research structure and organization of the NIH
and its component Institutes. We therefore believe many of the goals
and beneficial impacts of NIDILRR would inevitably be lost in such a
move.
The NIH is organized specifically to foster basic research in the
various areas of medical focus of its component Institutes (Eye, Heart
Lung and Blood, Allergy, etc) which are tightly integrated within the
NIH structure with staff, rules and procedures geared towards the basic
medical research mission. Even the review panels are controlled
directly by the overarching NIH administration, are shared between the
different Institutes, and have an ingrained tradition of basic science
focus and membership.
NIDILRR, on the other hand, has a much more applied research focus
and a mission to maximize practical impacts. It is oriented towards
research and model programs to address and help the population of
people with existing disabilities, rather than pushing back the
frontiers of medical science in order to prevent others developing such
disabilities in the future. In addition, NIDILRR incorporates other
important activities and mechanisms such as demonstration systems,
centers of excellence, training and technical support programs which
would not easily fit into the NIH structure.
Overall, this different focus, target population and program
structure is fundamentally incompatible with the NIH model, and the
practical impacts on people with disabilities would inevitably be
diluted if not lost altogether if a merger with NIH were to be forced
upon it.
Many thanks for the opportunity to comment upon this proposal.
Sincerely.

[This statement was submitted by John Brabyn Ph.D, Executive
Director, National Institute on Disability, Independent Living and
Rehabilitation Research.]
______

Prepared Statement of the National Kidney Foundation
The National Kidney Foundation (NKF) is pleased to submit testimony
regarding the impact of Chronic Kidney Disease (CKD) and funding
necessary to build upon the successes of the existing programs at the
CDC National Center for Chronic Disease Prevention and Health Promotion
(NCCDPHP), $2.165 billion for the National Institute of Diabetes,
Digestive and Kidney Diseases, and the HRSA Division of Transplantation
(DoT) and increases necessary for the HRSA Bureau of Primary care to
fight kidney disease.
about ckd
CKD impacts 30 million American adults, while 1 in 3 adults (73
million) are at risk. Diabetes and high blood pressure are responsible
for up to two-thirds of all cases of irreversible kidney failure (end
stage renal disease) which requires dialysis or a kidney transplant to
maintain life. Kidney disease can be detected through simple blood and
urine tests yet can go undetected until very advanced because kidney
disease often has no symptoms. African Americans develop ESRD at a rate
of 4:1 compared to Whites and Hispanic Americans develop it at a rate
of 2:1 compared to Whites.
Over 700,000 Americans have ESRD, nearly 500,000 of whom receive
dialysis at least 3 times per week to replace kidney function, and over
200,000 Americans live with a kidney transplant. Medicare spends nearly
$100 billion annually on the care of people with CKD, $64 billion of
which is for individuals who do not have kidney failure.
Astonishingly, 90 percent of individuals with CKD are unaware they
have it. Many people are not diagnosed until they have reached ESRD and
must begin dialysis immediately. The impact of CKD is further amplified
as the disease burden is growing. A study published by researchers
leading the CDC's CKD surveillance program shows that over half of U.S.
adults age 30-64 are likely to develop CKD. Many with CKD also have
cardiovascular disease, bone disease, and other chronic conditions,
contributing to poor outcomes and increased health spending for this
population. In fact, CKD is an independent risk predictor for heart
attack and stroke.
Intervention at the earliest stage is vital to improving outcomes,
lowering healthcare costs, and improving patient experience, yet
nationally only 6 percent of patients with high blood pressure and 40
percent with diabetes are receiving necessary testing for CKD. To
improve awareness, early identification, and optimal treatment for
kidney disease, the National Kidney Foundation calls on the Committee
to sustain or increase funding for several agencies that are
contributing substantially to these improvements.
cdc nccdphp
NCCDPHP is at the forefront of our Nation's efforts to promote and
control chronic diseases. To address the social and economic impact of
kidney disease, in fiscal year 2006 NKF worked with Congress to launch
the CKD Surveillance Project. This program has provided information to
the public on the scope of CKD and has illuminated gaps in care as well
as successful targeted efforts to reduce new cases of ESRD. The
National Kidney Foundation is extremely appreciative of Congress's
funding increase for the program in fiscal year 2018 and we encourage
the Committee to sustain funding in fiscal year 2019. Also, key to
improving public health is addressing the link between kidney disease
and cardiovascular disease. The National Kidney Foundation has been
pleased to collaborate with Million Hearts to improve assessment for
CKD among those with hypertension. We urge Congress to continue funding
to support Million Hearts in its goal to reduce heart attack and stroke
by 1 million by 2022. While both efforts are helpful in moving forward
improvements in earlier identification and treatment, we urge Congress
to do more to address this largely silent public health problem by
increasing funding for NCCDPHP to promote increased awareness of the
important role kidneys have in overall health.
nih niddk
NKF supports the Friends of NIDDK request of $2.165 billion for
fiscal year 2019. Despite Medicare spending of nearly $100 billion for
CKD, NIH funding for kidney disease research is only about $600 million
annually. America's scientists are at the cusp of many potential
breakthroughs in improving our understanding of CKD and providing new
therapies to delay and treat various kidney diseases. With the unique
status of ESRD in the Medicare program, CKD research has the potential
to provide cost savings to the Federal Government like that of no other
chronic disease. We urge Congress to again provide strong bipartisan
support for NIH to continue building on the success of the previous
commitments and fund NIDDK at this requested level.
hrsa bureau of primary care
The HRSA Bureau of Primary Care supports a national network of more
than 9,800 health clinics for 1 in 13 people in underserved communities
who otherwise would have little or no access to care. Community Health
Centers can serve as a first line of detection and care for people at
risk and with CKD. NKF urges the Committee to increase funding for
federally Qualified Community Health Centers to improve testing of CKD
among those with diabetes and hypertension by including, in the Uniform
Data System (UDS), laboratory values for estimated Glomerular
Filtration Rate (eGFR) and urine albumin to creatinine ratio (ACR),
which provide vital information on kidney function and the risk of
progression and cardiovascular complications and CKD diagnosis. This
would align with Healthy People 2020 objectives related to CKD
detection and provide a critical data source for CKD surveillance.
hrsa dot
The Division of Transplantation supports initiatives to increase
the number of donor organs, including the National Donor Assistance
Program which helps offset living organ donors' expenses that are not
reimbursed by insurance or other programs. We appreciate the increase
in fiscal year 2018 funding and urge Congress to continue this funding
to ensure more ESRD patients have access to the therapy associated with
the best outcomes.
The National Kidney Foundation is not asking the Government to bear
the responsibility CKD on its own and we have undertaken initiatives to
drive forward improvements in kidney care. Our CKDIntercept initiative
aims to transform Primary Care Practitioners (PCP) detection and care
of the growing numbers of Americans with CKD by deploying evidence
based clinical guidelines into primary care settings through education
programs, symposia and practical implementation tools. Through this
initiative, we have collaborated with the American Society for Clinical
Pathology (ASCP) and the Nation's leading commercial laboratories and
clinical laboratory societies to help remove barriers to CKD testing. A
component of this new collaboration is the recommendation of a new test
profile for CKD assessment and diagnosis. The new ``Kidney Profile''
combines the blood and urine testes needed to calculate the eGFR, which
assesses kidney function, and urine ACR, which assesses kidney damage.
We also developed recommendations for a patient-focused alternative
payment model that will foster collaboration among PCPs and
nephrologists to slow progression of CKD and ease transitions for those
that progress to ESRD. In support of this effort, NKF is advocating for
Congress to enact legislation (H.R. 3867) that directs the Secretary of
Health and Human Services to design a voluntary pilot program that ties
payments to clinicians with improvements in the early detection of
chronic kidney disease and the care these patients receive. The pilot
will be practitioner-led and supported by a multidisciplinary
healthcare team. In addition, it will provide primary care
practitioners and nephrologists with the resources they need to better
care for people with CKD, while also ensuring they are accountable for
measurable improvements in care. Practitioners will be rewarded for
identifying kidney disease early so that the progression of the disease
can be slowed resulting in better, long-term patient outcomes, such as
a reduction in the number of patients dying early, requiring dialysis
or needing kidney transplantation.
To foster increased access to kidney transplantation, the National
Kidney Foundation hosted the Organ Discard Conference in May 2017,
which brought the transplant community, researchers, and government
agencies together to address this phenomenon. At our 2018 Spring
Clinicals Meeting this month, we announced the results of a study of
transplanted kidneys that were previously deemed unfit for transplant.
This first-ever study showed a graft survival rate for these kidneys
exceeding 90 percent 1 year after transplant. We also have launched the
Big Ask, Big Give, an educational program to help transplant recipients
identify willing living kidney donors.
Thank you for your past support and your consideration of our
requests for fiscal year 2019.
______

Prepared Statement of the National League for Nursing
As the oldest nursing organization in the United States, the NLN
promotes excellence in nursing education to build a strong and diverse
nursing workforce to advance the health of the Nation and the global
community. The League represents more than 1,200 nursing schools,
40,000 members, and 25 regional constituent leagues. The NLN thanks the
subcommittee for the increase in fiscal year 2018 funding for these
vital programs at HRSA. The NLN urges the subcommittee to fund the
Health Resources and Services Administration's (HRSA) Title VIII
nursing workforce development programs at $266 million in fiscal year
2019. Your ongoing support for these programs ensures a strong nursing
workforce able to meet the health demands of an aging population as
well as the current opioid epidemic.
nursing education and workforce
The changing landscape of patient care, driven by greater consumer
engagement, practice-driven technologies, and virtual healthcare,
provides a unique context for teaching and learning. Teaching with and
about emerging technology is the future of nursing education. Providing
nursing care in a highly technological, connected work environment is
the future of nursing practice (NLN 2015).
A high quality-nursing workforce equals high quality care for the
Nation. With 4.8 million active, licensed vocational/practical nurses
(LVNs/LPNs) and registered nurses (RNs), nurses are the primary
professionals delivering quality healthcare in the Nation (NCSBN 2018).
According to the Bureau of Labor Statistics (BLS), the RN workforce is
projected to grow by 15 percent from 2016 to 2026, The BLS also
estimates the LVN/LPN workforce will grow by 12 percent, the advanced
practice registered nurses (APRNs) workforce will grow by 31 percent,
and the need for nursing faculty will grow 24 percent during the same
period (BLS 2017).
This increase is fueled by the opioid epidemic, demand for
healthcare services for our aging population; for patients with various
chronic conditions, such as arthritis, dementia, diabetes, and obesity;
and for staffing facilities that provide long-term rehabilitation for
stroke and head injury patients and those that treat people with
Alzheimer's. In addition, because many older people prefer to be
treated at home or in residential care facilities, nurses will be in
demand in those settings.
diversity in nursing
Diversity and quality healthcare are inseparable. Diversity
signifies that each individual is unique and recognizes individual
differences--race, ethnicity, gender, sexual orientation and gender
identity, socio-economic status, age, physical abilities, religious
beliefs, political beliefs, or other attributes. It encourages self-
awareness and respect for all persons, embracing and celebrating the
richness of each individual. It also encompasses organizational,
institutional, and system-wide behaviors in nursing, nursing education,
and healthcare (NLN 2016).
There is a great need for diversity in the nurse workforce, student
population, and faculty in order for nursing to achieve excellent care
for all. Diversity in nursing is essential to a market-driven
healthcare system that understands and addresses cultural challenges
and social determinants of health in our rapidly changing population.
Our Nation is enriched by cultural complexity--37 percent of our
population identify as racial and ethnic minorities. Yet diversity
eludes the nursing student and nurse educator populations. Minorities
only constitute 27 percent of the student population and males only 14
percent of pre-licensure RN students (NLN 2016). Workforce diversity is
especially needed where research indicates that factors such as
societal biases and stereotyping, communication barriers, limited
cultural sensitivity and competence, and system and organizational
determinants contribute to healthcare inequities.
hrsa's title viii nursing workforce development programs
For over 50 years, the Title VIII nursing workforce development
programs have provided training for entry-level and advanced practice
registered nurses (APRNs) to improve the access to, and quality of,
healthcare in underserved communities. These programs 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, loans, scholarships,
and services that enable students to overcome obstacles to completing
their nursing education programs. Many of the Title VIII grantees
collaborate with health delivery sites in medically underserved
communities, which is especially important as the opioid epidemic
continues to ravage the country. Your ongoing support of HRSA's Title
VIII nursing programs will help build the workforce needed to battle
this epidemic.
Information from HRSA's Title VIII programs listed below provides a
perspective on current Federal investments.
The Advanced Nursing Education (ANE) programs increase the number
of qualified nurses in the primary care workforce by improving advanced
nursing education through traineeships as well as curriculum and
faculty development. The programs include a preference for supporting
rural and underserved communities. In academic year 2016-2017, grantees
of the ANE Program trained 5,942 nursing students and produced 1,541
graduates. ANE grantees partnered with 2,304 healthcare delivery sites
to provide clinical and experiential training. Approximately 40 percent
of sites used by ANE grantees were located in a medically underserved
community, and 59 percent were primary care settings.
The Nursing Workforce Diversity (NWD) program increases nursing
education opportunities for individuals from disadvantaged backgrounds,
including racial and ethnic minorities who are underrepresented among
registered nurses. The program supports disadvantaged students through
student stipends and scholarships, and a variety of pre-entry
preparation, advanced education preparation, and retention activities.
In academic year 2016-2017, the NWD Program supported 57 college-level
degree programs as well as 38 training programs and activities designed
to recruit and retain health professions students. These programs
trained 4,416 students including 2,637 students who graduated or
completed their programs. NWD grantees partnered with 571 training
sites during the academic year to provide 7,800 clinical training
experiences to trainees across all programs. Approximately 49 percent
of training sites were located in medically underserved communities and
37 percent were in primary care settings.
The Nurse Education, Practice, Quality, and Retention Programs
(NEPQR) address national nursing needs and strengthen the capacity for
basic nurse education and practice under three priority areas:
Education, Practice and Retention. The NEPQR Programs support the
development, distribution and retention of a diverse, culturally
competent health workforce that can adapt to the population's changing
healthcare needs and provide the highest quality of care for all. Woven
throughout the programs is the aim to increase the number of Bachelor
of Science in Nursing (BSN) students exposed to enhanced curriculum and
with meaningful clinical experience and training in medically
underserved and rural communities, who will then be more likely to
choose to work in these settings upon graduation.
The Nurse Faculty Loan Program (NFLP) seeks to increase the number
of qualified nurse faculty by awarding funds to schools of nursing who
in turn provide student loans to graduate-level nursing students who
are interested to serve as faculty. Upon graduation, student borrowers
are eligible to receive partial loan cancellation (up to 85 percent of
the loan principal and interest over 4 years) in exchange for serving
as full-time faculty at an accredited school of nursing. In academic
year 2016-2017, 84 schools received new NFLP grant awards and supported
1,998 nursing students pursuing graduate level degrees as nurse
faculty. The majority of students (83 percent) who received loans
during the academic year were pursuing doctoral-level nursing degrees
(e.g., PhD, DNP, DNSc/DNS, or EdD). By the end of the academic year,
568 trainees graduated; 92 percent of whom intend to teach nursing.
The NURSE Corps Scholarship and Loan Repayment Program (NURSE
Corps) helps to improve the distribution of nurses by supporting nurses
and nursing students committed to working in communities with
inadequate access to care. In exchange for scholarships or educational
loan repayment, NURSE Corps members fulfill their service obligation by
working in Critical Shortage Facilities (CSFs) located in health
professional shortage areas and medically underserved communities
around the Nation, which include rural communities and other identified
geographic areas with populations that lack access to primary care
services. In fiscal year 2018, the NURSE Corps loan repayment program
made 671 loan repayment awards and 326 continuation awards. The NURSE
Corps scholarship program made 203 new scholarship awards and 22
continuations awards during the same time period.
The NLN urges the subcommittee to fund the Title VIII nursing
workforce development programs at $266 million in fiscal year 2019.

[This statement was submitted by G. Rumay Alexander, EdD, RN, FAAN,

President, and Beverly Malone, PhD, RN, FAAN, Chief Executive Officer,
National League for Nursing.]
______

Prepared Statement of the National Minority Consortia
The National Minority Consortia (NMC) submits this statement on the
fiscal year 2021 advance appropriations for the Corporation for Public
Broadcasting (CPB). We represent a coalition of five national
organizations, who, with modest support from CPB, bring authentic and
unique stories of diversity to all of America's communities via public
broadcasting and other media, including content transmitted digitally
over the Internet. Our requests are two: (1) That at least $445 million
be provided in advance fiscal year 2021 funding for CPB; and (2) that
Congress direct CPB to meaningfully increase its commitment to diverse
programming and serving underserved communities. We ask the Committee
to:

--Provide fiscal year 2021 advance appropriation for CPB of $445
million, to continue a service that provides 98 percent of
Americans, including those in rural areas with free, unique
local and national community resources that would otherwise not
be available.
Public broadcasting upholds strong ethics of responsible journalism
and thoughtful examination of American history, life and culture. In
America today, where minorities comprise over 36 percent of the
population, and where racial and ethnic minorities make up more than
half of all children born in the United States today, it is
particularly important that Congress support continued funding of CPB
so that our public media system can continue to deliver well-researched
and authentic stories about America's unique and rapidly diversifying
populace.
From children's educational content to public safety awareness,
America's public media broadcasting system is a necessary tool to
ensure a well-educated, well-informed, and cultured civil society
capable of meeting the responsibilities of self-government in the
world's most important democracy.

--Direct CPB to increase its efforts for diversity to meet the
demands of a growing and diverse public. We appreciate that the
House Appropriations Committee last year included in its Report
115-224 the statement that ``Programming that reflects the
histories and perspectives of diverse racial and ethnic
communities is a core value and responsibility of public
broadcasting, therefore the Committee supports continued
investment in the National Minority Consortia to help
accomplish this goal.'' We urge the Senate Committee to
likewise in bill and/or report language to include language
that recognizes the five members of the National Minority
Consortia, and the need to rapidly increase and expand efforts
across programming, content creation, and work-force, to meet
the demands of an increasingly diverse public. We suggest
language such as:

The Committee recognizes the importance of the partnership CPB
has with the National Minority Consortia, which helps
develop, acquire, and distribute diverse content to Public
Media entities to serve underrepresented communities. These
stories of diversity transcend statistics and bring
universal American stories to all U.S. citizens. As
populations of diverse ethnic backgrounds are increasing in
cities and towns across the Nation, Public Media entities,
TV and Radio stations and digital platforms must strive to
meet this audience's needs. The Committee encourages CPB to
support and expand this critical partnership, including
instituting funding guidelines that encourage and reward
public media that represent and reach a diverse American
public.
The five NMC organizations combined receive only $6.5 million in
discretionary funds from CPB, an amount less than 2 percent of the CPB
budget. A modest increase of 10 percent or $7.5 million for the NMC
will go a long way in supporting the continued development of diverse
content and diverse media makers.
about the national minority consortia
The NMC is made up of five separate and distinct organizations that
address the need for programing that reflects American's growing ethnic
and cultural diversity. By developing and funding diverse content,
training and mentoring the next generation of minority media makers, as
well as brokering relationships between content creators and content
aggregators, the NMC helps to ensure the future strength and relevance
of Public Media content from and to diverse communities.
Black Public Media (BPM) is committed to a fully realized
expression of democracy by supporting diverse voices in public media.
NBPC develops, produces, and funds media content about the African
American and global black experience that is distributed across public
media platforms. It has invested over $12 million dollars in iconic
documentary productions such as Maya Angelou: And Still I Rise;
trained, mentored, and supported diverse producers through programs
such as 360 Incubator; and is the Executive Producer of the public
media series AfroPoP: The Ultimate Cultural Exchange, a showcase of
independent documentaries about life, art and culture of African
Americans and Africans of the diaspora.
The Center for Asian American Media (CAAM) is a nonprofit
organization dedicated to presenting 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. Each year our
documentaries reach millions of viewers through our public television
system. Since our founding in 1980 CAAM has awarded over $5 million to
independent film and video productions by and about Asian Americans,
exposing audiences to new voices and communities, and advancing our
collective understanding of the American experience.
Latino Public Broadcasting (LPB). Latino Public Broadcasting (LPB)
is the leader in the development, production, acquisition and
distribution of non-commercial educational and cultural media that is
representative of Latino Americans. These programs are produced for
dissemination to public broadcasting stations and other public
telecommunication entities. Between 2009 and 2016, LPB programs won 85
awards, including the prestigious George Foster Peabody Award, two
Emmys, two Imagen Awards and the Sundance Film Festival Award for Best
Director, Documentary. In addition, LPB has been the recipient of the
Norman Lear Legacy Award and the NCLR Alma Award for Special
Achievement--Year in Documentaries.
Latino Public Broadcasting provides a voice to the diverse Latino
community throughout the United States. Latinos have helped shape the
Nation over the last 500-plus years and have become, with more than 50
million people, the largest minority group in the Nation.
Pacific Islanders in Communications (PIC). Since 1991, Pacific
Islanders in Communications has pursued our mission of supporting,
advancing, and developing Pacific Island media content and talent that
results in a deeper understanding of Pacific Island history, culture
and contemporary challenges. Pacific Islanders in Communications works
with independent producers, specifically with Pacific Islander
producers, by training, creating, and distributing programs with
Pacific Islander content. Our overall goal is to bring authentic
Pacific Islander stories to the world. We do this through funding
support for productions, training and education, broadcast services and
community engagement. In the next 3 years, we intended to reinforce our
commitment to our communities, to preserve our relevance, and to build
the organizational capacity we need to survive the forces of change.
Vision Maker Media (VMM) (formerly Native American Public
Telecommunications) empowers and engages Native People to tell stories.
They serve Native producers and Indian country in partnership with
public television and radio by working with Native producers to
develop, produce and distribute educational programs for all media
including public television and radio. Vision Maker Media supports
training to increase the number of American Indians and Alaska Natives
producing quality public broadcasting programs. A key strategy for this
work is the development of strong partnerships with tribal nations and
Native communities. Reaching the general public and the global market
is the ultimate goal for the dissemination of Native produced media
that shares Native perspectives with the world.
______

Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and Members of the Subcommittee, the National Multiple
Sclerosis Society (Society) thanks you for this opportunity to provide
testimony regarding funding of critically important Federal programs
that impact those affected by multiple sclerosis (MS). We urge the
Subcommittee to provide the following in fiscal year 2019:
--At least $39.3 billion for the National Institute of Health (NIH),
including funds provided to the agency through the 21st Century
Cures Act (Public Law 114-255) for targeted initiative;
--$8.445 billion for the Centers for Disease Control and Prevention
(CDC) inclusive of $5 million for the National Neurological
Conditions Surveillance Program authorized in the 21st Century
Cures Act;
--$150 million for the Patient Centered Outcomes Research Institute
(PCORI);
--$5 million for the Lifespan Respite Care Program;
--Robust support for Medicare and Medicaid and protection of
Medicaid's current financing structure; and
--An increase above fiscal year 2018's funding level of $12.9 billion
for the Social Security Administration's administrative budget
--$454 million for the Agency for Healthcare Research and Quality
(AHRQ)
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. The
Society addresses the challenges of each person affected by MS so that
each person affected by MS can live their best life. We support all
types of scientifically meritorious medical research that is conducted
in accordance with Federal, State and local laws and with adherence to
the strictest ethical and procedural guidelines that will help provide
solutions for people affected by MS.
We believe that the President's fiscal year 2019 proposed budget
would set back research and innovation and prevent people with MS from
receiving the coverage and services they need to live their best lives.
The Society urges the Committee to reject these proposed cuts and
instead, adequately fund research and programs and health coverage and
services important to people with MS.
national institutes of health
The NIH is the Nation's premiere biomedical research institution
and directly supports jobs in all 50 States. 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. We thank the
Committee for its support of the NIH, which culminated in a $3 billion
dollar increase for the Agency in fiscal year 2018.
The NIH is a fundamental partner in the Society's mission to stop
MS in its tracks, restore what has been lost, and end MS forever.
Before 1993, there were no MS therapies or medications, now there are
fifteen disease modifying therapies for relapsing MS, and the first
therapy for progressive MS was recently approved by the Food and Drug
Administration. Much work remains, and the NIH continues to provide the
basic research necessary to facilitate the development of novel
therapies. NIH scientists were among the first to report the value of
MRI in detecting early signs of MS and have enhanced knowledge about
how the immune system works and its role in the development of MS
lesions. Initiatives such as Brain Research through Advancing
Innovative Neurotechnologies (BRAIN) and All of Us Research Program
will improve our understanding of the anatomy and connectivity of the
brain and ultimately aid researchers in the development of novel
endpoints and biomarkers for all neurologic conditions, including MS.
The NIH is a fundamental partner in the Society's mission to stop
MS in its tracks, restore what has been lost, and end MS forever. To
date, the Society has invested $1.082 billion to MS research to date,
yet we rely on Congress to provide consistent and sustained investments
to the Agency to cultivate an environment that is optimal for
scientific discovery. NIH continues to provide the basic research
necessary to facilitate the development of novel therapies. NIH
spending on MS related research has decreased by more than $10 million
since fiscal year 2013, and that investment was projected to fall to
approximately $77 million in fiscal year 2018. People with MS rely on
the NIH to fund the basic research that will lead to better treatments
and a cure, and though much progress has been made, now is not the time
to decrease much needed Federal investment in MS research. The Society
urges Congress to provide at least $39.3 billion for the NIH, including
funds provided to the agency through the 21st Century Cures Act for
targeted initiatives.
lifespan respite care program
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. According to a
2015 AARP report, about 40 million family caregivers provided care at
some point during 2013 and the value of their uncompensated services
was approximately $470 billion per year. Family caregivers allow the
person living with MS to remain home for as long as possible and avoid
premature admission to costlier institutional facilities.
Family caregiving, while essential, can be draining and stressful.
A 2012 National Alliance for Caregiving (NAC) survey of individuals
providing care to people living with MS shows that on average,
caregivers spend 24 hours a week providing care. Sixty 4 percent of
caregivers were emotionally drained, 32 percent suffered from
depression and 22 percent have lost a job due to caregiving
responsibilities.
The Lifespan Respite Care Program, enacted in 2006 under President
Bush, provides competitive grants to States to establish or enhance
statewide lifespan respite programs that better coordinate and increase
access to quality respite care. Respite offers professional short-term
help to give caregivers a break from the stress of providing care and
has been shown to provide family caregivers with the relief necessary
to maintain their own health and bolster family stability. 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. For these reasons, the Society
asks that Congress provide $5 million for the Lifespan Respite Care
Program in fiscal year 2019.
centers for medicare & medicaid services
Medicare: It is estimated that over 30 percent of the MS population
relies on Medicare as its primary insurer. Many of these individuals
are under the age of 65 and receive the Medicare benefit because of
their disability. The Society supports ensuring appropriate
reimbursement levels for Medicare providers; maintaining access to
diagnostics and durable medical equipment including power and manual
complex rehabilitation technology and related accessories; protecting
access to needed speech, physical and occupational therapy services
which will be aided by the recent repeal of the Medicare therapy cap;
updating local coverage determinations to keep pace with advances in
care; and affordable access to prescription drugs.
Medicaid: Medicaid provides comprehensive health coverage to over
10 million persons living with disabilities, plus six million persons
with disabilities who rely on Medicaid to fill Medicare's gaps. The
latest statistics show that about 5-10 percent of people with MS have
Medicaid coverage. After years of paying to manage their disease, some
people with MS have spent much of their earnings and savings, making
their financial situation so dire that Medicaid becomes their only
option for health coverage. People with MS also rely on Medicaid for
access to long-term services and supports. The Society urges Congress
to maintain funding for Medicaid and reject proposals to cap or block
grant the program. Any of these proposals would merely shift costs to
States, forcing States to shoulder a seemingly insurmountable financial
burden or cut services on which our most vulnerable rely. The Society
also urges Congress to protect and promote access to home- and
community-based care in line with the 1999 U.S. Supreme Court decision
Olmstead.
Social Security Administration (SSA).--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. The National MS Society urges Congress to
provide an increase above fiscal year 2018's funding level of $12.9
billion for the Social Security Administration's administrative budget
to ensure people with MS have timely access to benefits and the agency
continues to make progress reducing the disability backlog.
Agency for Healthcare Research and Quality (AHRQ).--AHRQ is a small
agency that is revolutionizing the healthcare system based on
healthcare costs and quality. It provides evidence for healthcare
providers to use to make healthcare safer, higher quality, more
accessible, equitable, and affordable. In 2015, AHRQ produced the
report, ``Decisional Dilemmas in Discontinuing Prolonged Disease-
Modifying treatment for Multiple Sclerosis'' as a tool that captured
the influence of patient values, beliefs and preferences of people
affected by MS to support providers. Reports like these are vital in
ensuring that the healthcare community has science and evidence-based
information to aid in consultations on treatment decisions. The
clinical evidence that AHRQ produces is a vital metric for the
healthcare industry and government to utilize as the industry moves
toward value-based care. While proposals have called for the Agency's
elimination, the Society supports the work of AHRQ and recommends
Congress provide $454 million for the Agency in fiscal year 2019.
Patient-Centered Outcomes Research Institute.--The Patient-Centered
Outcomes Research Institute (PCORI) serves a vital role in ensuring
that the public and private healthcare sectors have valid and
trustworthy data on health outcomes, clinical effectiveness, and
appropriateness of different medical treatments by both conducting
research and evaluating existing studies.
PCORI's research addresses the need for real-world evidence and
patient-focused outcomes data that will improve healthcare quality and
help shift healthcare payment models toward value-based care. In 2016,
PCORI approved over $50 comparative effectiveness studies in MS. These
studies will provide important evidence for the best ways to address
symptoms like fatigue and the potential to use technology to deliver
needed rehabilitation therapies to people in remote areas. We recommend
that Congress reauthorize PCORI to continue its important mission,
fully fund its work for fiscal year 2019, and ensure that it has
reliable and sustainable funding to continue its work in the future.
centers for disease control and prevention
The CDC (Centers for Disease Control and Prevention) is tasked with
protecting public health and safety through the control and prevention
of disease, injury, and disability. Unfortunately, budgetary cuts and
public health emergencies has limited its ability to collect data to
track the incidence and prevalence of neurological diseases like MS.
The 21st Century Cures Act authorized the creation of the National
Neurological Conditions Surveillance System (NNCSS) within the Agency,
Congress has not yet funded the it. Having strong and reliable
prevalence data is critical to protecting the public health and funding
new and novel research to treat neurologic conditions. Congress must
keep its commitments included in the 21st Century Cures act and fund
the CDC at $8.445 billion for fiscal year 2019--including $5 million
for the NNCSS.
The National MS Society thanks the Committee for the opportunity to
provide written testimony on our recommendations for fiscal year 2019
LHHS appropriations. The agencies and programs we have outlined above
are of vital importance to people living with MS. Please do not
hesitate to contact the Society with any questions. We look forward to
continuing to work with the Committee to help move us closer to a world
free of MS.

[This statement was submitted by Leslie Ritter, Senior Director,
Federal
Government Relations, National Multiple Sclerosis Society.]
______

Prepared Statement of the National Network to End Domestic Violence
Labor, Health and Human Services, Education, and Related Agencies
Appropriations Subcommittee Chairman Blunt, Ranking Member Murray and
distinguished members of the Appropriations Committee, thank you for
this opportunity to submit testimony on the importance of investing in
Family Violence Prevention and Services Act (FVPSA) and Violence
Against Women Act (VAWA) programs. I sincerely thank the Committee for
its ongoing support of these lifesaving programs.
I am the President and CEO of the National Network to End Domestic
Violence (NNEDV), the Nation's leading voice for domestic violence
survivors and their advocates. We represent the 56 State and
territorial domestic violence coalitions, their nearly 2,000 member
domestic violence and sexual assault programs, and the millions of
victims they serve. Our direct connection with victims and victim
service providers gives us a unique understanding of their needs and
the vital importance of continued Federal investments. I am submitting
this testimony to request a targeted investment of $257.25 million in
FVPSA, VAWA and related programs administered by the U.S. Department of
Health and Human Services fiscal year 2019 Budget.
We appreciate the Committee's increased funding for FVPSA,
including the increase to the dedicated tribal funding stream, and Rape
Prevention Education (RPE), in the recently passed fiscal year 2018
Omnibus bill. These incremental increases help close gaps for survivors
to access critical services.
Incidence, Prevalence, Severity and Consequences of Domestic and Sexual
Violence.
The crimes of domestic and sexual violence are pervasive, insidious
and life-threatening. Recently, the Centers for Disease Control and
Prevention (CDC) released the first-ever National Intimate Partner and
Sexual Violence Survey (NISVS) which found that domestic violence,
sexual violence, and stalking are widespread. Domestic violence affects
more than 12 million people each year and more than one in three women
and one in four men have experienced rape, physical violence, or
stalking in their lifetime. Survivors have detailed severe impacts of
domestic violence such as fear, concern for their safety, need for
medical care, injury, need for housing services, and missing work or
school.
The terrifying conclusion of domestic violence is often murder, and
every day in the United States, an average of three women are killed by
a current or former intimate partner.\1\ The cycle of intergenerational
violence is perpetuated as children are exposed to violence.
Unfortunately, 15.5 million children are exposed to domestic violence
every year.\2\ One study found that men exposed to physical abuse,
sexual abuse and witnessing adult domestic violence as children were
almost 4 times more likely than other men to have perpetrated domestic
violence as adults.\3\
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\1\ Bureau of Justice Statistics (2008). Homicide Trends in the
U.S. from 1976-2005. U.S. Dept. of Justice.
\2\ McDonald, R., et al. (2006). ``Estimating the Number of
American Children Living in Partner-Violence Families.'' Journal of
Family Psychology, 30(1), 137-142.
\3\ Whitfield, C.L., Anda, R.F., Dube, S.R., & Felitti, V.J.
(2003). ``Violent childhood experiences and the risk of intimate
partner violence in adults.'' Journal of Interpersonal Violence, 18,
166-185.
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These statistics paint an ugly picture. In addition to the terrible
cost domestic and sexual violence has on the lives of individual
victims and their families, these crimes also come at a high cost for
taxpayers and communities. The cost of intimate partner violence
exceeds $5.8 billion each year, $4.1 billion of which is for direct
healthcare services.\4\ Translating this into 2018 dollars, based on
the Bureau of Labor Statistics Consumer Price Index, the annual cost to
the Nation is over $9 billion per year. Domestic violence costs U.S.
employers an estimated $3 to $13 billion annually.\5\
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\4\ National Center for Injury Prevention and Control. Costs of
Intimate Partner Violence Against Women in the United States. Atlanta
(GA): Centers for Disease Control and Prevention; 2003.
\5\ Bureau of National Affairs Special Rep. No. 32, Violence and
Stress: The Work/Family Connection 2 (1990); Joan Zorza, Women
Battering: High Costs and the State of the Law, Clearinghouse Rev.,
Vol. 28, No. 4, 383, 385.
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Despite this grim reality, we know that when a coordinated response
is developed and immediate, and essential services are available,
victims can escape from violence and succeed at rebuilding their lives.
FVPSA and VAWA programs are essential to their success. I urge you to
increase their funding in the fiscal year 2019 Labor, Health and Human
Services Appropriations bill.
Family Violence Prevention and Services Act (FVPSA) (Administration for
Children and Families)--$175 million request.
Since its passage in 1984, as the first national legislation to
address domestic violence, FVPSA remains as the only Federal funding
solely for shelter programs. FVPSA has made substantial progress toward
ending domestic violence, yet an unconscionable need remains for FVPSA-
funded victim services. FVPSA is the cornerstone of our Nation's
efforts to address domestic violence. There are more than 2,000
community-based domestic violence programs for victims and their
children (approximately 1,500 of which are FVPSA-funded through State
formula grants). These programs offer services such as emergency
shelter, counseling, legal assistance, and preventative education to
millions of adults and children annually and are at the heart of our
Nation's response to domestic violence.
A multi-State study, funded by the National Institute of Justice,
shows conclusively that the Nation's domestic violence shelters address
both the urgent safety needs and long-term security needs of victims
and are helping victims protect themselves and their children. This
same study found that, if shelters did not exist, the consequences for
victims would be dire, including ``homelessness, serious losses
including [loss of] children [or] continued abuse or death.'' \6\
Additionally, non-residential domestic violence services are essential
to addressing victims' needs. Such programs provide a wide variety of
services to victims including counseling, child care, financial
support, and safety planning. Without the counseling services she
received from her local domestic violence program, one victim said, ``I
would not be alive, I'm 100 percent certain about that.'' \7\
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\6\ Lyon, E. & Lane, S. (2009). Meeting survivors' needs: A multi-
State study of domestic violence shelter experiences. Harrisburg, PA:
National Resources Center on Domestic Violence.
\7\ Lyon, Eleanor, Bradshaw, Jill, Menard, Anne. Meeting Survivors'
Needs through Non-Residential Services & Supports: Results of a Multi-
State Study. Harrisburg, PA: National Resource Center on Domestic
Violence. November, 2011.
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The Increased Need for Funding: to Maintain Programs and Bridge the
Gap.
Many programs across the country use their FVPSA funding to keep
the lights on and their doors open. We cannot overstate how important
this funding is: victims must have a place to flee to when they are
escaping life-threatening violence. As increased training for law
enforcement, prosecutors and court officials has greatly improved the
criminal justice system's response to victims of domestic violence,
there is a corresponding increase in demand for emergency shelter,
hotlines and supportive services. Additionally, several high-profile
cases, national focus on domestic and sexual violence, and the #MeToo
movement have given survivors the courage to come forward and hold
their abusers accountable. As a result, shelters overwhelmingly report
that they cannot fulfill the growing need for these services.
Each year the National Network to End Domestic Violence releases a
report entitled Domestic Violence Counts: A 24-hr National Census of
Domestic Violence Services (Census). The report revealed that in just
one day in 2017, while more than 72,245 victims of domestic violence
received services, and 11,441 requests for services went unmet, due to
lack of funding and resources. Of those unmet requests, 65 percent were
for safe housing. In 2017, domestic violence programs reported that
they had laid off 1,077 staff positions in addition to reducing or
eliminating services in the past year, including prevention services,
therapy, and child welfare advocacy. I strongly encourage you to read
NNEDV's DV Counts Census (www.nnedv.org/census) to learn more about the
desperate needs of victims State-by-State and nationally.
Domestic violence programs funded by FVPSA provided shelter and
nonresidential services to more than 1.3 million victims over a year.
Due to lack of capacity, however, an additional 196,467 requests for
shelter went unmet. For those individuals who are not able to find
safety, the consequences can be extremely dire, including continued
exposure to life-threatening violence or homelessness. It is absolutely
unconscionable that victims cannot find safety for themselves and their
children due to a lack of adequate investment in these services. In
order to help meet the immediate needs of victims in danger and to
prevent and end domestic violence, I urge you to increase FVPSA funding
to its authorized level of $175 million.
additional requests
DELTA (CDC)--$6 Million Funding Request
The Domestic Violence Prevention Enhancements and Leadership
Through Alliances (DELTA) program at the Centers for Disease Control
(CDC) is the only dedicated Federal funding source for the primary
prevention of domestic violence. In approximately 50 communities across
the Nation, the DELTA program works to identify effective strategies
for preventing first-time perpetration and first-time victimization of
domestic violence. Through the use of evidence-supported initiatives,
including social change and public health strategies, DELTA states have
piloted and evaluated a range of programs, designed to promote safety
and respect across communities. The growing evidence base shows that
such strategies have the potential to reduce multiple forms of
violence. Over the history of the program, only 16 States have been
able to participate as DELTA projects. Preliminary evaluation results
show a growing body of evidence that supports this work, indicating
that domestic violence and dating violence rates can be decreased over
time with the implementation of DELTA programming. The work being done
with multi-level strategies (individual, relationship, community and
societal strategies) focuses on changing social norms and promoting
behaviors that support healthy relationships. An increase in funding
will enable the DELTA program to expand to additional States and
communities, and will also provide the opportunities for communities to
leverage additional funding. I urge you to fund DELTA at its $6 million
authorization level.
--Rape Prevention and Education (RPE) (Centers for Disease Control
and Injury Prevention)--$50 million;
--National Domestic Violence Hotline (Administration for Children and
Families)--$9.25 million;
--Preventative Health and Health Services Block Grant, Rape Set-
Aside--$7 million; and
--Violence against Women Health Initiative, (Office On Women's
Health)--$10 million.
Thank you again, for your dedicated support of these programs and
for considering our request.

[This statement was submitted by Kim Gandy, President and CEO,
National
Network to End Domestic Violence.]
______

Prepared Statement of the National Nurse-Led Care Consortium
On behalf of the National Nurse-Led Care Consortium (NNCC), I would
like to thank the members of the Subcommittee for the opportunity to
submit testimony regarding the importance of fully funding nursing
workforce programs and how these programs impact nurses working in
nurse-led models of care. Specifically, NNCC requests that $266 million
be appropriated for the Nursing Workforce Development Programs
(authorized under Title VIII of the Public Health Service Act [42
U.S.C. 296 et seq.]), and $170 million be appropriated for the National
Institute of Nursing Research (NINR).
NNCC is a 501(c)(3) nonprofit public health organization that seeks
to advance all forms of nurse-led care through policy development,
technical assistance, and innovative programing. Because of their
education and community connections, advanced practice nurses are able
to deliver high quality and cost-effective services to our most
vulnerable populations. The health centers and practices NNCC
represents are primarily run by nurse practitioners. Nurse
practitioners and other advanced practice nurses offer patient-centered
care that is sensitive to patient needs and concerns. They work in all
types of healthcare settings and specialties, such as retail health and
acute care, but their services primarily revolve around primary care.
NNCC assists these nurses by advocating for policy reforms that
increase access to nurse-led care, designing community-based programs
that address public health needs and offering expert technical
assistance that enhances the sustainability of innovative nurse-led
practice models.
As part of its mission, NNCC represents nonprofit, nurse-managed
health clinics (sometimes called nurse-managed health centers or
NMHCs). Section 254c-1a of the Public Health Service 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.'' \1\ Recent estimates indicate that
there are approximately 500 nurse-managed clinics nationwide, including
birthing centers and school-based clinics. There are also approximately
2,500 nurse-led retail clinics based in pharmacies, grocery stores and
other retail outlets around the country. Nurse-led models of care offer
a full range of health services, including health promotion and disease
prevention, to low-income, underinsured, and uninsured clients.
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\1\ Section 5208 of the Affordable Care Act.
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Because many nurse-led models of care are affiliated with schools
of nursing, these clinics also help to build the capacity of the
community-based healthcare workforce by acting as teaching and practice
sites for nursing students and other health professionals. Each clinic
associated with a nursing institution provides clinical placements for
an average of 50 to 60 students a year.\2\ These students include
graduate and undergraduate nursing students, as well as medical,
physician assistant, and social work students, among others.\3\
Students participating in post-clinical focus groups express a high
level of satisfaction with NMHC-based clinical placements, commenting
that their experience in NMHCs highlighted the need to reduce
healthcare disparities and respect patient diversity. A large
percentage of the Federal funding for academically-affiliated NMHCs
comes from the Title VIII Nurse Education, Practice, Quality, and
Retention (NEPQR) program. Granting the requested appropriation will
help ensure NMHCs and others forms of nurse-led care can continue
taking advantage of the NEPQR program. Nurse-led clinical placements
are particularly important to nursing education, because they offer
nursing students hands-on experience working in underserved
communities. These clinical placement sites also provide students with
the opportunity to form relationships with nurse mentors working in
leadership roles that can help build important business development and
practice management skills often underemphasized in traditional nursing
school curriculums.
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\2\ NNCC membership survey.
\3\ NNCC membership survey.
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One good example of the benefit of Title VIII funding to nurse-led
clinics comes from the Vanderbilt University School of Nursing, which
received a $999,101 grant from the NEPQR program in 2017. The 2-year
grant gives the Clinic at Mercury Courts, a nurse-managed primary care
clinic located in one of Nashville's most economically depressed areas,
the resources to add a psychiatric mental health nurse practitioner,
social worker, and psychiatrist to its existing primary care team. The
rate of substance abuse and mood disorders experienced by the community
served by this clinic is more than four times the national average. The
additional providers enable the clinic to comprehensively screen and
treat both medical and behavioral health conditions, while addressing
some of the problems associated with the deepening opioid crisis. In
additional to its clinical services, the Mercury Courts clinic
strengthens nursing education by offering clinical placements to
nursing, medical, pharmacy, social work, and physician assistant
students from a variety of disciplines and schools, including Lipscomb
University, Tennessee State University, Trevecca Nazarene University,
University of Tennessee, and Vanderbilt's College of Arts and Science,
Owen Graduate School of Management, Peabody College and Schools of
Nursing, Divinity, Law and Medicine.
Title VIII funding is crucial to the success of the Mercury Court
clinic, as well as hundreds of others like it across the nation. For
this reason, NNCC again requests that the Subcommittee appropriate $266
million to support Title VIII programs.
With regard to the National Institute of Nursing Research, NNCC
believes that fully funding nursing research is vital to the
recruitment and retention of qualified nursing faculty. According to
the American Association of Colleges of Nursing's report on 2016-2017
Enrollment and Graduations in Baccalaureate and Graduate Programs in
Nursing, U.S. nursing schools turned away 64,067 qualified applicants
from baccalaureate and graduate nursing programs in 2016 due to an
insufficient number of faculty, clinical sites, classroom space,
clinical preceptors, and budget constraints.\4\ Appropriating $170
million to the National Institute of Nursing Research will ensure that
there are adequate research opportunities available to attract and
retain experienced nursing faculty, while also improving nursing
practice and patient outcomes. These enhanced research opportunities,
in conjunction with the increase in clinical placement sites created by
nurse-led practices funded through the requested Title VIII
appropriation, constitute a two-pronged strategy for alleviating the
nursing faculty shortage.
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\4\ American Association of Colleges of Nursing, Nursing Faculty
Shortage Information
Sheet, Available here: http://www.aacnnursing.org/News-Information/
Fact-Sheets/Nursing-
Faculty-Shortage.
---------------------------------------------------------------------------
NNCC once again thanks the members of the Subcommittee for the
opportunity to submit this testimony. If there any questions, please do
hesitate to contact me at [email protected].
Sincerely.

[This statement was submitted by Cheryl Fattibene, MSN, MPH, CRNP,
Chief Nurse Practitioner, National Nurse-Led Care Consortium.]
______

Prepared Statement of the National Psoriasis Foundation
On behalf of the more than 8 million Americans living with
psoriasis and psoriatic arthritis, the National Psoriasis Foundation
(NPF) requests that the committee include $1 million in funding, along
with corresponding report language, for the Centers for Disease Control
and Prevention (CDC) in the fiscal year 2019 Labor, Health and Human
Services, and Education, and Related Agencies Appropriations Act.
Specifically, this funding would be used to establish a grant-based
network of researchers to explore the connection between psoriasis,
psoriatic arthritis, and other comorbid conditions, such as
cardiovascular disease, obesity and mental health.
As the patient advocacy organization for the psoriatic disease
community for over 50 years, the NPF understands the needs of
individuals with psoriasis, a systemic, immune-mediated disease that
affects approximately 3 percent of the adult U.S. population.\1\
Individuals living with psoriasis experience periods of intense pain,
fatigue, unbearable itching, whole-body inflammation, along with
flaking and bleeding of large swaths of skin. While these symptoms can
be managed with a range of treatments, there is no cure. Up to 30
percent of individuals with psoriasis will also develop psoriatic
arthritis, an inflammatory form of arthritis that can lead to
irreversible joint damage if left untreated.\2\ A recent study
estimates that psoriasis costs the Nation as much as $135 billion per
year in direct and indirect costs (in 2013 dollars).\3\
---------------------------------------------------------------------------
\1\ Helmick CG, Lee-Han H, Hirsch SC, Baird TL, Bartlett CL.
Prevalence of Psoriasis Among Adults in the U.S: 2003--2006 and 2009--
2010 National Health and Nutrition Examination Surveys. American
journal of preventive medicine. 2014;47(1):37-45. doi:10.1016/
j.ampere.2014.02.012.
\2\ Goldman DD, Antoni C, Mease P, et al. Psoriatic arthritis:
epidemiology, clinical features, course, and outcome. Ann Rheum Dis.
2005;64(suppl 2):ii14--ii17.--See more at: http://
www.rheumatologynetwork.com/psoriatic-arthritis/classification-
criteria-psoriatic-arthritis-caspar#sthash.Or6zBLgM.dpuf.
\3\ Brezinski, E.A., Dhillon, J.S., and Armstrong, A.W. Economic
burden of psoriasis in the United States: a systematic review. JAMA
Dermatol. 2015; 151: 651--658.
---------------------------------------------------------------------------
As chronic, immune-mediated, inflammatory diseases, psoriasis and
psoriatic arthritis affect more than the skin and joints. Individuals
living with psoriatic disease face a higher incidence of comorbid
conditions, including cardiovascular disease,\4\ diabetes,\5\
hypertension,\6\ and stroke.\7\ A recent study also found that the risk
for cardiovascular disease may increase with the severity of psoriatic
disease.\8\ Compared to the general population, the psoriasis community
also has a higher prevalence of atherosclerosis,\9\ Crohn's
disease,\10\ cancer,\11\ metabolic syndrome,\12\ obesity \13\ and liver
disease.\14\ In addition, individuals with psoriatic disease are 39
percent and 31 percent more likely to be diagnosed with depression and
anxiety, respectively.\15\ Of the estimated annual cost of psoriasis,
$36.4 billion is spent on healthcare costs of comorbid conditions,
making their identification and treatment a high priority both to
improve patient health and reduce the economic burden of disease.\16\
However, while the link between psoriatic disease and comorbid
conditions has been observed, the underlying, biological connection is
not fully understood.
---------------------------------------------------------------------------
\4\ Neimann AL, Shin DB, Wang X, Margolis DJ, Troxel AB, Gelfand
JM. Prevalence of cardiovascular risk factors in patients with
psoriasis. Journal of the American Academy of Dermatology. 2006;
55(5):829-35. And: Prodanovich S, Kirsner RS, Kravetz JD, Ma F,
Martinez L, Federman DG. Association of psoriasis with coronary artery,
cerebrovascular, and peripheral vascular diseases and mortality.
Archives of Dermatology. 2009 Jun; 145(6):700-3.
\5\ Armstrong AW, Harskamp CT, Armstrong EJ. Psoriasis and the risk
of diabetes mellitus: a systematic review and meta-analysis. JAMA
Dermatology. 2013 Jan; 149(1): 84-91. And: Neimann AL, Shin DB, Wang X,
Margolis DJ, Troxel AB, Gelfand JM. Prevalence of cardiovascular risk
factors in patients with psoriasis. Journal of the American Academy of
Dermatology. 2006; 55(5):829-35.
\6\ Robinson D Jr., Hackett M, Wong J, Kimball AB, Cohen R, Bala M;
the IMID Study Group. Co-occurrence and comorbidities in patients with
immune-mediated inflammatory disorders: an exploration using US
healthcare claims data, 2001-2002. Current medical research and
opinion. 2006; 22(5):989-1000. And: Armstrong AW, Harskamp CT,
Armstrong EJ. The association between psoriasis and hypertension: a
systematic review and meta-analysis of observational studies. Journal
of Hypertension. 2012 Dec 15. [Epub ahead of print].
\7\ Gelfand JM, Dommasch ED, Shin DB, Azfar RS, Kurd SK, Wang X,
Troxel AB. The Risk of Stroke in Patients with Psoriasis. Journal of
Investigative Dermatology. 2009; 129, 2411--2418.
\8\ Naik HB, Natarajan B, Stansky E, Ahlman MA, Teague H,
Salahuddin T, Ng Q, Joshi AA, Krishnamoorthy P, Dave J, Rose SM,
Doveikis J, Playford MP, Prussick RB, Ehrlich A, Kaplan MJ, Lockshin
BN, Gelfand JM, Mehta NN. Severity of Psoriasis Associates With Aortic
Vascular Inflammation Detected by FDG PET/CT and Neutrophil Activation
in a Prospective Observational Study. Arterioscler Thromb Vasc Biol.
2015 Dec;35(12):2667-76. doi: 10.1161/ATVBAHA.115.306460. Epub 2015 Oct
8.
\9\ Prodanovich S, Kirsner RS, Kravetz JD, Ma F, Martinez L,
Federman DG. Association of psoriasis with coronary artery,
cerebrovascular, and peripheral vascular diseases and mortality.
Archives of Dermatology. 2009 Jun; 145(6):700-3.
\10\ Najarian DJ, Gottlieb AB. Connections between psoriasis and
Crohn's disease. Journal of the American Academy of Dermatology 2003;
48:805-21.
\11\ Gelfand JM, Shin DB, Neimann AL, Wang X, Margolis DJ, Troxel
AB. The risk of lymphoma in patients with psoriasis. Journal of
Investigative Dermatology. 2006 Oct; 126(10):2194-201.
\12\ Azfar RS, Gelfand JM. Psoriasis and metabolic disease:
epidemiology and pathophysiology. Current Opinion in Rheumatology.
2008; 20(4)416-22. And: Armstrong AW, Harskamp CT, Armstrong EJ.
Psoriasis and metabolic syndrome: A systematic review and meta-analysis
of observational studies. Journal of the American Academy of
Dermatology. 2013 Apr; 68(4):654-62.
\13\ Ogden CL, Fryar CD, Carroll MD, Flegal KM. Mean body weight,
height and body mass index, United States 1960-2002. Advance Data 2004;
347:1-17.
\14\ Robinson D Jr., Hackett M, Wong J, Kimball AB, Cohen R, Bala
M; the IMID Study Group. Co-occurrence and comorbidities in patients
with immune-mediated inflammatory disorders: an exploration using US
healthcare claims data, 2001-2002. Current medical research and
opinion. 2006; 22(5):989-1000.
\15\ Kurd, S. K., Troxel, A. B., Crits-Christoph, P., & Gelfand, J.
M. (2010). The risk of depression, anxiety and suicidality in patients
with psoriasis: A population-based cohort study. Archives of
Dermatology, 146(8), 891--895. http://doi.org/10.1001/
archdermatol.2010.186.
\16\ Brezinski, E.A., Dhillon, J.S., and Armstrong, A.W. Economic
burden of psoriasis in the United States: a systematic review. JAMA
Dermatol. 2015; 151: 651--658.
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The requested funding would allow the CDC to build on its previous
work with psoriatic disease to better understand the connection between
psoriasis, psoriatic arthritis, and other chronic conditions. As you
are aware, $1.5 million was appropriated in fiscal year 2010 for the
CDC to develop a public health agenda on psoriatic disease. In
developing the public health agenda, the CDC met with experts and
reviewed existing peer-reviewed public health literature to summarize
current knowledge and identify needs and gaps.\17\ The report
identified the need for further research on the relationship between
psoriatic disease and comorbid conditions along with a gap in knowledge
about the relationship between the prevalence of comorbid conditions
within mild, moderate, and severe psoriatic disease.
---------------------------------------------------------------------------
\17\ Centers for Disease Control and Prevention: National Center
for Chronic Disease Prevention and Health Promotion. Developing and
Addressing the Public Health Agenda for Psoriasis and Psoriatic
Arthritis. 2010. https://www.cdc.gov/psoriasis/pdf/Public-Health-
Agenda-for-Psoriasis.pdf.
---------------------------------------------------------------------------
Following this report, the CDC authored a professional judgment
document in 2015 that identified two high-priority research areas,
including the need to research the relationship between psoriatic
disease and other chronic conditions. In the professional judgment, the
CDC stated that $1 million is required to support the establishment of
a grant-based research network that would explore the complex
relationships between these conditions. With a research network in
place, this gap in knowledge could be filled with a deeper
understanding of psoriatic disease and other chronic conditions,
ultimately leading to new prevention and treatment strategies, which
could contribute to improved quality of life and lower healthcare costs
for patients.
In fiscal year 2018, Congress included language in the reports
accompanying the House and Senate Labor, Health and Human Services, and
Education, and Related Agencies Appropriations bills directing the CDC
to develop an action plan for how it could leverage funding from
existing programs to carry out this research. Unfortunately, the CDC
has confirmed, both in its fiscal year 2019 congressional budget
justification and in discussions with the NPF, that it is unable to use
funds for existing programs to carry out research on the comorbid
conditions of psoriatic disease or any of the other research priorities
identified in the public health agenda. As noted in the CDC's budget
justification, ``CDC has not received funding for Psoriasis and
Psoriatic Arthritis since 2010, and does not currently have specific
programming activities addressing these conditions.''
The outcomes of this research would have far reaching benefits both
for the psoriatic disease community and for patients and researchers in
other disease spaces. For the psoriatic disease community, this
research could lead to targeted public health interventions for better
disease management and earlier identification of comorbid conditions.
Importantly, the benefits of this research will extend beyond the
psoriatic disease community. Scientists and clinicians conducting
research on related conditions, such as cardiovascular disease,
obesity, and mental health, would gain a better understanding of the
underlying causes of these diseases, potentially leading to better
treatments or cures. This network of researchers would also foster a
collaborative environment that would bridge scientific disciplines and
provide opportunities for partnership across research programs.
Furthermore, the CDC would have an opportunity to leverage funding in
other programs such as Arthritis, Cardiovascular Health, and Mental
Illness for improved fiscal stewardship of appropriated funds and more
collaborative research funded by the agency.
To guide the use of these funds, we request that you include the
following report language under the Chronic Disease Prevention and
Health Promotion subheading within the CDC section of the report.
Psoriasis and Psoriatic Arthritis.--The Committee recognizes the
growing body of evidence linking psoriatic disease, which
impacts more than eight million Americans, to other
comorbidities such as cardiovascular disease, mental health and
substance abuse challenges, kidney disease, and other
conditions. The Committee commends the CDC for identifying
opportunities for expanded research on psoriatic disease in its
Public Health Agenda for Psoriasis and Psoriatic Arthritis and
directs CDC to increase funding for intramural and grant-based
research on the comorbidities of psoriatic disease, including
research that can be done in collaboration with or funded by
other disease programs such as Arthritis, Cardiovascular
Health, or Mental Illness.
Thank you for your attention to our comments and consideration of
our request. We look forward to working with you to fund research that
expands our knowledge of psoriatic disease and comorbid conditions to
ultimately improve the lives of the over 8 million Americans living
with psoriasis and psoriatic arthritis, as well as the many more who
live with other chronic conditions. If you or your colleagues have any
questions, please feel free to contact the NPF by reaching out to
Patrick Stone, Vice President of Government Relations and Advocacy at
[email protected].

[This statement was submitted by Patrick Stone, Vice President,
Government Relations and Advocacy.]
______

Prepared Statement of the National PTA and PACER Center
National PTA and the PACER Center would like to thank the Senate
Appropriations Subcommittee on Labor, Health and Human Services,
Education and Related Agencies (L-HHS-ED) for soliciting the views and
recommendations of public witnesses on fiscal year 2019 funding.
National PTA and the PACER Center, two of the nation's leading family
engagement organizations, respectfully request that the Senate L-HHS-ED
Appropriations Subcommittee include $10 million for the Statewide
Family Engagement Centers (SFECs) grant program in fiscal year 2019
funding legislation. National PTA is the oldest and largest volunteer
child advocacy association in the United States with 4 million PTA
members working to make every child's potential a reality by engaging
and empowering families and communities to advocate for all children.
Since 1977, PACER Center, a nationwide parent engagement center, has
enhanced the quality of life and expanded opportunities for children,
youth and young adults by ensuring that families have the tools to help
their children succeed in school and life.
Our organizations request $10 million in funding for the fiscal
year 2019 U.S. Department of Education's SFECs grant program. This
fiscal year 2019 investment comes after you and your Senate
counterparts saw fit to provide $10 million for this program in the L-
HHS-ED portion of the fiscal year 2018 Omnibus Appropriations bill. We
very much appreciate the Subcommittee's leadership in making this 2018
investment and urge continued funding for this program in fiscal year
2019.
Our organizations support high-quality public education that
ensures families are engaged in their child's education. More than 40
years of research shows-regardless of a family's income or
socioeconomic background-students with engaged families attend school
more regularly, earn better grades, enroll in advanced-level programs
and have higher graduation rates.\1\ Additionally, teachers are more
likely to remain in schools where families are involved and where they
develop trusting relationships.\2\ Both the inclusion of SFECs in the
Every Student Succeeds Act (ESSA) and the $10 million appropriation in
fiscal year 2018 funding is evidence of Congress' recognition of the
importance of parent and family engagement.
---------------------------------------------------------------------------
\1\ Henderson, A. T., & Mapp, K. L. (2002). A New Wave of Evidence:
The Impact of School, Family, and Community Connections on Student
Achievement. Annual Synthesis 2002. National Center for Family and
Community Connections with Schools. Retrieved from https://
www.sedl.org/connections/resources/evidence.pdf.
\2\ Allensworth, E, S. Ponisciak, and C. Mazzeo. (2009). The
Schools Teachers Leave: Teacher Mobility in Chicago Public Schools.
Chicago, IL: Consortium on Chicago School Research at the University of
Chicago Urban Education Institute. Retrieved from https://
consortium.uchicago.edu/sites/default/files/publications/
CCSR_Teacher_Mobility.pdf.
---------------------------------------------------------------------------
An fiscal year 2019 $10 million investment in the SFECs grant
program will further build capacity for States and school districts to
systematically embed family engagement policies and practices in their
education plans. The program will provide much needed professional
development for educators and school leaders to strengthen school-
family partnerships and parent-teacher relationships. This additional
investment will also provide direct services to families to give them
the tools to effectively work with their child's school to improve
their child's academic outcomes and overall well-being.
With ESSA implementation well underway, especially at the school
district and school level, school leaders and parents need the
resources that SFECs can provide to engage parents as stakeholders and
effectively implement ESSA as Congress intended. Therefore, National
PTA and PACER Center urge the L-HHS-ED Subcommittee to include $10
million for the Statewide Family Engagement Centers program in the
fiscal year 2019 L-HHS-ED appropriations bill.
We appreciate your consideration of this request and are happy to
follow up on any questions you may have.

[This statement was submitted by Nathan R. Monell, CAE, Executive
Director, National PTA and Paula F. Goldberg, Executive Director, PACER
Center.]
______

Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair, National Respite Coalition
(NRC), which is a network of State respite coalitions, respite
providers, family caregivers, and national, State and local
organizations that support respite. We are requesting that the
Subcommittee include $5.0 million for the Lifespan Respite Care Program
administered by the Administration for Community Living, Department of
Health and Human Services, in the fiscal year 2019 Labor, HHS, and
Education Appropriations bill. This modest increase will enable:
--State replication of Lifespan Respite best practices to allow
family caregivers, regardless of the care recipient's age or
disability, to have access to affordable respite.
--Improvement in respite quality and expansion of respite capacity;
and
--Greater consumer direction by providing family caregivers with
training and information on how to find, use and pay for both
formal and informal respite services.
Respite Care Saves Money and is it Helpful to the People it Serves
Compelling budgetary benefits accrue because of respite. Delaying a
nursing home placement for individuals with Alzheimer's or avoiding
hospitalization for children with autism can save Medicaid billions of
dollars. Researchers at the University of Pennsylvania studied the
records of 28,000 children with autism enrolled in Medicaid in 2004.
They concluded that for every $1,000 States spent on respite, there was
an 8 percent drop in the odds of hospitalization (Mandell, et al.,
2012). A US Department of Health and Human Services report found that
reducing key stresses on caregivers through services such as respite
would reduce nursing home entry (Spillman and Long, USDHHS, 2007).
Respite may reduce administrative burdens, help delay or avoid
facility-based placements, improve maternal employment (Caldwell,
2007), strengthen marriages (Harper, 2013), and significantly reduce
caregiver stress levels linked to improved caregiver health (Zarit, et
al., 2014). In a survey of caregivers of individuals with Multiple
Sclerosis, two-thirds said that respite would help keep their loved one
at home. When the care recipient with MS also has cognitive impairment,
the percentage of those saying respite would be helpful to avoid or
delay nursing home placement jumps to 75 percent (NAC, 2012).
With at least two-thirds (66 percent) of family caregivers in the
workforce (Matos, 2015), U.S. businesses lose from $17.1 to $33.6
billion per year in lost productivity of family caregivers who are
often overwhelmed by caregiving responsibilities (MetLife Mature Market
Institute, 2006). Higher absenteeism among working caregivers costs the
U.S. economy an estimated $25.2 billion annually (Witters, 2011).
Respite for working family caregivers could improve job performance,
saving employers billions.
Who Needs Respite?
More than 43 million adults in the U.S. are family caregivers of an
adult or a child with a disability or chronic condition (National
Alliance for Caregiving (NAC) and AARP Public Policy Institute, 2015).
The estimated economic value of family caregiving of adults alone is
approximately $470 billion annually (Reinhard, et al., 2015). Eighty
percent of those needing long-term services and supports (LTSS) are
living at home. Two out of three (66 percent) older people with
disabilities who receive LTSS at home get all their care exclusively
from family caregivers (Congressional Budget Office, 2013).
Immediate concerns about how to provide care for a growing aging
population are paramount. However, caregiving is a lifespan issue with
the majority of family caregivers caring for someone between the ages
of 18 and 75 (53 percent) (NAC and AARP Public Policy Institute, 2015).
The most recent National Survey of Children's Health found that 14.6
million children under age 18 have special healthcare needs (National
Survey of Children's Health, 2016).
National, State and local surveys have shown respite to be the most
frequently requested service by family caregivers (Maryland Caregivers
Support Coordinating Council, 2015; The Arc, 2011; National Family
Caregivers Association, 2011). Yet, 85 percent of family caregivers of
adults are not receiving respite services at all (NAC and AARP Public
Policy Institute, 2015). Nearly half of family caregivers of adults (44
percent) identified in the National Study of Caregiving were providing
substantial help with healthcare tasks. Of this group, despite their
high level of care, fewer than 17 percent used respite (Wolff, et al.,
2016). A 2014 Rand Corporation report prepared for the Elizabeth Dole
Foundation, Hidden Heroes: America's Military Caregivers, recommended
that respite care should be more widely available to military
caregivers (Ramchand, et al., 2014). The Dole Foundation's Respite
Impact Council found that traditional respite services do not address
the needs of military caregivers and the Lifespan Respite Care program
should be fully funded to help meet those needs.
Respite Barriers and the Effect on Family Caregivers
While most families want to care for family members at home, and
many family caregivers rate their caregiving experiences as positive,
research shows that family caregivers are at risk for emotional,
mental, and physical health problems (Population Reference Bureau,
2016:American Psychological Association, 2012; Spillman, J., et al.,
2014). When caregivers lack effective coping styles or are depressed,
care recipients may be at risk for falling, developing preventable
secondary health conditions or limitations in functional abilities. The
risk of care recipient abuse increases when caregivers are depressed or
in poor health (American Psychological Association, nd). Parents of
children with special healthcare needs report poorer general health,
more physical health problems, worse sleep, and increased depressive
symptoms compared to parents of typically developing children (McBean,
A, et al., 2013).
Respite, that has been shown to ease family caregiver stress, is
too often out of reach or completely unavailable. A survey of nearly
5000 caregivers of individuals with intellectual and developmental
disabilities (I/DD) found that caregivers report physical fatigue (88
percent), emotional stress (81 percent) and upset or guilt (81
percent), yet more than 75 percent could not find respite (The Arc,
2011). Despite their higher burden of care, caregivers of persons with
dementia are more prone to underutilizing and/or delaying respite. The
2013 Johns Hopkins Maximizing Independence at Home Study, in which
researchers surveyed persons with dementia residing at home with their
informal caregivers, found that nearly half of the caregivers had unmet
needs for mental healthcare and most of these, according to the
researchers, needed emotional support or respite care (Black, B, et
al., 2013). Respite may not exist at all for children with autism,
adults with ALS, MS, spinal cord or traumatic brain injuries, or
individuals with serious emotional conditions.
Barriers to accessing respite include fragmented and narrowly
targeted services, cost, and the lack of information about respite or
how to find or choose a provider. 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 Care Program
The Lifespan Respite Care Program, designed to address these
barriers to respite quality, affordability and accessibility, is a
competitive grant program administered by the Administration for
Community Living (ACL) in its Center for Integrated Programs. The
premise behind the program is both care relief and cost effectiveness.
Lifespan Respite provides funding to States to expand and enhance local
respite services across the country, coordinate community-based respite
services to reduce duplication and fragmentation, improve coordination
with other community resources, and to improve respite access and
quality. Under the program, 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. Those eligible 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 basic needs.
To date, 37 States and the District of Columbia have received basic
grants to build coordinated systems of community-based respite
services. Many of these States have also received follow on grants to
provide or expand direct services, to help integrate services and grant
activities into statewide long-term services and support systems, and
to develop long-term sustainability plans.
How is Lifespan Respite Program Making a Difference?
In describing the Lifespan Respite Care Program, a distinguished
panel from the National Academies of Sciences, Engineering, and
Medicine recently concluded in the report Families Caring for an Aging
America, ``Although the program is relatively small, respite is one of
the most important caregiver supports.'' With limited funds, Lifespan
Respite grantees are engaged in innovative activities:
--AL, AZ, DE, MT, NE, NV, NC, OK, RI, SC, TN, VA, and WA, have
successfully used consumer-directed respite vouchers for
serving underserved populations, such as individuals with MS or
ALS, adults with intellectual or developmental disabilities (I/
DD), children with autism, or those on waiting lists for
services.
--ID, IL, IA, and NE offer emergency respite support.
--AL, AR, CO, NE, NY, OH, PA, SC and TN are providing new volunteer
or faith-based respite services.
--Innovative and sustainable respite services, funded in CO, MA, NC,
NY, OH, PA, and SC through mini-grants to community-based
agencies, have documented benefits to family caregivers.
--Respite provider recruitment and training are priorities in AR, NE,
NH, VA, and WI.
Additional partnerships between State agencies are changing the
landscape. The AZ Lifespan Respite program housed in Aging and Adult
Services partnered with AZ's Children with Special Health Care Needs
Program to provide respite vouchers to families across the age and
disability spectrum. The OK Lifespan Respite program partnered with the
State's Transit Administration to develop mobile respite to serve
isolated rural areas of the State. The WA State Lifespan Respite
grantee partnered with Tribal entities to provide respite to kinship
caregivers. States are building respite registries and ``no wrong door
systems'' in partnership with Aging and Disability Resource Centers/No
Wrong Door Systems to help family caregivers access respite and funding
sources. Funding must be increased to help sustain these innovative
State efforts and expand grants to new States. States are developing
long-term sustainability plans, but without Federal support, many of
the grantees will lose funding.
Funding Levels
Congress initially passed the Lifespan Respite Care Program in a
bipartisan manner and the program maintains strong, bipartisan support
in Congress. The program was authorized at $50 million/year based on
the magnitude of our Nation's family caregivers' needs, but Congress
first appropriated funds for the program in fiscal year 2009 at $2.5
million, and continued to fund the program at this level through fiscal
year 2012. The program received slightly less funding in fiscal year
2013-fiscal year 2015 due to sequestration. In fiscal year 2016, given
the strong bipartisan support for the program, Congress increased
appropriations by $1 million to $3.36 million. This allowed six of the
current grantees to receive 1 year expansion grants to provide direct
services to unserved groups, and allowed Maryland and Mississippi to
receive first-time awards. For fiscal year 2017, the program was once
again funded at $3.36. This permitted funding of two new States (ND and
SD) and enabled 12 grantees to continue their ground-breaking work to
serve more families. The increase in funding to $4.1 million in the
fiscal year 2018 Omnibus spending bill, will again allow ACL to fund
several new States or enable additional grantees to continue their
important initiatives.
No other Federal program has respite as its sole focus. The
Lifespan Respite Care Program is the only Federal program that helps
ensure respite quality and choice, allows funds for respite start-up,
training and coordination, and addresses basic accessibility and
affordability issues for families regardless of age or disability
issues. We urge you to include $5 million in the fiscal year 2019
Labor, HHS, and Education appropriations bill. Families will be able to
keep loved ones at home, saving Medicaid and other Federal programs
billions of dollars.
For more information or a list of complete references, please
contact Jill Kagan, National Respite Coalition at
[email protected].

[This statement was submitted by Jill Kagan, Chair, National
Respite Coalition.]
______

Prepared Statement of the National Rural Health Association
support strong funding for the rural health safety net
On behalf of the National Rural Health Association (NRHA) we ask
that you continue to support several critically important rural health
programs as you move forward with the fiscal year 2019 funding
measures. We thank you for your leadership and support for rural health
programs and hope you will continue these important efforts.
NRHA is a national nonprofit membership organization with more than
21,000 members with a mission to provide leadership on rural health
issues. NRHA membership consists of a diverse collection of individuals
and organizations that share a common interest in ensuring all rural
communities have access to quality, affordable healthcare.
We greatly appreciate the efforts of the Subcommittee on Labor,
Health and Human Services, Education, and Related Agencies and applaud
your leadership in supporting rural health programs. This letter
outlines recommendations that we believe will strengthen the rural
healthcare safety net while ensuring that rural Americans maintain
their access to critical services.
While we understand the current Federal budget situation, rural
health discretionary spending is relatively small but is vitally
important for maintaining access to care for individuals living in
rural America. The rural healthy safety net programs outlined below are
effective and crucial for the physical and economic health of many
rural communities. Please continue to support these important programs
that help in solidifying the fragile rural healthcare infrastructure in
the United States.
Many vital discretionary programs help ensure the efficient and
equitable delivery of healthcare services in rural areas. To better
meet these needs, while simultaneously understanding the fiscal
constraints demanded by Congress, the NRHA requests a modest, across-
the-board funding increase of 10 percent (unless another amount has
specifically been authorized by law).
NRHA appreciates the support that Congress has for opioid funding,
but we ask that Congress ensure that this funding is targeted to the
communities that need it most. Rural areas have been disproportionately
impacted by the opioid epidemic, and we ask that additional funding for
programs critical to combatting this crisis be target to ensure a
robust rural response.
These programs include:
The Outreach Grant Program funds community-based project for 3
years to increase access to care. Typical projects include efforts to
address diabetes, obesity, health promotion, screening, wellness,
adolescent health, oral health, and mental health. More than 2 million
people have benefited and more than 85 percent of grant programs
continue to deliver services 5 years after Federal funding has ended.
Rural Access to Emergency Devices Grants assist rural communities with
the purchase of automated external defibrillators (AEDs) and provide
training in their use and maintenance.
Network Development Grants address the business and management
challenges of working with underserved rural communities. These three-
year projects help to overcome the fragmentation of healthcare services
in rural areas and help to achieve economies of scale. A Network
Development Planning Grant Program provides 1 year of funding to rural
communities that are beginning to examine the benefits of building
networks so they can initiate the process.
Rural Health Research/Policy funds the Federal Office of Rural
Health Policy (FORHP). FORHP administers rural health programs,
coordinates activities related to rural healthcare, and analyzes the
possible effects of policy on the 60 million rural Americans and
advises the Secretary on access to care, the viability of rural
hospitals, and the availability of physicians and other health
professionals.
State Offices of Rural Health, located in all 50 states, help their
individual rural communities build healthcare delivery systems. They
accomplish this mission by collecting and disseminating information,
providing technical assistance, helping to coordinate rural health
interests state-wide, and by supporting efforts to improve recruitment
and retention of health professionals.
Rural Hospital Flexibility Grants are used by each state to
implement new technologies, strategies and plans in Critical Access
Hospitals (CAH). CAHs provide essential services to a community. Their
continued viability is critical for access to care and the health of
the rural economy.
EMS Sustainability Grants are included in this program. These
grants build an evidence base for sustainable rural EMS model, and they
are essential in the changing landscape of rural EMS (decreased
volunteer ambulance staff, declining financial support, loss of local
rural Emergency Departments following rural hospital closures, and
increased educational requirements for EMTs and paramedics.) These
grant programs offer the opportunity to develop and implement projects
to ensure continued access to EMS in rural America.
Additional funding for the Rural Hospital Flexibility Grants in the
2018 Omnibus allowed for the Vulnerable Rural Hospitals Assistance
Program. Through this program, HRSA will fund one entity up to $800,000
to provide targeted, in-depth assistance to vulnerable rural hospitals
struggling to maintain healthcare services with the goal for residents
in those rural communities to continue to have access to essential
healthcare. The awardee will work with individual hospitals and their
communities on ways to understand community health needs and find ways
to ensure hospitals and communities can keep needed care locally.
Telehealth funding is for the Office for the Advancement of
Telehealth, including the Telehealth Network Grant Program, which
promotes the effective use of technologies to improve access to health
services and to provide distance education for health professionals.
National Health Service Corps supports qualified healthcare
providers that are dedicated to working in underserved areas by
providing scholarship and loan-repayment programs for those serving
medically underserved communities and populations with health
professional shortages and/or high unmet needs for health services.
Title VII and VIII programs, including Rural Physician Training
Grants, Area Health Education Centers, and Geriatric programs, provide
policy leadership and grant support for health professions workforce
development for shortage areas.
National Health Care Workforce Commission, a multi-stakeholder
workforce advisory committee charged with developing a national
healthcare workforce strategy, was created under the Affordable Care
Act but no appropriation has been made for the Commission and
consequently it has not met since it was created.
NRHA is grateful for your support in recognizing the need for
providing a sound future for the delivery of rural healthcare. We hope
you will continue to support the millions of Americans in rural and
underserved areas by acknowledging and considering these funding
priorities.

FUNDING FOR THE RURAL HEALTH SAFETY NET
[Dollars in millions]
----------------------------------------------------------------------------------------------------------------
Fiscal Year
--------------------------------------------------------------
2015 2016 2017 2017 2018 2019 NRHA
Enacted Omnibus House Senate Omnibus Request
----------------------------------------------------------------------------------------------------------------
Rural Outreach & Network Grants \1\.............. 59 63.5 65.5 65.5 65.5 72.4
Rural Health Research/Policy..................... 9.3 9.4 9.4 9.4 9.4 10.4
State Offices of Rural Health.................... 9.5 9.5 10.5 9.5 10 10
Rural Opioid Reversal Grant...................... 10 0 \2\ 0 \2\ 11.1
Rural Hospital Flexibility Grants................ 41.6 41.6 45.6 41.6 49.6 50.4
Telehealth \3\................................... 14.9 17 19 18 18.5 21
National Health Service Corps.................... 0 0 0 0 0 337
National Health Care Workforce Commission........ 0 \4\ 0 \4\ 0 \4\ 0 \4\ 0 \4\ 3
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Title VII and VIII Programs of Particular Interest to Fund
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Rural Physician Training Grants.................. 0 \5\ 0 \5\ 0 \5\ 0 \5\ 0 \5\ 5.3
Area Health Education Centers.................... 30.3 30.3 30.3 30.3 30.3 33.5
Geriatric Programs............................... 34.2 38.7 38.7 38.7 38.7 42.8
----------------------------------------------------------------------------------------------------------------
Source: National Rural Health Association.

\1\ Rural & Community Access to Emergency Devices is funded through this program.
\2\ Program was not funded under HRSA, but funds were provided to combat the opioid epidemic in rural
communities through the Centers for Substance Abuse within SAMHSA.
\3\ Reflects only telehealth funding for the Office for the Advancement of Telehealth, including the telehealth
Network Grant Program.
\4\ No appropriation has been made for the Commission and consequently it has not met since it was created.
\5\ Funding was authorized but not appropriated.

______

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 2019 budget request for
NTID, one of nine colleges of RIT, in Rochester, N.Y. Created by
Congress by Public Law 89-36 in 1965, NTID provides a university-level
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. NTID students study at the
associate, baccalaureate, master's and doctoral levels as part of a
university (RIT) that includes more than 17,000 hearing students. NTID
also provides baccalaureate and graduate-level education for hearing
students in professions serving deaf and hard-of-hearing individuals.
budget request
On behalf of NTID, for fiscal year 2019 I would like to request
$76,000,000 for Operations. NTID has worked hard to manage its
resources carefully and responsibly. NTID actively seeks alternative
sources of public and private support, with approximately 29 percent of
NTID's Operations budget coming from non-Federal funds, up from 9
percent in 1970. Since fiscal year 2006, NTID raised $23.7 million in
support from individuals and organizations. NTID has also recognized
that construction funding is limited and planned for critical and long
overdue renovations using existing Federal and non-Federal funds.
NTID's fiscal year 2019 request of $76,000,000 in Operations would
allow NTID to build on the success of the NSF grant-funded DeafTEC
partnerships and new NTID Regional STEM Center (NRSC)-Southeast by
establishing three additional regional partnerships to serve deaf and
hard-of-hearing students in Western, Midwestern, and Northeastern
States by promoting training and postsecondary participation in STEM
fields, providing professional development for teachers, and developing
partnerships with business and industry to promote employment
opportunities. Via the NRSCs, deaf and hard-of-hearing middle school
students across the country would be introduced to STEM programs and
careers that will help inform their academic and career decisions. Deaf
and hard-of-hearing high school students could take NTID STEM dual
credit courses and participate in career exploration and preparation
programs that will help them transition from high school to college.
This funding would also allow NTID to admit all qualified students for
Fall 2019 enrollment, keep the fiscal year 2019 tuition increase
relatively low, and continue to offer Grants in Aid to more students.
With this funding, NTID can maintain newly added staff (sign language
interpreters and captionists) in student access services to meet
unprecedented demand, complete much needed capital and renovation
projects, and manage inflationary costs.
enrollment
Truly a national program, NTID has enrolled students from all 50
States. In Fall 2017 (fiscal year 2018), NTID's enrollment was 1,262
students. NTID's enrollment history over the last 10 years is shown
below:

NTID ENROLLMENTS: FISCAL YEAR 2009--FISCAL YEAR 2018
--------------------------------------------------------------------------------------------------------------------------------------------------------
Deaf/Hard-of-Hearing Students Hearing Students
----------------------------------------------------------------------------------- Grand
Fiscal Year Grad Interpreting Total
Undergrad RIT MSSE Sub-Total Program MSHCI MSSE Sub-Total
--------------------------------------------------------------------------------------------------------------------------------------------------------
2018...................................................... 1,025 56 9 1,090 147 15 10 172 1,262
2017...................................................... 1,078 44 14 1,136 140 8 16 164 1,300
2016...................................................... 1,167 53 15 1,235 151 N/A 27 178 1,413
2015...................................................... 1,153 44 16 1,213 146 N/A 28 174 1,387
2014...................................................... 1,195 42 18 1,255 147 N/A 30 177 1,432
2013...................................................... 1,269 37 25 1,331 167 N/A 31 198 1,529
2012...................................................... 1,281 42 31 1,354 160 N/A 33 193 1,547
2011...................................................... 1,263 40 29 1,332 147 N/A 42 189 1,521
2010...................................................... 1,237 38 32 1,307 138 N/A 29 167 1,474
2009...................................................... 1,212 48 24 1,284 135 N/A 31 166 1,450
--------------------------------------------------------------------------------------------------------------------------------------------------------
(In the chart above,
Grad RIT: other graduate programs at RIT;
MSSE: Master of Science in Secondary Education of Students who are Deaf or Hard of Hearing;
MSHCI: Master of Science in Health Care Interpretation.)

ntid academic programs
NTID offers high quality, career-focused associate degree programs
preparing students for specific well-paying technical careers. NTID
also provides transfer associate degree programs to better serve our
student population seeking bachelor's, master's, and doctoral degrees.
These transfer programs provide seamless transition to baccalaureate
and graduate studies in the other colleges of RIT.
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 assignment 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. Last year, 313
students participated 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
NTID deaf and hard-of-hearing students persist and graduate at
higher rates than the national persistence and graduation rates for all
students at 2-year and 4-year colleges. For NTID deaf and hard-of-
hearing graduates, over the past 5 years, an average of 94 percent have
found jobs commensurate with their education level. Of our fiscal year
2016 graduates (the most recent class for which numbers are available),
94 percent were employed 1 year later, with 70 percent employed in
business and industry, 20 percent in education and non-profits, and 10
percent in government.
Graduation from NTID has a demonstrably positive effect on
students' earnings over a lifetime, and results in a notable reduction
in dependence on Supplemental Security Income (SSI) and Social Security
Disability Insurance (SSDI). In fiscal year 2012, NTID, the Social
Security Administration (SSA), and Cornell University examined earnings
and Federal program participation data for more than 16,000 deaf and
hard-of-hearing individuals who applied to NTID over our entire
history. The study showed that NTID graduates, over their lifetimes,
are employed at a higher rate and earn more (therefore paying more in
taxes) than students who withdraw from NTID or attend other
universities. NTID graduates also participate at a lower rate in SSI
programs than students who withdrew from NTID.
Using SSA data, at age 50, 78 percent of NTID deaf and hard-of-
hearing graduates with bachelor degrees and 73 percent with associate
degrees report earnings, compared to 58 percent of NTID deaf and hard-
of-hearing students who withdrew from NTID and 69 percent of deaf and
hard-of-hearing graduates from other universities. Equally important is
the demonstrated impact of an NTID education on graduates' earnings. At
age 50, $58,000 is the median salary for NTID deaf and hard-of-hearing
graduates with bachelor degrees and $41,000 for those with associate
degrees, compared to $34,000 for deaf and hard-of-hearing students who
withdrew from NTID and $21,000 for deaf and hard-of-hearing graduates
from other universities.
An NTID education also translates into reduced dependency on
Federal transfer programs, such as SSI and SSDI. At age 40, less than 2
percent of NTID deaf and hard-of-hearing associate and bachelor degree
graduates participated in the SSI program compared to 8 percent of deaf
and hard-of-hearing students who withdrew from NTID. Similarly, at age
50, only 18 percent of NTID deaf and hard-of-hearing bachelor degree
graduates and 28 percent of associate degree graduates participated in
the SSDI program, compared to 35 percent of deaf and hard-of-hearing
students who withdrew from NTID.
access services
Access services include sign language interpreting, real-time
captioning, classroom notetaking services, captioned classroom video
materials, and assistive listening 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. Historically, NTID has followed a direct instruction model
for its associate-level classes, with limited need for sign language
interpreters, captionists, or other access services. However, the
demand for access services has grown recently as associate-level
students request communication based on their preferences.
During fiscal year 2017, 152,630 hours of interpreting were
provided--an increase of 31 percent compared to fiscal year 2010.
During fiscal year 2017, 25,952 hours of real-time captioning were
provided to students--a 33 percent increase over fiscal year 2010. The
increase in demand is partly a result of the increase in the number of
students enrolled in programs at RIT and the number of students with
cochlear implants. In fiscal year 2018, there were 576 deaf and hard-
of-hearing students enrolled in baccalaureate or graduate programs at
RIT, a 12 percent increase compared to fiscal year 2010, and 416
students with cochlear implants, a 52 percent increase over fiscal year
2010.
As a result, NTID's fiscal year 2019 funding request recognizes the
need to support additional access services staff and research on
technologies that might serve as an alternative to traditional access
services.
summary
NTID's fiscal year 2019 funding request ensures that we continue
our mission to prepare deaf and hard-of-hearing people to excel in the
workplace and expand our outreach to better prepare deaf and hard-of-
hearing students to excel in college. NTID students persist and
graduate at higher rates than national rates for all students. NTID
graduates have higher salaries, pay more taxes, and are less reliant on
Federal SSI programs. NTID's employment rate is 94 percent over the
past 5 years. Therefore, I ask that you please consider funding our
fiscal year 2019 request of $76,000,000 for Operations.
We are hopeful that the members of the Committee will agree that
NTID, with its long history of successful stewardship of Federal funds
and an outstanding educational record of service to 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.

[This statement was submitted by Dr. Gerard J. Buckley, President,
National Technical Institute for the Deaf, and Vice President and Dean,
Rochester Institute of Technology.]
______

Prepared Statement of the National Violence Prevention Network
Thank you for this opportunity to submit testimony in support of
funding for the National Violent Death Reporting System (NVDRS), which
is administered by the National Center for Injury Prevention and
Control at the Centers for Disease Control and Prevention (CDC). The
National Violence Prevention Network, a broad and diverse alliance of
health and welfare, suicide and violence prevention, and law
enforcement advocates supports continuing the funding level for fiscal
year 2019 at $23.5 million to allow for the nationwide expansion of the
NVDRS program including all 50 States, District of Columbia and U.S
territories. Fiscal year 2018 NVDRS funding is $23.5 million.
background
Each year, more than 61,000 Americans die violent deaths.\1\ In
addition, an average of 123 people \2\ (20 of which are military
veterans) \3\ take their own lives each day. Violence-related death and
injuries cost the United States $107 billion in medical care and loss
in productivity.\4\
The NVDRS program makes better use of data that are already being
collected by health, law enforcement, and social service agencies. The
NVDRS program, in fact, does not require collection of any new data.
Instead it links together information that, when kept in separate
compartments, is much less valuable as a tool to characterize and
monitor violent deaths. With a clearer picture of why violent deaths
occurs, law enforcement, public health officials and others can work
together to identify those at risk and target effective preventive
services.
Currently, NVDRS is only operating in 42 States.\5\ The just-passed
fiscal year 2018 funding level of $23.5 million will allow NVDRS to
begin operating in all 50 States, although that funding level will not
reach the totality of every State.
nvdrs in action
Opioid deaths are a serious public health issue. Drug overdose
deaths are the leading cause of injury deaths in America.\6\ It is
important to invest in surveillance of opioid addiction to determine
the extent of the problem and implement treatment options and
community-based prevention strategies. NVDRS has already proven to be
an invaluable tool in many States like Alaska, Indiana and Utah that
collect information, through toxicology reports, about prescription-
opioid overdose associated with violent deaths. Combined 2010 NVDRS
data showed that 24 percent of violent deaths tested were positive for
opiates.\7,8\
Children are often the most vulnerable as they are dependent on
their caregivers during infancy and early childhood. Sadly, NVDRS data
has shown that young children are at the greatest risk of homicide in
their own homes. Combined NVDRS data from 18 of the 42 States that
currently participate in NVDRS, showed that African American children
aged 4 years and under are more than three times as likely to be
victims of homicide than Caucasian children,\9\ and that homicides of
children aged four and under are most often committed by a parent or
caregiver in the home. The data further notes that household items, or
``weapons of opportunity,'' were most commonly used, suggesting that
poor stress responses may be factors in these deaths. Knowing the
demographics and methods of child homicides can lead to more effective,
targeted prevention programs.
Intimate partner violence (IPV) is another issue where NVDRS is
proving its value. While IPV has declined along with other trends in
crime over the past decade, thousands of Americans still fall victim to
it every year. An analysis of intimate partner homicide based on NVDRS
data from 18 States shows that intimate partners represented 87 percent
of intimate partner violence-related homicides victims and corollary
victims (family members, police officers, friends etc.) represented the
remaining 13 percent of victims.\10\
Despite being in its early stages in several States, NVDRS is
already providing critical information that is helping law enforcement
and public health officials target their resources to those most at
risk of intimate partner violence. For example, NVDRS data shows that
while occurrences are rare, most murder-suicide victims are current or
former intimate partners of the suspect or members of the suspect's
family. In addition, NVDRS data indicate that women are about seven
times more likely than men to be killed by a spouse, ex-spouse, lover,
or former lover, and most of these incidents occurred in the women's
homes.\7\
nvdrs & va suicides
Although it is preventable, every year more than 44,193 Americans
die by suicide and another one million Americans attempt it, costing
more than $44 billion in lost wages and work productivity.\2\ In the
United States today, there is no comprehensive national system to track
suicides. However, because NVDRS includes information on all violent
deaths--including deaths by suicide--the program can be used to develop
effective suicide prevention plans at the community, State, and
national levels.
A 2015 study showed that 19.9 percent of all veteran deaths between
2001 and 2007 were suicide, with male veterans three times as likely as
female veterans to commit suicide.\11\ The central collection of such
data can be of tremendous value for organizations such as the
Department of Veterans Affairs that are working to improve their
surveillance of suicides. The types of data collected by NVDRS
including gender, blood alcohol content, mental health issues and
physical health issues can help prevention programs better identify and
treat at-risk individuals.
In addition to veteran suicides, NVDRS data has been crucial in
many States like Oregon, Utah, New Jersey and North Carolina in
understanding the circumstances surrounding elder suicide. This has
allowed the States to collaborate locally and implement programs that
target those populations at greatest risk.
federal role needed
NVDRS is a relatively low-cost program that yields high-quality
results. While State-specific information provides enormous value to
local public health and law enforcement officials, data from all 50
States, the U.S. territories and the District of Columbia must be
obtained to complete the national picture. Aggregating this additional
data will allow us to analyze national trends and also more quickly and
accurately determine what factors can lead to violent death so that we
can devise and disseminate strategies to address those factors.
strengthening and expanding nvdrs in fiscal year 2019
We cannot reduce funding for a program that just reached its
capacity to start operations in all 50 States. Congress needs to
continue funding for NVDRS at the level of $23.5 million.
We thank you for the opportunity to submit this statement for the
record. The investment in NVDRS has already begun to pay off, as NVDRS-
funded States are adopting effective violence prevention programs. We
believe that national implementation of NVDRS is a wise public health
investment that will assist State and national efforts to prevent
deaths from domestic violence, veteran suicide, teen suicide, gang
violence and other violence that affect communities around the country.
We look forward to working with you to complete the nationwide
expansion of NVDRS by securing an fiscal year 2019 appropriation of
$23.5 million.
References
(1) Centers for Disease Control and Prevention . (2015). Injury
Prevention & Control: Division of Violence Prevention. Retrieved April
26, 2018, from http://www.cdc.gov/violenceprevention/nvdrs/.
(2) Americans for Suicide Prevention. (n.d.). Suicide Statistics.
Retrieved April 26, 2018, from Americans for Suicide Prevention: http:/
/afsp.org/about-suicide/suicide-statistics/.
(3) Office of Suicide Prevention, Department of Veterans Affairs
(2016, August). Suicide Among Veterans and Other Americans, 2001-2014.
Retrieved April 26, 2018, from Department of Veterans Affairs: https://
www.mentalhealth.va.gov/docs/2016suicidedatareport.pdf.
(4) Centers for Disease Control and Prevention . (2016, June 18).
National Violent Death Reporting System--An Overview . Retrieved 26
April, 2018, from National Violent Death Reporting System: http://
www.cdc.gov/violenceprevention/pdf/nvdrs_overview-a.pdf.
(5) Centers for Disease Control and Prevention. (2015, December
15). National Violent Death Reporting System--State Profiles. Retrieved
March 7, 2017, from A CDC website: https://www.cdc.gov/
violenceprevention/nvdrs/stateprofiles.html.
(6) U.S. Department of Health and Human Services . (2016, April 8).
The U.S. Opioid Epidemic. Retrieved April 14, 2016, from U.S.
Department of Health and Human Services: http://www.hhs.gov/opioids/
about-the-epidemic/.
(7) Centers for Disease Control and Prevention. (2014, January 17).
Surveillance for Violent Deaths -National Violent Death Reporting
System, 16 States, 2010. Retrieved April 14, 2016, from Morbidity and
Mortality Weekly Report -Surveillance Summaries/Volume 63/No.1: http://
www.cdc.gov/mmwr/pdf/ss/ss6301.pdf.
(8) Alexander GC, F. S. (2015). The Prescription Opioid Epidemic:
An Evidence-Based Approach. Baltimore: Johns Hopkins Bloomberg School
of Public Health. http://www.jhsph.edu/research/centers-and-institutes/
center-for-drug-safety-and-effectiveness/opioid-epidemic-town-hall-
2015/2015-prescription-opioid-epidemic-report.pdf.
(9) Center for Disease Control and Prevention. (2013). National
Violent Death Reporting System . Retrieved April 14, 2014, from A Web-
based Injury Statistics Query and Reporting System (WISQARS) Database:
https://wisqars.cdc.gov:8443/nvdrs/nvdrsDisplay.jsp.
(10) Smith, S. G., Fowler, K. A., & and Niolon, P. H. (March 2014).
Intimate Partner Homicide and Corollary Victims in 16 States--NVDRS
2003-2009. American Journal of Public Health, 461-466.
(11) Kang, H., Bullman, T. A., & Smolenski, D. J. (2015). Suicide
risk among 1.3 million veterans who were on active duty during the Iraq
and Afghanistan wars. Annals of Epidemiology, 96-100.

[This statement was submitted by Kate McFadyen, Chair, National
Violence
Prevention Network.]
______

Prepared Statement of NephCure Kidney International
summary of recommendations for fiscal year 2019
_______________________________________________________________________

--Provide $39.3 billion for the National Institutes of Health (NIH)
--Provide a proportional increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute on Minority Health and Health Disparities
(NIMHD) and support the expansion of the FSGS/NS research
portfolio at NIDDK and NIMHD by funding more research into
primary glomerular disease.
_______________________________________________________________________

Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to present the views of NephCure Kidney International
regarding research on idiopathic focal segmental glomerulosclerosis
(FSGS) and primary nephrotic syndrome (NS). NephCure is the only non-
profit organization exclusively devoted to fighting FSGS and the NS
disease group. Driven by a panel of respected medical experts and a
dedicated band of patients and families, NephCure works tirelessly to
support kidney disease research and awareness.
NS is a collection of signs and symptoms caused by diseases that
attack the kidney's filtering system. These diseases include FSGS,
Minimal Change Disease and Membranous Nephropathy. 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
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 that is 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
the African American patient population with FSGS/NS. Researchers
continue to study the pathogenesis of these variants.
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 2008, the Medicare program alone spent $26.8
billion, 7.9 percent of its entire budget, on ESRD. In 2005, FSGS
accounted for 12 percent of ESRD cases in the U.S., 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.
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. NephCure
works closely with NIH and has partnered with NIH on two large studies
that will advance the pace of clinical research and support precision
medicine. These studies are the Nephrotic Syndrome Study Network and
the Cure Glomerulonephropathy Network.
With collaboration from other Institutes and Centers, ORDR
established the Rare Disease Clinical Research Network. This network
provided an opportunity for NephCure Kidney International, the
University of Michigan, and other university research health centers to
come together to form the Nephrotic Syndrome Study Network (NEPTUNE).
Now in its second 5-year funding cycle, NEPTUNE has recruited over 450
NS research participants, and has supported pilot and ancillary studies
utilizing the NEPTUNE data resources. NephCure urges the subcommittee
to continue its support for RDCRN and NEPTUNE, which has tremendous
potential to facilitate advancements in NS and FSGS research.
NIDDK houses the Cure Glomerulonephropathy Network (Cure GN), a
multicenter 5-year cohort study of glomerular disease patients.
Participants will be followed longitudinally to better understand the
causes of disease, response to therapy, and disease progression, with
the ultimate objective to cure glomerulonephropathy. NephCure
recommends that the subcommittee continues to support the work that the
Cure Glomeruloneuropathy [CureGN] initiative has accomplished towards
further understanding rare forms of kidney diseases. It is estimated
that annually there are 20 new cases of ESRD per million African
Americans due to FSGS, and 5 new cases per million Caucasians. This
disparity is largely due to variants of the APOL1 gene. Unfortunately,
the incidence of FSGS is rising and there are no known strategies to
prevent or treat kidney disease in individuals with the APOL1 genotype.
NIMHD began supporting research on the APOL1 gene in fiscal year 2013.
Due to the disproportionate burden of FSGS on minority populations, it
remains appropriate for NIMHD to continue to advance this research.
NephCure asks the subcommittee to recognize the work that NIMHD and
NIDDK are doing to address the connection between the APOL1 gene and
the onset of FSGS and encourage NIMHD to work with community
stakeholders to identify areas of collaboration.
Patient Perspectives
My name is Kimberly Queen and I was diagnosed with Focal Segmental
Glomerulosclerosis (FSGS) in 2012 at the age of 25. At that time, I was
fulfilling my passion teaching Georgia State Pre-k when I received the
news; it was only my third-year teaching. After only 2 months of being
diagnosed and being prescribed 60mg of Prednisone, I went into septic
shock. Thankfully I was surrounded by amazing doctors who saved my
life. It was then that I realized it was time to fight this disease.
However, just as I was starting my fight, my kidneys failed in the
first 9 months. I am forever grateful to my brother who donated his
kidney to me on November 7, 2014, but with FSGS there is always a
chance of reoccurrence, which I saw firsthand shortly after when I
began spilling protein. During the two weeks I spent in the hospital,
we started putting together a game plan for how to put this awful
disease into remission.
I began daily plasmapheresis along with taking a blood pressure
medication. We saw a little change but not enough. It's now been 3
years since my reoccurrence. In that time, I have done over three
hundred plasmapheresis treatments, experimented with different dosages
of Prednisone, tried different blood pressure medications, started
using Acthar Gel and started Rituximab. I have attained partial
remission using the Acthar Gel, and we are hoping to reach full
remission with the Rituximab. More research is needed with this disease
so that myself, and others do not feel like ``test subjects'' trying
different medications and so there can be a higher success rate. I
would love to be able to live my life not focused around doctor
appointments, treatments and long infusions. Luckily, I am surrounded
by a family who understands how FSGS has impacted my life, as well as
friends who support me and encourage me to stay strong daily fighting a
disease with no cure.
###
I was diagnosed when I was 7 years old with Nephrotic Syndrome. I
am almost 9 years old now. When I get very sick it is called a relapse
and then I have to start taking higher doses of steroids
(prednisolone). Taking steroids doesn't seem like a big deal but it
makes me really hungry all the time. I started a new medicine
(tacrolimus) on August 10th that is working, so January 6th, 2018 was
my last day of taking steroids, hopefully forever. I didn't like being
on steroids. Besides being hungry all the time, it made my face really
big and I gained a lot of weight, and I stopped growing taller, so my
twin brother is now way taller than me. They say I could still catch
up, but I have to wait and see. I'm 2 minutes older and was always
bigger but I'm being patient. I still have to take a blood pressure
medicine. I take the same pills as my 90 year old great grandfather!
This is from both the steroids and the disease. I check my urine and
blood pressure every day and have to take the tacro at 8am and 8pm. We
have alarms to remind us all. My Mom was worried when school started
because steroids can make you act crazy she says. I love school so I
never let it get me in trouble. I was even invited into the ALPS
program which is Advanced Learning Program for Students because I did
so well! I play baseball and basketball because my parents won't let my
disease define me, so as long as the doctors say it is okay and I want
to do it, they let me do it. I wish a cure could be found for Nephrotic
Syndrome. I don't like having to explain it to my friends, and I don't
like how worried my parents always are.
###
Paige was diagnosed at the age of three, over 8 years ago. Her body
responds to steroids so we rely solely on that drug to maintain her
health. Paige's current treatment plan is identical to someone who was
diagnosed with this condition in the 1970's. Can you imagine being
diagnosed with a chronic condition and the Dr. using case studies from
over 40 years ago to develop your initial treatment plan? It is a
devastating feeling to know there remains no known cause or cure to the
condition that affects your child daily.
The side effects of steroid use are numerous, the list is very
long. Research is needed to find alternative and better treatment
methods. Paige relapses when her immune system is tested and yet the
treatment method we have to rely on causes her immune system to weaken.
Nephrotic Syndrome and steroids have changed the way we live our lives,
we have worry and stress over her health instead of joy.
Nephrotic Syndrome changed Paige's life, but she does not allow
Nephrotic Syndrome to ruin it. She is a smart, determined, kind young
person who is a scholar and a competitive swimmer and has the best
giggle around. She makes a positive difference in this world. Our
family supports the need for additional research organizing annual
running teams to raise vital funds to support research. Paige may not
remember how life was like without Nephrotic Syndrome but we certainly
do. We ask for your support in funding additional, vital research to
help find a cure for these devastating kidney conditions. Thank you.
Thank you for the opportunity to present the views of the FSGS/NS
community.

[This statement was submitted by Irving Smokler, Ph.D., President
and Founder, NephCure Kidney International.]
______

Prepared Statement of the Neurofibromatosis Network
Thank you for the opportunity to submit testimony to the
Subcommittee on the importance of funding for the National Institutes
of Health (NIH), and specifically for continued research on
Neurofibromatosis (NF), a genetic disorder closely linked to many
common diseases widespread among the American population. My name is
Kim Bischoff and I am the Executive Director of the Neurofibromatosis
(NF) Network, a national organization of NF advocacy groups. We
respectfully request that you include the following report language on
NF research at the National Institutes of Health within your fiscal
year 2019 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, including NCI, NINDS, NIDCD, NHLBI, NICHD, NIMH, NCATS, and
NEI. Children and adults with NF 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 NF-associated
tumor sequencing efforts. 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. Based on emerging
findings from numerous researchers worldwide demonstrating that
children with NF are at significant risk for autism, learning
disabilities, motor delays, and attention deficits, the Committee
encourages NINDS, NIMH and NICHD to expand their investments in
laboratory-based and clinical investigations in these areas. 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. NF1 can cause vision loss due to optic gliomas, the
Committee encourages NEI to expand its investment in NF1 basic and
clinical research.
On behalf of the Neurofibromatosis (NF) Network, I speak on behalf
of the over 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 part 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, pain, 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 is more common than
Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's disease
and Tay Sachs combined. There are three types of NF: NF1, which is more
common, NF2, which initially 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 heart
disease, learning disabilities, memory loss, cancer, 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.
Learning Disabilities/Behavioral and Brain Function
Learning disabilities affect one-half of people with NF1. They
range from mild to severe, and can impact the quality of life for those
with NF1. In recent years, research has revealed common threads between
NF1 learning disabilities, autism, and other related disabilities. New
drug interventions for learning disabilities are being developed and
will be beneficial to the general population. Research being done in
this area includes working to identify drugs that target Cyclic AMP, so
they can be paired with existing drugs targeting RAS. Identification of
new drug combinations may benefit people with multiple types of
learning disabilities.
Bone Repair
At least a quarter of children with NF1 have abnormal bone growth
in any part of the skeleton. In the legs, the long bones are weak,
prone to fracture and unable to heal properly; this can require
amputation at a young age. Adults with NF1 also have low bone mineral
density, placing them at risk of skeletal weakness and injury. Research
currently being done to understand bone biology and repair will pave
the way for new strategies to enhancing bone health and facilitating
repair.
Pain Management
Severe pain is a central feature of Schwannomatosis, and
significantly impacts quality of life. Understanding what causes pain,
and how it could be treated, has been a fast-moving area of NF research
over the past few years. Pain management is a challenging area of
research and new approaches are highly sought after.
Nerve Regeneration
NF often requires surgical removal of nerve tumors, which can lead
to nerve paralysis and loss of function. Understanding the changes that
occur in a nerve after surgery, and how it might be regenerated and
functionally restored, will have significant quality of life value for
affected individuals. Light-based therapy is being tested to dissect
nerves in surgery of tumor removal. If successful it could have
applications for treating nerve damage and scarring after injury,
thereby aiding repair and functional restoration.
Wound Healing, Inflammation and Blood Vessel Growth
Wound healing requires new blood vessel growth and tissue
inflammation. Mast cells, important players in NF1 tumor growth, are
critical mediators of inflammation, and they must be quelled and
regulated in order to facilitate healing. Researchers have gained deep
knowledge on how mast cells promote tumor growth, and this research has
led to ongoing clinical trials to block this signaling, resulting in
slower tumor growth. As researchers learn more about blocking mast cell
signals in NF, this research can be translated to the management of
mast cells in wound healing.
Cancer
NF can cause a variety of tumors to grow, which includes tumors in
the brain, spinal cord and nerves. NF affects the RAS pathway which is
implicated in 70 percent of all human cancers. Some of these tumor
types are benign and some are malignant, hard to treat and often fatal.
Previous studies have found a high incidence of intracranial
glioblastomas and malignant peripheral nerve sheath tumors (MPNSTs), as
well as a six fold incidents of breast cancer compared to the general
population. One of these tumor types, malignant peripheral nerve sheath
tumor (MPNST), is a very aggressive, hard to treat and often fatal
cancer. MPNSTs are fast growing, and because the cells change as the
tumor grows, they often become resistant to individual drugs. Clinical
trials are underway to identify a drug treatment that can be widely
used in MPNSTs and other hard-to-treat tumors.
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 numerous 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 $31
million in fiscal year 2017. 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 appreciate the Subcommittee's strong support for the National
Institutes of Health and will continue to work with you to ensure that
opportunities for major advances in NF research at the NIH are
aggressively pursued. Thank you.
______

Prepared Statement of New Leaders
Thank you for the opportunity to provide testimony regarding the
fiscal year 2019 Labor, Health and Human Services, Education, and
Related Agencies Appropriations bill.
New Leaders is a national nonprofit organization dedicated to
ensuring high academic achievement for all children, especially
students in poverty and students of color, by developing
transformational school leaders and advancing the policies and
practices that allow great leaders to succeed. Since 2000, we have
trained 3,200 outstanding school leaders who annually reach
approximately 500,000 students in partnership with more than 30
districts and 150 charter schools. Moreover, our leaders overwhelmingly
work on behalf of historically underserved students: 78 percent of
students served are low-income and 87 percent are children of color. In
addition, our programs are evidence-based. An independent study by the
RAND Corporation found that students who attend New Leader schools
outperform their peers by statistically significant margins
specifically because of the strong leadership of their New Leader
principal.\1\ And a recent review of school leadership interventions
cited New Leaders as the principal preparation program with the
strongest evidence of positive impact on student achievement.\2\
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\1\ Gates, S., Hamilton, L., Martorell, P., et. al. (2014).
Preparing Principals to Raise Student Achievement: Implementation and
Effects of the New Leaders Program in Ten Districts. The RAND
Corporation. Retrieved from http://www.rand.org/pubs/research_reports/
RR507.html.
\2\ Herman, R., Gates, S. M., Chavez-Herrerias, E. R., and Harris,
M. (2016). School Leadership Interventions Under the Every Student
Succeeds Act (Volume I). The RAND Corporation. Retrieved from http://
www.rand.org/content/dam/rand/pubs/research_reports/RR1500/RR1550/
RAND_RR1550.pdf.
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New Leaders is committed to getting a well-prepared, well-supported
principal in every school so that our Nation's teachers and students
can thrive. We can reach this goal by paying more attention to how our
schools--not just individual classrooms, but all classrooms within a
school--are organized and led. More than a decade of research shows
that well-prepared, well-supported principals have a huge influence on
teacher practice and student success. School leaders account for 25
percent of a school's impact on student learning,\3\ and an above-
average principal can improve student achievement by 20 percentage
points.\4\ Moreover, outstanding school leaders attract and retain
great educators: fully 97 percent of teachers list principal quality as
critical to their retention and career decisions--more than any other
factor.\5\ And school leaders transform the lowest-performing schools,
where the positive effects of strong leadership on student achievement
are most pronounced.\6\ In fact, a landmark study found ``virtually no
documented instances of troubled schools being turned around without
intervention by a powerful leader.'' \7\
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\3\ Leithwood, K., Seashore Louis, K., Anderson, S., & Wahlstrom,
K. (2004). How leadership influences student learning: A review of
research for the Learning from Leadership Project. New York, NY: The
Wallace Foundation. Retrieved from http://www.wallacefoundation.org/
knowledge-center/Pages/How-Leadership-Influences-Student-Learning.aspx.
\4\ Marzano, R. J., Waters, T., & McNulty, B. A. (2005). School
leadership that works: From research to results. Alexandria, VA:
Association for Supervision and Curriculum Development.
\5\ Scholastic Inc. (2012). Primary Sources: America's Teachers on
the Teaching Profession. New York, NY: Scholastic and the Bill and
Melinda Gates Foundation. Retrieved from http://www.scholastic.com/
primarysources/pdfs/Gates2012_full.pdf.
\6\ Seashore Louis, K., Leithwood, K., Wahlstrom, K., & Anderson,
S. (2010). Investigating the links to improved student learning.
Washington, DC: Wallace Foundation. Retrieved from http://
www.wallacefoundation.org/knowledge-center/Pages/Investigating-the-
Links-to-Improved-Student-Learning.aspx.
\7\ Leithwood, K., Seashore Louis, K., Anderson, S., & Wahlstrom,
K. (2004).
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We were pleased that the Every Student Succeeds Act (ESSA)
maintained and strengthened the School Leader Recruitment and Support
Program (SLRSP). However, we were deeply dismayed to see funding for
SLRSP zeroed out in the fiscal year 2018 spending deal.
The School Leader Recruitment and Support Program (SLRSP) was
authorized under ESSA with bipartisan support and is the only Federal
program with an exclusive focus on evidence-based school leadership
interventions for high-need schools. SLRSP updates the School
Leadership Program (SLP, the program included in the previous version
of the Elementary and Secondary Education Act (ESEA)) and provides
districts with resources to develop and support dynamic leaders who
have a measurable, positive impact on student achievement. The program
empowers eligible entities--including State or local educational
agencies--to pursue a range of activities in support of school
leadership for high-need schools, such as the development and
implementation of leadership training programs, the provision of
ongoing professional development for school leaders, and the
dissemination of best practices regarding the recruitment and retention
of highly effective school leaders. In addition, eligible entities may
carry out projects in partnership with nonprofit organizations and
institutions of higher education. Finally, under priorities set forth
in the reauthorized statute, SLRSP incentivizes eligible entities to
focus on principal preparation and professional development practices
for which there is evidence of effectiveness, as demonstrated through
rigorous research.
As implementation of ESSA moves to the State, local, and school
levels, it is more important than ever that we ensure every school is
led by an outstanding principal--a focus that can lead to incredible
results for kids while representing a cost-effective use of Federal
resources. According to a national analysis, the average cost to
recruit, prepare, and hire a new principal is $75,000.\8\ Because 12
percent of principals leave the profession every year, replacing each
requires significant resources--upwards of $200 million for the
Nation's high-need schools. That same analysis found that the average
cost of principal support is $16,500--requiring more than $350 million
annually to mentor and support the leaders of high-need schools. Though
the need is great, investments in leadership are extremely cost-
effective: supporting one principal is actually an investment in the 25
teachers and 500 or more students he or she, on average, supports. In
fact, a National Governors Association report describes how slightly
shifting the balance of educator investments toward principals is a
smart way to improve school working conditions to foster stronger
teaching and better outcomes for kids.\9\ Further, strategies to
address principal burnout, which disproportionately affects high-need
schools,\10\ can yield huge cost savings.\11\
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\8\ School Leaders Network. (2014). Churn: The High Cost of
Principal Turnover. Retrieved from http://connectleadsucceed.org/sites/
default/files/principal_turnover_cost.pdf#page=1&zoom
=auto,-15,792.
\9\ National Governors Association. (2015). Improving Educational
Outcomes: How State Policy Can Support School Principals as
Instructional Leaders. Washington, DC: National Governors Association.
Retrieved from https://www.nga.org/files/live/sites/NGA/files/pdf/2015/
1506
SupportingPrincipals.pdf.
\10\ According to 2014 data from the National Center for Education
Statistics, high-need schools must also grapple with an overall
principal turnover rate of 28 percent, significantly higher than
schools in more affluent communities.
\11\ According to School Leaders Network (2014), up to $330,000
annually for a typical urban district.
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The Federal Government has a crucial role to play in advancing
innovation and sharing best practices with the field so that State and
local leadership strategies, especially for high-need schools, can be
strengthened, now and in the future, by a strong and growing evidence
base. The SLP helped launch and expand some of the country's most
innovative and effective leadership development programs, including New
Leaders, New Teacher Center, NYC Leadership Academy, and TNTP. Since
receiving SLP grants, these organizations have grown exponentially to
reach many more schools, teachers, and students in high-need
communities--greatly expanding the impact of the Federal Government's
initial investment. Further, SLP grantees, including those affiliated
with the University Council of Educational Administrators (UCEA), have
demonstrated a remarkable commitment to programmatic evaluation,
continuous improvement, and transparency. By proactively sharing their
lessons and resources open-source with the field, these organizations
have helped to galvanize dramatic changes to the principal preparation
sector as a whole \12\--inspiring necessary changes to the way
principals are trained to lead our Nation's schools in States and
districts across the country.
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\12\ University Council for Educational Administration and New
Leaders. (2016). State Evaluation of Principal Preparation Programs
Toolkit. Retrieved from www.sepkit.org.
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It is worth noting that while there are other programs that can
support effective school leadership programs and strategies, the
reality is that leadership has historically been overlooked and
consistently underfunded, \13\ so it is absolutely crucial that we
reinstate this dedicated funding source. Without SLRSP, we lose a key
Federal lever for seeding the next generation of effective principal
development programs, promoting equity, advancing ongoing innovation,
and sharing cutting-edge school leadership lessons with the broader
field.
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\13\ For the past several years, more than two-thirds of districts
have invested zero Federal professional development funds on school
leaders. Sources: U.S. Department of Education (2015). Findings from
the 2014-15 Survey on the Use of Funds Under Title II, Part A. U.S.
Department of Education (2014). Findings from the 2013-14 Survey on the
Use of Funds Under Title II, Part A. U.S. Department of Education
(2013). Findings from the 2012-13 Survey on the Use of Funds Under
Title II, Part A. All retrieved from http://www2.ed.gov/programs/
teacherqual/resources.html.
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We urge Congress to restore funding for SLRSP at $14.5 million to
seed innovative, evidence-based school leadership programs and
partnerships that promise a return for students, schools, and
communities that far exceeds this targeted investment.
Thank you for the opportunity to provide the views of New Leaders
on the fiscal year 2019 appropriations. If you would like to discuss
our recommendations, please do not hesitate to contact
[email protected].

[This statement was submitted by Jean Desravines, CEO, New
Leaders.]
______

Prepared Statement of the Nez Perce Tribe
Honorable Chairman and members of the Committee, the Nez Perce
Tribe (Tribe) would like to thank you for the opportunity to provide
recommendations to the Committee as it evaluates and prioritizes fiscal
year 2019 appropriations for programs within the Department of Labor,
Department of Health and Human Services, and the Department of
Education.
As with any government, the Tribe performs a wide array of work and
provides a multitude of services to its tribal membership as well as
the community at large. The Tribe has been a leader in education,
workforce development, and social services in this area and places a
high priority on these programs and the services they provide to
residents on the Nez Perce Reservation (Reservation). The Tribe relies
on specific Federal programs and grants to fund this important work
and, therefore, provides the following fiscal year 2019 appropriations
recommendations for these agencies.
The Tribe recommends $20 billion be provided for Title I, Part A of
the Every Student Succeeds Act Local Education Agency Grants. Rural
public schools on the Reservation use this funding to address the
obstacles low-income students face meeting academic standards.
The Tribe recommends $5 million be allocated for the State-Tribal
Education Partnership Program (STEP) authorized in Title VI, Part A,
Subpart 3 of the Every Student Succeeds Act. The Tribe is one of the
participants in the STEP which provides an avenue for States and tribes
to work together to improve and enhance education delivery and parent
involvement in areas with high populations of tribal students. The STEP
has been a success for the Tribe and continued funding is needed to
keep the program active.
The Tribe recommends the same amount be allocated in fiscal year
2019 as was allocated in fiscal year 2018 for Impact Aid, $1.414
billion. Impact Aid compensates school districts for Federal ownership
of lands within a district's tax base. Idaho Public Schools on the
Reservation rely heavily on Impact Aid dollars to provide education
services. For example, Impact Aid accounts for 30 percent of the budget
for the Lapwai School District. Without Impact Aid dollars, the school
will be forced to make significant reductions in staffing and resources
for students.
The Tribe recommends $5 million for Tribal Education Departments
which would complement the funding allocated to the Bureau of Indian
Affairs for these programs. This funding provides for the development
and implementation of education programs operated by tribes to assist
in the delivery of education services within a reservation.
The Tribe recommends the $9.863 billion provided for Head Start in
fiscal year 2018 be maintained for fiscal year 2019. Indian Head Start
needs to be fully funded as these programs play a vital role in school
readiness, child development, and early education for over 24,000
Native children. The Indian Head Start programs address the whole child
from a health, cultural, and education perspective. These programs
operate on slim budgets but provide extraordinary returns in ensuring
children are as prepared as possible to begin their education journey.
The Tribe recommends the fiscal year 2018 funding levels be
maintained for fiscal year 2019 for all Tribal Behavioral Health Grants
under the Substance Abuse and Mental Health Services Administration.
The grants address a wide range of mental health and substance abuse
issues such as youth suicide, opioid addiction, and methamphetamine
addiction that are prevalent on the Reservation and threaten to
overwhelm the Tribe's Social Services Department and health clinic. In
addition, the competitive grants and tribal set-asides provided for
promoting safe and stable families, child welfare services, and child
abuse prevention should be maintained at fiscal year 2018 levels as
well.
The Tribe appreciates the $50 million in funding for fiscal year
2018 to address the opioid crisis in Indian Country. However, this
funding pales in comparison to the $1.5 billion that has been provided
to States on this issue through the 21st Century Cures Act and fiscal
year 2018 funding. The Tribe recommends funding to address opioid use
and its effects on communities be increased and also made available in
forms other than grants. Indian Country suffers from opioid addiction
at a higher rate than most communities and all communities need access
to monies to help address this problem.
The Tribe recommends $60.5 million be allocated to the Department
of Labor's Division of Indian and Native American Programs, an increase
of $6.5 million over fiscal year 2018 funding. The Workforce Innovation
and Opportunity Act, Section 166 Indian and Native American Programs
serve the training and employment needs of tribes through programs such
as the Indian Employment, Training, and Related Services Demonstration
Act of 1992. The Tribe has used this funding to provide important
programs that have helped develop the workforce and economy on the
Reservation. This program has been very successful but will not
continue without funding.
The Tribe also recommends continuing the Public Service Loan
Forgiveness program (PSLF). The PSLF was established with the passage
of the College Cost Reduction and Access Act of 2007, and was created
to encourage individuals to enter lower-paying but vitally important
public sector jobs such as military service, law enforcement, public
education, and public health professions. The PSLF allows eligible
borrowers to qualify for forgiveness of the remaining balance of their
William D. Ford Federal Direct Loan Program loans after they have
served full time at a public service organization for at least 10
years, while making 120 qualifying payments. Although there have been
proposals to eliminate the program, the PSLF has shown to be a valuable
tool for tribal governments in the recruitment of employees and an
important resource for students to address educational debt while
serving in jobs that may not be as financially lucrative as positions
in the private sector. Most tribes are located in rural areas and face
challenges in recruiting and retaining employees. This program has been
useful in that regard and the Tribe recommends the program not be
eliminated.
Thank you for your consideration of the Tribe's requests with
respect to these fiscal year 2019 appropriations.
______

Prepared Statement of the Northwest Portland Area Indian Health Board
My name is Andy Joseph, Jr., and I serve on the Colville Business
Council, as Co-Chair of the IHS National Tribal Budget Formulation
Workgroup, and as Chairman of the Northwest Portland Area Indian Health
Board. Established in 1972, NPAIHB is a Public Law 93-638 tribal
organization that represents 43 federally recognized Tribes in the
States of Idaho, Oregon, and Washington (Tribes) on healthcare issues.
Over 353,000 American Indian and Alaska Native (AI/AN) people reside in
these three States, representing 6.8 percent of the Nation's AI/AN
population. On behalf of our 43 Tribes, I thank you for this
opportunity to provide testimony on the President's proposed budget for
fiscal year 2019 for the Department of Health and Human Services (HHS)
to the Senate Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies.
office of the secretary
Secretary's Minority AIDS Initiative Fund (SMAIF)
SMAIF has been funded at $54 million for the past several years
with $3.6 million to the Indian Health Service (IHS) for HIV/HCV
prevention, treatment, outreach and education. Every year these funds
are in jeopardy of being eliminated. SMAIF funding and Minority AIDS
Initiative (MAI) funding go directly to Federal agencies for dispersal
in the form of grants, capacity building, infrastructure, etc. Agencies
open to MAI funds include the CDC, HRSA, OMH and SAMHSA (among others).
In fiscal year 2017, $3.6 million of SMAIF dollars were allocated to
IHS for HIV/AIDS and HCV prevention, treatment, outreach and education.
There is no other direct and strategic funding for IHS through the MAI,
only SMAIF funds are available to IHS.
Rates of HIV diagnoses increased for American Indians/Alaska
Natives (AI/ANs) in the period from 2010 to 2014.\1\ A total of 2,273
AI/ANs met the definition of newly diagnosed with HIV from 2005 through
2014, an average annual rate of 15.1 per 100,000 AI/ANs. Most (356/391)
IHS health facilities recorded at least 1 new HIV diagnosis. The rate
of new HIV diagnoses among males (21.3 per 100,000 AI/ANs) was twice as
high as that among females (9.5 per 100,000 AI/ANs; rate ratio = 2.2;
95 percent confidence interval, 2.1-2.4); by age, rates were highest
among those aged 20-54 for males and females. By region, the Southwest
region had the highest number (n = 1016) and rate (19.9 per 100,000 AI/
ANs) of new HIV diagnoses. Overall annual rates of new HIV diagnoses
were stable from 2010 through 2014, although diagnosis rates increased
among males (P < .001) and those aged 15-19 (P < .001), 45-59 (P <
.001), and 50-54 (P = .01).\2\ Moreover, AI/ANs are disproportionately
affected by the Hepatitis C virus and have both the highest rate of
acute HCV (Hepatitis C) infection and the highest HCV-related mortality
rate of any US racial/ethnic group. AI/AN HCV-related mortality rates
in Idaho, Oregon and Washington is over three times that of non-
Hispanic whites.
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\1\ Health Equity Report 2017, available at https://www.hrsa.gov/
sites/default/files/hrsa/health-equity/2017-HRSA-health-equity-
report.pdf.
\2\ Assessing New Diagnoses of HIV Among American Indian/Alaska
Natives Served by the Indian Health Service, 2005-2014, available at
http://journals.sagepub.com/eprint/BKmUmmb39h
ZemwFNfNxx/full.
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Given this data, any proposed cuts to HCV/HIV funding will have far
reaching and harmful impacts on Indian Country's ability to maintain
ongoing HIV/HCV prevention, treatment, and outreach efforts. It will
also have a devastating impact on the Tribes and Tribal Epidemiology
Centers that carry out this important work. NPAIHB receives SMAIF
funding from IHS and has had great outcomes with its SMAIF projects. We
provide summaries of three projects at the NPAIHB:
National HIV Prevention Capacity Building and Technical Assistance:
The capacity-building program has: increased routine HIV, STI and HCV
screening in settings where widespread screening has not been
previously performed; increased the availability of treatment for
people living with HIV/AIDS (PLWHA); increased the availability of
treatment for Hepatitis C positive people; carried out outreach
activities to engage PLWHA and Hepatitis C people in diagnosis and
treatment, especially reaching populations at disproportionate risk;
advanced IHS customer service improvements with LGBT individuals, with
special emphasis on appropriate services for MSM and transgender; and
advanced IHS policy and procedures to address HCV needs of the service
population, with special emphasis on services for people co-infected
with HIV and HCV. Most notably, the capacity building made available to
IHS via SMAIF dollars has provided technical assistance for IHS to
achieve the following in the most recent data: Coverage of unique
persons who had ever had an HIV test between the ages of 13-64 years
old increased to 52.3 percent (222,690/425,915), an improvement over 49
percent in 2017; and 56,337/103,734 unique patients born between 1945
and 1965, or 54.3 percent percent of total, have ever received an HCV
test. This is an improvement over the previous year's rate of 45
percent.
Hepatitis C ECHO Project: The project works closely with IHS,
Tribal and urban Indian health providers (I/T/U) to screen, manage and
treat patients infected with HIV/AIDS and hepatitis C virus (HCV)
within existing systems I/T/U clinics nation-wide. Project ECHO is a
collaborative model of medical education and care management that
empowers clinicians to provide better care to more people, right where
they live. The ECHO model does not actually ``provide'' care to
patients. Instead, it dramatically increases access to specialty
treatment in rural and underserved areas by providing front-line
clinicians with the knowledge and support they need to manage patients
with complex conditions. It does this by engaging clinicians in a
continuous learning system and partnering them with specialist mentors
at an academic medical center or hub. As the ECHO model expands, it is
helping to address some of the healthcare system's most intractable
problems, including inadequate or disparities in access to care, rising
costs, systemic inefficiencies, and unequal or slow diffusion of best
practices. The HCV ECHO collaborative, started in February of 2017, has
provided recommendations to 250 HIV/HCV patients and connected over 130
providers into the ECHO knowledge-sharing network.
We R Native Project: We R Native is a comprehensive, multimedia
health resource for Native youth, by Native youth. The service includes
an interactive website (www.weRnative.org), a text messaging service
(Text NATIVE to 97779), a Facebook page, a YouTube channel, Instagram,
Twitter, and print marketing materials. Special features include 100+
Youth Ambassadors and an ``Ask Auntie'' Q&A service. The website
launched on September 28, 2012, with over 360 health and wellness
pages. Since then, the site has received 549,481 page views with
highest number of 235,778 sessions by 18-24 year olds and 189,115
users. We R Native also disseminates culturally-relevant, evidence-
based HIV/STI behavioral interventions to AI/AN youth across the U.S.
Recommendation: Fund SMAIF for fiscal year 2019 at $54 million for
fiscal year 2019 with $3.6 targeted for the IHS.
centers for medicare and medicaid services
Medicaid Expansion, 100 percent FMAP and Affordable Care Act Subsidies
(ACA)
The Medicaid program provides critical health coverage for AI/AN
people and has also become a very important source of financing for
healthcare for Indian health programs. Because the IHS budget has not
received adequate increases to maintain current services, Medicaid
provides crucial revenue for Indian health providers. Medicaid
resources make up over 50 percent of many tribal health programs total
funding. Most of the IHS budget increases are directed toward staffing
new facilities and minimally finance inflation and population growth
for the Indian health programs. The increased coverage and revenue
associated with Medicaid expansion has had a very positive effect on
Northwest Tribal health programs. It is essential that the Federal
trust responsibility for Indian healthcare be honored, and 100 percent
Federal Medical Assistance Percentage (FMAP) for services received
through an IHS and Tribal facility is preserved. Portland Area Tribes
are opposed to any reform proposals (e.g., block grants) designed to
stop or reduce Federal spending on these programs or that eliminate ACA
subsidies. ACA subsidies make insurance affordable for some AI/ANs and
many tribes have premium sponsorship programs that provide critical
services to AI/ANs and bring in critical revenue to tribal clinics.
Recommendation: Continue to fully fund Medicaid expansion, 100
percent FMAP for services through an IHS or Tribal facility, and ACA
subsidies.
substance abuse and mental health services administration
Opioid Crisis and Funding
Prescription overdoses impact every family member in tribal
communities throughout the Portland Area (Idaho, Oregon, and
Washington). In the Portland Area a race-corrected analysis found the
age-adjusted drug overdose death rate for AI/ANs for opioid,
prescription drug, and all drug overdoses to be twice that of non-
Hispanic whites. From 2006 to 2012, a total of 10,565 deaths occurred
among AI/AN residents in the States of Idaho, Oregon, and Washington.
There were 584,070 deaths among non-Hispanic White (NHW) in the three-
State region. Drug overdoses accounted for 4.3 percent (450) of all
deaths among Northwest AI/ANs and 1.7 percent (9,868) of all deaths
among NHWs. Of the drug overdose deaths, 65.3 percent (294) of AI/AN
deaths and 69.3 percent (6,837) of NHW deaths were from prescription
drugs. Of the prescription drug overdose deaths, 77.2 percent (227) of
AI/AN deaths and 75.4 percent (5,157) of NHW deaths were from opioid
overdoses.\3\ Nationally, in 2015, the Centers for Disease Control and
Prevention (CDC) reported that AI/ANs had the highest national drug
overdose death rates of any race in 2015, and a 519 percent increase in
the number of non-metropolitan overdose deaths from 1999-2015.\4\
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\3\ Northwest Portland Area Indian Health Board IDEA-NW Project.
2016. Unpublished death certificate data from Idaho, Oregon, and
Washington.
\4\ CDC Morbidity and Mortality Weekly Report (MMWR), available at
https://www.cdc.gov/mmwr/volumes/66/ss/ss6619a1.htm?s_cid=ss6619a1_w
(last accessed March 8, 2018).
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Misuse of prescription opioids commonly leads to the use of other
drugs, such as heroin in tribal communities. The National Institute of
Drug Abuse noted that 21 to 29 percent of patients prescribed opioids
for chronic pain misuse them, and 4 to 6 percent who misuse
prescription opioids transition to heroin. Furthermore, the death rate
for heroin overdoses among AI/ANs have dramatically increased, rising
236 percent from 2010 to 2014.\5\
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\5\ Dan Nolan and Chris Amico, How Bad is the Opioid Epidemic?,
PBS.org (Feb. 23, 2016), available at https://www.pbs.org/wgbh/
frontline/article/how-bad-is-the-opioid-epidemic/.
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NPAIHB appreciates the inclusion of $4 billion to fight the opioid
crisis in fiscal year 2018, particularly the $50 million set-aside for
tribes and tribal organizations in the recently passed Consolidated
Appropriations Act of 2018 (H.R.1625) and would like to see this
tripled for fiscal year 2019. The $5 million in fiscal year 2018
appropriations specifically for tribes under the Medication-Assisted
Treatment (MAT) for Prescription Drug and Opioid Addiction program is
also crucial for tribal clinics to implement the MAT program and
administer the life-saving treatment and this should also be tripled in
fiscal year 2019.
Portland Area Tribes need direct funding and programs to address
the opioid epidemic in their communities such as State Targeted
Response to Opioid Epidemic grants (STR). Tribes should not have to
compete for funding through States, which is an issue for many of our
smaller tribes. NPAIHB also requests funding for both medicated-
assisted treatment (MAT) and prevention; and funding for outreach,
education and training on opioid use disorder (OUD), especially
pharmacy education. In our area, the Swinomish Tribe has established an
opioid addiction treatment center that includes wrap around services
and a full continuum of care for patients-- MAT, counseling, primary
care and oral health services. Other tribes in the Portland Area are
interested in establishing similar comprehensive and integrated care
programs, but need funding to do this.
Recommendations: Provide a tribal set aside of direct funding, not
competitive grants, to tribes and tribal organizations, including
Tribal Epidemiology Centers, to address the opioid epidemic and other
substance abuse issues in the amount of $150 million and $15 million
for MAT in fiscal year 2019. Relatedly, support legislation that would
make tribes eligible for direct funding under the 21st Century Cures
Act and that would allow use of funding not only for prevention and
response to Opioids but also other substances such as alcohol, heroin
and methamphetamine, and include the provision of mental health
services.
recommendations for other agencies
--Administration for Children and Families (ACF): Continue to fully
fund the Low Income Home Energy Assistance Program (LIHEAP) in
fiscal year 2019, which assists many low income AI/ANs in the
Northwest.
--Centers for Disease Control and Prevention (CDC): Support public
health infrastructure funding in fiscal year 2019; and funding
for the National Center for Chronic Disease Prevention and
Health Promotion for fiscal year 2019 (not ``America's Health
Block Grant'' proposal).
--Health Resources & Services Administration (HRSA): Support level
funding for Centers of Excellence for fiscal year 2019, which
funds the Native American Center of Excellence at Oregon Health
Sciences University.
Thank you for this opportunity to provide our recommendations on
the fiscal year 2019 HHS budget. I invite you to visit our Portland
Area Tribes to learn more about the utilization of HHS funding and
healthcare and social service needs in our Area.\6\
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\6\ For more information, please contact Laura Platero, NPAIHB, at
[email protected].

[This statement was submitted by Andrew Joseph, Jr., Chairman,
Northwest Portland Area Indian Health Board.]
______

Prepared Statement of the Northwest Resource Associates
Northwest Resource Associates (NWRA) offers the following testimony
requesting increased funds for the following five programs under the
supervision of the Administration for Children and Families (ACF):
Child Welfare Services (CWS), Promoting Safe and Stable Families, the
Adoption and Kinship Incentives Fund, and the Adoption Opportunities
Act.
In February, Congress passed the Family First Prevention Services
Act (Public Law 115-123). The legislation has potential to expand
services that can prevent the placement of children into foster care.
It challenges States to reduce the number of children and youth in
congregate placements. It will be a challenge to States to build the
capacity and access to services (mental health, substance use, and in-
home services) and to build the infrastructure of services and
providers.
The challenge is against a backdrop of ever increasing foster care
numbers driven by the opioid epidemic in parts of the country. Since
2012 the number of children in foster care has increased by 10 percent
to 437,000 in 2016. NWRA believes it is critical for Congress to fully
fund six programs to both build capacity to effectively implement the
Family First Act and help address the crisis many communities are
facing as foster care placement demands explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care but does not fund services to
prevent child abuse and neglect. Child welfare strategy must
significantly increase funding for child abuse prevention.
NWRA calls on Congress to fully fund Child Welfare Services from
$269 million to $325 million and Promoting Safe and Stable Families
from $99 million in discretionary funding to $200 million; increase
funding to the Adoption Opportunities Act to $60 million; fully fund
the Adoption and Kinship Incentives Fund at $75 million.
Impact of Opioids on Child Abuse and Neglect and Foster Care
Earlier this year HHS through the Secretary of Planning and
Evaluation conducted an analysis of child welfare data and supplemented
that work with field level research. Some of the key findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate and a 10 percent
increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While in past drug epidemics family and communities could fill some
of the gaps, today agencies report that family members across
generations may be experiencing substance use problems forcing
greater reliance on State custody and non-relative care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history, and addressing
substance abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children longer in care which keeps existing homes
full and unable to accept new placements.
family first act
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community-based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post-discharge services for children
leaving institutional care. Child welfare agencies need to find and
support more family-based foster care homes. These four funds can help
States develop evidence-based services that will meet the laws ``well-
supported,'' ``supported,'' and ``promising'' standards and can assist
the coordination of community based behavioral health and human
services.
Child Welfare Services (CWS), Title IV-B part 1
We ask for $325 million for Child Welfare Services, the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet these evidence standards.
Promoting Safe and Stable Families (PSSF), Title IV-B part 2
We also asking for full funding of $200 million for Promoting Safe
and Stable Families. Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
The Adoption Opportunities Act
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently to promote adoptions of
older youth in foster care and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post adoption services to families.
The Adoption and Kinship Incentive Fund
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014 it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has been not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. Your 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018,
this September, there will have $25 million remaining. That will likely
fall short to fully fund the incentives. And we again ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services. These
funds can be used by States to build both the evidence-based adoption
services include post-adoption counseling and services that can prevent
and reduce adoption disruption. NWRA thanks you for this consideration
and stands ready to respond to your questions and concerns.

[This statement was submitted by Kendra Morris-Jacobson, Director
of Oregon Programs, Northwest Resource Associates.]
______

Prepared Statement of the Nursing Community Coalition
The Nursing Community Coalition is comprised of 59 national
professional nursing associations that build consensus and advocate on
a wide spectrum of healthcare issues that intersect education,
research, practice, and regulation. Collectively, we represent over one
million Registered Nurses (RNs), Advanced Practice Registered Nurses
(including Certified Nurse-Midwives, Nurse Practitioners, Clinical
Nurse Specialists, and Certified Registered Nurse Anesthetists), nurse
executives, nursing students, faculty, and researchers, as well as
other nurses with advanced degrees. The Nursing Community Coalition
commends Congress' investment to nursing education and research in the
fiscal year 2018 Consolidated Appropriations Act [Public Law 115-141].
To continue the forward progress this will enact, our organizations
respectfully request $266 million for the Nursing Workforce Development
Programs (authorized under Title VIII of the Public Health Service Act
[42 U.S.C. 296 et seq.]), administered by the Health Resources and
Services Administration (HRSA), and $170 million for the National
Institute of Nursing Research (NINR), one of the 27 Institutes and
Centers within the National Institutes of Health (NIH) in fiscal year
2019.\1\
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\1\ For Fiscal Year 2019, the Ad Hoc Group for Medical Research is
recommending at least $39.3 billion for the NIH, including funds
provided to the agency through the 21st Century Cures Act for targeted
initiatives. The request level of $170 million for NINR denotes the
same percentage increase for NIH applied to NINR.
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title viii programs: america's patients need nursing care
As integral members of the healthcare team, nurses collaborate with
other professions and disciplines to improve the quality of America's
healthcare system. RNs comprise the largest group of health
professionals with almost four million licensed providers in the
country.\2\ A constant focus must be placed on education, recruitment,
and retention to ensure a stable workforce as projections cite an
impending shortage largely due to retirements within the profession.\3\
Investments must continue to be made in the education of new nurses and
nurse faculty to ensure the Nation will have access to the services it
will demand for years to come, particularly in rural and underserved
areas.
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\2\ National Council of State Boards of Nursing. (2018). Active RN
Licenses: A profile of nursing licensure in the U.S. as of April 18,
2018. Retrieved from: https://www.ncsbn.org/6161.htm.
\3\ ``In 2015, the nursing workforce lost 1.7 million experience-
years [due to retirees].'' Buerhaus, Peter I., Skinner, Lucy E.,
Auerbach, David I., Saiger, Douglas O. et al. 2017. Four Challenges
Facing the Nursing Workforce in the United States. Journal of Nursing
Regulation. Volume 8, Issue 2, pp. 40-46.
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According to HRSA, there were over 84.3 million individuals living
in Health Professional Shortage Areas as of December 2017.\4\ The Title
VIII programs provide nursing students and practicing nurses exposure
to caring for underserved communities, which helps to bolster
recruitment and retention in these areas. In academic year 2015-2016, a
total of 3,034 nursing students were supported by the Advanced
Education Nursing Traineeship, 59 percent of which were serving in
medically underserved communities.\5\ Of the 2,491 nurse anesthetist
students supported by the Nurse Anesthetists Traineeship, 70 percent
received clinical training in medically underserved communities in the
2015-2016 academic year.\5\
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\4\ U.S. Health Resources and Services Administration. (2018).
Designated Health Professional Shortage Areas Statistics. Retrieved
from: https://ersrs.hrsa.gov/ReportServer?/HGDW_Reports/BCD_HPSA/
BCD_HPSA_SCR50_Qtr_Smry_HTML&rc:Toolbar=false.
\5\ U.S. Department of Health and Human Services. (2018). Health
Resources and Services Administration Fiscal Year 2018 Justification of
Estimates for Appropriations Committees.
Retrieved from: https://www.hrsa.gov/sites/default/files/hrsa/about/
budget/budget-justification-2018.pdf.
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Additionally, the Title VIII NURSE Corps Loan Repayment and
Scholarship Programs assist students who agree to serve at least 3
years in facilities experiencing a critical shortage of nurses.\5\ In
fiscal year 2016, 55 percent of recipients extended their service
contracts to work in these facilities beyond the required 3 years.\5\
Clearly, these programs are instrumental to connecting current and
future providers to patient populations most in need.
The Nursing Community respectfully requests $266 million for the
Nursing Workforce Development programs in fiscal year 2019, which
include the following:

--Advanced Nursing Education Program (Sec. 811), including the
Advanced Education Nursing Traineeships and Nurse Anesthetist
Traineeships
--Nursing Workforce Diversity (Sec. 821)
--Nurse Education, Practice, Quality, and Retention (Sec. 831)
--NURSE Corps Loan Repayment and Scholarship Program (Sec. 846)
--Nurse Faculty Loan Program (Sec. 846A)
--Comprehensive Geriatric Education Program (Sec. 855)
national institute of nursing research: foundation for evidence-based
care
NINR funds research that lays the groundwork for evidence-based
nursing practice. NINR examines ways to improve care models to deliver
safe, high-quality, and cost-effective health services. Research funded
through NINR stands with the larger research community by focusing on
national level issues such as precision health and the opioid crisis.
One of NINR's recently featured research studies focused on the
relationship between opioid treatment and the rate of healing in
chronic wounds. Notably, the study suggests that opioid use reduces
immune activity, thus negatively impacting patients with chronic
wounds.\6\ This type of timely research has implications that will
drive the evidence-based care nurses, and other providers, deliver in
the future.
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\6\ Shanmugam, V K, et al. ``Relationship between Opioid Treatment
and Rate of Healing in Chronic Wounds.'' Advances in Pediatrics., U.S.
National Library of Medicine, Jan. 2017, www.ncbi.nlm.nih.gov/pubmed/
27865036.
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NINR's Strategic Plan includes the themes of: symptom science for
patients with chronic illness and pain; wellness to prevent illness
across conditions, settings, and the lifespan; patient self-management
to improve quality of life; and end-of-life and palliative care
science.\7\ Nursing science offers a unique lens in finding solutions
as it considers healing and symptom management, as described in NINR's
Strategic Plan. Moreover, NINR allots a generous portion of its budget
towards training new nursing scientists, thus helping to sustain the
longevity and success of nursing research. Training programs at NINR
develop future nurse researchers, many of whom also serve as faculty in
our nation's nursing schools.
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\7\ National Institutes of Health. National Institute of Nursing
Research. Implementing NINR's Strategic Plan: Key Themes. Retrieved
from: http://www.ninr.nih.gov/aboutninr/keythemes#.VRVhGWZ_SSU.
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The Nursing Community respectfully requests $170 million for the NINR
in fiscal year 2019.
Continued increased investments in the Title VIII programs and NINR
will strengthen the nation's health by bolstering the workforce and the
science that is foundational to the care nurses provide across the
country and in every community. Thank you for your support of these
crucial programs.
Members of the Nursing Community Coalition Submitting this Testimony
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
American Academy of Nursing
American Association of Colleges of Nursing
American Association of Critical-Care Nurses
American Association of Heart Failure Nurses
American Association of Neuroscience Nurses
American Association of Nurse Anesthetists
American Association of Nurse Assessment Coordination
American Association of Nurse Practitioners
American College of Nurse-Midwives
American Nephrology Nurses Association
American Nurses Association
American Nursing Informatics Association
American Organization of Nurse Executives
American Pediatric Surgical Nurses Association
American Psychiatric Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
Association for Radiologic and Imaging Nursing
Association of Community Health Nursing Educators
Association of Nurses in AIDS Care
Association of Pediatric Hematology/Oncology Nurses
Association of periOperative Registered Nurses
Association of Public Health Nurses
Association of Rehabilitation Nurses
Association of Veterans Affairs Nurse Anesthetists
Association of Women's Health, Obstetric and Neonatal Nurses
Commissioned Officers Association of the U.S. Public Health Service
Dermatology Nurses' Association
Emergency Nurses Association
Friends of the National Institute of Nursing Research
Gerontological Advanced Practice Nurses Association
Hospice and Palliative Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Society of Psychiatric-Mental Health Nurses
National Association of Clinical Nurse Specialists
National Association of Neonatal Nurse Practitioners
National Association of Neonatal Nurses
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Association of School Nurses
National Black Nurses Association
National Council of State Boards of Nursing
National Forum of State Nursing Workforce Centers
National League for Nursing
National Nurse-Led Care Consortium
National Organization of Nurse Practitioner Faculties
Nurses Organization of Veterans Affairs
Oncology Nursing Society
Organization for Associate Degree Nursing
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
Society of Pediatric Nurses
Wound, Ostomy and Continence Nurses Society
______

Prepared Statement of Oral Health America
Chairman Blunt, Ranking Member Murray, and distinguished Members of
the Subcommittee, Oral Health America (OHA), a leading organization
dedicated to changing lives by connecting communities with resources to
drive access to care, increase health literacy and advocate for
policies that improve overall health through better oral health for all
Americans, especially those most vulnerable; is grateful to Congress
for increased Federal investment for all programs administered by the
Older Americans Act (OAA) (U.S. Department of Health and Human
Services, Administration for Community Living) provided in the fiscal
year 2018 omnibus appropriations bill. Of interest to OHA is Title III-
D, Disease Prevention and Health Promotion, because of the cost-
effectiveness that health education, health promotion, and disease
prevention programs provide to the system. OHA applauds Congress for
providing $24,848,000 to Title III-D funding for fiscal year 2018, $5
million above the fiscal year 2017 enacted level. OHA also applauds the
$180,586,000 fiscal year 2018 appropriation for Title III-E, National
Family Caregivers Support Program, $30 million above the fiscal year
2017 enacted level, because of the range of critical support services
it provides to family caregivers, who number approximately 40 million
individuals.
The fiscal year 2018 enacted levels for all OAA programs will aid
their restoration following several fiscal years of decreased or
plateaued funding levels. As our Nation's older adult population grows,
so too, must our Nation's investment in OAA programs. Therefore, for
fiscal year 2019, we request the Subcommittee--at the minimum--to
preserve fiscal year 2018 funding levels for OAA programs. However, we
strongly recommend the Subcommittee to continue to nurture OAA programs
and build off of fiscal year 2018's appropriation with increased
investment, especially for Title III-D Disease Prevention and Health
Promotion and Title III-E National Family Caregivers Support Program.
The OAA provides Federal programs that serve to meet the needs of
millions of older Americans. We understand the United States continues
to operate amid a challenging budgetary environment. However, OHA
believes that proper Federal investment in the OAA is critical to keep
pace with the rate of inflation and to meet the needs of this ever-
growing segment of the population through the multitude of services the
OAA provides. Simply stated, proper investment in OAA saves taxpayer
dollars. This is especially evident when it comes to health services.
Health services that emphasize prevention and promotion will help to
reduce disease, leading to the improvement of the overall health and
well-being of America's older adults and resulting in the reduction of
premature and costly medical interventions. OHA strongly contends that
one's health and overall well-being begins with proper oral health.
This core belief applies throughout the lifespan and especially with
older adults.
background
The population of the United States is aging at an unprecedented
rate. Older adults make up one of the fastest growing segments of the
American population. In 2009, 39.6 million seniors were U.S. residents.
This aging cohort is expected to reach 72.1 million by 2030--an
increase of 82 percent.\1\
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\1\ Administration on Aging. (2013). Aging Statistics. Retrieved
from http://www.aoa.gov/Aging_Statistics/.
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The oral health of older Americans is in a state of decay. The
reasons for this are complex. Limited access to dental insurance,
affordable dental services, community water fluoridation, and programs
that support oral health prevention and education for older Americans
are significant factors that contribute to the unmet dental needs and
edentulism among older adults, particularly those most vulnerable.
While improvements in oral health across the lifespan have been
observed in the last half century, long term concern may be warranted
for the 10,000 Americans retiring daily, as it is estimated that only
9.8 percent of this ``silver tsunami''--baby boomers turning age 65--
will have access to dental insurance benefits.\2\
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\2\ Consumer Survey, National Association of Dental Plans. 2012.
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Dental Health and Disparities: Oral health data reveals that many
older adults experience adverse oral health associated with chronic and
systemic health conditions. For example, associations between heart
disease, periodontitis and diabetes have emerged in recent years, as
well as oral conditions such as xerostomia associated with the use of
prescription drugs.\3,4\ Xerostomia, commonly known as dry mouth,
contributes to the inception and progression of dental caries
(cavities). For older Americans, the occurrence or recurrence of dental
caries coupled with an inability to access treatment may lead to
significant pain and suffering along with other detrimental health
effects.
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\3\ Ira B. Lamster, DDS, MMSc, Evanthia Lalla, DDS, MS, Wenche S.
Borgnakke, DDS, PhD and George W. Taylor, DMD, DrPH. (2008). Journal of
the American Dental Association.
\4\ Fox, Philip C. (2008). Xerostomia: Recognition and Management.
Retrieved from: http://www.colgateprofessional.com.hk/LeadershipHK/
ProfessionalEducation/Articles/Resources/profed_art_access-supplement-
2008-xerostimia.pdf.
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These oral conditions disproportionately affect persons with low
income, racial and ethnic minorities, and those who have limited or no
access to dental insurance. Older adults with physical and intellectual
disabilities and those persons who are homebound or institutionalized
are also at greater risk for poor oral health.\5\
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\5\ U.S. Department of Health and Human Services. (2000). Oral
Health in America: A Report of the Surgeon General. Retrieved from
http://silk.nih.gov/public/[email protected].
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As examples of these disparities, older African American adults are
1.88 times more likely than their white counterparts to have
periodontitis; \6\ low-income older adults suffer more than twice the
rate of gum disease than their more affluent peers (17.49 verses 8.62
respectively); and Americans who live in poverty are 61 percent more
likely to have lost all of their teeth when compared to those in higher
socioeconomic groups.
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\6\ Borrel, L.N., Burt, B.A., & Taylor, G.W. (2005, October).
Prevalence and Trends in Periodontitis in the USA: from the NHANES III
to the NHANES, 1988 to 2000. Journal of Dental Research,84(10).
Retrieved from http://jdr.sagepub.com/content/84/10/924.abstract.
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Aging in Place: Despite these existing conditions, recent dental
public health trends demonstrate that as the population at large ages,
older Americans are increasingly retaining their natural teeth.\7\
Today, many older adults benefit from healthy aging associated with the
retention of their natural teeth, improvements in their ability to
chew, and the ability to enjoy a variety of food choices not previously
experienced by earlier generations of their peers.
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\7\ Dolan, T. A., Atchison, K., & Huynh, T. N. (2005). Access to
Dental Care Among Older Adults in the United States. Journal of Dental
Education, 69(9), 961-974. Retrieved from http://www.jdentaled.org/
content/69/9/961.long.
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Nearly 90 percent of older adults want to stay in their own homes
as they age, often referred to as ``Aging in Place.'' Today's older
adults are living more independently than previous generations. In
fact, only 9 percent of older adults live in a long-term care setting.
Maintaining a healthy mouth is one of the keys to independence as we
age, however resources for oral health remain conspicuously absent from
home and community-based services and are largely disconnected and
difficult to access.
Oral Care Provider Issues: Although a growing number of older
Americans need oral healthcare, the current workforce is challenged to
meet the needs of older adults. The current dental workforce is aging,
and many dental professionals will retire within the next decade. A
lack of geriatric specialty programs complicates this problem, and few
practitioners are choosing geriatrics as their field of choice.
While these trends are favorable, adverse oral health consequences
are emerging. Due to reasons stated in this report, together with
increased demand for services, lack of access to dental benefits
through Medicare, increased morbidity and mobility among older adults,
and reduced income associated with aging and retirement, many older
Americans are unable to access oral healthcare services. As a result,
many older adults who have retained their natural teeth are now
experiencing dental problems.
older adults' oral health in state of decay
OHA's 2018 A State of Decay, Vol. IV report is a state-by-state
analysis of oral healthcare delivery and public health factors
impacting the oral health of older adults. The report revealed more
than two-thirds of the country received a ``fair'' or ``poor''
assessment when it comes to minimal standards affecting dental care
access for older adults. The top findings of the report were:
--One-third (33 percent) of older adults have lost six or more teeth.
--25 U.S. states received a poor overall score based six key
performance measures.
--Minnesota, Wisconsin, Iowa, Connecticut and Colorado all earned an
``Excellent'' Composite Score. Iowa and California made big
improvements, jumping from 23 and 30, respectively, in 2016, to
3 and 9 in 2018.
--The States with the lowest overall scores are Wyoming, Delaware,
West Virginia, New Jersey, Arkansas, Texas, Oklahoma, Louisiana
and Tennessee, with Mississippi's score being the least
favorable. Alabama improved from 50 in 2016 to 29 in 2018.
--Community water fluoridation (CWF) increased from a State average
of 71.9 percent in 2016 to 72.6 percent in 2018, a national
increase of about 2.2 million people.
--Medicaid coverage of oral health benefits increased. Two States
(Delaware and South Dakota) provided no benefits in 2016 but
added some of the 13 services measured in this 2018 survey.
--More State oral health officials are including older adults in
State Oral Health Plans (SOHP) and administering Basic
Screening Surveys (BSS) that include seniors. The 2018 data
show 34 States have SOHPs; 31 include older adults.
--Sociodemographic factors, such as income, race, gender and
education play a critical role in oral health outcomes. The
severe tooth loss and recent dental visit data analyzed
individually on a national basis, showed an association with
household income. Low household income directly correlates with
predicted measures of poor oral health. As income levels rose,
so did the probability of good oral health.
Moreover, poor oral health has substantial financial implications.
For example, in 2010 alone, between $867 million and $2.1 billion was
spent on emergency dental procedures.\8\ When compared to care
delivered in a dentist's office, hospital treatments are nearly ten
times more expensive than the routine care that could have prevented
the emergency. This places a costly, yet avoidable, burden on both the
individual and the health institutions that must then bear the expense.
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\8\ Wall, Thomas and Nasseh, Dr. Kamyar, ``Dental-Related Emergency
Department Visits on the Increase in the United States,'' Health Policy
Institute, ADA, May 2013, http://www.ada.org//media/ADA/
Science%20and%20Research/HPI/Files/HPIBrief_0513_1.ashx.
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In sum, oral health and access to preventive care significantly
impact overall health and expenditure yet are difficult to maintain--
particularly for older adults--in the Nation's present context of
support systems and healthcare.
caregiving & oral health
Caregiving is important to the oral health community. Family
caregivers help with a myriad of activities for daily living, which
include performing tasks related to oral healthcare. Moreover, family
caregivers generally do not receive training or other instruction to
help them provide proper oral care. Preventing oral diseases in older
adults requires a caregiver's understanding of the risk factors for
oral diseases and how these risk factors change over time. For example,
there is a recognized association between periodontal disease and
diabetes. In addition, older adults make up a small portion of the
population today but consume 30 percent of all prescription
medications, some of which can have a negative impact upon oral health.
Therefore, oral health education of family, caregivers, and the aging
network is essential if oral diseases are to be avoided later in life
or if optimal oral health is to be achieved. The National Family
Caregivers Support Program is quite vital to providing such training,
education, and support services to family caregivers.
how oha empowers older adults to meet their oral health needs
Oral Health America's Wisdom Tooth Project aims to change the
lives of older adults especially vulnerable to oral disease. Its goal
is to educate Americans about the oral health needs of older adults,
connect older adults to local resources, and to advocate for policies
that will improve the oral health of older adults. The Wisdom Tooth
Project achieves these goals through five strategies: our web portal,
regional symposia, communications, advocacy and demonstration projects.
In addition to the A State of Decay report referenced above, a
vital component of the Wisdom Tooth Project is Toothwisdom.org, which
is a first-of-its-kind website created to connect older adults and
their caregivers to local care and education around the oral health
issues they face, the importance of continuing prevention as we age,
and the overall impact of oral health on overall health.
importance of oaa reauthorization to oral health of older adults
Recognizing this current state of oral health among older adults,
Oral Health America vigorously applauded the enactment of the
reauthorization of the Older Americans Act in April 2016. The law
includes--for the first time--a small provision that allows the Aging
Network to utilize OAA funding to conduct oral health screenings.
Preventive dental care that can be provided through oral health
screenings can head off more expensive dental work and help prevent
severe diseases. Unfortunately, dentists see older adults everyday
living with infection and pain that could be easily avoided with proper
care that these screenings could provide. Currently, OHA is working
with partners on a pilot project to test the implementation of the oral
health screening process. OHA is proud to play a role in its
implementation. Finally, and most important, OAA now recognizes the
importance of oral health and its role in disease prevention. We view
this as a step toward improving the oral--and overall--health of older
adults.
recommendation
It is evident the United States' healthcare system is woefully
unprepared to meet the oral health challenges of a burgeoning
population of older adults with special needs, chronic disease
complications, and a growing inability to access and pay for dental
services. However, the benefits of proper oral hygiene and routine care
for older adults to our Nation's healthcare system and economy are also
quite clear. Through OHA's Wisdom Tooth Project, OHA aspires to change
the lives of older adults especially vulnerable to oral disease. OHA
views proper funding of the Older Americans Act as a crucial Federal
investment vehicle to advance health promotion and disease prevention
among our Nation's elderly as well as providing vital support to family
caregivers who must look after their well-being. The increased
investment provided to OAA programs for fiscal year 2018, for which OHA
and its stakeholders are grateful, will help. Therefore, OHA recommends
the Subcommittee--at the minimum--to preserve fiscal year 2018 funding
levels for OAA programs. However, we strongly recommend the
Subcommittee to continue to nurture OAA programs and build off of
fiscal year 2018's appropriation with increased investment for fiscal
year 2019, especially for Title III-D Disease Prevention and Health
Promotion and Title III-E National Family Caregivers Support Program.
Thank you for the opportunity to present and submit our written
testimony before the Subcommittee.

[This statement was submitted by Beth Truett, CEO/President, Oral
Health America.]
______

Prepared Statement of PATH
This testimony is submitted by Carolyn Reynolds, on behalf of PATH,
an international nonprofit organization that drives transformative
innovation to save lives and improve health in low- and middle-income
countries. PATH is appreciative of the opportunity afforded by Chairman
Blunt, Ranking Member Murray, and members of the Subcommittee on Labor,
Health and Human Services, Education and Related Agencies to submit
written testimony regarding fiscal year 2019 funding for global health
programs within the U.S. Department of Health and Human Services (HHS).
PATH acknowledges the strong leadership the Committee has shown in
supporting HHS' work in this area, and recommends that support
continue. Therefore, we respectfully request that this Subcommittee
maintain funding to HHS in fiscal year 2019--including that the Centers
for Disease Control and Prevention's (CDC's) Center for Global Heath
(CGH) is funded at no less than $488.62 million, sustaining programming
for research and development, malaria, and immunization. CDC's Division
of Global Health Protection funding should be increased from $108.2
million to $208.2 million to bridge the funding gap created by the
expiring Ebola supplemental in fiscal year 2019--this specific division
capitalizes on the agency's technical expertise to improve health and
increase security, while bolstering the ability of partner countries to
lead in the future. We also request the creation of a $70 million
Emergency Reserve Fund at HHS--similar to the one established in the
fiscal year 2017 Omnibus for USAID--to quickly respond to disease
outbreaks, and a separate line item for Emerging Infectious Diseases
(EID)s within BARDA to enable work beyond pandemic influenza, with an
appropriation at a minimum of $300 million.
The Vital Role of HHS in Global Health and Security
Disease outbreaks pose direct threats to US national security and
place added burdens on fragile health systems. The recent Ebola and
Zika epidemics, and emerging crises such as antimicrobial resistance,
further demonstrate the influence that health security--or a lack of
it-- can have on American health. US investments in global health
security and deployed CDC personnel are making America safer today.
CDC's health security personnel and resources were indispensable in
averting crisis during the 2017 responses to outbreaks of Ebola in the
Democratic Republic of the Congo and Marburg in Uganda. Other
departments such as National Institute of Allergy and Infectious
Diseases (NIAID), the Fogarty International Center, and Biomedical
Advanced Research and Development Authority (BARDA) support these
efforts by building critical overseas capacity to stop the spread of
deadly diseases and investing in new tools and technologies to prevent,
detect and treat future outbreaks.
Yet as it currently stands, most of CDC's funding for global health
security is set to expire at the end of September 2019, forcing the
withdrawal of deployed capabilities to stop outbreaks at the source
remain into the future. This drives the United States into a reactive
position to face massive government expenditures and military
interventions. The ongoing threat that infectious disease poses to
American health, economic, and national security interests demands
dedicated and steady funding for global health security, as much as we
continue to invest in a strong military. Pulling back could result in a
100-fold more costly response later in terms of lives and treasure.
Congress must ensure that the United States prioritizes investments in
our global health security capability.
Immunization
HHS is also achieving complementary global health and security
goals through investment in immunization, with the majority of vaccine
delivery activities overseen by CDC's Global Immunization Division.
Vaccines are among the most high-impact and cost-effective tools to
combat infectious disease threats available today. Through
immunization, outbreaks of childhood diseases such as polio, measles,
diphtheria, and pertussis are preventable; and communities are
protected from some of the most infectious and lethal pathogens,
preventing an estimated 2.5 million deaths among children under the age
of 5 each year. As well as protecting the health of children,
immunization programs further support the creation of better disease
detection and health systems to help thwart other threats. As diseases
do not respect borders, and travel as easily as people within countries
and across continents, bolstering local systems helps safeguard
Americans by containing disease outbreaks before they spread.
For example, the CDC serves as the lead US technical agency in
providing scientific, research, and programmatic leadership for polio
eradication. Sustained investment and policy leadership by HHS will
enable the eradication and certification of a polio-free world. CDC's
Strategic Framework for Global Immunization 2016--2020 builds upon
CDC's 50 year history in effective immunization programing to increase
vaccine coverage and protect Americans at home. We urge the committee
to continue to fully fund global immunization programs, including polio
and measles.
Fighting to Eliminate Malaria
CDC plays a critical role as a co-implementer of the President's
Malaria Initiative (PMI) --alongside the US Agency for International
Development--as well as through its Parasitic Diseases and Malaria
program, providing technical assistance, with a focus on monitoring,
evaluation, surveillance, as well as operational and implementation
research. Malaria prevention and treatment programs have averted 6.8
million deaths globally since 2000. An estimated 263 million of the
malaria cases averted by malaria control programs would have required
care in the public sector, translating into $900 million in savings in
government healthcare spending. This progress could not have been
accomplished without a sustained US commitment to combating the
disease.
With incidence and death rates still unacceptably high in addition
to evidence of growing insecticide and drug resistance, CDC's research
to develop and evaluate interventions demonstrates new approaches to
better fight this long-standing and ever-changing disease. With PMI's
new strategy and expansion, CDC's mandate has grown, while its budget
for malaria has been flat. In fiscal year 2019, Congress should fully
fund PMI and the CDC Parasitic Diseases and Malaria (DPDM) program, to
ensure prioritization of research and development of new tools.
Congress should also exercise its oversight of all relevant US agencies
that are implementing malaria programs to ensure that the goal of
elimination is a priority and that programs are monitored and evaluated
for efficiency, cost-effectiveness, and progress toward a world free
from malaria.
Protecting the U.S. Through Leadership in Global Health R&D
While access to proven health interventions must be extended, it is
also critical to support research and development into new technologies
that can prevent emerging global health threats.
For example, new and improved vaccines, such as an effective, low-
cost vaccine against meningitis A--a disease that historically caused
devastating outbreaks each year in Africa's Meningitis Belt--which was
developed and delivered by CDC. Zero cases of meningitis A have
occurred among the more than 235 million Africans vaccinated since
2010. In response to the 2014 outbreak, US funding for Ebola R&D
increased from negligible levels in 2013, to $101 million in 2014, to
$298 million in 2015, resulting in four new products for Ebola and
select viral hemorrhagic fevers being registered, and the advancement
of 11 new US-supported Ebola products in the development process. These
efforts were supported by the CDC as well as NIH, BARDA and agencies
outside HHS, which all played unique and critical roles in the product
development process.
Within HHS, the Biological Advanced Research and Development
Authority (BARDA) plays an unmatched role across the U.S. Government by
providing an integrated, systematic approach to the development and
purchase of critical health technologies for public health emergencies.
PATH has worked closely with BARDA to enhance manufacturing capacity
for these products in developing countries. Continued support of
BARDA's work will help ensure vaccine supplies are available worldwide
to help stop the spread of pandemics and enhance American's health
security. BARDA has also played a vital role in the development of
urgently needed countermeasures for emerging infectious diseases (EIDs)
like Ebola and Zika--developing three Ebola vaccine candidates, six
diagnostics for Zika, and five Zika vaccine candidates in under 2
years. To date, BARDA's work in advancing tools to protect against the
threat of EIDs has been funded through emergency funding. To ensure the
continuation of this critical work, PATH supports the creation of a
separate line item for EIDs within BARDA, with an appropriation at a
minimum of $300 million.
An Investment in Health, at Home and Around the World
With strong funding for global health programs within HHS, the
department will be able to improve access to proven health
interventions in the communities where they are needed most, while at
the same time investing in solutions to tomorrow's challenges. By fully
funding the global health and BARDA accounts, the US can protect the
health of Americans while ensuring that people everywhere have the
opportunity to lead healthy lives and reach their full potential.

[This statement was submitted by Carolyn Reynolds, Vice President,
Advocacy and Public Policy, PATH.]

______

Prepared Statement of Peel Ann D. deg.
Prepared Statement of Ann D. Peel
Mr. Chairman, Amyloidosis is a rare and often fatal disease. I ask
that you include language in the Committee's report for fiscal year
2019 recommending that NIH expand its research efforts into
amyloidosis, a group of rare diseases characterized by abnormally
folded protein deposits in tissues. I also ask that the Committee
direct NIH to inform the Committee on the steps taken to increase the
understanding of the causes of amyloidosis and the measures taken to
improve the diagnosis and treatment of this devastating group of
diseases.
Mr. Chairman, I have presented Congressional testimony related to
Amyloidosis for more than a decade. I want to thank you for the
language included by the Senate Appropriations Committee in the fiscal
year 2018 Health and Human Services report. Your Committee over the
years has been instrumental in moving forward to finding the causes and
a cure for Amyloidosis.
I wish I could report to you today that the efforts of NIH and
others have solved the problem. However, there is no known cure for
amyloidosis. I urge you to continue the efforts of this Committee to
help people with amyloidosis have hope for the future.
Current methods of treatment are risky and unsuitable for many
patients. I have endured two stem cell transplants in order to fight
the deadly disease amyloidosis and have been one of the lucky ones to
survive the disease for 15 years. This was due to the intensive, life-
saving treatment that I have received through the Amyloidosis Center at
Boston University School of Medicine and Boston Medical Center. I
continue to participate in a clinical trial that looks for ways to
diagnose and treat amyloidosis.
Amyloidosis remains a threat, even for people with successful
treatment. After 13 years of no amyloidosis symptoms, last year I
underwent 5 months of chemotherapy to address concerns that signs of
amyloidosis were developing.
This additional treatment has been effective. Due to research,
there are new forms of treatment that are options for me and patients
with recurring amyloidosis. These new treatment options were not
available 14 years ago. They provide evidence that funding through
Health and Human Services can make a difference.
I ask for your support in helping me turn what has been my life-
threatening experience into hope for others.
amyloidosis
Amyloidosis occurs when unfolded or misfolded proteins form amyloid
fibrils and are deposited in organs, such as the heart, kidneys and
liver. These misfolded proteins clog the organs until they no longer
are able to function-sometimes at a very rapid pace. I have been
treated for primary amyloidosis, a blood or bone marrow disorder.
Amyloidosis can cause heart, kidney, or liver dysfunction and
failure and severe neurologic problems. Left untreated, the average
survival is about 15 months from the time of diagnosis.
Amyloidosis can literally kill people before they even know that
they have the disease.
Researchers have not been able to determine the root cause of the
disease or an effective low-risk treatment. The patients with
amyloidosis who are able to obtain treatment face challenges that can
include high dose chemotherapy and stem cell transplantation or organ
transplantation.
Amyloidosis is vastly under-diagnosed. Thousands of people die
because they were diagnosed too late to obtain effective treatment.
Thousands of others die never knowing they had amyloidosis.
In addition to primary amyloidosis, there are also thousands of
cases of inherited (familial) and age-related amyloidosis. The most
common familial type of amyloidosis was found to be caused by mutations
in a protein made in the liver. This is the form of amyloidosis that
may be present in a significant number of African-Americans.
Older Americans are susceptible to heart disease due to amyloid
formed from the non-mutated form of the same protein. Another type of
amyloidosis, secondary or reactive amyloidosis, occurs in patients with
chronic infections or inflammatory diseases.
It was not until the 1980s that research identified the most common
amyloid proteins and rationales for treatment began being discussed.
The first clinical trial using oral chemotherapy for primary
amyloidosis was begun 28 years ago, and high dose chemotherapy with
stem cell transplantation was developed in 1994. The first liver
transplant in the United States for familial amyloidosis was performed
in 1992.
There is no explanation for how or why amyloidosis develops.
Although progress has been made in developing alternate forms of
treatment for amyloidosis, there is still no known reliable cure.
All of these types of amyloidosis, left undiagnosed or untreated,
are fatal.
amyloidosis treatment
The Amyloidosis Center at Boston University School of Medicine and
Boston Medical Center, and other centers for amyloidosis treatment,
have found that high dose intravenous chemotherapy followed by stem
cell transplantation is an effective treatment in selected patients
with primary amyloidosis. Abnormal bone marrow cells producing
amyloidogenic precursor protein are killed through high dose
chemotherapy, and the patient's own extracted blood stem cells are
replaced in order to improve the recovery process.
The treatment of individuals identified with amyloidosis varies
with each patient. It depends on the type of amyloidosis, the specific
organ systems involved, and the extent of involvement. An exact course
of the disease is unpredictable. Some patients have achieved remission
of disease and major organ system improvement. Barring a cure to
amyloidosis, the current treatment goal is to provide a complete
remission and if not to induce a ``durable'' or long remission.
The high dose chemotherapy and stem cell transplantation and other
new drugs have increased the remission rate and long-term survival
dramatically. However, this treatment can also be life threatening and
more research needs to be done to provide less risky forms of
treatment.
research
Prior year research and equipment funding through HHS and NIH has
been helpful in developing new treatment alternatives for some patients
with amyloidosis. Although funding is severely limited, researchers are
moving forward to develop targeted treatments that will specifically
attack the amyloid proteins.
The outlook is better each year as clinical research has led to
improvements in therapy, but more research and better diagnosis is
necessary to save thousands of lives. Only through more research is
there hope of further increasing the survival rate and finding
additional treatments to help more patients.
diagnosis
Early diagnosis and treatment are the keys to success. More needs
to be done in these areas to alert health professionals to identify
this disease. Although I was diagnosed at a very early stage of the
disease, many people are diagnosed after the point that they are
physically able to undertake treatment.
I believe there are many more cases of amyloidosis than are known,
as the disease can escape diagnosis and patients die of ``heart
failure, ``liver failure,'' etc. In reality, some of these people had
amyloidosis. Perhaps amyloidosis is not as rare a disease as we think.
current initiatives
Through the leadership of this Committee and the further
involvement of the U.S. Government, a number of positive developments
have occurred.
--The National Institutes of Health has substantially increased its
interest in amyloidosis. The Amyloidosis Research Consortium
(ARC), a network of clinical centers caring for amyloidosis
patients, has developed and is working with the Food and Drug
Administration and pharmaceutical companies to enhance drug
development for amyloidosis.
--Research supported by the National Institute of Neurologic
Disorders and Stroke at NIH and the Office of Orphan Products
Development at the Food and Drug Administration led to
successful repurposing of a generic drug that markedly slows
progression of familial amyloidosis.
--There has been increased basic and clinical research at the Boston
University Amyloidosis Center: models of light chain (AL)
amyloid disease have been developed; serum chaperone proteins
that cause amyloid precursor protein misfolding are being
identified; imaging techniques for the diagnosis of amyloid
disease are being investigated, and new clinical trials for AL
and familial amyloidosis are underway. A study of the age-
related form of amyloid heart disease has provided natural
history data.
--Federal funding for research, equipment and treatment has been an
important element in progress to date. Further funding is
essential to speed the pace of discovery for basic and clinical
research.
request for fiscal year 2019
Mr. Chairman, the United States Congress and the Executive branch
working together are key to finding a cure for and alerting people to
this terrible disease. I ask that the Committee take the following
actions in the fiscal year 2019 Committee report:
--First, include language recommending that NIH expand its research
efforts into amyloidosis.
--Second, direct the NIH to keep the Committee informed on the steps
taken to increase the understanding of the causes of
amyloidosis and the measures taken to improve the diagnosis and
treatment of this devastating group of diseases.
I want to use my experience with this rare disease to help save the
lives of others. With your support more can be done to help me achieve
my dream.
Thank you for your consideration.
______

Prepared Statement of the Personalized Medicine Coalition
Chairman Blunt, Ranking Member Murray and distinguished members of
the subcommittee, the Personalized Medicine Coalition (PMC) appreciates
the opportunity to submit testimony on the National Institutes of
Health (NIH) fiscal year 2019 appropriations. PMC is a nonprofit
education and advocacy organization comprised of more than 200
institutions from across the healthcare spectrum. As the subcommittee
begins work on the fiscal year 2019 Labor, Health and Human Services,
Education and Related Agencies appropriations bill, we ask that you
include at least $39.3 billion in funding for the NIH. Our request
would raise NIH's base funding by $2 billion over the final fiscal year
2018 funding level and add $215 million from the 21st Century Cures Act
Innovation Account scheduled for NIH in fiscal year 2019.
Personalized medicine, also called precision or individualized
medicine, is an evolving field in which physicians use diagnostic tests
to identify specific biological markers, often genetic, that help
determine which medical treatments will work best for each patient. By
combining this information with an individual's medical records,
circumstances, and values, personalized medicine allows doctors and
patients to develop targeted treatment and prevention plans.
Personalized healthcare promises to detect the onset of and pre-empt
the progression of disease as well as improve the quality,
accessibility, and affordability of healthcare.\1\
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\1\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
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i. the role of nih in personalized medicine
Accounting for more than one of every four new drugs approved by
the U.S. Food and Drug Administration (FDA) over the past 4 years,\2\
personalized medicine is a rapidly growing field. Biopharmaceutical
companies nearly doubled their R & D investment in personalized
medicines over 5 years, and expect to increase their investment by an
additional third over the next 5 years.\3\ According to the same
survey, leading manufacturers also identified scientific discovery as
the biggest challenge facing personalized medicine, followed closely by
regulatory and reimbursement barriers.
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\2\ http://www.personalizedmedicinecoalition.org/Resources/
Personalized_Medicine_at_FDA_
An_Annual_Research_Report.
\3\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/pmc-phrma-personalized-medicine-investment-21.pdf.
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As the primary Federal agency conducting and supporting basic and
translational research investigating the causes, treatments and cures
for both common and rare diseases, NIH is leading scientific discovery
for personalized medicines. Many institutes and centers at the NIH are
supporting basic and translational research informing the discovery of
personalized treatments, including the National Human Genome Research
Institute (NHGRI), the National Cancer Institute (NCI), and the
National Center for Advancing Translational Sciences (NCATS). An
increase for NIH in fiscal year 2019 would protect its foundational
role in the identification and development of personalized medicines.
ii. the cures innovation fund: accelerating personalized medicine
research
By passing the 21st Century Cures Act (The Cures Act), Congress
acknowledged the need for NIH to accelerate basic research and provided
funding for long-term initiatives, two of which will benefit
personalized medicine. First, the All of Us^TM Research
Program will provide an unprecedented dataset of genetic information
that promises to improve our understanding of the genetic basis of
common and rare diseases. The program awarded its first four community
partner awards this year to organizations well-positioned to engage and
enroll communities usually underrepresented in biomedical research.\4\
This was an initial step the All of Us Program took to collect genetic
and health information from one million diverse volunteers. Second, the
Cancer Moonshot initiative aims to make a decade's worth of cancer
research progress in 5 years by transforming how cancer research is
conducted. The initiative granted 142 awards, including grants in five
areas of precision oncology, and established cancer research
collaborations, including the Partnership for Accelerating Cancer
Therapies (PACT). PACT is a public-private collaboration between the
NIH and 11 biopharmaceutical companies to standardize the biological
markers of cancer for new immunotherapy treatments. Immunotherapies
have provided new treatment options for many patients who do not
respond to other cancer therapies. Discoveries through PACT will help
scientists understand why immunotherapies work for some but not all
patients.
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\4\ https://www.nih.gov/about-nih/who-we-are/nih-director/
testimony-implementation-21st-century-cures-act-progress-path-forward-
medical-innovation.
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The Cures Act authorizes funding for these initiatives through the
Cures Innovation Fund over the next 10 years for a total of $4.8
billion; however, funding must be appropriated each year. An increase
of $215 million to the Cures Innovation Fund in fiscal year 2019, as
scheduled for NIH, would ensure these programs can continue their
important research.
iii. nih base funding: sustaining basic and translational research
While the initiatives funded by the Cures Act are important for the
growth of personalized medicine, scientific discovery begins with basic
research that gathers fundamental knowledge about the genetic basis of
a disease and with translational research aimed at applying that
knowledge to develop a treatment or cure. From 2003 to 2015, NIH lost
more than 20 percent of its purchasing power.\5\ This loss of
purchasing power, coupled with biomedical inflation, leaves NIH funding
for basic and translational research short of where it needs to be to
sustain the discovery and development of new personalized medicines.
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\5\ https://www.nih.gov/about-nih/who-we-are/nih-director/fiscal-
year-2016-budget-request.
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Discovering New Biological Markers for Disease:
Basic research has led to the development of over 130 personalized
medicines currently on the market and available for patients.\6\ This
includes novel cancer immunotherapies that harness a patient's immune
system to fight cancer. This treatment is only possible thanks to the
decades of basic research to understand how the immune system functions
at the molecular level and the genetic characteristics of specific
cancers. Basic genomics research also offers opportunities beyond
oncology, especially with rare diseases. Rare diseases affect an
estimated 25 to 30 million Americans, and with advances in genomics,
the molecular cause of 6,500 rare diseases has been identified.
However, only 500 of these rare diseases have approved treatments.\7\
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\6\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
\7\ https://www.nih.gov/about-nih/who-we-are/nih-director/fiscal-
year-2018-budget-request.
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Even though NIH's budget saw a major appropriations increase in
fiscal year 2018, at least 40 percent was designated to specific
programs,\8\ limiting the increase in funds available for basic and
translational research. Reliable and consistent funding across all NIH
institutes and centers will ensure basic research continues to identify
new biological markers for disease.
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\8\ https://appropriations.house.gov/uploadedfiles/
03.21.18_fy18_omnibus_labor_health_and
_human_services_summary.pdf.
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Translating Discovery into Development:
Translational researchers require new resources and tools to bridge
basic research discoveries with activities to develop treatments or
cures. After decades of NIH-funded basic research, gene editing is
enabling researchers to ``correct'' a genetic mutation causing a
disease. The NIH launched the Somatic Cell Genome Editing program led
by NCATS to accelerate the utilization of this technology by
researchers in the development of new therapies. NIH has also recently
released the PanCancer Atlas, a data set of molecular and clinical
information from over 10,000 tumors representing 33 types of cancer.
The project involved 150 researchers at more than two dozen
institutions and was led by the NHGRI and NCI. The PanCancer Atlas
provides an unparalleled resource for understanding the genetics of
why, where, and how tumors arise. An increase in NIH base funding in
fiscal year 2019 will ensure translational research like this can
continue for personalized medicine.
de-risking research and development:
Developing a new treatment takes well over a decade; has a failure
rate of more than 95 percent; and costs more than $1 billion.\9\ Not
all discoveries lead to effective drug targets, and choosing the wrong
biological target can result in costly failures late in the drug
development process. The NIH's Small Business Innovation Research
(SBIR) and Small Business Technology Transfer (STTR) programs invest in
companies to incentivize high-risk research on new drugs and therapies.
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\9\ https://www.nih.gov/research-training/accelerating-medicines-
partnership-amp.
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NIH also establishes collaborations to reduce the risk of
developing new personalized medicines. As a public-private partnership
between the NIH, the FDA, 12 biopharmaceutical and life science
companies, and 13 nonprofit organizations, the Accelerating Medicines
Partnership (AMP) seeks to change the current model for the development
of new diagnostics and treatments starting with Alzheimer's disease,
type 2 diabetes, lupus, and Parkinson's disease. Industry and nonprofit
participants only account for 26 percent of the program's funding. AMP
promises to shorten timelines, cut costs, and increase the success
rates of treatment development by pinpointing the right biological
targets early in drug development. Robust funding will empower NIH to
continue de-risking research and supporting industry through
collaborations like these that have the potential to improve clinical
trials success rates, including those for personalized medicines.
iv. conclusion
PMC appreciates the opportunity to highlight the NIH's important
contributions to the success of personalized medicine. The
subcommittee's support for a $2 billion increase in base funding, plus
the $215 million increase scheduled through the Cures Act's Innovation
Account, will bring us closer to a future in which every patient
benefits from an individualized approach to healthcare.

[This statement was submitted by Cynthia A. Bens, Senior Vice
President, Public Policy, Personalized Medicine Coalition.]
______

Prepared Statement of The Pew Charitable Trusts
Chairman Blunt, Ranking Member Murray, and distinguished Members of
the Subcommittee:
Thank you for this opportunity to submit prepared testimony in
support of fiscal year 2019 appropriations funding for certain programs
and activities at the U.S. Department of Health and Human Services
(HHS) with the potential to have a meaningful impact on public health.
Pew is a nonprofit, nonpartisan research and policy organization with
programs that touch on many areas of American life. We appreciate the
critical investments the Subcommittee has already made on a bipartisan
basis in recent years to help scientists, physicians, and public health
officials combat antibiotic resistance (AR) and strengthen the
implementation of health information technology. The Agencies and
programs discussed below are vitally important to strengthening public
health for all Americans, and we urge you to increase the appropriated
Budget Authority for these crucial investments. We appreciate your
consideration.
antibiotic resistance
Each year, CDC estimates that over two million illnesses and about
23,000 deaths are caused by antibiotic resistance in the United States
alone; this leads to approximately $20 billion in excess direct
healthcare costs. Both the U.S. Centers for Disease Control and
Prevention and the U.S. Department of Health and Human Services, Office
of the Assistant Secretary for Preparedness and Response play integral
roles in detecting and responding to antibiotic resistance.
Within the CDC's Emerging and Zoonotic Infectious Diseases (EZID)
budget line:
Antibiotic Resistance Solutions Initiative (ARSI)
CDC's ARSI supports a national infrastructure to detect, respond,
and contain antibiotic resistant infections across healthcare, food,
and the community. This nationwide antibiotic resistance infrastructure
provides fundamental public health capabilities, combined with
specialized programs, for the country to effectively prevent, detect,
and respond to potentially life threatening AR pathogens such as
carbapenem-resistant Enterobacteriaceae (CRE), C. auris, and resistant
Salmonella. Laboratory and epidemiological expertise in all 50 States,
six large cities, and Puerto Rico is vital to rapidly identify,
contain, and prevent transmission of AR threats in healthcare, in the
food supply and in the community. In addition, CDC's Antibiotic
Resistance Laboratory Network (ARLN) supported by ARSI funding,
provides specialized capabilities that serve as a critical resource for
cutting-edge lab support to States, and fosters innovations in
antibiotic and diagnostic development. Finally, ARSI-funded programs in
25 States and 3 cities prevent and contain hospital-acquired and
antibiotic resistant threats through the targeted prevention
intervention efforts of State and local public health officials and
healthcare facilities.
We respectfully request $200 million for CDC's Antibiotic
Resistance Solutions Initiative in fiscal year 2019.
Advanced Molecular Detection (AMD)
Advanced molecular detection introduces rapid technological
innovation, such as genomic sequencing of pathogens, to allow for
better prevention and control of infectious diseases. AMD technologies
incorporate newer, more powerful pathogen and resistance detection
methods, often replacing more costly, time-consuming methods. As a
result, AMD is obtaining higher quality data, detecting outbreaks
sooner, and responding more effectively--ultimately saving lives and
reducing costs. Additionally, AMD is helping to understand,
characterize, and control antibiotic resistance and develop and target
prevention measures, including vaccines. Additional funding for AMD
will strengthen CDC's ability to further implement AMD protocols and
technologies at CDC and State and local health departments; update IT
infrastructure; and promote workforce modernization through additional
training for CDC scientists and State public health staff in pathogen
genetic sequencing, analysis, and interpretation.
We respectfully request $40 million for CDC's Advanced Molecular
Detection in fiscal year 2019.
National Healthcare Safety Network (NHSN)
Healthcare facilities identify and prevent healthcare-associated
infections (HAI) and other health events using CDC's NHSN--the Nation's
most comprehensive and widely used HAI/antibiotic resistance
surveillance system. Currently, 36 States, the District of Columbia and
the City of Philadelphia have implemented HAI reporting requirements
using NHSN, and over 22,000 healthcare facilities nationwide use NHSN
as the cornerstone of their HAI elimination strategies. Public health
and healthcare partners--including healthcare facilities (e.g.,
hospitals, dialysis facilities, and nursing homes), State and local
health departments, and Federal partners (e.g., the Centers for
Medicare and Medicaid Services (CMS), HHS, the Food and Drug
Administration (FDA) , the Department of Defense (DoD), and the
Department of Veterans Affairs (VA))-- have used NHSN data and system
tools to identify problem areas, measure and benchmark the success of
prevention efforts, and ultimately drive progress toward elimination of
HAIs. Increased funding for NHSN will support CDC's efforts to measure
antibiotic use in hospitals and target efforts to reduce inappropriate
use and stop unnecessary antibiotic exposure, which puts patients at
risk of highly resistant infections and secondary complications such as
C. difficile infections.
We respectfully request $31 million for CDC's National Healthcare
Safety Network in fiscal year 2019.
Within the Office of the HHS Assistant Secretary for Preparedness
and Response:
Biomedical Advanced Research and Development Authority (BARDA)
BARDA has taken a unique partnership approach to address the
challenging market for antibacterials by engaging industry through its
Broad Spectrum Antimicrobials program. This highly unique program
supports late-stage development of novel antibacterial and antiviral
drugs to treat or prevent diseases caused by biological threats and to
address the public health threat of antibiotic resistance. BARDA
support through this program has been critical for the advancement of
several antibiotics in clinical development leading to several new drug
applications and a recent approval. BARDA also engages in strategic
partnerships, through its use of Other Transaction Authority, to
support a portfolio of antibacterial candidates with several companies.
In 2015, to address the lack of antibiotic on the market, the U.S.
National Action Plan on Combatting Antibiotic-Resistant Bacteria called
for the development of a biopharmaceutical accelerator to spur pre-
clinical product development. In fiscal year 2016, and in response to
the Action Plan's recommendations, BARDA created CARB-X--a
biopharmaceutical accelerator to spur pre-clinical antibiotic
development that focuses on a critical gap in the antibiotic pipeline
(pre-clinical through investigational new drug (IND) filing). CARB-X
has already shown initial success with three products in their
portfolio entering into clinical development. Sustained funding for
this BARDA initiative is needed to ensure success so that novel and
impactful products can ultimately reach patient bedsides. Additional
funding would allow BARDA to expand its portfolio of partnerships and
set up CARB-X for success.
We respectfully request $392 million for BARDA's Broad Spectrum
Antimicrobial Program and CARB-X in fiscal year 2019.
Within the Office of the National Coordinator for Health
Information Technology (ONC):
Health Information Technology
Electronic health records have revolutionized modern medicine
through improvements to safety and efficiency. However, the design,
customization and use of these systems--or usability--can also
contribute to unexpected patient harm, such as incorrect drug dosages
or missed laboratory results. In the 21st Century Cures Act (Public Law
114-255 (2016)), Congress instructed ONC to both develop new voluntary
criteria for electronic health records used in the care of children and
to specify reporting requirements to evaluate the usability of health
IT generally. These provisions offer a meaningful opportunity to
improve patient safety. For example, many uses of EHRs are more
prevalent in pediatric care, such as dosing medications based on the
patient's weight. Requested report language has been submitted under
separate cover. The requested language would ensure that the Office
prioritizes issues that affect patient safety to further enhance how
health IT can reduce medical errors.

[This statement was submitted by Allan Coukell, Senior Director,
Health
Programs, The Pew Charitable Trusts.]
______

Prepared Statement of the Physician Assistant Education Association
The Physician Assistant Education Association (PAEA), on behalf of
the 235 accredited PA programs in the United States, is pleased to
submit the following testimony in support of sustained investment in
Title VII health workforce programs under the Public Health Service Act
in fiscal year 2019. PAEA joins with our health professions education
colleagues in requesting $690 million in fiscal year 2019 for Title VII
health workforce and Title VIII nursing workforce programs. PAEA also
requests that $12 million be directed to support innovation in primary
care education and the ongoing development of PA programs under the
Primary Care Training and Enhancement (PCTE) program in fiscal year
2019. Of note, PAEA wishes to commend the Subcommittee for its long-
time support of the 15 percent funding floor for PA training in the
PCTE program. At a time of rapid growth in both PA education and the PA
profession, continued Federal investment is essential to the
development of a well-prepared PA workforce capable of providing high-
quality care to patients throughout the country.
pa education: promoting public health
For more than 50 years, PAs have been on the frontlines of
healthcare delivery in the United States and have played a crucial role
in expanding access to care in rural and medically underserved areas.
PA programs are designed in the medical training model and are second
only to physician education in requiring more than 2,000 hours of
rigorous clinical training, in addition to didactic instruction. Our
member programs graduate more than 8,000 new PAs each year, with a
plurality of students going on to serve in primary care capacities
following graduation.\1\ PAs currently constitute a significant portion
of the primary care workforce, with more than 25,000 PAs practicing in
primary care capacities.\2\
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\1\ Physician Assistant Education Association. (2017). By the
Numbers: Program Report 32: Data from the 2016 Program Survey,
Washington, DC: PAEA. doi: 10.17538/PR32.2017.
\2\ National Commission on Certification of Physician Assistants.
(2016). 2016 Statistical Profile of Certified Physician Assistants by
Specialty. Johns Creek, GA: NCCPA. https://
prodcmsstoragesa.blob.core.windows.net/uploads/files/
2016StatisticalProfilebySpecialty.pdf.
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A major challenge to the ability of PA programs to prepare enough
graduates to meet the Nation's healthcare needs is clinical site
capacity, particularly in primary care and behavioral health. This
shortage of clinical sites will become even more significant as PAs in
primary care play an increasingly crucial role in addressing the opioid
epidemic through the use of medication-assisted treatment (MAT) and
other behavioral health interventions. Continued Federal investment in
primary care training for PA programs is critical to meet these public
health and workforce demands.
the opioid crisis: pa education is part of the solution
The national opioid epidemic that is ravaging communities
throughout the United States presents a clear and compelling challenge
to both policymakers and the health professions community. The Centers
for Disease Control and Prevention estimates that 42,000 people died in
2016 as the result of opioid-related overdoses--a tragic figure that
calls for a marked shift in strategy among educators tasked with
preparing the future health workforce.\3\ While Congress has already
acted boldly to implement short-term measures by expanding access to
treatment through State Targeted Response grants and improving the
capacity of PAs to prescribe MAT through the Comprehensive Addiction
and Recovery Act, this deep-rooted crisis also requires long-term
workforce solutions.
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\3\ Opioid Overdose. (2017). Retrieved April 02, 2018, from https:/
/www.cdc.gov/drugoverdose/index.html.
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Currently, there are not enough clinical training sites to train
the number of PAs needed to treat those suffering from opioid use
disorder (OUD), particularly in the fields of primary care and
behavioral health, and funding is inadequate to facilitate
instructional innovation in preparing students to provide care to those
with OUD. To help PAs contribute optimally to the long-term solution to
the national opioid crisis, PAEA urges Congress to implement a
comprehensive strategy to improve clinical training site availability
and quality, while increasing investments in existing Title VII
workforce programs.
clinical training sites: investment needed
One component of a broader national response to the opioid epidemic
must be improving both the availability and quality of behavioral
health clinical training sites. In a 2014 survey of PA programs,
behavioral and mental health clinical training sites and preceptors
were found to be the third most difficult to recruit.\4\ We are deeply
concerned about the impact of limited clinical site capacity on the
ability of PA programs to provide the best possible training to
students. According to PAEA's most recent Student Report, regarding
clinical rotations, students were least likely to give psychiatry and
behavioral medicine rotations--those with the most direct bearing on
OUD training--an ``excellent'' rating.\5\ Furthermore, increased demand
for providers with the skills necessary to treat OUD will be a growing
source of pressure on the Nation's already limited supply of clinical
training sites in primary care. Continuing support of Title VII health
workforce programs, which benefit PA training in primary care, remains
a crucial step Congress can take to improve the capacity of PA programs
to prepare practice-ready graduates.
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\4\ Physician Assistant Education Association. (2014). 2014 PAEA
Program Survey. Alexandria, VA: PAEA.
\5\ Physician Assistant Education Association. (2017). By the
Numbers: Student Report 1. Washington, DC: PAEA. doi: 10.17538/
SR2017.0001.
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title vii funding
As the PA education community grapples with existing structural
barriers to building the PA workforce in response to the national
opioid epidemic, current Federal initiatives have a significant role to
play in the development of workforce solutions. Recognizing the
importance of a well-trained PA workforce in primary care, Congress
enacted a 15 percent allocation requirement for PA education under the
PCTE program beginning in 2010. This funding has been an invaluable
tool for stimulating innovation in PA primary care education--with
demonstrable positive implications for student training and patient
care. For example, the PA program at James Madison University has used
PCTE funding to operate a Physician Assistant Student-Engaged Medical
Clinic focusing on primary care training with a medically underserved
patient population. Moreover, citing the most recent outcomes data
available as of fiscal year 2016, the Health Resources and Services
Administration has found that the PCTE program significantly exceeds
targets both in the number of PAs graduating from funded programs as
well as those trained in and going on to practice in underserved
areas.\6\ To encourage continued innovation in primary care instruction
among PA education programs, especially as we work to address the
opioid epidemic, PAEA urges the Subcommittee to protect the 15 percent
funding floor in the PCTE program in fiscal year 2019.
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\6\ Health Resources and Services Administration. (2018). fiscal
year 2019 Congressional Budget Justification. Rockville, MD: HRSA.
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diversity and care for underserved populations
In addition to the innovation in primary care instruction made
possible through PCTE grants, PAEA also strongly supports increased
funding for Scholarships for Disadvantaged Students, the National
Health Service Corps, and the Health Careers Opportunity Program. These
initiatives help increase the diversity of the healthcare workforce and
expand access to essential healthcare services. Federal investments in
the training and subsequent retention of PA students from underserved
areas, which are often those hardest hit by the opioid epidemic, are
crucial and a vital part of the long-term solution to this public
health crisis.
recommendations for fiscal year 2019 appropriations
To facilitate continued innovation in PA education, PAEA urges the
Subcommittee to reinforce its commitment to Title VII health workforce
programs in fiscal year 2019. Along with our partners in the health
professions, we support funding Title VII and Title VIII programs at a
total level of $690 million for fiscal year 2019. Regarding specific
funding for PA education under the PCTE programs, we request $12
million to continue enhancing the long-standing track record of PA
graduates providing high-quality primary care to patients.
PAEA thanks the Subcommittee for its ongoing support of Title VII
health workforce programs and their role in supporting PAs as a vital
component of long-term solutions to the opioid epidemic. We look
forward to continuing to work with members to educate and develop the
PA workforce necessary to combat the opioid epidemic and to promote
public health across the country.

[This statement was submitted by Lisa Mustone Alexander, EdD, MPH,
PA-C, President, Physician Assistant Education Association.]
______

Prepared Statement of the Polycystic Kidney Disease Foundation
The PKD Foundation appreciates the opportunity to present our
support for increasing fiscal year 2019 spending for the National
Institutes of Health (NIH) in general and the National Institute of
Diabetes and Digestive Diseases and Kidney Disease (NIDDK) in
particular and for recognizing PKD in NIH's next list to Congress on
updated research activities.
Autosomal dominant polycystic kidney disease (ADPKD) is a genetic
disease that causes fluid-filled cysts to grow uncontrolled in the
kidneys and can eventually lead to kidney failure. It is a painful
disease that significantly impacts quality of life, causing a host of
other issues including cysts in other organs such as the liver, chronic
hypertension and increased risk for cerebral aneurysms. A parent with
ADPKD has a 50 percent chance of passing it to each child. ADPKD
affects 1 in 500 to 1 in 1,000 live births, but many cases go
undiagnosed due to death by related or unrelated causes prior to end
stage renal disease. Over 600,000 Americans have ADPKD.
The recessive form of the disease, autosomal recessive polycystic
kidney disease (ARPKD), is a rare disease, affecting 1 in 20,000 live
births. It is often life-threatening and can cause death shortly after
birth. If both parents have the ARPKD gene, there is a 25 percent
chance that each offspring will inherit the disease. There is no
treatment for ARPKD.
PKD is the fourth leading cause of kidney failure with about 50
percent of PKD patients entering end stage renal disease in their 50's.
Very few treatment options exist for PKD patients, and once their
kidneys fail they must undergo dialysis or a kidney transplant. While
these options are life-saving, they are both associated with excess
morbidity and mortality. The very first treatment for PKD was approved
in April 2018. This treatment, although groundbreaking, is not going to
work for every single PKD patient. Having additional treatment options
to preserve and extend native kidney function is clearly the best
option, particularly because there are far more patients in need of a
transplant than there are available kidneys. Research is the path to
additional treatments that stop or slow the progression of the disease
with the ultimate goal of keeping the kidneys from failing.
The PKD Foundation is the only organization in the U.S. solely
dedicated to finding treatments and a cure for PKD and to improve the
lives of those it affects. We do this through promoting programs of
research, education, advocacy, support and awareness on a national
level, along with direct services to local communities across the
country. We are the largest private funder of PKD research. Since our
founding in 1982, we have invested almost $50 million in basic and
clinical research, nephrology fellowships and scientific meetings with
a simple goal: to discover and deliver treatments and a cure for PKD.
The PKD Foundation appreciates your interest in NIH research
efforts and thanks Congress for increasing funds for the NIH over the
past few years. NIH will devote $21 million for PKD research in fiscal
year 2018. In fiscal year 2013, that figure was $40 million.
Unfortunately, it is notable that PKD receives less funding from the
NIH than other significantly less prevalent genetic diseases. It is
also notable that, unlike non-renal diseases, Medicare pays for
dialysis and care of PKD patients in end stage renal disease (ESRD)
regardless of age. According to a 2015 GAO report, in 2013 Medicare
spent about $11.7 billion on dialysis care for about 376,000 patients,
some of whom had PKD. The cost of this care is significantly greater
than Federal research support.
Although the NIH received nearly a 9 percent budget increase in
fiscal year 2018, research in the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) received just over a 5 percent
increase. Yet, since fiscal year 2013 NIDDK funding for PKD research
has fallen by nearly 50 percent. By having NIDDK invest more in PKD
research, a significant proportion of the PKD population could be
converted from recipients of Medicare into more productive citizens.
The Appropriations Committees have expressed interest in specific
health research areas. In recent years, appropriations bills have
requested NIH to provide Congress with an update for a large number of
listed diseases, conditions or topics, and a description of the latest
efforts ongoing and planned for the following fiscal year.
Unfortunately, PKD was not listed in any of these requests.
PKD patients and advocates have two requests for Congress as it
develops the fiscal year 2019 funding bill for NIH:
--First, provide $2.165 billion for NIDDK and direct that 10 percent
of the additional funds be used for increased PKD research.
--Second, include PKD in the next NIH update list in the final fiscal
year 2019 appropriations bill.

[This statement was submitted by Ms. Alexis Denny, Director of
Governmental Relations, Polycystic Kidney Disease Foundation.]
______

Prepared Statement of the Population Association of America and
Association of Population Centers
Thank you, Chairman Blunt and Ranking Member Murray for this
opportunity to express support for the National Institutes of Health
(NIH), National Center for Health Statistics (NCHS), and Bureau of
Labor Statistics (BLS). These agencies are important to the members of
the Population Association of America (PAA) and Association of
Population Centers (APC) because they provide direct and indirect
support to population scientists and the field of population, or
demographic, research overall. In fiscal year 2019, we urge the
Subcommittee to adopt the following funding recommendations: $39.3
billion for the NIH, including funds provided to the agency through the
21st Century Cures Act for targeted initiatives; $175 million for the
NCHS; and $650 million, for the BLS.
national institutes of health
Demography is the study of populations and how or why they change.
A key component of 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, NIH supports 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
By 2030, there will be 72 million Americans aged 65 and older. To
inform the implications of our rapidly aging population, 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 population aging research.
In fiscal year 2018, the BSR Division expanded its Alzheimer's
disease research portfolio to include the population sciences. Some
primary examples of this activity include enhanced collection of
nationally representative data via the Health and Retirement Study to
measure cognitive function to inform our understanding of national
trends and differences. In addition to enhancing data collection, NIA
developed a dementia care research agenda and added an Alzheimer's
disease research component as part of the Roybal Centers of Translation
Research in Behavioral and Social Sciences of Aging, Resource Centers
for Minority Aging Research, and Demography and Economics of Aging
Centers program. In addition to continuing these activities in fiscal
year 2019, the Division seeks to encourage more research, especially
the population sciences, related to the underlying causes of regional
health disparities, including differences in U.S. adult mortality
rates.
eunice kennedy shriver national institute on child health and
human development
Since 1968, NICHD has supported research on population processes
and change. This research is housed in the Institute's Population
Dynamics Branch, which supports research and research training in
demography, reproductive health, and population health and funds major
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,
and the Panel Study of Income Dynamics Child Development Supplement, an
intergenerational study that yields extensive family data about the
linkages that exist between children, their parents, and grandparents.
In additional to supporting individual research grants and surveys,
NICHD supports the Population Dynamics Centers Research Infrastructure
Program. These highly productive centers, based at U.S. universities
and private research institutions nationwide, have advanced U.S.
science by fostering groundbreaking interdisciplinary research on human
health and development, and increased the scientific pipeline by
nurturing the careers of junior researchers. With additional funding in
fiscal year 2019, the Institute will be able to maintain its strong
commitment to these centers of research excellence as well as the rest
of the Population Dynamics Branch's impressive research portfolio. As
members of the Friends of NICHD, PAA and APC request that NICHD receive
$1.5 billion in fiscal year 2019.
national center for health statistics
NCHS is the Nation's principal health statistics agency, providing
data on the health of the U.S. population. NCHS funds and manages the
National Vital Statistics System (NVSS), which contracts with the
states to collect birth and death certificate information. NCHS also
funds several complex large surveys to help data users understand the
population's health, influences on health, and health outcomes. In the
last year, critical research findings, including the number of deaths
attributable to the opioid epidemic, decreased life expectancy in the
U.S., and the percentage of children affected by head injuries,
including concussions, were informed by NCHS data. NCHS health data are
an essential part of the Nation's statistical and public health
infrastructure.
Since 2011, NCHS has been essentially flat funded, greatly
diminishing the agency's purchasing power. Current base funding remains
below fiscal year 2010 levels, adjusted for inflation, and the agency
does not expect to recover the roughly $25 million in supplemental
Prevention and Public Health Fund dollars it lost in 2013. NCHS also
faces increasing costs on the horizon associated with state and vendor
contracts and other infrastructure challenges related to survey
redesign and systems improvements that will require additional
resources far beyond current levels. Any cuts below the agency's fiscal
year 2018 level, however seemingly minor, would have a demonstrably
negative effect on the agency's programs, survey data, and staff. For
example, if NCHS's budget is reduced below its fiscal year 2018 funding
level, NCHS will need to consider eliminating or radically altering one
of its two seminal surveys: the National Health Interview Survey
(NHIS)--the principal data source for studying demographic,
socioeconomic, and behavioral differences in health and mortality
outcomes since 1957--or the National Health and Nutrition Examination
Survey (NHANES), which has assessed the health and nutritional status
of adults and children in the United States since the early 1960s.
Despite making marginal adjustments to accommodate years of budget
cuts, including reducing sample size and delaying necessary survey
innovations, the agency has stated it cannot responsibly sustain these
surveys if its funding level dips below its fiscal year 2018 level,
$160 million.
As members of the Friends of NCHS, PAA and APC request that NCHS
receive $175 million in fiscal year 2019. NCHS needs this $15 million
increase to make essential investments in the agency, including
restoring survey sample sizes, filling numerous vacant staff positions,
and to pursue technical innovations such as a redesign of NHIS (to
reduce respondent burden and boost response rates), and facilitate
ongoing implementation of electronic death records.
bureau of labor statistics
BLS produces essential economic information for public and private
decisionmaking. Population scientists who study and evaluate labor and
related economic policies use its data extensively.
As members of the Friends of Labor Statistics, PAA and APC are very
grateful for the minor funding increase ($3 million) BLS received in
fiscal year 2018. However, the agency is struggling to overcome years
of insufficient support. Between fiscal year 2009 and fiscal year 2015,
the purchasing power of BLS appropriations decreased every year. Given
the importance and unique nature of BLS data, we urge the Subcommittee
to provide BLS with $650 million in fiscal year 2019. This funding
would allow BLS to support its core programs and surveys and to launch
initiatives, such as overdue efforts to update the Consumer Expenditure
Survey and Occupational Employment survey, that have been postponed due
to budget shortfalls. BLS would also be able to sustain support for its
large-scale surveys, namely the American Time Use Survey and National
Longitudinal Surveys, which are unique sources of data used by
population scientists in academic and applied research settings to
understand how work, unemployment, and retirement influence health and
well-being outcomes across the lifespan.
Thank you for considering our organization's positions on these
agencies under your subcommittee's jurisdiction.

[This statement was submitted by Mary Jo Hoeksema, Director,
Government and Public Affairs, Population Association of America/
Association of Population Centers.]
______

Prepared Statement of Power to Decide
Dear Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee:
We respectfully request the following funding levels for programs
administered by the Office of Adolescent Health and the Office of
Population Affairs within HHS in the fiscal year 2019 LHHS
appropriations bill, as well as language ensuring that these programs
are implemented in the same high quality manner that they have been in
the past.
Specifically, we request: $110 million for the evidence-based Teen
Pregnancy Prevention (TPP) Program and language that ensures
continuation of the evidence-based approach that has been a hallmark of
the program since its inception, and that continues to undergird the
work of the current fiscal year 2015--fiscal year 2019 grantees; $6.8
million under the Public Health Services Act for evaluation of teenage
pregnancy prevention approaches; and $327 million for the Title X
Family Planning Program.
Power to Decide believes that all young people should have the
opportunity to pursue the future they want, realize their full
potential, and follow their intentions. These beliefs guide our work to
ensure that everyone has the power to decide, if, when, and under what
circumstances to get pregnant. Providing a system of support that
enables young people to have this power not only benefits the young
people themselves, but also leads to significant savings in publicly
funded programs. New research from Power to Decide shows that the
public savings associated with declines in teen births amount to more
than $4 billion annually, and that is only factoring in medical and
economic supports during pregnancy and infancy. Moreover, if all teens
were able to able to avoid unplanned pregnancy and childbearing, we
estimate that the U.S. could save an additional $1.9 billion each
year.\1\
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\1\ https://powertodecide.org/what-we-do/information/why-it-
matters/progress-pays.
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Without question, we as a society must support women, prenatal
care, and healthy childbirth. But it's also essential, and cost
effective, to provide evidence-based sex education and high quality,
publicly funded contraceptive care that empower young people to decide
if and when to get pregnant in the first place. All totaled,
researchers estimate a savings of roughly $7 in medical costs for every
$1 spent on contraceptive services.\2\
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\2\ https://powertodecide.org/what-we-do/information/resource-
library/everyone-loves-birth-control.
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We recognize that Congress faces tough budget decisions. In this
context, making modest investments in high quality programs that reduce
unplanned pregnancy makes fiscal sense and can pay great dividends for
individuals and communities.
Teen Pregnancy Prevention (TPP) Program
We request that funding for the TPP Program be restored to $110
million--its original funding level. This competitive grant program is
funded at $101 million in the Consolidated Appropriations Act, 2018. We
also request that language be included that ensures the continuation of
the current evidence-based approach, such as the language included in
the fiscal year 2018 Senate Appropriations Committee bill that passed
on a bipartisan basis in September 2017.
The TPP Program is currently funding 84 competitive grants in a
wide variety of communities and settings across the country, using a
variety of approaches. It is on track to serve 1.2 million youth if
projects are able to continue for 5 years as intended. This program is
making a vital contribution to building a body of knowledge of what
works for whom and under what circumstance to prevent teen pregnancy
through high quality implementation, rigorous impact evaluations
(primarily randomized control trials), innovation, and learning from
results. The first round of TPP Program grants yielded evaluation
results showing 1 in 3 programs changed behavior, far better than what
experts say is typically expected from rigorous evaluations in other
fields.\3\ The TPP Program is a gold-standard example of evidence-based
policymaking--just the type of investment that independent experts and
members of Congress on both sides of the aisle have called for. The
September 2017 unanimously-agreed-to-report from the bipartisan
Commission on Evidence-Based Policymaking established by House Speaker
Paul Ryan and Senator Patty Murray highlighted the TPP Program as an
example of a Federal program developing increasingly rigorous
portfolios of evidence.\4\
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\3\ http://thehill.com/blogs/pundits-blog/the-administration/
343908-trump-team-doesnt-understand-evidence-based-policies.
\4\ https://www.cep.gov/cep-final-report.html.
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Yet HHS sent notices dated July 1, 2017 informing 81 TPP Program
grantees that their 5-year projects will end after year three (July 1,
2017--June 30, 2018)--preceding congressional action on fiscal year
2018 LHHS appropriations (the remaining three grantees received notice
in September). To date, explanations from HHS for these actions have
included numerous false characterizations of the program and the
evaluation results. On April 20, HHS released two new funding
opportunity announcements (FOAs) for the TPP Program that raise
concern. The Administration's implementation shifts away from the
strong focus on rigorous evidence, results, and evaluation that have
been hallmarks of the program since its start, and deviates from the
expectations in the legislative language for replication of rigorously-
evaluated programs. We are pleased that the final fiscal year 2018
omnibus appropriations bill continued funding for the TPP Program, and
we urge you to further continue this funding and to add language
protecting the structure and implementation of the program in fiscal
year 2019 appropriations.
Evaluation of Teenage Pregnancy Prevention Approaches
As part of the growing bipartisan commitment to evidence-based
policymaking there's a recognition of supporting high quality
evaluation within Federal agencies. Congress has historically provided
a modest amount of funding to evaluate teen pregnancy prevention
approaches, including longitudinal evaluations. This funding, in
conjunction with the TPP Program, has contributed to deepening our
knowledge of what works to reduce teen pregnancy. This smart investment
should be continued in fiscal year 2019.
Title X Family Planning Program
We request $327 million in funding for the Title X program for
fiscal year 2019 and language that ensures the integrity of the
program. For more than four decades, Title X has played a critical role
in preventing unplanned pregnancy by offering low-income and uninsured
individuals access to high-quality contraceptive services, preventive
screenings, and health education and information. The majority (66
percent) of patients served by Title X have income at or below 100
percent of the Federal poverty level (FPL) and receive services free of
charge. Another 22 percent of patients have incomes between 101 percent
and 250 percent FPL and receive services on a sliding fee scale. In
2015, the contraceptive care delivered by Title X--funded providers
helped women avoid 822,000 unintended pregnancies, which would have
resulted in 387,000 unplanned births and 278,000 abortions.\5\
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\5\ www.guttmacher.org/gpr/2017/01/why-we-cannot-afford-undercut-
title-x-national-family-planning-program.
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Despite the significant return on investment, the current $286.5
million funding level in the Consolidated Appropriations Act, 2018 is
$31 million lower than the fiscal year 2010 level, which was already
inadequate to meet the need. Reduced funding over the last several
years has resulted in fewer patients served and more clinic closings.
For example, in 2016, Title X clinics served 4 million women and men,
down 23 percent or 1.2 million patients from the 5.2 million patients
served in 2010. The need for publicly funded contraception is already
far greater than the supply. Any cuts to Title X only increase this
need. Research from Power to Decide shows that more than 19 million
women in need of publicly funded contraception live in contraceptive
deserts, where they do not have reasonable access to a public clinic
that offers the full range of methods in their county.\6\
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\6\ https://powertodecide.org/what-we-do/access/access-birth-
control.
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In 2017, HHS shortened Title X grants so that all grants expire in
2018, and the Department recently issued a new FOA. The FOA raises
concerns that the Administration's shift in program priorities towards
less effective methods could result in funding going to providers that
offer a limited range of contraceptive methods, and away from the
providers who are able to offer high quality contraceptive care.
The TPP Program and the Title X Family Planning Program enjoy broad
bipartisan support. Eighty-five percent of adults support continued
funding for the TPP Program, and 75 percent favor continuing the Title
X program. These programs make common sense. Helping to ensure that all
young people have the power to decide if, when, and under what
circumstances to get pregnant will improve opportunities for them and
for the country. We appreciate the budget constraints facing the
Committee and respectfully urge you to support this request. If you
have questions or need additional information, please contact me at
[email protected].
Sincerely.

[This statement was submitted by Rachel Fey, Director, Public
Policy.]
______

Prepared Statement of Prevent Blindness
Prevent Blindness appreciates the opportunity to submit testimony
to the Subcommittee and respectfully requests the following allocation
and support in fiscal year 2019 to promote eye health and prevent eye
disease and vision loss in the United States:
--Provide at least $3,300,000 to expand vision and eye health efforts
at the Vision Health Initiative of the Centers for Disease
Control and Prevention (CDC);
--Provide at least $3,500,000 to the Health Resources and Services
Administration's (HRSA) Maternal and Child Health Bureau (MCHB)
to establish a children's vision and eye health programs in ten
States, and a technical assistance coordinating center;
--Provide at least $4,000,000 for the Glaucoma Project at CDC to
allow the program to continue to improve glaucoma screening,
referral, and treatment by reaching populations that experience
the greatest disparity in access to glaucoma care.
In September 2016, the National Academies of Sciences, Engineering,
and Medicine (NASEM) issued its report, ``Making Eye Health a
Population Health Imperative: Vision for Tomorrow,'' outlining
recommendations to address vision and eye health through Federal
investments, coordination with States and local governments and other
stakeholders, and actions to integrate vision into current public
health interventions. NASEM recognizes that, for too long, vision and
eye health have not received the attention and investment they warrant,
especially given their importance to public health. With an aging
population and rise in chronic diseases, now is the time to invest in
our collective eye health.
Good vision is an integral component to health and economic well-
being. Vision affects nearly all activities of daily living and impacts
an individual's physical, emotional, social, and financial status. Loss
of vision has a devastating impact on individuals and their families.
Vision-related conditions affect people across the lifespan from
refractive errors to chronic disease that warrants lifestyle changes,
disease management, and adaption to treatment and rehabilitation. 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, and is a leading cause of impaired health in childhood.
Recent research showed that the economic burden of vision loss and
eye disorders is $145 billion each year, and could rise to as much as
$717 billion by the year 2050 if we don't increase attention to vision
and eye health. Alarmingly, while half of all incidents of vision
impairment and blindness can be prevented through education, early
detection, and treatment, the Vision Health Initiative at the Centers
for Disease Control and Prevention reports that, due to a rapidly aging
population and epidemic of diabetes and chronic disease, ``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\
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\1\ ``The Burden of Vision Loss'' Vision Health Initiative, Centers
for Disease Control and Prevention, 2009 (Referenced May 31, 2018).
https://www.cdc.gov/visionhealth/basic_information/
vision_loss_burden.htm.
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Prevent Blindness--the Nation's leading non-profit, voluntary
organization committed to preventing blindness and preserving sight--
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.\2\ To curtail the increasing incidence of
vision loss in America, and its accompanying economic burden to the
patient and our country, Prevent Blindness is requesting sustained and
meaningful Federal investment in programs that promote eye health and
prevent eye disease, vision loss, and blindness.
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\2\ For more information about Prevent Blindness and our Federal
government relations and public policy efforts, please visit
www.preventblindness.org.
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We thank the Subcommittee members for working to ensure the Vision
Health Initiative and Glaucoma Project at the CDC received additional
investments totaling nearly $1.2 million in the fiscal year 2018
omnibus legislation. These increases are a critical first step to
addressing the burden of vision impairment. However, there is much more
to be done to understand the burden of vision impairment, eye diseases,
and vision loss. Therefore, we strongly urge Members of the
Subcommittee to increase the Vision Health Initiative's funding level
to $3.3 million and maintain the fiscal year 2018 level of $4 million
for the Glaucoma Project at the CDC for fiscal year 2019. Vision loss
is often preventable; however, without the necessary funding to better
understand eye health conditions, expand access to care, develop
treatment options, and expand public health systems and infrastructure
to disseminate good science and prevention strategies, millions of
Americans face the loss of healthy eyesight and a potential decline of
their independence, physical, social, and emotional wellbeing, and
their economic livelihoods as a result of vision impairment and eye
disease.
Vision and Eye Health at the CDC: Helping to Save Sight and Save Money
The CDC serves a critical role in promoting vision and eye health.
Since 2003, the CDC and Prevent Blindness have collaborated, along with
other partners, to create a more effective public health approach to
vision loss prevention and eye health promotion. CDC has also been able
to explore a few model programs to promote early detection of glaucoma.
However, severely constrained financial resources have limited the
CDC's ability to take the work of the Vision Health Initiative (VHI) to
the next level.
The NASEM report acknowledges the essential role of the CDC in
addressing the challenges that exist for vision and eye health. This
report also calls on the U.S. Department of Health and Human Services
to prioritize and expand CDC's vision and eye health program, in
partnership with State-based chronic disease programs and other
clinical and non-clinical stakeholders, to:
--Develop, implement, and evaluate evidence-based public health
programs for the prevention of conditions leading to visual
impairment;
--Develop and evaluate programs and models that facilitate access to,
and utilization of, patient-centered vision care and
rehabilitation services, including integration and coordination
among healthcare providers;
--Develop and evaluate initiatives to improve environments and
socioeconomic conditions that underpin good eye and vision
health in communities and reduce eye health disparities;
--Develop a coordinate public health surveillance system to monitor
eye and vision health in the U.S.
The requested fiscal year 2019 resources will allow the CDC to
apply previous vision and eye health research findings to develop
effective prevention and early interventions, with an initial focus on
early detection of diabetic retinopathy. These investments will
additionally provide for much-needed and overdue surveillance work
necessary to understand the range and depth of vision impairment and
eye disease, and implement targeted public health interventions that
allow for Americans to receive and understand the importance of caring
for their vision and eyes.
Investing in the Vision of Our Nation's Most Valuable Resource:
Children
In addition to acknowledging the essential, yet underfunded, role
of the Vision Health Initiative at the CDC, the NASEM report committee
acknowledged the HRSA-funded quality improvement work being led by the
National Center for Children's Vision and Eye Health as a leading
example of the importance of continuous quality improvement among
diverse stakeholders in advancing eye health in the U.S. Early
detection and intervention for vision problems are incorporated into
national goals and healthcare standards. For example, Healthy People
2020 includes the following vision objectives:
--``Increase the proportion of preschool children aged 5 years and
under who receive vision screening'' (Objective V-1);
--``Reduce blindness and visual impairment in children and
adolescents aged 17 years and under'' (Objective V-20); and
--``Increase the use of personal protective eyewear in recreational
activities and hazardous situations around the home among
children and adolescents aged 6 to 17 years'' (Objective V-
6.1).
While the risk of eye disease increases after the age of 40, eye
and vision problems in children are of an equal and time-sensitive
concern. If left undiagnosed and untreated, eye diseases in children
can lead to permanent and irreversible visual loss and/or cause
problems socially, academically, and developmentally. Studies have
demonstrated that optical correction of significant refractive error
may be related to improved child development and school
readiness.\3,4,5\ yet only 52 percent of children ages three through
five are screened for vision problems,\6\ and only one-third of all
children receive eye care services before the age of six.\7\ But early
detection can help prevent vision loss and blindness as many serious
ocular conditions in children are treatable if identified at an early
stage.
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\3\ Ibironke JO, F. D. (2011). Child Development and Refractive
Errors in Preschool Children. Optometry and Vision Science, 252-8.
\4\ Roch-Levecq AC, B. B. (2008). Ametropia, preschoolers'
cognitive abilities, and effects of spectacle correction. Arch
Ophthalmol, 187-98.
\5\ Atkinson J, A. S. (2002). Infant vision screening predicts
failures on motor and cognitive tests up to school age. Strabismus,
187-98.
\6\ O'Connor, K. (2012). Overview of Health Cre Access, Use, Unmet
Needs and Key System Performance Measures for CSHCN by Vision Status.
Children's Vision and Eye Health Federal Intra-Agency Task Force
Meeting. Washington D.C.
\7\ ``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, Prevent Blindness established the National Center for
Children's Vision and Eye Health (the Center). The Center is a national
vision health collaborative effort aimed at developing the public
health infrastructure necessary to address issues surrounding
children's vision screening with funding support from a HRSA-MCHB grant
opportunity. Through their work, the Center has established a National
Advisory Committee to provide recommendations toward national
guidelines for quality improvement strategies, vision screening, and
developing a continuum of children's vision and eye health. 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 focused on children ages birth to 6
years old;
--Advance State-based performance improvement systems and screening
guidelines;
--Promote family education and engagement in their child's vision
health; and
--Provide technical assistance to States in the implementation of
strategies for vision screening, establishment of quality
improvement measures, and promotion of State-to-State sharing
of promising practices.
The National Survey of Children's Health for 2016-2017, which
included questions pertaining to children's vision screening, revealed
important information on the rate that children's vision is being
conducted by age, site, State, socioeconomic status, child health
status, and other barriers to eye care as well as important trends to
consider in terms of the eye care workforce, access to eye care
providers in community health centers, and disparities in access to eye
care between rural and urban communities, income levels, and other
factors. While there are some existing regulations related to the
vision of school aged children in 2/3 of the States, only 34 percent of
U.S. States address the vision health of children younger than 5 years
old. Currently, there is a lack of data on the proportion of children
screened, and there is no effective system to ensure that children who
fail screenings ultimately access appropriate comprehensive eye
examinations and follow-up care.
To address this issue, our request for a $3.5 million program would
establish within MCHB-HRSA a 10 State grant system for States and local
governments needing technical assistance with setting up children's
vision screenings and eye health programs as well as coordinate
programmatic efforts across Federal agencies. In the first year of this
program the MCHB would award up to 10 competitive grants to States and
territories and fund technical assistance, allowing for the opportunity
to identify and develop resources as a part of vision health outreach
and awareness. We believe that the appropriation would integrate vision
into a holistic approach for children's health given the essential role
that healthy vision plays in school readiness and learning as well as
other developmental areas. We ask for the Subcommittee's support of our
request.
conclusion
On behalf of Prevent Blindness, 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 2019 funding for the CDC's Vision Health Initiative and Glaucoma
Project, and the MCHB at HRSA in support of the work of the National
Center for Children's Vision and Eye Health. Please know that Prevent
Blindness stands ready to work with the Subcommittee and other Members
of Congress to advance policies that will prevent blindness and
preserve sight.

[This statement was submitted by Jeff Todd, President & CEO,
Prevent Blindness.]
______

Prepared Statement of Prevent Child Abuse America
The future of America depends on our next generation. Together, we
can strengthen American families and help every child live the American
dream. To support the next generation of entrepreneurs, innovators and
creators, we urge Congress to increase funding for key programs in
fiscal year 2019 to help ensure we reduce child abuse and neglect,
promote healthy child development, improve parental education and
increase job prospects for all families. These programs lead families
to self-sufficiency and away from government services and are critical
to our success as a Nation. Prevent Child Abuse America humbly
recommends the following for the fiscal year 2019 Labor, Health and
Human Services, Education and Related Services appropriations:
CAPTA: Fund the Child Abuse Prevention and Treatment Act (CAPTA) at
$200
Million
Prevent Child Abuse America appreciates the $60 million increase
provided in fiscal year 2018 to help States improve their response to
infants and families affected by substance use disorder. We urge
Congress to maintain this increase in fiscal year 2019 and increase
funding so that States can place greater emphasis on prevention-related
activities.
CAPTA is currently funded at less than half its authorization
level. By fully funding CAPTA at $200 million, Congress can help
strengthen the network of support in States focused on prevention,
investigation and treatment activities for families.
CCDBG: Fund the Child Care Development Block Grant (CCDBG) at $5.8
Billion
The 2018 bipartisan agreement to expand the Child Care Development
Block Grant (CCDBG) by $2.4 billion will create new and expanded
opportunities for States to fully implement the 2014 reauthorization of
the CCDBG Act. We actively support what is stated in the 2018
Consolidated Appropriations Act Agreement: ``This funding will help
improve the quality of child care programs, including increasing
provider rates and ensuring health and safety standards are met; and
expanding working families' access to quality, affordable child care.''
We believe that the availability of subsidized child care, as
provided to eligible families via CCDBG, is associated with reduced
maltreatment of children. These services improve parental education and
job prospects, increase upward mobility and enable families to become
self-sufficient.
21st Century Cures Act
We supported the passage of the 21st Century Cures Act (Public Law
114-255) and are pleased Congress included funding in fiscal year 2018
for all major programs authorized under the law. We urge Congress to
press forward and maintain this funding in fiscal year 2019.
Infant and Early Childhood Mental Health. We encourage continued
funding at $5 million to provide grants to develop, maintain or enhance
infant and early childhood mental health promotion, intervention, and
treatment programs. Children from birth to age 12 who are at risk or
have been diagnosed with a mental illness (including a serious
emotional disturbance) will be eligible for services. Services can be
provided by eligible entities with specialized training and experience
in infant and early childhood mental health assessment, diagnosis and
treatment.
Screening and Treatment for Maternal Depression. We urge continued
funding at $5 million to provide grants to States to establish,
improve, or maintain programs to train professionals to screen, assess
and treat for maternal depression in women who are pregnant or who have
given birth within the preceding 12 months. Depression can lead to
negative effects on cognitive development, social-emotional development
and children's behavior.
CDC: Fund the Centers for Disease Control and Prevention's Essentials
for
Childhood Framework
We encourage ongoing funding for the Centers for Disease Control
and Prevention's Essentials for Childhood Framework. These funds
support the implementation of statewide comprehensive strategies and
approaches designed to reduce adverse childhood experiences, morbidity,
mortality, and related health disparities associated with childhood
abuse and neglect.
SSBG: Fund the Social Services Block Grant (SSBG) at $1.7 Billion
We support current funding for the SSBG so that States can provide
essential social services that help achieve a myriad of goals to reduce
dependency, promote self-sufficiency and protect children from abuse,
neglect and exploitation.
Science has proven that child abuse and neglect during a child's
first 5 years of life can limit brain development and decrease the size
and weight of an individual's brain. Child abuse and neglect have
profound and far-reaching effects that impact a child's social,
emotional and cognitive development. Research is clear, evidenced-based
prevention programs reduce the likelihood of costly ailments to the
individual and to society, including mental illness, criminal justice,
child welfare, substance abuse and addiction, and the perpetuation of
abuse and neglect. Prevention services strengthen families and give
families the tools they need to succeed and thrive.
Thank you for your consideration. If Prevent Child Abuse America
can assist you in any way as you complete the fiscal year 2019
appropriations process, please do not hesitate to contact me or our
Senior Director of Public Policy at [email protected].
Sincerely.

[This statement was submitted by Dan Duffy, President & CEO,
Prevent Child Abuse America.]
______

Prepared Statement of the Pulmonary Hypertension Association
the associations's fiscal year 2019 l-hhs appropriations
recommendations
_______________________________________________________________________

--$8.56 billion in program funding for the Health Resources and
Services Administration (HRSA).
--$8 billion in program funding for the Centers for Disease Control
and Prevention (CDC)
--$750,000 for a pulmonary hypertension awareness and early
diagnosis campaign at CDC.
--At least $39.3 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increases for NIH's National Heart, Lung,
and Blood Institute (NHLBI); the National Institute of
Child Health and Human Development (NICHD), and the
National Center for Advancing Translational Sciences
(NCATS).
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the pulmonary hypertension (PH) community as you work to
craft the fiscal year 2019 L-HHS Appropriations bill.
about pulmonary hypertension
Pulmonary hypertension (PH) is a disabling and often fatal
condition characterized by high blood pressure in the lungs. The World
Health Organization (WHO) has classified PH into five groups. Treatment
and prognosis vary depending on the type of PH. In WHO Group 1 PH,
pulmonary arterial hypertension, the arteries in the lungs become
narrow and stiff causing the heart to work harder to handle the amount
of blood that must be pumped through the lungs. The resulting increase
in pressure strains the right side of the heart, causing it to enlarge
and ultimately fail. Fourteen targeted treatment options are available
to help patients manage their disease and feel better day to day but
the common symptoms of the disease--breathlessness and fatigue--cause
it to be frequently misdiagnosed as asthma or other conditions. Even
with the more modern targeted therapies, life expectancy with PAH is
thought to be 7-9 years on average. While PAH is rare--15 to 50 cases
per million--other types of PH are much more common. PH associated with
left heart disease (WHO Group 2) and lung disease (WHO Group 3) impact
significantly more individuals but these forms require additional
research to identify the role for targeted therapies.
about pha
Headquartered in Silver Spring, Md., the Pulmonary Hypertension
Association (PHA) is the country's leading PH organization. PHA's
mission is to extend and improve the lives of those affected by PH. PHA
achieves this by connecting and working together with the entire PH
community of patients, families, healthcare professionals and
researchers. The organization supports more than 200 patient support
groups; a robust national continuing medical education program; a PH
clinical program accreditation initiative; and a national observational
patient registry.
health resources and services administration
Due to the serious and life-threatening nature of PH, it is common
for patients to face drastic health interventions, including heart-lung
transplantation. To ensure HRSA can continue to make improvements in
donor lists and donor-matching please provide HRSA with $8.56 billion
in discretionary budget authority in fiscal year 2019.
centers for disease control and prevention
Please provide $750,000 for a pulmonary hypertension program at
CDC. While PH remains incurable, investment in medical research and
sustained scientific progress in this area has led to fourteen Food and
Drug Administration-approved targeted treatment options for two forms
of the disease. It currently takes an average of two and a half years
to receive a diagnosis and three quarters of patients have severe PH
when they are finally diagnosed. Without treatment, historical studies
have shown a mean survival time of 2.8 years after diagnosis for
pulmonary arterial hypertension (PAH). Patients with advanced PH cannot
benefit as greatly from available therapies and often face dramatic and
costly medical interventions, including 24-hour IV infused medication,
increased risk for hospitalization and in some cases heart-lung
transplantation. Considering the availability of effective therapies
for early-stage PH, a CDC program focusing on education, awareness, and
epidemiology activities that promote early and accurate diagnosis and
treatment of PH would not only save countless lives but save the
American healthcare system from spending on avoidable medical outcomes.
national institutes of health
Please provide NIH with meaningful increases--including at least
$39.3 billion in program funding in fiscal year 2019--to facilitate
expansion of the PH research portfolio so we can continue to improve
diagnosis and treatment. NHLBI and PHA have partnered on a
groundbreaking clinical study, the Redefining Pulmonary Hypertension
through Pulmonary Vascular Disease Phenomics (PVDOMICS) program (RFA-
HL-14-027 and RFA-HL-14-030). By collecting information from one
thousand participants with various types of PH, and 500 participants
without or at risk for PH, PVDOMICS hopes to find new similarities and
differences between the current WHO classifications of PH, which could
be a major step in learning about the disease and advancing patient
care. This research is intended to lead to identification of both
endophenotypes of lung vascular disease and biomarkers of disease that
may be useful for early diagnosis or for assessment of interventions to
prevent or treat PH.
proper health coverage and access
The PH community is concerned that the Centers for Medicare and
Medicaid Services (CMS) is allowing insurance payers to refuse to
accept charitable copay and premium assistance on behalf of patients
with complex, chronic and life-threatening conditions like PH. Because
of breakthroughs in research, PH patients are able to utilize life-
sustaining treatments that allow them to manage this potentially fatal
condition and lead relatively normal lives. When patients are denied
access to financial assistance they are forced to choose between
necessities, between dramatically shortening their lives by giving up
medication in order to afford housing and food or continuing medication
while starting their families on the road to bankruptcy. We are aware
of the Subcommittee's continued requests for an explanation of this
practice targeting rare disease patients. We ask that this Subcommittee
once again ask CMS to explain this decisions and also encourage them to
fix this problem that is greatly affecting the rare disease community.
patient perspectives
Before developing pulmonary hypertension, Doug was an architect
specializing in historic preservation. Being an architect was the only
thing he had ever wanted to do ``when he grew up.'' Doug spent 2 years
seeking an accurate diagnosis for his shortness of breath. During that
time, he was misdiagnosed with depression, sleep apnea, altitude
sickness and asthma. Ultimately Doug was diagnosed and treated, however
he had to give up his career due to his PH.
Edith is a 71-year-old Medicare recipient who was diagnosed with
pulmonary hypertension about 5 years ago. Edith says, ``If I didn't
have the medication I wouldn't be around. I would have passed away. And
I don't want to do that because I have great grandchildren and I want
to see them grow up.'' Edith's husband adds, ``without her medications
she cannot breathe. Without these drugs I would lose my wife in a
day.''
Aine's parents heard over and over that there was nothing wrong
with their daughter. When they relayed her shortness of breath with
exertion to physicians they were ignored or told she was just anxious.
Aine was 8 years-old when she died.
Thank you again for your consideration of the PH community's
priorities as you develop the fiscal year 2019 L-HHS Appropriations
bill.

[This statement was submitted by Mr. Brad A. Wong, President and
CEO,
Pulmonary Hypertension Association.]
______

Prepared Statement of Rebuilding America's Middle Class
Dear Chairman Blunt and Ranking Member Murray:
On behalf of Rebuilding America's Middle Class (RAMC), a coalition
of State and individual community college systems from across the
Nation--representing over 120 colleges and 1.5 million students, I am
providing written comments on the fiscal year 2019 Appropriations Bill.
We are specifically writing in regards to the $22.4 billion Pell Grant
program, $1.1 billion for Career Technical Education (CTE) State
Grants, the elimination of the Strengthening Institutions Program (SIP)
within the Department of Education and $200 million for the
Apprenticeship Program within the Department of Labor's budget.
Community colleges have an unparalleled commitment to
accessibility, which encourages traditionally underrepresented
audiences to pursue a college degree. We serve 45 percent of all first-
time freshmen, 40 percent of our students are the first in their family
to attend college, and a significant proportion of our Nation's
minority undergraduates attend community colleges, including 42 percent
of all African American undergraduates, nearly half of all Hispanic
undergraduates, and 56 percent of Native American undergraduates.
Community colleges have historically existed to make higher education
accessible for everyone and match our employers' need for a large,
diverse workforce. Accordingly, we believe that the Federal Government
needs to make sure that financial aid policies work for nontraditional
students who work and have families and are increasingly turning to
community colleges for access to higher education.
Increase the Maximum Pell Grant.
RAMC members believe that the Pell Grant program is the key to
ensuring low-income students can afford college. Community colleges are
the most affordable of the many options facing students; yet, even at
our institutions, low-income community college students overwhelmingly
rely on this critical Federal student aid program. For these reasons we
appreciate the $175 increase in the maximum Pell grant as part of the
fiscal year 2018 appropriations bill. While the fiscal year 2019
request sets the maximum Pell Grant award at $5,920 for the 2019--20
award year, we believe that the maximum Pell Grant should be increased.
Support Career Technical Education State Grants.
The fiscal year 2019 request proposes to level fund CTE State
Grants at $1.1 billion level funded to the fiscal year 2017 level. In
the 2018 Omnibus appropriations bill RAMC very much appreciated the $75
million increase to this program. RAMC believes that there is a need to
prioritize career and technical education certificates and degrees, and
provide them the same value as baccalaureate and advanced degrees.
Accordingly, RAMC believes that Congress should again provide an
increase in funding to the CTE grant program as part of the fiscal year
2019 appropriations process.
Do Not Eliminate the Title III Strengthening Institutions Program.
The fiscal year 2019 budget request includes no funding for the
Strengthening Institutions Program and asserts that the program is
duplicative of other program funding for institutional support
activities. RAMC utilizes SIP funds to increase student retention,
provide enhanced faculty professional development and expand access to
high-demand STEM programs through the conversion of high-demand
courses. RAMC believes that the consolidation of SIP would be
detrimental to providing much needed student services and urges the
Subcommittee to consider an increase for this program in fiscal year
2019.
Focus Workforce Innovation and Opportunity Act (WIOA) Funding on
Training
The goal of WIOA is to provide more Americans with the skills,
knowledge, and training they need for the jobs of today and tomorrow.
Unfortunately, too little funding provided through WIOA programs makes
its way down to actually paying for actual job training. Accordingly,
RAMC requests that the Subcommittee consider requiring that the
Department of Labor to mandate a minimum percentage of WIOA funding be
used to pay for actual job training services versus administrative
overhead. Such a provision would ensure that funding benefits those who
need additional skills and training to acquire or upgrade their
employment.
Support Apprenticeships and Innovative Partnerships.
As community college leaders, RAMC members are at the forefront of
working to expand apprenticeships and create opportunities for students
to earn while they learn. As such we applaud the fiscal year 2019
proposal that includes $200 million for the Apprenticeship Program, an
increase of $5 million above the fiscal year 2017 funding level. In
addition, we very much appreciate the recognition of the Subcommittee
for this program by increasing funding in fiscal year 2018 by $50
million. For fiscal year 2019 we would urge the Subcommittee to
consider another increase for this program.
Thank you for your consideration of our comments. RAMC members
stand ready and willing to help you in any way we can as the Fiscal
Year 2019 Appropriations process moves forward.
Sincerely.

[This statement was submitted Joe May, Board Chair, Rebuilding
America's Middle Class.]
______

Prepared Statement of the Refugee Council USA
On behalf of the twenty-five member organizations of Refugee
Council USA (RCUSA) \1\ dedicated to refugee protection, assistance and
welcome, and representing the interests of hundreds of thousands of
refugees, their families, and the millions of volunteers and community
members across the country who support refugee resettlement, I thank
you for the opportunity to submit these funding recommendations for
fiscal year 2019. RCUSA recommends fiscal year 2019 funding levels of
$2.056 billion for the Department of Health and Human Services' Refugee
and Entrant Assistance (REA) account.
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\1\ A list of RCUSA member organizations can be viewed at
RCUSA.org.
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The REA account funds the Office of Refugee Resettlement (ORR)
within the Administration of Children and Families. ORR funding
provides critical Federal investments in the States and local
communities that welcome refugees, and is a crucial component of
fostering refugee integration and economic contributions. In addition
to new refugee arrivals, ORR funding provides essential services to
refugees who arrived in recent years, unaccompanied refugee minors,
asylees, Cuban and Haitian entrants, Special Immigrants Visa (SIV)
holders from Afghanistan and Iraq who served the U.S. mission in those
countries, victims of human trafficking, survivors of torture, and
unaccompanied children. Through ORR programs and associated public-
private partnerships, in fiscal year 2019 ORR anticipates serving
119,000 individuals, including 45,000 refugees.\2\
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\2\ The fiscal year 2019 refugee admissions ceiling has not been
set. This figure also does not include unaccompanied children,
predominantly from Central America, in ORR's care.
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RCUSA supports a continuance of the funding provided in the fiscal
year 2018 omnibus appropriations bill with three exceptions. RCUSA
recommends an increase for the Transitional Medical Assistance (TAMS)
program; domestic and foreign-born trafficking victim services; and,
torture survivor assistance. TAMS funds critical initial assistance to
refugees and other new arrivals; programs for vulnerable unaccompanied
refugee children; and the highly effective Matching-Grant program,
which leverages public funds with private donations, empowering
refugees to secure employment within 6 months. The trafficking program
has seen a 962 percent increase in identified victims in need of
trauma-informed case management services since 2002,\3\ and funding has
not kept pace with this increase, jeopardizing the ability of the
program to enroll all identified new clients. Finally, torture
survivors currently face long wait lists for services due to chronic,
systemic underfunding.
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\3\ This is based on the 2002 ORR report to Congress and the 2016
TIP report.
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The U.S. is one of roughly 37 resettlement countries. The U.S.
Refugee Admissions Program (USRAP) process begins with rigorous
screening to determine that applicants qualify for refugee status and
are not a security risk. The U.S. admits a small percentage of the
world's refugees, often the most vulnerable, for resettlement
(including unaccompanied refugee minors) through the USRAP. Refugees
arriving through the USRAP, along with Iraqi and Afghan SIV recipients,
are placed with one of nine voluntary nonprofit resettlement agencies
that have signed a Cooperative Agreement with the State Department and
have local affiliates in over 200 sites in communities around the
country. Six of the nine voluntary agency networks are faith-based, and
harness the energy of many faith communities to help welcome newcomers
to their new communities. These community organizations ensure that a
core group of services are provided during the first 30-90 days after a
refugee's arrival, including the provision of food, housing, clothing,
employment services, follow-up medical care, and other necessary
services. After this initial period, ORR funds integration services
through both the States and community partners around the country.
Once refugees arrive to the U.S., they are supported to become
oriented to the community, learn English, enroll their children in
school, and find employment. With this crucial support, they often are
not only able to support themselves and their families but also become
contributors to their new communities, integrating with and bringing
innovation to our neighborhoods. The following highlights critical
programs within the REA account, but does not include all program
activities:
transitional & medical services
Matching Grant Program.--The Matching Grant Program, a public-
private partnership, is ORR's most successful program to help refugees
achieve early self-sufficiency. It empowers refugees and other eligible
individuals to become self-sufficient within 6 months without needing
to access Federal or State assistance programs. The program leverages
public funds with private donations at a 2:1 ratio, with
nongovernmental agencies working hand-in-hand with local communities to
match Federal Government contributions with private resources.
Refugee Cash and Medical Assistance (CMA).--CMA provides time-
limited (eight months maximum) services including cash assistance,
coverage for health expenses, and medical screening. ORR reimburses
States for 100 percent of services provided to refugees and other
eligible persons, as well as associated administrative costs.
Unaccompanied Refugee Minors.--Unaccompanied refugee minors (URM)
are among the most vulnerable of refugees, and the U.S. is the only
country that permanently resettles them. URM have been lost or
separated from their parents and families and have often suffered
greatly not only in their home country but also in countries near their
homelands where they have sought refuge. This is a small but crucial
U.S. program to protect the most vulnerable of these at-risk children
and provide them a new life in the U.S.
Refugee Support Services (RSS).--RCUSA is concerned with the
proposed 22 percent cuts to the programs funded by RSS, which promote
refugee employment and fiscal contributions to U.S. communities; these
cuts will result in greater burdens placed on States and localities to
fund benefits rather than proven employment services.
Refugee Social Services.--RSS supports initial employability
services and other integration services that address initial barriers
to employment. It is provided to States and non-profit organizations
based on formula pertaining to anticipated refugee and other arrivals
and competitive grants. Additionally, school Impact funding, provided
through a formula in the RSS program, supports impacted school
districts with the funds necessary for activities, like English as a
Second Language instruction, that will lead to the effective
integration and education of vulnerable children.
Targeted Assistance Program (TAG).--TAG is a discretionary grant
program that provides support to States with particularly high refugee
arrivals, including via secondary migration, and services to refugees
requiring longer term employment support. It also provides specialized
services to meeting the unique needs of certain groups, such as youth
programming and career development for higher skilled refugees looking
to recertify in their field.
Refugee Health Promotion (RHP).--The Administration's fiscal year
2019 budget again proposes eliminating this vital program, which helps
refugees navigate the U.S. healthcare system. It is awarded
competitively and helps fund State Refugee Health Coordinators, provide
language access at Federal healthcare centers, and supports mental
health screening of refugees, among other things. RCUSA strongly
opposes the proposed elimination of RHP.
Survivors of Trafficking.--Since the passage of the Trafficking
Victims Protection Act in 2000, victims of human trafficking have
received case management services through HHS's partnership with NGO
providers, including assistance obtaining and referrals to medical and
psychological treatment, housing, educational programs, life skills
development, legal services, and other assistance. Funding is also
utilized to promote public awareness, training, and coalition building
to raise awareness about human trafficking among law enforcement,
social services, medical staff, and other potential first responders,
in addition to other to other faith-based and community groups. These
grants are crucial to providing victims, including children,
integrative aid and services once they have been identified as a victim
of trafficking. Increased funding to $20 million for each domestic and
foreign-born victim is requested to adequately serve trafficking
survivors. This funding is critical due to the increases in victim
identification efforts. In fact, there has been a 843 percent increase
in the number of foreign-born individuals served by the program from
2003 to fiscal year 2016.
Survivors of Torture.--The Torture Victims Relief Act authorizes
funding for domestic programs that address the long-term impacts of
torture on survivors and their families. Effective rehabilitation
programs address a survivor's physical, psychological, legal and social
needs to reduce their suffering and restore functioning as quickly as
possible. RCUSA's proposed $16 million for torture survivor assistance
reflects that many treatment programs have long wait lists, and that-at
current funding levels-demand will continue to exceed availability as
programs serve not only refugees, but also (and in some cases
predominantly) asylees and asylum seekers. An estimated 9,000 survivors
and their families from 125 countries benefited from these services in
fiscal year 2017.
Unaccompanied Children (UCs).--In fiscal year 2017, 40,894 children
were referred to the custody and care of the Office of Refugee
Resettlement (ORR). ORR's provides children in its care with food,
shelter, and clothing as well as educational, medical, mental health,
and case management services. For a limited number of children, ORR
provides family reunification services by social services providers;
specifically, ``home studies'' to help ensure children are released
into safe placements and ``post-release services'' to facilitate family
and community integration after reunification. Post-release social
services by providers are an important means of assuring the continued
well-being and adjustment of the children and preventing such dangers
as human trafficking. Post-release services also help families to
understand the child's legal obligations as well as provide critical
protection and support to the families themselves as the children are
integrated into their new communities. These practices not only promote
child safety, but they can help reduce the need for involvement with
the public child welfare system post-release. RCUSA supports the fiscal
year 2018 funding level for these programs that promote successful
family reunification and stability, which serve the best interest of
the children. RCUSA does not support an expansion of detention,
including through use of large-scale institutional facilities, or
efforts to support forced family separation.
Our Nation's historic commitment to refugees through domestic
resettlement provides lifesaving support and protection to the world's
most vulnerable. Our Nation's historic commitment to displaced
populations helps us build strategic alliances and stabilize those
regions most affected by the largest displacement crisis in global
history. This helps keep America safe. Thank you for considering our
funding recommendations for fiscal year 2019.

Fiscal Year 2019 Office of Refugee Resettlement Funding Needs for Pthe Refugee and Entrant Assistance (REA)
Account
----------------------------------------------------------------------------------------------------------------
Fiscal Year 2019
Fiscal Year 2018 -------------------------------------
Program Areas Enacted Funding President's
Request RCUSA Request
----------------------------------------------------------------------------------------------------------------
Transitional & Medical Assistance (TAMS)............... $320,000,000 $354,000,000 $490,000,000
Refugee Social Services................................ \4\ $207,201,000 \5\ $161,000,000 $155,000,000
Targeted Assistance.................................... $47,601,000
Refugee Health Promotion............................... $0 $4,600,000
--------------------------------------------------------
Subtotal (Resettlement Services)..................... $527,201,000 $515,000,000 $697,201,000

Foreign-Born Trafficking Victims....................... $17,000,000 $18,755,000 \6\ $20,000,000
Domestic Trafficking Victims........................... $6,755,000 \7\ $20,000,000
Torture Survivor Assistance............................ $10,735,000 $10,735,000 \8\ $16,000,000
Unaccompanied Children................................. $1,303,245,000 \9\ $1,148,000,00 \10\ $1,303,245,0
0 00
--------------------------------------------------------
Total................................................ $1,864,936,000 $1,692,000,000 $2,056,446,000
----------------------------------------------------------------------------------------------------------------
\4\ The fiscal year 2018 omnibus explanatory statement indicates that Congress is supportive of combined
administration of these three programs, but requires that all three programs continue in fiscal year 2018 to
be funded at fiscal year 2017 levels, which were reflected in RCUSA's asks
\5\ The Administration proposes merging the administration of Refugee Social Services and Targeted Assistance
into one new program, Refugee Support Services. Congress has not allocated less than $200 million for these
programs in at least 15 years, not even taking inflation into account.
\6\ An increase is requested to serve trafficking survivors, given the 962 percent increase in the number of
victims identified and certified in need of services since 2002, based on the 2002 ORR report to Congress and
the 2016 Trafficking in Persons (TIP) report.
\7\ See #4.
\8\ An increase is requested because many of the torture treatment centers in the Center for Victims of Torture
(CVT) network have lengthy wait lists, some as long as 8 months, even without outreach. Additionally, in some
areas asylum seekers comprise more than 80 percent of treatment center clients; given the administration's
plans to more rapidly increase asylum claims there will likely be an increased demand for torture survivor
services. Finally, ORR estimates up to 44 percent of refugees are torture survivors.
\9\ This request includes a scored $100 million contingency fund for unaccompanied children, and authorization
for an additional $100 million as needed based on certain triggers, which RCUSA supports.
\10\ RCUSA supports continued funding at the level enacted by Congress for fiscal year 2018 but stresses that
the funding increase should not be used to support forced family separation at the southern border or
increased use of large-scale institutional shelter facilities.

______

Prepared Statement of Refugee Council USA
On behalf of the twenty-five member organizations of Refugee
Council USA (RCUSA) \1\ dedicated to refugee protection, assistance and
welcome, and representing the interests of hundreds of thousands of
refugees, their families, and the millions of volunteers and community
members across the country who support refugee resettlement, I thank
you for the opportunity to submit these funding recommendations for
fiscal year 2019. RCUSA recommends fiscal year 2019 funding levels of
$2.056 billion for the Department of Health and Human Services' Refugee
and Entrant Assistance (REA) account.
---------------------------------------------------------------------------
\1\ A list of RCUSA member organizations can be viewed at
RCUSA.org.
---------------------------------------------------------------------------
The REA account funds the Office of Refugee Resettlement (ORR)
within the Administration of Children and Families. ORR funding
provides critical Federal investments in the States and local
communities that welcome refugees, and is a crucial component of
fostering refugee integration and economic contributions. In addition
to new refugee arrivals, ORR funding provides essential services to
refugees who arrived in recent years, unaccompanied refugee minors,
asylees, Cuban and Haitian entrants, Special Immigrants Visa (SIV)
holders from Afghanistan and Iraq who served the U.S. mission in those
countries, victims of human trafficking, survivors of torture, and
unaccompanied children. Through ORR programs and associated public-
private partnerships, in fiscal year 2019 ORR anticipates serving
119,000 individuals, including 45,000 refugees.\2\
---------------------------------------------------------------------------
\2\ The fiscal year 2019 refugee admissions ceiling has not been
set. This figure also does not include unaccompanied children,
predominantly from Central America, in ORR's care.
---------------------------------------------------------------------------
RCUSA supports a continuance of the funding provided in the fiscal
year 2018 omnibus appropriations bill with three exceptions. RCUSA
recommends an increase for the Transitional Medical Assistance (TAMS)
program; domestic and foreign-born trafficking victim services; and,
torture survivor assistance. TAMS funds critical initial assistance to
refugees and other new arrivals; programs for vulnerable unaccompanied
refugee children; and the highly effective Matching-Grant program,
which leverages public funds with private donations, empowering
refugees to secure employment within 6 months. The trafficking program
has seen a 962 percent increase in identified victims in need of
trauma-informed case management services since 2002,\3\ and funding has
not kept pace with this increase, jeopardizing the ability of the
program to enroll all identified new clients. Finally, torture
survivors currently face long wait lists for services due to chronic,
systemic underfunding.
---------------------------------------------------------------------------
\3\ This is based on the 2002 ORR report to Congress and the 2016
TIP report.
---------------------------------------------------------------------------
The U.S. is one of roughly 37 resettlement countries. The U.S.
Refugee Admissions Program (USRAP) process begins with rigorous
screening to determine that applicants qualify for refugee status and
are not a security risk. The U.S. admits a small percentage of the
world's refugees, often the most vulnerable, for resettlement
(including unaccompanied refugee minors) through the USRAP. Refugees
arriving through the USRAP, along with Iraqi and Afghan SIV recipients,
are placed with one of nine voluntary nonprofit resettlement agencies
that have signed a Cooperative Agreement with the State Department and
have local affiliates in over 200 sites in communities around the
country. Six of the nine voluntary agency networks are faith-based, and
harness the energy of many faith communities to help welcome newcomers
to their new communities. These community organizations ensure that a
core group of services are provided during the first 30-90 days after a
refugee's arrival, including the provision of food, housing, clothing,
employment services, follow-up medical care, and other necessary
services. After this initial period, ORR funds integration services
through both the States and community partners around the country.
Once refugees arrive to the U.S., they are supported to become
oriented to the community, learn English, enroll their children in
school, and find employment. With this crucial support, they often are
not only able to support themselves and their families but also become
contributors to their new communities, integrating with and bringing
innovation to our neighborhoods. The following highlights critical
programs within the REA account, but does not include all program
activities:
Transitional & Medical Services
Matching Grant Program: The Matching Grant Program, a public-
private partnership, is ORR's most successful program to help refugees
achieve early self-sufficiency. It empowers refugees and other eligible
individuals to become self-sufficient within 6 months without needing
to access Federal or State assistance programs. The program leverages
public funds with private donations at a 2:1 ratio, with
nongovernmental agencies working hand-in-hand with local communities to
match Federal Government contributions with private resources.
Refugee Cash and Medical Assistance (CMA): CMA provides time-
limited (eight months maximum) services including cash assistance,
coverage for health expenses, and medical screening. ORR reimburses
States for 100 percent of services provided to refugees and other
eligible persons, as well as associated administrative costs.
Unaccompanied Refugee Minors: Unaccompanied refugee minors (URM)
are among the most vulnerable of refugees, and the U.S. is the only
country that permanently resettles them. URM have been lost or
separated from their parents and families and have often suffered
greatly not only in their home country but also in countries near their
homelands where they have sought refuge. This is a small but crucial
U.S. program to protect the most vulnerable of these at-risk children
and provide them a new life in the U.S.
Refugee Support Services (RSS)
RCUSA is concerned with the proposed 22 percent cuts to the
programs funded by RSS, which promote refugee employment and fiscal
contributions to US communities; these cuts will result in greater
burdens placed on States and localities to fund benefits rather than
proven employment services.
Refugee Social Services: RSS supports initial employability
services and other integration services that address initial barriers
to employment. It is provided to States and non-profit organizations
based on formula pertaining to anticipated refugee and other arrivals
and competitive grants. Additionally, school Impact funding, provided
through a formula in the RSS program, supports impacted school
districts with the funds necessary for activities, like English as a
Second Language instruction, that will lead to the effective
integration and education of vulnerable children.
Targeted Assistance Program (TAG): TAG is a discretionary grant
program that provides support to States with particularly high refugee
arrivals, including via secondary migration, and services to refugees
requiring longer term employment support. It also provides specialized
services to meeting the unique needs of certain groups, such as youth
programming and career development for higher skilled refugees looking
to recertify in their field.
Refugee Health Promotion (RHP): The Administration's fiscal year
2019 budget again proposes eliminating this vital program, which helps
refugees navigate the U.S. healthcare system. It is awarded
competitively and helps fund State Refugee Health Coordinators, provide
language access at Federal healthcare centers, and supports mental
health screening of refugees, among other things. RCUSA strongly
opposes the proposed elimination of RHP.
Survivors of Trafficking: Since the passage of the Trafficking
Victims Protection Act in 2000, victims of human trafficking have
received case management services through HHS's partnership with NGO
providers, including assistance obtaining and referrals to medical and
psychological treatment, housing, educational programs, life skills
development, legal services, and other assistance. Funding is also
utilized to promote public awareness, training, and coalition building
to raise awareness about human trafficking among law enforcement,
social services, medical staff, and other potential first responders,
in addition to other to other faith-based and community groups. These
grants are crucial to providing victims, including children,
integrative aid and services once they have been identified as a victim
of trafficking. Increased funding to $20 million for each domestic and
foreign-born victim is requested to adequately serve trafficking
survivors. This funding is critical due to the increases in victim
identification efforts. In fact, there has been a 843 percent increase
in the number of foreign-born individuals served by the program from
2003 to fiscal year 2016.
Survivors of Torture: The Torture Victims Relief Act authorizes
funding for domestic programs that address the long-term impacts of
torture on survivors and their families. Effective rehabilitation
programs address a survivor's physical, psychological, legal and social
needs to reduce their suffering and restore functioning as quickly as
possible. RCUSA's proposed $16 million for torture survivor assistance
reflects that many treatment programs have long wait lists, and that--
at current funding levels--demand will continue to exceed availability
as programs serve not only refugees, but also (and in some cases
predominantly) asylees and asylum seekers. An estimated 9,000 survivors
and their families from 125 countries benefited from these services in
fiscal year 2017.
Unaccompanied Children (UCs): In fiscal year 2017, 40,894 children
were referred to the custody and care of the Office of Refugee
Resettlement (ORR). ORR's provides children in its care with food,
shelter, and clothing as well as educational, medical, mental health,
and case management services. For a limited number of children, ORR
provides family reunification services by social services providers;
specifically, ``home studies'' to help ensure children are released
into safe placements and ``post-release services'' to facilitate family
and community integration after reunification. Post-release social
services by providers are an important means of assuring the continued
well-being and adjustment of the children and preventing such dangers
as human trafficking. Post-release services also help families to
understand the child's legal obligations as well as provide critical
protection and support to the families themselves as the children are
integrated into their new communities. These practices not only promote
child safety, but they can help reduce the need for involvement with
the public child welfare system post-release. RCUSA supports the fiscal
year 2018 funding level for these programs that promote successful
family reunification and stability, which serve the best interest of
the children. RCUSA does not support an expansion of detention,
including through use of large-scale institutional facilities, or
efforts to support forced family separation.
Our Nation's historic commitment to refugees through domestic
resettlement provides lifesaving support and protection to the world's
most vulnerable. Our Nation's historic commitment to displaced
populations helps us build strategic alliances and stabilize those
regions most affected by the largest displacement crisis in global
history. This helps keep America safe. Thank you for considering our
funding recommendations for fiscal year 2019.

FISCAL YEAR 2019 OFFICE OF REFUGEE RESETTLEMENT FUNDING NEEDS FOR PTHE REFUGEE AND ENTRANT ASSISTANCE ACCOUNT
----------------------------------------------------------------------------------------------------------------
Fiscal Year
-----------------------------------------------------------
Program Areas 2018 Enacted 2019 President's 2019 RCUSA
Funding Request Request
----------------------------------------------------------------------------------------------------------------
Transitional & Medical Assistance (TAMS)............ $320,000,000 $354,000,000 $490,000,000
Refugee Social Services............................. \4\ $207,201,000 \5\ $161,000,000 $155,000,000
Targeted Assistance................................. $47,601,000
Refugee Health Promotion............................ $0 $4,600,000
Subtotal (Resettlement Services).................... $527,201,000 $515,000,000 $697,201,000
Foreign-Born Trafficking Victims.................... $17,000,000 $18,755,000 \6\ $20,000,000
Domestic Trafficking Victims........................ $6,755,000 \7\ $20,000,000
Torture Survivor Assistance......................... $10,735,000 $10,735,000 \8\ $16,000,000
Unaccompanied Children.............................. $1,303,245,000 \9\ $1,148,000,000 \10\ 1,303,245,000
Total............................................... $1,864,936,000 \11\ $1,692,000,00 $2,056,446,000
0
----------------------------------------------------------------------------------------------------------------
\4\ The fiscal year 2018 omnibus explanatory statement indicates that Congress is supportive of combined
administration of these three programs, but requires that all three programs continue in fiscal year 2018 to
be funded at fiscal year 2017 levels, which were reflected in RCUSA's asks
\5\ The Administration proposes merging the administration of Refugee Social Services and Targeted Assistance
into one new program, Refugee Support Services. Congress has not allocated less than $200 million for these
programs in at least 15 years, not even taking inflation into account.
\6\ An increase is requested to serve trafficking survivors, given the 962 percent increase in the number of
victims identified and certified in need of services since 2002, based on the 2002 ORR report to Congress and
the 2016 Trafficking in Persons (TIP) report.
\7\ See #4.
\8\ An increase is requested because many of the torture treatment centers in the Center for Victims of Torture
(CVT) network have lengthy wait lists, some as long as 8 months, even without outreach. Additionally, in some
areas asylum seekers comprise more than 80 percent of treatment center clients; given the administration's
plans to more rapidly increase asylum claims there will likely be an increased demand for torture survivor
services. Finally, ORR estimates up to 44 percent of refugees are torture survivors.
\9\ This request includes a scored $100 million contingency fund for unaccompanied children, and authorization
for an additional $100 million as needed based on certain triggers, which RCUSA supports.
\10\ RCUSA supports continued funding at the level enacted by Congress for fiscal year 2018 but stresses that
the funding increase should not be used to support forced family separation at the southern border or
increased use of large-scale institutional shelter facilities.

Prepared Statement of Research!America
On behalf of Research!America, the Nation's largest not-for-profit
education and advocacy alliance working to accelerate medical progress
and strengthen our Nation's public health system, thank you for this
opportunity to share our views on fiscal year 2019 appropriations under
the jurisdiction of the Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies. We are grateful that for
fiscal year 2018, the committee not only bolstered the base budgets of
the National Institutes of Health (NIH), the Centers for Disease
Control and Prevention (CDC), and the Agency for Healthcare Research
and Quality (AHRQ), but also provided dedicated funding for such
escalating threats as the opioid crisis and antibiotic resistance and
unique needs like the development of a universal flu vaccine. Our
appropriations requests for fiscal year 2019 focus on continuing to
rebuild the base budgets of these agencies, since the dollars needed to
address the opioid crisis and other discreet research and public health
issues could well change over the course of fiscal year 2018.
In that context, we request a discretionary budget increase of at
least $2.215 billion for the National Institutes of Health, agency-wide
funding of $8.445 billion for the Centers for Disease Control and
Prevention, and agency-wide funding of $454 million for the Agency for
Healthcare Research and Quality.
The National Institutes of Health Drives the Discovery of New
Treatments and Cures
NIH is the world's leading funder of basic biomedical research, and
Americans recognize the value this research delivers. Since 1992,
Research!America has commissioned national and State-level surveys to
gauge public sentiment on issues related to health research and
innovation. One of the most consistent findings over time has been
Americans' support for basic research. In a recent survey, 64 percent
of respondents agreed that ``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.''
More than 80 percent of NIH funding is awarded through almost
50,000 competitive grants to 300,000 researchers at more than 2,500
universities, medical schools, and other research institutions in every
State and around the world. Research supported by NIH is typically at
the early, non-commercial stages of the research pipeline; therefore,
NIH funding complements critical private sector investment and
development. The NIH also plays an essential role in educating and
training America's future scientists and medical innovators by
sponsoring training grants and fellowships for biomedical- and health-
focused graduate and medical students, postdoctoral researchers and
young investigators-- a pivotal investment in America's future research
workforce.
NIH advances the interests of America and Americans in other
crucial ways. For example, the All of Us Research Program at NIH seeks
to collect data from one million people to help researchers uncover
paths toward delivering precision medicine, accelerating research and
improving health. The National Institute of Aging supports research on
the health and well-being of older Americans and, through its
Alzheimer's Disease Education and Referral Center, provides information
on age-related cognitive changes and neurodegenerative disease. The
National Cancer Institute's Cancer Moonshot aims to accelerate research
and improve our ability to prevent and detect cancer. NIH also plays a
pivotal role in the public-private research and development of
countermeasures when epidemics and other global public health threats
emerge.
We believe it is in the strategic interests of the United States to
increase annual discretionary funding for NIH by at least $2.215
billion in fiscal year 2019, and to supplement that increase by
accelerating progress in key areas of opportunity and threat.
Research!America believes this powerful infusion of funds is merited by
the magnitude of our health challenges, the tangible and intangible
costs of inaction, and the extraordinary return on medical progress.
The Centers for Disease Control and Prevention Safeguards the Nation's
Health
CDC is tasked with protecting and advancing the Nation's health,
and over the past 70 years it has worked diligently to thwart deadly
outbreaks, costly pandemics and debilitating disease. Moreover, CDC
plays a key role in research that leads to life-saving vaccines,
bolsters defenses against bioterrorism and improves health tracking and
data analytics. CDC's work has benefited America and Americans in
myriad ways, including dramatically reducing the incidence of child
lead poisoning, reducing deaths from motor vehicle accidents,
containing dangerous pandemic and epidemics, achieving a significant
expansion of newborn hearing tests and other screening measures and
preventing millions of hospitalizations.
Ebola, Zika, Dengue fever, flu and other emerging health threats
have shown just how critical CDC is to our Nation, and have also
revealed the enormity of the challenge the agency faces as it works to
safeguard American lives. To protect our Nation, CDC scientists must be
on-the-ground fighting public health challenges wherever and whenever
they occur. But there is an imbalance between the funding provided to
CDC and its increasingly growing mission demands. We request that CDC
receive at least $8.445 billion in fiscal year 2019 to carry out its
crucially important responsibilities.
AHRQ Provides Best Practices to Keep Healthcare Costs Under Control
AHRQ is the lead Federal agency responsible for ensuring that
medical progress translates into better patient care. The value of
medical discovery and development hinge on smart healthcare delivery.
Out of the $3 trillion annual spending on healthcare, an estimated 30
percent could be prevented by addressing error and inefficiency. AHRQ-
funded research identifies and addresses this diversion of limited
healthcare dollars, empowering patients to receive the right care at
the right time in the right settings. One out of every 25 hospital
patients are affected by healthcare-associated infections. AHRQ-funded
research highlighted best practices for identifying methicillin-
resistant Staphylococcus aureus (MRSA) in long-term care facilities as
part of an infection control strategy that limits the exposure of MRSA-
free residents.
From ensuring new medical discoveries reach doctors and patients as
quickly as possible in rural as well as urban areas to deploying
telemedicine and other health IT to address challenges in healthcare
access and delivery, to cutting the number of deadly and preventable
medical errors, AHRQ serves many critical purposes. If we underinvest
in AHRQ, we are inviting unnecessary healthcare spending and
squandering the opportunity to ensure patients receive the quality care
they need. We ask that you commit to investing in life- and cost-saving
health services research by funding AHRQ at $454 million in fiscal year
2019.
conclusion
There are few Federal investments that convey benefits as important
and far-reaching as funding for NIH, CDC and AHRQ: new cures, new
businesses, new jobs; innovative solutions that improve healthcare
delivery and optimize the use of limited health dollars; and a public
health system nimble and sophisticated enough to meet daunting
challenges to the health and safety of the American people. We
appreciate your consideration of our funding requests and thank you for
your stewardship over such critically important Federal spending
priorities.
Sincerely.

[This statement was submitted by Mary Woolley, President and CEO,
Research!America.]
______

Prepared Statement of Restless Legs Syndrome Foundation
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for considering the views of the Restless
Legs Syndrome Foundation as you begin work on fiscal year 2019
appropriations for the NIH and all related research and public health
activities across the Department of Health and Human Services,
especially those aimed at combating the opioid crisis.
about the rls foundation
The Restless Legs Syndrome Foundation is a nonprofit Sec. 501(c)(3)
organization dedicated to improving the lives of men, women, and
children living with this often-devastating neurological condition. The
Foundation works to increase awareness, improve treatments, and support
research to find a cure. From a few volunteers meeting in a member's
home in 1992, the Foundation has grown steadily; it now has members in
every State, local support groups, and a track record that includes
over $1.6 million provided to support fundamental research.
about rls
Restless legs syndrome (RLS) is essentially an irregular biological
drive, like hunger or thirst, that forces affected individuals to keep
moving, thus reducing their ability to rest. Patients with this disease
experience a deep, viscerally-irritating sensation in the legs that
continues to increase until they are literally forced to move their
legs or get up and walk; and this sensation only abates so long as the
individual keeps moving. RLS is best characterized as a neurological,
sensory-motor disorder with symptoms that are triggered from within the
brain itself. It is estimated that up to 5 to 7 percent of the U.S.
population may have RLS, of which half will have moderate to severe
stages of the disease. RLS impacts men, women, and children, though it
is 3 to 4 times more common in women and twice as common in older
Americans.
Due to the inability to sleep and work, RLS can cause disability,
depression, and suicidal ideation, as well as increased risk for co-
morbid conditions such as heart attack, stroke, and Alzheimer's. There
is no cure, and the current standards of care features several
medications, which do not provide life-long coverage. One of the
established effective treatment options for this disease is low-total
daily dose opioid medications. These are commonly used when all other
drug classes have failed. Research and clinical experience indicates
that the dose of opioids typically used to manage RLS effectively
without addiction or drug tolerance issues is significantly lower than
dosages used to treat chronic pain.
fiscal year 2019 appropriations recommendations
The RLS Foundation joins the broader medical research community in
thanking Congress for providing a $3 billion funding increase for NIH
for fiscal year 2018 and in requesting at least a subsequent $2 billion
funding increase for fiscal year 2019 to bring NIH's budget up to $39.3
billion, which is consistent with the necessary level of funding
identified through the 21st Century Cures Act.
In this regard, please provide proportional funding increases for
all NIH Institutes and Centers, including, but not limited to the
National Institute of Neurological Disorders and Stroke (NINDS), the
National Heart, Lung, and Blood Institute (NHLBI), the National
Institute on Drug Abuse (NIDA), and the National Institute of Mental
Health (NIMH). Research on RLS and similar neurological movement
disorders is directly related to efforts targeting the opioid epidemic,
as many patients with these disorders utilize very low total daily
doses of opioid therapies to manage their condition. Additionally,
related sleep disorders research activities impact many conditions and
are studied across various Institutes and Centers at NIH.
rls and the opioid crisis
While you debate the Committee's response to the opioid epidemic,
the RLS Foundation asks that you protect the needs of patient
communities who depend on appropriate access to low total daily dose
opioid therapies to manage their debilitating condition. RLS is not a
chronic pain condition, and many in our community utilize these
medications to treat underlying neuropathology issues and not
sensations of pain. Studies have shown that appropriate access to these
therapies allows patients to live productive lives without an increased
risk of developing opioid use disorder. As you consider various
legislative proposals and work with Federal agencies, please consider
the needs of patients who rely on the regular use of low total daily
dose opioids to manage RLS by supporting a diagnosis-appropriate safe
harbor for RLS patients, so they do not face arbitrary barriers.
I would like to share with you the experience of Tim Thorton from
Boise, Idaho. Tim suffers from RLS, and he participated in the
Foundation's awareness campaign earlier this year to educate members of
Congress and the public about the daily struggles that accompany this
devastating disorder:
``I was one of the unfortunate individuals who developed restless
leg syndrome in my 30s. After developing RLS and having a sleep study,
my doctor placed me on so many different medications that I cannot
recount the exact number. Out of sheer desperation and complete
exhaustion, I felt as though I was at a dead end. I literally thought
my life as I knew it was over. My wife all the while had been doing her
own research online and came across a doctor practicing out of Downey,
California. I called him that afternoon. He called me back that day and
the next week I flew down to Los Angeles to meet with him. During the
period [before] seeing [this doctor], I paced my hallways every night,
my wife almost took me to the emergency room twice, and I literally
could not function nor go to work due to sleep deprivation. Once I
agreed to go on Methadone, my life has quite literally turned around. I
have actually been on it almost 5 years, and my dosage has gone down a
bit. My life is back again. I attribute my ability to live a normal
life to Methadone, as without it, I can tell you that I would probably
be in some ward somewhere, not working, not being able to be the parent
that I am, and not contributing to society. It simply takes away the
unbelievably uncomfortable feeling in my legs and arms, allowing me to
sleep at night and function normally during the day. If this medication
were taken away from RLS sufferers, you would be doing a disservice
that is of a magnitude to sufferers like me that cannot be
comprehended. This medication has had such a huge benefit in the
quality of my life that I don't know what I would do without it. We are
contributing members of society who happen to have a disease that
leaves us with virtually no alternative. This is not a disease I asked
for when I was born, and if any of the people considering doing away
with the regular prescribing of this medication to sufferers like me
were to spend a few nights with our condition, I guarantee that they
would reverse their decision for certain diseases and not lump us all
into the class of people that are abusers. I am pleading with you to
consider those of us with RLS before acting on this agenda item to do
away with prescribing this for our community as long as it is
working.''
Thank you for the opportunity to testify before your committee and
for you time and consideration of our requests.

[This statement was submitted by Karla M. Dzienkowski, RN, BSN,
Executive
Director, Restless Legs Syndrome Foundation.]
______

Prepared Statement of Rotary International
Chairman Blunt, Ranking Member Murray, members of the Subcommittee:
Rotary appreciates the opportunity to encourage continuation of funding
for fiscal year 2019 to support the polio eradication activities of the
U.S. Centers for Disease Control and Prevention (CDC). The CDC is a
spearheading partner of the Global Polio Eradication Initiative (GPEI),
which is an unprecedented model of cooperation among national
governments, civil society and UN agencies working together to reach
the most vulnerable children through the safe, cost-effective public
health intervention of polio immunization. We appeal to this
Subcommittee for continued leadership to ensure we seize the
opportunity to conquer polio once and for all. Rotary International
requests that $176 million be provided for the polio eradication
activities of the CDC--level funding--to ensure we end polio
transmission, protect polio free areas, and leverage the resources
developed through this global effort for value-added impact.
The United States is the leading public sector donor to the Global
Polio Eradication Initiative. The 325,000 members of Rotary clubs in
the U.S. appreciate the United States' generous support and
longstanding leadership. Rotary, including matching funds from the
Gates Foundation, has contributed more than U.S. $1.8 billion and
thousands of hours of volunteer service to protect children from polio.
Rotarians are committed to fundraising for the program until the world
is certified polio free. Continued U.S. leadership remains vital to
achieve the goal of a polio free world and ensure that the investment
in polio eradication infrastructure and resources lives on to benefit
other health efforts.
progress in the global program to eradicate polio
Since the launch of the GPEI in 1988, eradication efforts have led
to more than a 99 percent decrease in cases. Thanks to this committee's
funding for the polio eradication activities of the CDC, 2017 saw only
22 cases of wild polio confirmed in just two countries: Afghanistan and
Pakistan. Nigeria, which experienced an outbreak in 2016, has not
confirmed any new cases since August of 2016 despite humanitarian
crises. Continued progress to reach every child and stop polio virus
transmission in these most complex environments reinforces the fact
that polio eradication is feasible. While the primary focus of global
efforts is on stopping transmission of endemic polio, this is followed
closely by work to immunize the more than 400 million children in up to
70 countries which remain at risk for polio outbreaks. Since 2001, more
than 40 countries which were polio free experienced outbreaks. While
these outbreaks were stopped, they are a reminder that as long as the
wild polio virus circulates anywhere, children everywhere, including
the United Sates, remain at risk and must continue to be protected
through immunization.
Only wild poliovirus type 1 (WPV1) is still causing cases of
paralysis. Type 2 (WPV2) was declared eradicated in September 2015.
Type 3 (WPV3) has not been seen since November 2012. Eradicating
strains of the polio virus is further proof that a polio-free world is
achievable.
cdc's vital role in global polio eradication progress
The United States is the leader among donor nations in the drive to
eradicate polio globally. Congressional support has enabled CDC to:
--Provide strategic, technical expertise through the international
assignment of 14 technical staff on direct, 2-year assignments
to WHO and UNICEF to assist polio-endemic and re-infected
countries; and support for three international polio
consultants in Pakistan and eight national polio consultants in
Afghanistan;
--Expand environmental surveillance to detect and respond to vaccine-
derived poliovirus outbreaks in Syria, Democratic Republic of
the Congo, Somalia, and Kenya;
--Continue focused response to following 2016 outbreak of wild
poliovirus (WPV) in Borno, Nigeria;
--train and deploy 70 national epidemiologists from CDC's Field
Epidemiology Training Program (FETP) to the highest risk
districts in Pakistan to improve the quality of surveillance
and immunization activities there and to strengthen routine
immunization systems. This initiative was undertaken in
collaboration with the Pakistan Ministry of Health and in
coordination with WHO and the USAID's mission in Islamabad;
--provide $ 54.3 million (in fiscal year 2017) to WHO for
surveillance, technical staff and immunization activities'
operational costs, primarily in Africa.
--provide $ 24.2 million (in fiscal year 2017) to UNICEF for
approximately 40 million doses of oral polio vaccine, 2.7
million doses of inactivated polio vaccine, and $15.5 million
for operational costs for NIDs in all polio-endemic countries
and other high-risk countries in Asia, the Middle East and
Africa. Most of these NIDs would not take place without the
assurance of CDC's support.
--train virologists from around the world in advanced poliovirus
research and public health laboratory support. CDC's Atlanta
laboratories serve as a global reference center and training
facility, and leading specialized polio reference lab in the
world.
--provide the largest volume of operational (poliovirus isolation)
and technologically sophisticated (genetic sequencing of polio
viruses) lab support to 146 laboratories of the global polio
laboratory network;
--continue CDC's Stop Transmission of Polio (STOP) program, which
trains and deploys public health professionals to improve
vaccine-preventable disease surveillance and to help plan,
implement, and evaluate vaccination campaigns in countries of
higher-risk for poliovirus transmission to support critical
national immunization functions. STOP has trained and deployed
more than 2,000 public health professionals to work on polio
surveillance, data management, campaign planning and
implementation, program management, and communications in high-
risk countries. In 2017, the STOP program sent 489
professionals on assignments to 40 countries. In 2018, the
first STOP team currently in the field numbers 241 in 42
countries. The second STOP team is being finalized for training
and deployment in June 2018;
--train 252 staff at the Local Governing Area level in the highest
risk states of Nigeria through CDC's National STOP. Nigeria's
polio legacy planning will transition those workers to build
lasting improvements in Nigeria's immunization system.
--lead efforts to raise awareness of the importance and urgency of
transition planning among donors, country governments and other
stakeholders to begin polio legacy planning to ensure that key
polio functions, including immunization, surveillance, outbreak
response and biocontainment, will be in place post-eradication.
Presently, the global polio eradication staff is the single
largest source of external technical assistance for
immunization and surveillance in low-income countries, and
polio eradication efforts are responsible for reaching the
world's most vulnerable children with vaccines and other health
interventions;
--support global polio eradication by participating in technical
advisory groups, EPI manager and other key global meetings. The
CDC also published 14 articles, with five more planned for the
remainder of 2018, on the progress toward polio eradication in
the Morbidity and Mortality Weekly Report (MMWR); and
--provide scientific and technical expertise to WHO on research
issues regarding: (1) laboratory containment of wild poliovirus
stocks following polio eradication, and (2) when and how to
stop or modify polio vaccination worldwide following global
certification of polio eradication.
fiscal year 2019 budget request
We respectfully $176 million in fiscal year 2019 for the polio
eradication activities of CDC, the level that was recommended by the
House and Senate Appropriations subcommittees for fiscal year 2018.
With Congress' continued support for polio eradication in fiscal year
2019, CDC's priorities are to stop wild transmission in the three
remaining polio endemic countries and countries at-risk by
strengthening surveillance, reaching all children with vaccine, and
rapid case response. CDC will also continue to work to strengthen
surveillance for polioviruses in all areas currently below
certification standard. CDC has also begun planning for a post-polio
transition to advance additional global vaccine-preventable diseases
(VPD) control and elimination/eradication targets as outlined in CDC's
Strategic Framework for Global Immunization 2016-2020.
benefits of polio eradication
Since 1988, 16 million people who would otherwise have been
paralyzed are walking because they have been immunized against polio.
Tens of thousands of public health workers have been trained to manage
massive immunization programs and investigate cases of acute flaccid
paralysis. Cold chain, transport and communications systems for
immunization have been strengthened. The global network of 146
laboratories and trained personnel established by the GPEI also tracks
measles, rubella, yellow fever, meningitis, and other deadly infectious
diseases and will do so long after polio is eradicated.
In financial terms, the global effort to eradicate polio has saved
more than $27 billion in health costs since 1988. Polio eradication is
a cost-effective public health investment with permanent benefits. On
the other hand, as many as 200,000 children could be paralyzed annually
in the next 10 years if the world fails to capitalize on the more than
$15 billion already invested in eradication. Success will ensure that
the significant investment made by the U.S., Rotary International, and
many other countries and entities, is protected in perpetuity.
______

Prepared Statement of the Ryan White Medical Providers Coalition
My name is Ernie-Paul Barrette, MD, thank you for considering my
record testimony. I serve as Medical Director of the HIV Clinic for the
Washington University School of Medicine, in St. Louis, Missouri, the
largest providers of medical care for patients with HIV/AIDS in
Missouri. I am pleased to submit this testimony on behalf of the Ryan
White Medical Providers Coalition (RWMPC) of the HIV Medicine
Association (HIVMA). HIVMA represents nearly 5,000 HIV clinicians and
researchers, and its RWMPC is a national coalition of medical providers
and administrators who work in healthcare agencies supported by the
Ryan White HIV/AIDS Program funded by the HIV/AIDS Bureau (HAB) at the
Health Resources and Services Administration (HRSA). I thank the
Subcommittee for the $201.1 million provided in fiscal year 2018 for
the Ryan White Part C program. While grateful for this support, I
request $225.1 million, or a $24 million increase, for Ryan White Part
C in fiscal year 2019.
Part C clinics are responding to the opioid epidemic and co-
occurring substance use disorders in patients living with HIV.
Increased Ryan White Part C funding, and additional non-Ryan White
funding for substance use disorder (SUD) treatment and supportive
services such as case management, would provide SUD treatment to
patients living with HIV who also have co-occurring SUD. This strategy
of leveraging the experience and expertise of Ryan White Part C clinics
nationwide in treating both infectious diseases and SUD will support
the Nation in more rapidly and effectively responding to the opioid
epidemic, while also helping prevent the spread of HIV and other
infectious diseases, such as hepatitis C, sexually transmitted
diseases, and heart infections.
washington university in missouri is leading the way
Washington University's Ryan White-funded clinic has served as the
leading source of HIV primary care in Missouri for over 30 years. Each
year our Ryan White clinic serves more patients with more complex
needs. In 2017, the HIV Clinic at Washington University experienced a
7.0 percent increase from 2016 in its number of patients living with
HIV. Over the last 10 years the clinic has seen a 56 percent increase
in patients with HIV. Additionally, approximately 1 in 3 were fully
uninsured and relied heavily on the Ryan White Program to fund their
care, and a significant portion experienced housing insecurity.
Washington University, like most Ryan White Part C clinics, also
receives support from other parts of the Ryan White Program that help
us provide medications; additional medical care, such as dental
services; and support services, such as mental health, case management
and transportation--all key components of the comprehensive Ryan White
care model that produces outstanding outcomes.
Due to increased rates of hepatitis C infection which is in part
driven by the opioid epidemic, the Washington University HIV Clinic has
started a hepatitis C clinic in order to treat this infection earlier.
In addition, the Washington University HIV Clinic has been a leader in
expanded HIV testing to identify cases, improved linkage-to-care
services, and use of social media to improve engagement, retention, and
medical outcomes among youth and young adult patients. However, the
opioid epidemic is hitting Missouri and other parts of the U.S. hard.
Washington University patients struggle not only with HIV, but also
with substance use disorder and related infectious diseases, such as
hepatitis C. In fact, Missouri has seen a recent dramatic increase in
cases of hepatitis C.\1\
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\1\ Missouri Department of Health and Senior Services. Online at:
https://health.mo.gov/data/hivstdaids/pdf/HepCKnownRisksFactSheets.pdf.
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ryan white part c clinics are effective medical homes and public health
programs
Part C directly funds approximately 350 community health centers
and clinics that provide comprehensive HIV medical care nationwide,
serving more than 300,000 patients each year. These clinics are the
primary method for delivering HIV care to rural jurisdictions--
approximately half of all Part C providers serve rural communities.
Access to Ryan White Part C clinics has helped to dramatically decrease
AIDS-related mortality and morbidity over the last decade. However, HIV
treatment also benefits public health by reducing HIV transmission to
virtually zero when individuals are virally suppressed. In 2016, 85
percent of Ryan White patients were virally suppressed. Washington
University is doing even better than this national average--in 2017, 87
percent of Washington University patients were virally suppressed. The
Ryan White Part C program's comprehensive services help to engage and
keep people in HIV care and treatment. For example, 88 percent of HIV
patients remain in care at Washington University--a critical fact since
HIV disease is infectious, so identifying, engaging, and retaining
persons living with HIV in effective care and treatment is an essential
public health outcome.
part c clinics are on the frontlines of the opioid epidemic and provide
sud treatment
Ryan White Part C clinics are experienced in effectively responding
to the opioid epidemic because many clinics already provide both HIV
and substance use disorder (SUD) treatment. Ryan White Part C clinics
deliver a range of medical and support services needed to prevent and
treat SUD, as well as related infectious diseases, such as hepatitis C.
Part C clinics also are responding to increases in new HIV cases linked
to the opioid epidemic by working with community-based providers and
public health systems to provide access to needed HIV and SUD
prevention, treatment, and support services. Additional Ryan White
funding and non-Ryan White funding for SUD services for Part C clinics
would increase access to SUD treatment and comprehensive support
services for both individuals living with HIV as well as those without
HIV. Such funding would increase access to SUD treatment more rapidly
nationwide through the Ryan White Part C clinic network, which would
help prevent the spread of HIV and other infectious diseases.
part c clinics are saving lives and reducing costs
Early and reliable access to HIV care and treatment helps patients
with HIV live healthy and productive lives and is more cost effective.
A study from the Part C clinic at the University of Alabama at
Birmingham found that patients treated at later stages of HIV disease
required 2.6 times more healthcare dollars than those receiving earlier
treatment meeting Federal HIV treatment guidelines. These principles
also apply when addressing SUDs. Kaiser Permanente Northern California
analyzed the average medical costs during the 18 months pre- and post-
SUD treatment and found that the SUD treatment group had a 35 percent
reduction in inpatient costs, 39 percent reduction in ER costs, and a
26 percent reduction in total medical costs, as compared to a matched
control group.\2,3\ Engaging Ryan White Part C clinics to expand access
to SUD services will help meet the urgent need for this care nationwide
and reduce medical and emergency care costs for people living with SUD
and other communicable diseases such as viral hepatitis.
---------------------------------------------------------------------------
\2\ Weisner C. Cost Studies at Northern California Kaiser
Permanente. Presentation to County Alcohol & Drug Program
Administrators Association of California Sacramento, California.
January 28, 2010.
\3\ Weisner C, Mertens J, Parthasarathy S, et al. Integrating
primary medical care with addiction treatment: A randomized controlled
trial. Journal of the American Medical Association, 2001; 286: 1715-
1723.
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increased funding for prevention at cdc and research at nih also is
critical
While my testimony is focused on HRSA's Ryan White Program, the
ability to effectively respond to the interconnected HIV and opioid
epidemics also depends heavily on CDC funding to enhance surveillance
and prevention activities, and on NIH to continue to improve the tools
that we have to prevent and treat HIV and SUD and to learn how to
effectively implement them. I appreciated the increase of $5 million in
funding for sexually transmitted diseases (STD) and for viral hepatitis
for fiscal year 2018, but a significant boost in funding of $303
million is needed for the Division of HIV, Viral Hepatitis, STD and
Tuberculosis to scale up activity relative to the size and scope of the
epidemics we face. The $3 billion increase for NIH for fiscal year 2018
was a critical investment in supporting the scientific discoveries that
will help to end both the HIV and opioid epidemics. I urge you to
sustain and grow NIH funding.
conclusion
Thank you for your consideration of these requests and your
leadership on these pressing public health issues. As discussed in this
testimony, I urge to you to provide robust fiscal year 2019 funding for
the Ryan White HIV/AIDS Program, substance use disorder treatment and
the treatment and surveillance of related infectious diseases, and NIH
research.

[This statement was submitted by Ernie-Paul Barrette, MD, Medical
Director, HIV Clinic for the Washington University School of Medicine
and Member, Ryan White Medical Providers Coalition of the HIV Medicine
Association.]
______

Prepared Statement of Sac and Fox Nation
Chairman Blunt and esteemed members of the Committee, on behalf of
the Sac and Fox Nation I thank you for the opportunity to submit this
testimony for the record of our requests for the fiscal year 2019
Budgets and matters for consideration for Health and Human Services and
Education. The Sac and Fox Nation looks forward to building a positive
relationship with your committee and enhancing the future of our Tribal
citizens.
We are in need of a renewed commitment to Native education. The
Federal trust responsibility will continue to be undermined until the
Federal Government fully appropriates funding to bridge the educational
attainment gap. Implementing the following requests would ensure this
trust responsibility is upheld by reinvesting critical resources to
improve the education systems serving Native students. We appreciate
Congress working across the aisle to better fund and support Native
education and we hope that Congress provides full appropriations to
authorized programs which Native students desperately need.
The Sac and Fox Nation currently has an enrollment of over 3,000
people, with a jurisdictional area covering all or parts of Payne,
Pottawatomie and Lincoln counties. We are a Self-Governance Tribe in
both the Department of the Interior and the Department of Health and
Human Services. The Sac and Fox Nation is home of Jim Thorpe, one of
the most versatile athletes of modern sports who earned Olympic gold
medals for the1912 pentathlon and decathlon.
i. department of education requests
A. $5 million for the State-Tribal Education Partnership Program
(STEP) Increase in funding directly to education departments to allow
more money for programs. The Sac and Fox Nation supports direct funding
for Tribal Education Agencies (TEA) because it would provide more money
for programs which are seriously underfunded. For more than a decade we
have advocated and fought for greater Tribal participation in educating
Native students. STEP promotes increased collaboration between Tribal,
State and local education agencies and building the capacity of TEAs to
conduct certain administrative functions under ESEA formula grants for
eligible schools. The enactment of Public Law 114-95, Every Student
Succeeds Act (ESSA) places emphasis on State and local innovation and
highlights a new era, providing a great deal of flexibility to our
States and local districts and includes several Native specific
provisions.
B. $25 billion for Title I, Part A, Local Education Agency (LEA)
Grants--Support Investing in Tribally Driven Education. Title I of ESSA
provides critical financial assistance to local educational agencies
and schools with high percentages of children from low income families
that ensure all children meet challenging State academic standards.
Currently, there are over 600,000 Native students across the country
with nearly 93 percent of those students attending non-Federal
institutions, such as traditional public schools in rural and urban
locations. In order to address annual inflation, CR's and
sequestration, a substantial increase in funding is needed to meet the
needs of Native students and students from low-income families.
However, the President's budget proposal for fiscal year 2019 cuts
funding for all ESSA programs by almost $3.4 billion (-14 percent)
compared to fiscal year 2017; and underfunds ESSA programs by nearly
$5.1 billion (-20 percent) compared to authorized levels.
ii. department of health and human services requests
A. $9.6 billion for Head Start which includes Indian Head Start--
Head Start has been and continues to play an instrumental role in
Native education by providing early education to over 24,000 Native
children. This vital program combines education, health, and family
services to model traditional Native education, which accounts for its
success rate. Current funding dollars provide less for Native
populations as inflation and fiscal constraints increase, even though
research shows that there is a return of at least $7 for every single
dollar invested in Head Start. Congress should increase funds to Head
Start and Early Head Start to ensure Indian Head Start can reach more
Tribal communities and help more Native recipients by activating the
Indian special expansion funding provisions (after a full Cost of
Living Allowance has been paid to all Head Start programs). We are
proud of our programs, but they are located in major areas like
Shawnee, Norman and Cushing Oklahoma. More funding and more
opportunities in this area would allow programs like ours to grow and
expand to make sure that all Tribal youth are being served when it
comes to early education.
B. Increase Funding to Social Services in Indian Country through
Health and Human Services. Our children are a critical resource that we
must protect and the great work that is done by the Administration of
Children and Families and all the Indian Child Welfare departments
across the Nation should be properly funded. With the expansion of
Indian Child Welfare, the BIA Guidelines and possible regulations these
programs are in dire need of funding to ensure that they are running at
the best capacity and efficiency possible. Protecting our Native youth
from birth, through school and their trying years of finding themselves
and their purpose is something that is paramount in our eyes. We
strongly encourage you to consider this increase and to help us fight
to make sure that critical services are reaching those who are most in
need. In fiscal year 2019, we recommend the following:
1. Restore $281 million to Child Welfare Services Program (Pre-
sequestration level). Tribes need to have access to increased flexible
Child Welfare Service Program funds for their child welfare programs.
Of the 573 Federal-recognized Tribes less than 400 have been able to
access this funding. Studies show that culturally tailored programs,
resources and case management result in better outcomes for AI/AN
children and families involved in the child welfare system. The median
Tribal grant is merely $13,300, an insufficient amount to provide the
level of program services needed by Tribes.
2. Increase to $38 million Child Abuse Discretionary Activities,
Innovation Evidence-Based Community Prevention Program. Tribes are now
eligible for these funds through a competitive grant process. An
accurate understanding of successful child abuse and neglect
interventions for American Indian and Alaska Native (A/AN) families
allows child abuse prevention programs to target the correct issues,
provide the most effective services and allocate resources wisely.
3. Increase to $45 million--Community-based Child Abuse Prevention.
Tribes have access to this program but share a one-percent set-aside of
the total funding with migrant populations through a competitive grants
program. Currently only two Tribal grantees are funded in each 3-year
cycle. This is the only program appropriated funds for prevention
programs in Tribal communities.
4. Increase to $50 million for Tribal Behavioral Health program.
AI/AN youth are more likely than other youth to have an alcohol or
substance abuse disorder. There is growing evidence that Native youth
who are culturally and spiritually engaged are more resilient than
their peers. These funds must be used for effective and promising
strategies to address the problems of substance abuse and suicide and
promote mental health among AI/AN Tribal Leaders of tomorrow.
C. Increase Funding for Part A, Grants for Indian Programs and Part
B, Grants for Native Hawaiian Programs. Increase the Level of Funding
for Programs like the Title VI Elders Program Food Delivery. At the Sac
and Fox Nation, just as throughout Indian Country, we are seeing a
great increase in the number of elders who need help getting meals.
However, not all of elders are medically homebound. Some don't have
transportation or vehicles, some have issues with being able to drive
properly and others are too far from the kitchens where meals are
served. We request an increase in funding for this program and
implementation of more flexibility. With an increase in funding more
kitchens or meals centers could be opened to provide for the care of
our growing population of elders. While this may seem small compared to
the other major issues we know you are dealing with, it is no small
issue to us. For a lot of our elder population, who may live in rural
areas or communities, a meal delivery may provide them the only
opportunity with human interaction on any given day. Moreover, it
allows them to have a good, nutritious meal which is not a possibility
for a lot of them on their own. Our meal delivery staff is critical to
the health of our elders to make sure they are eating, taking care of
themselves and can get help when it is needed. In a rural community, a
meal delivery could save a life and allows our elders to receive
consistent care.
Again, thank you for allowing us to advance these requests and
recommendation from the Sac and Fox Nation.

[This statement was submitted by Kay Rhoads, Principal Chief, Sac
and Fox
Nation.]
______

Prepared Statement of the Safer Foundation
My name is Victor Dickson and I submit testimony on behalf of the
Safer Foundation. For 46 years, Safer has provided a comprehensive
continuum of workforce development and reentry services for individuals
with arrest and conviction records seeking employment. There is dignity
in work, and Safer Foundation believes that individuals who have made
mistakes in the past should have the opportunity to be self-sufficient
and contribute to their families and communities through gainful,
living wage employment. Clients come to Safer because they want and
need to work. Safer Foundation helps clients discover career paths that
provide personal fulfillment while allowing them to earn a living. A
critical Federal program that supports these efforts is the
Reintegration of Ex-Offenders (RExO) program within the Employment &
Training Administration of the U.S. Department of Labor. I thank the
Subcommittee for providing RExO with $93 million in fiscal year 2018.
Given the persistent skills gap and significant need to help employers
identify qualified workers nationwide, I request $100 million for the
RExO program in fiscal year 2019.
Employment Reduces Recidivism and Improve Reentry Outcomes
Research shows that sustained, living wage employment and life
skills are critical components to long-term reentry success. One study
found that individuals who were employed and earning higher wages after
release were less likely to return to prison within the first year.\1\
Unfortunately, finding this type of employment can be prohibitively
difficult for Americans who have any history of justice system
involvement. The National Employment Law Project estimates that 1 in 3
American adults has a criminal record that interferes with their
ability to find a job.\2\ The RExO program helps individuals overcome
employment barriers by preparing participants for jobs in local high-
demand industries through career pathways and industry-recognized
credentials.
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\1\ Visher, C., Debus, S., & Yahner, J. Employment After Prison: A
Longitudinal Study of Releasees in Three States. Washington, DC: Urban
Institute (2008).
\2\ ``Research Supports Fair-Chance Policies'' (March 2016),
National Employment Law Project, footnote 1 on p. 7. Available at
http://www.nelp.org/publication/researchsupports-fair-chance-policies.
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Increasing RExO funding would expand access to comprehensive
workforce development and reentry services that assist individuals with
criminal records in navigating obstacles to employment while improving
employment and reentry outcomes. Authorized by section 169 of Workforce
Innovation and Opportunity Act (WIOA), the RExO program provides
critical workforce preparation services for both adults and young
people. RExO includes a $25 million set-aside to provide services to
prepare formerly incarcerated youth for employment, including those who
have not completed school or other educational programs. In light of
the significant costs of the criminal justice system at the State,
local, and Federal levels, the RExO program is crucial to incubating
community-based models of successful reentry through employment.
Safer's RExO Services Increase Employment by Working with Employers and

Employees
Safer Foundation offers a full spectrum of workforce development
and reentry services that train individuals, address their reentry
obstacles and needs, and help them obtain sustained employment. This
holistic approach has rendered outstanding results for participants and
employers. In 2006, decades of experience and success led Safer to
become one of the original RExO grantees. This year, Safer expects to
provide employment services to nearly 6,000 individuals with arrest and
conviction records, with RExO funding providing critical support for
these services.
However, in addition to working with reentering individuals and
their communities, Safer also works closely with employers to identify
what types of trained employees they need. Safer can be responsive to
employer needs by tailoring its programs to develop skilled workers for
specific employment sectors. For example, Safer's Training to Work
(T2W) program, funded by a RExO grant, has improved long-term
employment prospects for clients at Safer's Adult Transition Centers
(ATC). Program participants receive case management, education, and
training that lead to industry-recognized credentials for in-demand
employment such as forklift operation, foodservice and sanitation,
welding, computer numerically control (CNC), CDL training, and
Microsoft technologies. Given the program's strong employer and
credentialing components, RExO is uniquely positioned to assist local
organizations in developing and providing services that meet the needs
of both the local business community and reentering individuals.
Safer's RExO Grant Produced Outstanding Employment Outcomes and Reduced

Recidivism
Safer's RExO grant for the Training to Work (T2W) program
significantly outperformed employment targets and dramatically reduced
recidivism. For the first cohort of RExO T2W participants, 69 percent
of participants obtained employment--15 percent higher than the grant's
employment target. Given the success of this first cohort of
participants, T2W was extended to a second cohort who did even better
with an employment rate of 78 percent--30 percent higher than the
grant's target.
Safer's RExO T2W grant also reduced recidivism rates beyond
original targets. A 2014 report published by the Bureau of Justice
Statistics, which studied recidivism across 30 States for 5 years,
determined that the recidivism rate 1 year after release from prison
was 43.4 percent.\3\ T2W's first participant cohort had an 11 percent
recidivism rate, and its second participant cohort had a 9 percent
recidivism rate--respectively 75 percent and 80 percent lower than the
national recidivism rate.
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\3\ Durose, Matthew R., Alexia D. Cooper, and Howard N. Snyder,
Recidivism of Prisoners Released in 30 States in 2005: Patterns from
2005 to 2010 (pdf, 31 pages), Bureau of Justice Statistics Special
Report, April 2014, NCJ 244205.
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Program evaluation has shown that such successful outcomes are
related to the comprehensive service model that grantees such as Safer
provide. Effective, comprehensive services can include interventions
such as relationship building between staff and participants,
employment verification, trauma informed training, life skills
training, employment preparation, mentoring, intensive case management,
strong training provider relationships and support, family involvement,
and post-release follow-up and support.
U.S. Economic Success Requires Increased Employment of Individuals with
Criminal Records
As the U.S. economy continues to rebound from the last recession,
the labor market is tightening and the skills gap is growing. While
currently the U.S. is experiencing a period of economic expansion,
experts warn that this expansion will end prematurely if the U.S. does
not relieve structural constraints on labor force participation,
including over-expansive bans on employment of individuals with
criminal records. Employment barriers faced by individuals with
criminal records combined with the opioid epidemic have deflated the
U.S. labor force participation rates, which are as low today as they
were over 30 years ago.\4\ As labor markets continue to tighten,
employers are increasingly ready to give people with criminal records a
fair shot, and increasingly need to do so to find and employ skilled
workers. Safer has partnered with hundreds of employers to meet their
workforce needs. Increased RExO funding in fiscal year 2019, including
the funding of earn and learn apprenticeship opportunities for in
demand skill development, would allow these efforts to expand, and
could help match more employers with qualified employees who are
trained, talented, motivated to work.
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\4\ Bureau of Labor Statistics, US Department of Labor. Available
at https://data.bls.gov/timeseries/LNS11300000.
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conclusion
By making effective workforce development and reentry services a
priority, we fulfill labor market demands, contribute to a growing
economy, and build strong and safe communities. Given the extensive
employment and reentry needs nationwide, as well as the significant
return on investment related to reduced incarceration costs and reduced
crime costs borne by victims, families, and communities, I urge
Congress to allocate $100 million to the RExO program in fiscal year
2019. Thank you so much for your time and consideration of this
important program.

[This statement was submitted by Victor Dickson, President and CEO,
Safer Foundation.]
______

Prepared Statement of Save the Children Action Network
Chairman Blunt, Ranking Member Murray, and honorable Members of the
Subcommittee, thank you for the opportunity to provide testimony about
the critical investments that must be made in early childhood education
(ECE). My name is Kris Perry and I am the President of Save the
Children Action Network (SCAN). SCAN is a national, non-profit
organization that aims to mobilize all Americans to support investments
in ECE, for children birth to five and their parents. We advocate for
robust appropriations for the Department of Health and Human Services
programs of Head Start/Early Head Start, Child Care and Development
Block Grants, and Preschool Development Grants, as well as the
Department of Education programs, 21st Century Community Learning
Centers and Promise Neighborhoods.
background
The changing demands of our Nation's economy, the stresses of our
labor market and the challenge created by an increasing number of
children being raised in single-parent families have all left low-
income parents struggling with the burdens of work and parenting. By
supporting critical early learning programs, not only are we investing
in the lives of children, but their parents also have the ability to
enter into the workforce and become productive, taxpaying members of
society. This increases the economic stability of families and improves
the foundation for the children's future wellbeing. Ensuring access to
ECE is the most effective way to break the cycle of poverty. These
investments lay the foundation for children's success later in school,
career and life--and they also offer tangible returns on investment to
the country as a whole, such as increased tax revenue later in life,
lower justice system costs, and reduced reliance on government
assistance.
Disadvantaged children who don't participate in high-quality early
education programs are:
--70 percent more likely to be arrested for a violent crime;
--60 percent more likely to never attend college;
--50 percent more likely to be placed in special education;
--40 percent more likely to become a teen parent; and
--25 percent more likely to drop out of school.\1\
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\1\ ``Early Childhood Education in the U.S.,'' Save the Children
USA, (2015), Print.
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When America invests in kids, it is investing in its own economic
future as well. Nobel Prize-winning economist James Heckman released a
report in December 2016 indicating that the annual rate of return on
investments in high-quality early childhood development for children
from low-income backgrounds can be up to 13 percent, per child per
year, due to improved outcomes in education, health, sociability,
economic productivity and reduced crime.\2\
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\2\ Jorge Luis Garcia, James J. Heckman, Duncan Ermini Leaf, and
Maria Jose Prados, ``The Life-Cycle Benefits of an Influential Early
Childhood Program,'' The Heckman Equation, (2016), https://
heckmanequation.org/resource/lifecycle-benefits-influential-early-
childhood-program/.
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Despite this evidence, fewer than half of low-income children in
the U.S. have access to quality ECE programs. Without access to high-
quality early learning programs, children fall behind. Making matters
worse, many never catch up. By age five, more than half of all American
children are not prepared for school.\3\ For the benefit of our Nation,
it is critical to ensure that access to high-quality early education
and family engagement programs are available for all children,
regardless of their income.
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\3\ Julia B. Isaacs, ``Starting School at a Disadvantage: The
School Readiness of Poor Children,'' Center on Children and Families at
Brookings, (March 2012).
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We recognize that difficult budget decisions that need to be made.
However, balancing the budget on the backs of children, who are our
greatest investment and hope for the future, is not the right path
forward and it is not supported by an overwhelming majority of
Americans.\4\ The research is clear that doing so is against our
economic interest.
---------------------------------------------------------------------------
\4\ First Five Years Fund 2016 National Poll results- http://
ffyf.org/resources/2016-poll-research-summary/.
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save the children's work on early childhood education
Save the Children has years of experience and has long been a part
of the movement to provide high-quality ECE in the United States. To
advance early learning, Save the Children runs education programs for
children at home and in the classroom. Our child experts work to ensure
that our Nation's most under resourced children have the best chance
for success. Every day, we help children get ready to learn, do well in
school, and live healthy, active lives.
Save the Children's Early Steps to School Success (ESSS)
ESSS has been serving children in the United States since 2006.
During the 2015-2016 school year, 7,400 children and their families
across 14 States participated in Save the Children's ESSS program.
These children are growing up in rural poverty and facing many hurdles
due to their unique geographic locations. Despite their challenges, 87
percent of the children in the program score at or above the normal
range for vocabulary acquisition and enter kindergarten on par with
their middle-income peers, ready to succeed in school and in life.
Save the Children Early Head Start and Head Start Programs
Children who participate in federally-funded Head Start and Early
Head Start have a higher likelihood of graduating high school and a
lower likelihood of being charged with a crime than similar children
who do not participate in Head Start.\5\ Furthermore, participation in
high-quality Head Start programs has been shown to close over one-third
of the gap in test scores between children who participate in Head
Start and their more advantaged peers.\6\ Three-year-olds who
participate in Early Head Start perform significantly better on
cognitive, language and social-emotional measures than their peers.\7\
In 2016, through these programs, Save the Children directly reached
2,563 American children with these comprehensive early education
services.
---------------------------------------------------------------------------
\5\ Eliana Garces, Duncan Thomas, and Janet Currie, ``Longer-Term
Effects of Head Start,'' The American Economic Review, 92.4, (Sept.
2002), http://www.jstor.org/stable/3083291?seq=
1#page_scan_tab_contents.
\6\ Janet Currie and Duncan Thomas, ``Does Head Start Make a
Difference?'' The America Economic Review, (1995): 359, http://
www.econ.ucla.edu/people/papers/Currie/Currie14.pdf.
\7\ Early Head Start Benefits Children and Families, Early Head
Start National Resource Center, An Office of the Administration for
Children and Families, (June 2015), http%3A%2F%2
Feclkc.ohs.acf.hhs.gov%2Fhslc%2Ftta-system%2Fehsnrc%2Fabout-
ehs%23benefits.
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appropriations priorities
Child Care and Development Block Grant (CCDBG)
We are incredibly grateful for Congress' historic demonstration of
support for ECE programs in its fiscal year 2018 appropriations. The
unprecedented increase in funding for CCDBG in fiscal year 2018 showed,
once again, the bipartisan support of this program. To guarantee that
no children lose child care slots and providers can meet the quality
standards from the bipartisan 2014 reauthorization of CCDBG, SCAN
supports an fiscal year 2019 appropriations level of at least $5.8
billion for CCDBG. This funding level would ensure that Congress
follows through on its commitment under the Bipartisan Budget Act of
2018 to double CCDBG funding.
As the major Federal child care program, CCDBG provides vouchers
directly to working families to help them afford the licensed child
care provider of their choice. Unfortunately, it is only serving one
out of six children eligible for help. Federal and State child care
spending has fallen to an 11-year low and the number of children
receiving assistance is at a 16-year low. In 2017, only West Virginia
and South Dakota reimburse child care providers serving CCDBG-eligible
children at the federally recommended level.\8\ Increased funding
should be used to expand the supply of child care, upgrade and expand
existing child care centers, build new child care centers, cover start-
up costs for small family child care businesses, and improve the
quality of child care jobs--these jobs currently pay, on average, $9.62
an hour.\9\ When child care professionals are well-paid, are offered
professional development opportunities, and have good working
conditions, child care is more likely to be high-quality, safer and
more enriching.
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\8\ National Women's Law Center State Child Care Assistance
Policies 2017- https://nwlc-ciw49tixgw5lbab.stackpathdns.com/wp-
content/uploads/2017/10/NWLC-State-Child-Care-Assistance-Policies-2017-
1.pdf.
\9\ National Women's Law Center, Undervalued: A Brief History of
women's Care Work and Child Care Policy in the United States https://
nwlc-ciw49tixgw5lbab.stackpathdns.com/wp-content/uploads/2017/12/
final_nwlc_Undervalued2017.pdf.
---------------------------------------------------------------------------
Head Start and Early Head Start (HS/EHS)
HS/EHS are key to providing and expanding comprehensive early care
and education to our poorest children. We are grateful for the
substantial funding that HS/EHS received in fiscal year 2018
appropriations and, therefore, urge the subcommittee to support robust
funding in fiscal year 2019 of at least $11.3 billion to ensure the
new, outcomes-driven HS Program Performance Standards are implemented
properly. We also support the Early Head Start-Child Care Partnerships,
which have shown promising results in States and communities by
assisting in the expansion of high-quality early learning opportunities
for infants and toddlers. These partnerships build the capacity of the
community and providers, while also incorporating EHS' high standards.
HS has served over 32 million children and families in communities
across the country since 1965, and continues to serve nearly a million
children every year. At the current level of funding though, HS is only
able to serve two out of every five eligible preschoolers. Moreover,
some of the HS programs can only offer partial day and/or partial year
programming. These shortfalls in service delivery hamper the
development, interrupt stable care of children and add an extra burden
on caregivers to find alternative care options, which may be costly or
lower quality. Proposals for more HS programs to provide full-day,
full-year services would ensure our lowest-income children receive a
strong early learning experience. This change, however, will require
additional investments so that the increased hours and days of
programming do not result in cuts in the number of children
participating in HS, the number of staff employed by programs or impact
the quality of programming.
Preschool Development Grants (PDG)
States' commitment to increasing access to high-quality preschool
opportunities is extremely strong, as is their eagerness to partner
with the Federal Government in this endeavor. Therefore, Congress
should match States' enthusiasm and continue current levels of funding
of $250 million so that States have the resources they need to achieve
our shared goal of increasing access to high-quality preschool.
Unfortunately, fewer than three in ten 4-year-olds participate in a
high-quality preschool program. PDG funding encourages States to
establish or expand their own pre-kindergarten programs to serve more
children and bolster the quality of these programs. The current PDG
grantees are working in over 200 communities to expand access to high-
quality preschool opportunities in 18 States. Since its inception 4
years ago, this program has already served over 170,000 children who
otherwise would not have had access to preschool.
21st Century Community Learning Centers (CCLC)
We urge Congress to support this important program with funding of
$1.3 billion so that afterschool programming may continue and the
academic and developmental outcomes of children be improved.
Every day 11.3 million children are alone after school and are
unsupervised for an average of seven hours per week. Parents of more
than 19.4 million youth say their children would participate in an
afterschool program if one were available in their community. Programs
like CCLC help working families, keep young people safe during the
hours after school when juvenile crime peaks, and improve academic
achievement. The CCLC program supports community learning centers that
provide academic enrichment opportunities during non-school hours for
children, particularly students who attend high-poverty and low-
performing schools. The program helps students meet State and local
student standards in core academic subjects and offers students a broad
array of enrichment activities that can complement their regular
academic programs. Under the Every Student Succeeds Act (ESSA), funds
can also be used to pay for additional time, support and enrichment
activities during the school day. Without funding for afterschool and
summer learning programs, students will lose out on essential learning
opportunities that help them prepare for school, college, and careers.
Promise Neighborhoods
Created in 2010, Promise Neighborhoods is an innovative program
that continues to fund communities with demonstrated success as well as
award funding to new communities who create thoughtful plans for
change. This program is a strategic investment in high-needs
communities, so we ask Congress to make the smart investment of $78.3
million.
The Promise Neighborhoods program is authorized under the
Elementary and Secondary Education Act of 1965, as amended by ESSA.\10\
The program supports the implementation of innovative strategies that
improve outcomes for children in the Nation's most distressed
communities and build a continuum of supports for children. This
program increases the capacity of community leaders and organizations
to plan, implement and track progress toward specified outcomes. These
outcomes include students prepared to enter kindergarten, ready to
graduate and feel safe at school. The program also tracks 15 indicators
to measure success, including attendance, graduation and student
mobility rates, and participation in daily physical activity. This
holistic approach to improving the educational achievement of low-
income students ensures sustainable, community-driven changes and
interventions.\11\
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\10\ https://innovation.ed.gov/what-we-do/parental-options/promise-
neighborhoods-pn/.
\11\ https://www.brookings.edu/research/the-harlem-childrens-zone-
promise-neighborhoods-and-the-broader-bolder-approach-to-education/.
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conclusion
On behalf of Save the Children Action Network, and our advocates
across the country, I want to thank the Subcommittee for its continued
leadership ECE programs and its demonstrated bipartisan support of
these programs in the fiscal year 2018 appropriations process. I ask
that you now continue to make a robust investment in ECE in fiscal year
2019. We ask for your continued partnership in investing in children,
increasing access to opportunity, and ensuring a more prosperous
America for generations to come.

[This statement was submitted by Kris Perry, President, Save the
Children Action Network.]
______

Prepared Statement of the Scleroderma Foundation
the foundation's fiscal year 2019 l-hhs appropriations recommendations
_______________________________________________________________________

--$8 billion in program level funding for the Centers for Disease
Control and Prevention (CDC), which includes budget authority,
the Prevention and Public Health Fund, Public Health and Social
Services Emergency Fund, and PHS Evaluation transfers.
--A proportional fiscal year 2019 funding increase for CDC's
National Center for Chronic Disease Prevention and Health
Promotion (NCCDPHP).
--At least $39.3 billion in program funding for the National
Institutes of Health (NIH).
--Proportional funding increases for NIH's National Heart, Lung,
and Blood Institute (NHLBI); National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS);
National Center for Advancing Translational Sciences
(NCATS).
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
scleroderma community's priorities while working to craft the fiscal
year 2019 L-HHS Appropriations Bill.
about scleroderma
Scleroderma, or systemic sclerosis, is a chronic connective tissue
disease generally classified as one of the autoimmune rheumatic
diseases. The word ``scleroderma'' comes from two Greek words:
``sclero'' meaning hard, and ``derma'' meaning skin. Hardening of the
skin is one of the most visible manifestations of the disease. The
disease is also known as ``systemic sclerosis,'' a subset of the
disease in which internal organ systems (such as kidneys, lungs, heart,
and gastrointestinal track) and skin, or internal organ systems only,
are affected. . It is estimated that about 300,000 Americans have
scleroderma with one-third of those having the systemic form of the
disease. Scleroderma varies from patient to patient and often presents
with symptoms similar to other autoimmune diseases, making diagnosis
and treatment extremely complicated. There may be many misdiagnosed or
undiagnosed cases. Currently, there is no cure for scleroderma.
about the foundation
The Scleroderma Foundation is dedicated to the concerns of people
whose lives have been impacted by the autoimmune disease scleroderma,
also known as systemic sclerosis, and related conditions. The
Foundation's mission is to 1) support affected individuals, 2) promote
education and public awareness, and 3) advance critical research and
improve scientific understanding to improve treatment options and find
cures. The Foundation has a research program that funds clinical
research to find the cause and cure for scleroderma and related
conditions.
centers for disease control and prevention
Early recognition and an accurate diagnosis of scleroderma can
improve health outcomes and save lives. CDC in general and the NCCDPHP
specifically have programs to improve public awareness of scleroderma
and other rare, life-threatening conditions. Please increase funding
for CDC and NCCDPHP so that the agency can invest in additional,
critical education and awareness activities that have the potential to
improve health and save lives.
national institutes of health
NIH continues to work with the Foundation to lead the effort to
enhance our scientific understanding of the mechanisms of scleroderma
with the shared-goal of improving diagnosis and treatment, and
ultimately finding a cure. Since scleroderma is a systemic fibrotic
disease it is inexorably linked to other manifestations of fibrosis
such as cirrhosis and pulmonary fibrosis that occurs during a heart
attack. Scleroderma is a prototypical manifestation of fibrosis as it
impacts multiple organ systems. In this way, it is important to promote
cross-cutting research across such Institutes as NIAMS and NHLBI.
Please provide NIH with a significant funding increase to the
scleroderma research portfolio can continue to expand and facilitate
key breakthroughs.
--NIH continues to support the Trans-NIH Working Group on Fibrosis
which is working to promote cross-cutting research across
Institutes.
--NHLBI, which is leading Scleroderma Lung Study II, is comparing the
effectiveness of two drugs in treating pulmonary fibrosis in
scleroderma.
--NIAMS, is leading efforts to discover whether three gene expression
signatures in skin can serve as accurate biomarkers predicting
scleroderma, and investigations into progression and response
to treatment to clarify the complex interactions of T cells and
interleukin-31 (IL-31) in producing inflammation and fibrosis,
or scarring in scleroderma.
Patient Perspective
My constantly aching hands begged for mercy of just one day without
pain. My joints started to feel like they were being torn away from my
body. Anytime I touched something cold, my hands would tingle and burn.
Painful sores started appearing on my knuckles. You stole my skin color
and with that went my confidence. It was like I was turning into a
mummy as my skin tightened with collagen, day by day. I was beginning
to need help performing small tasks. Opening a water bottle or turning
a key in the door started to become difficult. Standing for long
periods of time made my hips radiate with pain. In 2012 I had to stop
working, at 24 years old. The definition of normal as I knew it was
being torn down and built into something completely new. And so was my
soul.
I now need help with everything! Getting dressed, washing my hair,
cleaning, doing laundry; pretty much anything I have to use my hands
for. You stole my independence. I had to learn to swallow my pride and
ask for help. It's a tough thing to do, especially when you're at an
age that's supposed to be your prime. Friends and family around me have
blossomed into caregivers and helping me has become second nature to
them. It's a beautiful thing when those surrounding you automatically
adapt to your disability. Support is the lifeboat that keeps me
afloat.''

--Excerpt from ``My Letter to Scleroderma''
Jessica Messingale
Coconut Creek, Florida

[This statement was submitted by Mr. Robert J. Riggs, Chief
Executive Officer, Scleroderma Foundation.]
______

Prepared Statement of the Sleep Research Society
fiscal year 2019 appropriations recommendations
_______________________________________________________________________

--SRS joins the broader medical research community in thanking
Congress for providing a $3 billion funding increase for NIH
(National Institutes of Health) for fiscal year 2018 and in
requesting a subsequent increase of at least $2 billion for
fiscal year 2019 to bring NIH's total funding up to $39.1
billion annually.
--Please provide proportional funding increases for all NIH
Institutes and Centers, including, particularly the
National Heart, Lung, and Blood Institute (NHLBI), which
houses the National Center on Sleep Disorders Research
(NCSDR). Sleep impacts nearly every body system, and many
diseases and disorders. As a result, almost every NIH
Institute and Center conducts sleep research, and NCSDR
helps coordinate sleep research activities across the
Federal Government.
--SRS joins the broader public health community in asking Congress to
provide CDC (Disease Control and Prevention) with a meaningful
funding increase for fiscal year 2019.
--Please also provide a dedicated, line-item appropriation of at
least $250,000 to ensure the National Health Sleep
Awareness Project can continue.
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee, thank you for considering the views of the Sleep Research
Society (SRS) as you work on fiscal year 2019 appropriations for sleep-
related medical research and public health programs. Most crucially,
thank you for providing meaningful investment in fiscal year 2018 for
NIH and CDC. It is the sleep community's hope that this important
prioritization of NIH and CDC activities will continue moving forward.
about srs
SRS was established in 1961 by a group of scientists who shared a
common goal to foster scientific investigations on all aspects of sleep
and sleep disorders. Since that time, SRS has grown into a professional
society comprising over 1,300 researchers nationwide. From promising
trainees to accomplished senior level investigators, sleep research has
expanded into areas such as psychology, neuroanatomy, pharmacology,
cardiology, immunology, metabolism, genomics, and healthy living. SRS
recognizes the importance of educating the public about the connection
between sleep and health outcomes. SRS promotes training and education
in sleep research, public awareness, and evidence-based policy, in
addition to hosting forums for the exchange of scientific knowledge
pertaining to sleep and circadian rhythms.
nih research activities
Over recent years, NIH has seen a meaningful infusion of essential
funding. This investment has improved grant funding pay lines, led to
significant scientific advancements, and helped to prepare the next
generation of young investigators. Due to quality science, the sleep
research portfolio has done well as a result of this additional
funding. In fact, NIH supported research was critical to the circadian
research project that received the 2017 Nobel Prize in Physiology and
Medicine. However, while the sleep portfolio overall is strong, one
area of potential improvement is investment in individual sleep
disorders.
The research portfolios for specific conditions at NIH including
Restless Legs Syndrome and Narcolepsy remain relatively modest. The
research done in these portfolios has a direct and sometimes immediate
impact on patient health and wellness. Moreover, additional resources
will support the full spectrum of medical research activities and
initiate important clinical and translational research activities that
will ensure breakthroughs in basic science become diagnostic,
treatment, and healthcare improvements for patients battling various
rare, complex, and debilitating sleep disorders.
On an annual basis, the Committee Report accompanying the annual
House L-HHS Appropriations Bill features important instructions that
emphasize the value and importance of sleep, sleep disorders, and
circadian research. In fiscal year 2018 alone, Committee
recommendations correctly identified the importance of this research to
cancer care, Alzheimer's, and other conditions. Please continue to
actively support various sleep research efforts moving forward.
cdc public health activities
For the past 5 years, CDC has supported the National Healthy Sleep
Awareness Project (NHSAP) with discretionary resources at about
$250,000 annually. Despite the severity and prevalence of sleep-related
health issues, NHSAP represents the only public health activity at CDC
devoted to sleep. This project has been highly successful and generated
numerous research advancements, professional publications, and peer-
reviewed articles.
Appropriators have been supportive of this program, but CDC is
likely unable to continue to engage in ongoing activities without
dedicated resources. Each year, NHSAP conducts surveillance, public
awareness, and professional education public health activities on a
variety of conditions. From a public health standpoint, NHSAP is both
cost-effective and incredibly valuable. Please ensure NHSAP's important
work can continue as you advance spending priorities for fiscal year
2019.
sam's story, courtesy of project sleep
Sam DeJesus, age 19, is about to finish his freshman at the
University of Massachusetts, Amherst. He was diagnosed with narcolepsy
and cataplexy at the young age of 10 (after 4 years of mysterious
symptoms developing including excessive daytime sleepiness and muscle
weakness with emotion, called cataplexy). To manage the terrifying and
serious symptoms of his condition, Sam takes a significant amount of
medication daily and nightly, while also taking several naps a day. He
is unable to function without medication, and misses activities
frequently due to daytime sleepiness. He is unable to drive, so he is
dependent on public transportation. Sam plans to major in anthropology
and is very proud to be a member of UMass Amherst's Minutemen Marching
Band, where he plays the mellophone. Advancements in research are
critical to improve the lives of people like Sam who are overcoming
invisible but real daily challenges of living with sleep disorders.

[This statement was submitted by Sean P.A. Drummond, PhD, Sleep
Research Society.]
______

Prepared Statement of the Society for Maternal-Fetal Medicine
On behalf of the Society for Maternal-Fetal Medicine (SMFM), I am
pleased to submit testimony in support of the important work related to
women's and infants' health being conducted at the U.S. Department of
Health and Human Services. As the rates of maternal mortality are
rising in the U.S., investment in these public health programs and
research opportunities will help address this important public health
problem. We urge Congress to ensure adequate funding in fiscal year
2019 for the Centers for Medicare and Medicaid Services (CMS), Centers
for Disease Control and Prevention (CDC), National Institutes of Health
(NIH), Health Resources and Services Administration (HRSA) and Agency
for Healthcare Research and Quality (AHRQ).Specifically, we support at
least an additional $2 billion for the NIH, including a proportionate
amount for the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD), $8.445 billion for the CDC, $660
million for the Maternal and Child Health Block Grant program at HRSA,
$175 million for the National Center for Health Statistics (NCHS), $454
million for AHRQ, and continued broad support for the U.S. Department
of Health and Human Services and programs relevant to pregnant and
post-partum women and their children.
Established in 1977, SMFM is the medical professional society for
obstetricians who have additional training in the area of high-risk,
complicated pregnancies. Our members see the sickest and most complex
patients, with the goal of optimizing care for pregnant women and their
children. The complex problems faced by some mothers may lead to death
as well as short-term or life-long problems for both mothers and their
babies. Such complications can be understood, treated, prevented and
eventually solved through research, quality improvement and sustained
healthcare across the lifespan with adequate research and public health
services.
Evidence to manage the complicated pregnancies is limited and more
clinical research is needed, particularly in light of the rising rates
of maternal mortality and morbidity. Basic research can lead to useful
discoveries, however, without clinical research these discoveries
cannot be translated into improvement in clinical care. Funding for
clinical research in pregnancy is limited and mostly dependent on the
NIH. We strongly urge Congress to prioritize clinical research in
pregnancy and guides agencies, including NIH, to fund such research to
decrease maternal mortality and morbidity.
Specific to the NIH, we support the following:
Task Force Specific to Pregnant Women and Lactating Women
(PRGLAC).--SMFM urges Congress to continue its strong support for the
PRGLAC Task Force, housed at NICHD. We look forward to the task force's
report to Congress in the fall of 2018 and encourage Congress to
carefully examine and support the recommendations contained in the
report. We hope that this will lead to broader inclusion of pregnant
and lactating women in research, so that lifesaving interventions and
treatments can be known for this population.
Preterm Birth.--Delivery before 37 weeks' gestation is associated
with increased risks of death in the immediate newborn period as well
as in infancy and can cause long-term complications. About 20 percent
of premature babies die within the first year of life, and although the
survival rate is improving, many preterm babies have life-long
disabilities including cerebral palsy, mental retardation, respiratory
problems, and hearing and vision impairment. Preterm birth costs the
U.S. $26 billion annually. Great strides are being made through NICHD-
supported research to address the complex situations faced by mothers
and their babies. One of the most successful approaches for testing
research questions is the NICHD research networks which allow
researchers from across the country to collaborate and coordinate their
work to change the way we think about pregnancy complications and
change medical practice across the country. These networks deal with
different aspects of pregnancy the problem of preterm birth and its
consequence.
Maternal-Fetal Medicine Units Network (MFMU).--We urge continued
support of the MFMU, established in 1986 to achieve a greater
understanding and pursue development of effective treatments for the
prevention of preterm births, low birth weight infants and medical
complications during pregnancy. The MFMU Network has identified new
effective therapies as well as practices that are not useful and should
be abandoned. It is the only national research infrastructure capable
of performing the much needed large trials that provide the evidence on
which sound medical practice is based. The MFMU Network is also the
ideal vehicle to collaborate with other national and international
research networks in order to improve maternal and child health. Since
its inception, the Network has made several exciting scientific
advancements and has been able to rapidly turn laboratory and clinical
research into diagnostic examinations and treatment procedures that
directly benefit those affected. There remains a need for more clinical
research and clinical trials to test new treatments and procedures
during pregnancy as well as in labor and delivery. There is little
incentive for industry trials in this space, and the MFMU Network
provides an infrastructure to be able to focus on therapies and
preventive strategies that have significant impact on the health of
mothers and their babies. Until new options are created for identifying
those at risk and developing cause specific interventions, preterm
birth will remain one of the most pressing problems in obstetrics, but
there are multiple other areas to look at including chronic conditions
during pregnancy and innovative interventions that will improve infant
and maternal mortality and morbidity.
PregSource.--We urge Congress to continue its support of NICHD's
PregSource\TM\ initiative, which recently launched. This crowd-sourcing
project allows pregnant women to track their health data from gestation
to early infancy and access evidence-based information about healthy
pregnancies, as well as will allow researchers to utilize aggregated
data and potentially recruit participants for clinical trials so that
knowledge gaps can be eliminated and care for pregnant and post-partum
women can be improved.
ECHO. SMFM urges Congress to continue support for the Environmental
influences in Child Health Outcomes (ECHO) initiative, which looks to
understand the effects of environmental exposures of child health and
development. ECHO will include pre-, peri- and postnatal outcomes,
which is essential to truly understand the health and development of
the population and how we can improve their health. It would also be
important to expand ECHO to include cohorts that start in pregnancy
given that the long term outcome of children is dependent on
intrauterine development.
All of US. We also encourage Congress' continued support for the
All of Us Research initiative, which is an effort to gather data from
over a million people in the U.S., specific to personalized medicine.
Given that women enrolled in All of Us are likely to become pregnant,
it is essential to ensure that this effort includes pregnancy as well.
Zika. Continued support for the NICHD for long-term follow-up and
study of women exposed to Zika and their infants who have been affected
by Zika is sorely needed. We urge Congress to continue to support
funding to the NICHD for research on the long-term follow-up and
effects of Zika on this population, as well as for public health
surveillance programs through the CDC to address Zika.
CDC.--CDC's Division of Reproductive Health (DRH) and National
Center for Birth Defects and Developmental Disabilities (NCBDDD) are
doing important work related to pregnant mothers.. An estimated 700 to
900 women in the U.S. died from pregnancy-related causes in 2016, and,
alarmingly, the United States is the only western nation in which that
number is rising. CDC support is vitally important to State-level
efforts to establish maternal mortality review committees whose inquiry
into maternal deaths will help us understand these poor outcomes for
women and their infants and effectively plan to reverse this trend.
HRSA.--HRSA's work is critical to maternal and child health. The
MCH Block Grant supports the reduction of infant mortality and improves
maternal health and wellbeing by serving more than 50 million people.
This program ensures that women and their children have access to
quality care and provides access to comprehensive prenatal and
postnatal care to women--especially low income and at-risk pregnant
women. HRSA's family planning initiatives ensure access to
comprehensive family planning and preventive health services to more
than 4 million people--reducing unintended pregnancy rates, among other
things. Finally, HRSA's support for the Alliance for Innovation in
Maternal Health (AIM) is working to reduce maternal mortality through
implementation of care bundles at the State and institutional level.
This work is actively reducing maternal mortality in key areas
including postpartum hemorrhage and hypertension, among others.
In conclusion, with Congress' support of vital HHS programs,
researchers, clinicians and patients can continue to peel away the
layers of complex problems of pregnancy that have such devastating
consequences and truly improve the health and wellbeing of mothers,
infants and children.

[This statement was submitted by Dr. Sean Blackwell, President,
Society for
Maternal-Fetal Medicine.]
______

Prepared Statement of the Society for Neuroscience
Mr. Chairman and members of the Subcommittee, I am Richard Huganir,
President of the Society for Neuroscience (SfN), and it is my honor to
present this testimony on behalf of the Society in strong support of at
least $39.3 billion in funding for the National Institutes of Health, a
$2.215 billion increase over fiscal year 2018 enacted figures. As a
professor at, and the director of, The Solomon H. Snyder Department of
Neuroscience at Johns Hopkins University, I understand the importance
of Federal funding for neuroscience research. In my laboratory, we use
Federal funding from NIH, including funding from Brain Research through
Advancing Innovative Neurotechnologies (BRAIN) Initiative, to expand
our knowledge about how our brain adapts and transmits information.
Specifically, we are building tools to help other researchers look more
deeply into the brain to determine what functions are involved in
learning and memory. While this research will not result in a cure
tomorrow, it has the capacity to help laboratories around the globe
gain a better understanding of how the brain works and provide a
foundation to launch research projects that were not possible before.
Funding for NIH is critical to understand the brain and nervous system.
Thanks to the efforts of this Subcommittee, NIH has experienced
significant funding increases in recent years. As the Subcommittee
continues its work for fiscal year 2019, we also ask that Congress work
to ensure that final fiscal year 2019 funding is approved before the
end of fiscal year 2018. Reliance on continuing resolutions in place of
regular appropriations has real implications for scientists working in
the field as it severely restricts NIH's ability to fund science. For
some, this means waiting for a final decision on NIH's funding before
knowing if their highly scored grant would be supported. This delays
the launch of research, hiring of researchers, and otherwise causes
meritorious science to sit on the shelf. For others, it means operating
a lab at 90 percent of the awarded funding until full-year
appropriations are finalized-similarly impacting hiring and causing
science to ``stop and start"-resulting in wasted effort, data, and
resources. There is no substitute for robust, sustained, and
predictable funding for NIH.
As a BRAIN funded scientist, I would also like to express the
Society's appreciation for your support of the BRAIN Initiative. The
BRAIN Initiative is a critical piece for promoting future discoveries
across neuroscience and related scientific disciplines (see an example
below). By including part of this funding in 21st Century Cures--and
note that it is only part of the funding that the BRAIN Initiative will
require--Congress is maintaining the momentum of this endeavor. Please
remember however, using those funds to supplant regular appropriations
would be counterproductive and not fulfill the intent of 21st Century
Cures.
The deeper our grasp of basic science, the more successful those
focused on clinical and translational research will be. Neuroscientists
use a wide-range of experimental and animal models that are not used
elsewhere in the research pipeline. Basic research creates discoveries-
sometimes unexpected-that expand our knowledge of biological processes.
These discoveries reveal new targets to treat brain disorders that
affect millions of people in the United States and beyond. Some recent,
exciting advancements include the following:
the impacts of neuroscience research
New Technologies Unlock the Brain's Mysteries
My own BRAIN Initiative supported research investigates how neurons
communicate and coordinate with each other to form circuits. Neurons
are constantly relaying information to each other through connections
called synapses. Neuroscientists previously discovered that multiple
kinds of internal cellular inputs influence the responsiveness of the
receiving neuron, strengthening or weakening the connection of
particular pathways. This process is essential for learning and memory
and is impacted in neurological and psychiatric disorders like
Alzheimer's disease, autism, and schizophrenia. And yet today,
monitoring more than one pathway at a time is a challenge.
Consequently, we have a limited understanding of the complexities of
how synaptic changes occur and are regulated. My laboratory is
developing new tools to simultaneously evaluate multiple types of cell
signaling to better understand brain activity during learning in awake,
behaving animals. These tools will enable us to develop a complex, and
more complete, picture of how learning and other higher brain functions
are achieved. The tools developed in my laboratory will also inform how
specific cell circuits involved in learning are affected in disorders
mentioned above. My hope is that the tools generated will help other
neuroscientists overcome some of the enormous challenges they face when
studying the brain.
Cutting-Edge Research on Addiction
NIH supported research is also addressing the Nation's addiction
crisis by determining how drug abuse affects the brain. Critically,
more than half of new drug users are teens. A teenage brain is
different than an adult's brain in many ways--it is both more malleable
and vulnerable to insult. Unprecedented in scale, the NIH Adolescent
Brain Cognitive Development (ABCD) study is tracking brain development
and substance use of over 10,000 U.S. children from childhood through
adulthood. The ABCD Research Consortium includes a data analysis center
and 21 research sites across the country to conduct assessments in
preadolescents prior to risk-taking experiences like drug
experimentation. This data was recently released and provides
researchers with a high-quality baseline to evaluate the effects of
teen drug exposure. Researchers will follow teens involved in the study
for 10 years and repeatedly evaluate brain structure, function, and
behavior to uncover critical risk factors and the developmental
consequences of drug misuse. The results will represent teens from all
demographics and inform strategies to prevent drug use and addiction
and guide future precision medicine-based treatments.
NIH is also assisting and supporting strategic efforts to combat
opioid addiction. NIH-funded researchers are developing next generation
pain relievers that target pain without eliciting euphoria, a key side
effect that contributes to addiction. Most current opioid medications
bind to several receptors and their interactions trigger pain relief
alongside a range of negative side effects. An example of this work is
a project funded by the National Institute on Drug Abuse, which
revealed the structure of a receptor in the brain, providing
researchers with a critical foundation for designing future non-
addictive pain medications. By understanding this receptor, researchers
can develop medications that selectively target specific actions in the
hope that these drugs will treat pain without leading to addiction or
risk of overdose, and be the precise, safe alternative to opioids that
our country so desperately needs.
the impact of neuroscience investment
While the research funded at the NIH is important to the future of
health, it is also a key economic driver. Most of the funding provided
to the NIH is dispersed to universities and research organizations
across the country resulting in significant contributions to local
economies. In fiscal year 2016, when Congress provided the first of its
$2 billion increases for NIH, 27,000 new jobs were created combined
with an additional $4 billion in economic activity. In 2016 alone, NIH
funding spurred almost $64.8 billion in economic activity
nationwide.\1\
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\1\ http://www.unitedformedicalresearch.com/wp-content/uploads/
2017/03/NIH-Role-in-the-Economy-fiscal year 2016.pdf.
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Congress's commitment to fund basic and translational neuroscience
creates the essential foundation to address diseases that strike nearly
one billion people globally and more than 100 million Americans every
year. Perhaps the most frightening number to consider, however, is $800
billion. This is the current estimate of the economic impact on
American families and the economy of diseases and disorders of the
brain.\2,3\ This number will only grow in the years ahead, into the
trillions, unless we act.
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\2\ Brain Facts: A Primer on the Brain and Nervous System. Society
for Neuroscience. 2012.
\3\ Gooch, C., Pracht, E., Borenstein, A. 2017. The burden of
neurological disease in the United States: A summary report and call to
action. Annals of Neurology, 81(4):479-484.
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For the United States to remain a scientific leader, Congress must
continue its commitment to funding basic research. If we delay or
decrease funding for research, other nations in Asia and Europe, who
are investing heavily, will catch up-and pass-us in the near future.
Meanwhile, we have seen a divestment from industry in neuroscience and
philanthropic support cannot fill the void. It is too expensive for
charities; it is too far from the profit centers for private industry.
Only Congress can take the steps necessary to ensure all Americans will
see progress in the development of cures, treatments, and methods of
prevention that will assure a better, healthier future.
On behalf of the Society for Neuroscience, we thank this
Subcommittee for its support and we look forward to working with you in
the months and years ahead.
[This statement was submitted by Richard Huganir, PhD, President,
Society for Neuroscience.]
______

Prepared Statement of Statement of the National Association of Foster
Grandparent Program Directors
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, thank you for the opportunity to submit this testimony in
support of fiscal year 2019 funding for the Foster Grandparent Program
(FGP), the oldest of the three programs known collectively as Senior
Corps, which are authorized by Title II of the Domestic Volunteer
Service Act (DVSA) of 1973, and as amended through the National Service
Act of 1990, and the Serve America Act of 2009 authored by Senator
Orrin Hatch and the late Senator Edward Kennedy. The Foster Grandparent
Program is administered through the Corporation for National and
Community Service (CNCS).
The Foster Grandparent Program began in 1965 with 800 volunteers in
45 institutions. Since that time, the program has grown across the
country to include 25,190 Foster Grandparents serving an average of
189,000 children annually through assignments in non-profit
organizations, schools, Head Start centers, and residential shelters.
The National Association of Foster Grandparent Program Directors
(NAFGPD) is a membership-supported professional organization
representing Foster Grandparent Programs nationwide, local sponsoring
agencies, and program participants.
I respectfully request that the Subcommittee provide the
Corporation for National & Community Service with 115.6 million in
fiscal year 2019. A funding level of $115.6 million would allow for the
volunteer stipend to be increased from its current rate of $2.65 per
hour to the authorized level of $3.00 per hour, the first increase in
17 years.
I would like to begin by thanking the distinguished Members of the
Subcommittee for your steadfast support of the Foster Grandparent
Program. No matter what the circumstances, this Subcommittee has always
been there to protect the integrity and mission of our program. Our
participants and the children they serve across the country are the
beneficiaries of your commitment to FGP, and for that we thank you.
NAFGPD was disappointed to learn that the President's fiscal year 2019
proposed budget once again called for not only the elimination of the
Foster Grandparent Program, but the Corporation for National and
Community Service. In this great time of budget uncertainty, our
programs and the communities they serve need your support now more than
ever.
For more than 50 years, Foster Grandparent Programs and their
network of local sponsors have made efficient use of Federal dollars to
make real changes in the lives of children and seniors through high
impact and measurable service assignments in communities across the
country.
The Foster Grandparent Program began in 1965 by Sargent Shriver as
part of President Lyndon Johnson's War on Poverty. The Foster
Grandparent Program provides opportunities for low-income Americans age
55 and older to serve children and youth in their community for an
average of 15-40 hours each week. Those who meet income limits (200
percent of poverty) qualify for the small, non-taxable stipend
reimbursement, transportation assistance, orientation, training
opportunities, and a daily meal. Preliminary results of a volunteer
study currently being completed by CNCS show that 70 percent of Senior
Corps volunteers who initially reported five or more symptoms of
depression reported fewer symptoms at the end of the first year of
service. (www.seniorcorps.gov/healthyvolunteers).
Every Foster Grandparent Program performs a 3-point National
Service Criminal History Check (NSCHC) on volunteers and staff. More
than just a simple background check, the NSCHC is performed by programs
navigating different laws in each State to comply with requirements,
keeping in mind that the safety of those we serve is paramount.
Throughout our long history, our program has received strong
bipartisan support. As First Ladies, Nancy Reagan championed the work
of Foster Grandparents, and Barbara Bush welcomed Foster Grandparents
to the White House, and even become an honorary Foster Grandparent
herself.
To further illustrate the value of an investment in the Foster
Grandparent Program, here are a few testimonials from grandparents and
school administrators (www.nationalservice.gov/programs/senior-corps/
senior-corps-stories)
For Grandpa Jerry, the kids he mentors through the Foster
Grandparent Program remind him of himself when he was young. ``I
understand their anger, I felt it as a kid. I understand their tears
because they were my tears too.''
``Expect the unexpected'' was the first piece of advice Foster
Grandparent, Al Hodder, received as he prepared for his first day
volunteering with English language learners at Portland High School.
Within minutes of entering the classroom and introducing himself to a
room filled with teenage students, a girl rushed over to him to ask for
help on a paper. Without having much background on the subject, Hodder
dove right in, helping her research, plan and edit her paper. From that
moment on he was hooked, enthusiastically anticipating each new day and
challenge as a Foster Grandparent.
``When we have Granny Audrey we can do a lot more independent work,
a lot more skill based, specific things that we just can't do in large
groups. It's great to have granny here,'' said kindergarten teacher
Christine Rhodes.
``I see her in the hallway. She's reviewing letters and sounds,
the kids just truly love working with her. They need her,'' said
Cullom. When she talks, the kids listen.
And at the end of the day, it's not about the lessons she taught
them. It's about the feeling she leaves them with, that only a
grandmother can give.
``I get just as much out of it as the children because they bring
so much love. And that's everything,'' Monroe said.
Foster Grandparent Programs represent the best in Federal
partnerships with local communities. Federal dollars flow directly to
local sponsoring agencies, which allows for local entities to determine
where the greatest need is in their community. Foster Grandparent
programs have forged partnerships with thousands of community
organizations that value and support the Foster Grandparent's service.
FGP has served local communities for over 50 years in a high quality,
efficient, and cost-effective manner, saving local communities money by
helping our older volunteers stay independent and healthy and not
dependent upon costly in-home or institutional care.
In closing, I would like to reiterate NAFGPD's request that the
Subcommittee provide at least $115.6 million for FGP in the fiscal year
2019 appropriations bill. This level of funding will provide Foster
Grandparent Program participants with their first stipend increase in
over 17 years and will result in valuable service to children who have
special or exceptional needs or who are at academic, social or
financial disadvantage. I want to thank you again for the
Subcommittee's support and leadership for Foster Grandparent Programs
over the years. NAFGPD believes that you and your colleagues in
Congress appreciate what our senior volunteers accomplish every day in
communities across the country.

[This statement was submitted by Jeanine Nemitz, President,
National
Association of Foster Grandparent Program Directors.]
______

Prepared Statement of Statement of the National
Alopecia Areata Foundation
the foundation's fiscal year 2019 l-hhs appropriations recommendations
_______________________________________________________________________

--At least $39.3 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increase for NIH's National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS);
the National Institute of Allergy and Infectious Diseases
(NIAID); and the National Center for Advancing
Translational Science (NCATS)
_______________________________________________________________________

Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the alopecia areata community as you work to craft the
fiscal year 2019 L-HHS Appropriations Bill.
about alopecia areata
Alopecia areata is a disfiguring autoimmune skin disease resulting
in the loss of hair on the scalp and elsewhere on the body.
It appears on the skin, most often as one or more small, round,
smooth patches of hair loss on the scalp and can progress to total
scalp hair loss (alopecia totalis) or complete body hair loss (alopecia
universalis).
Alopecia areata affects as many as 6.8 million in the U.S. with a
cumulative lifetime incidence of 2.1 percent and there is a large unmet
medical need for treatment options for both adult and children. The
disease onset often occurs at an early age and alopecia areata affects
as many as 1.2 million children under the age of 12 in the U.S.
Alopecia areata is known to have a profound impact on patients'
quality of life. The sudden onset, recurrent episodes, and
unpredictable course of hair loss can lead to difficulties at work, at
school and in relationships. Alopecia areata patients experience higher
rates of depression, anxiety and suicidal ideation, especially in
children and adolescents. The knowledge that medical interventions are
extremely limited and of minor effectiveness further exacerbates the
emotional stresses patients' experience. In recent years, scientific
advancements have been made but there are currently no FDA approved
treatments for this life-altering disease. The standard of care for
alopecia areata is grossly inadequate. There is no universally proven
therapy that induces and sustains remission and available treatment
options are of limited effectiveness, especially in more extensive
forms of the disease. The most commonly used off-label treatments such
as intralesional corticosteroid injections and topical immunotherapies
are painful, require continuous administration, and can have
prohibitive irritant and allergic side effects.
Alopecia areata takes a tremendous physical, emotional, and social
toll on affected individuals and patients are desperate to have
treatments approved that are safe and efficacious. While re-growing
hair or preventing hair loss may serve as important endpoints for
treatment development, the reduction in quality of life that alopecia
areata patients endure should be taken into account when establishing
an appropriate benefit-risk profile for potential treatments. Alopecia
areata should no longer be considered a cosmetic disorder, but a
disfiguring, psychologically devastating disease of the skin that
requires medical treatment.
about the foundation
The National Alopecia Areata Foundation (NAAF), headquartered in
San Rafael, California, supports research to find a cure or acceptable
treatment for alopecia areata, supports those with the disease, and
educates the public about alopecia areata. NAAF is governed by a
volunteer Board of Directors and two prestigious Research Advisory
Councils. Founded in 1981, NAAF is an influential foundation
representing people with alopecia areata. NAAF is connected to patients
through local support groups and also holds an important, well-attended
annual conference that reaches many children and families.
NAAF initiated the Alopecia Areata Treatment Development Program
(TDP) dedicated to advancing research and identifying innovative
treatment options. TDP builds on advances in immunological and genetic
research and is making use of the Alopecia Areata Registry, Biobank and
Clinical Trials Network which was established in 2000 with funding
support from the National Institute of Arthritis and Musculoskeletal
and Skin Diseases; NAAF took over financial and administrative
responsibility for the Registry in 2012 and continues to add patients
to it. NAAF is engaging scientists in active review of both basic and
applied science in a variety of ways, including the 2016 Alopecia
Areata Research Summit featuring presentations from the Food and Drug
Administration (FDA), the Patient-Centered Outcomes Research Institute
(PCORI) and NIAMS.
national institutes of health
NIH hosts a modest and growing alopecia areata research portfolio,
and the Foundation works closely with NIH to advance critical
activities. NIH projects, in coordination with the Foundation, have
successfully identified biomarkers and developed therapeutic targets.
In fact, researchers at Columbia University Medical Center (CUMC) have
identified the immune cells responsible for destroying hair follicles
in people with alopecia areata and have tested an FDA-approved drug
that eliminated these immune cells and restored hair growth in a small
number of patients. This huge breakthrough has led to NIAMS providing a
5-year grant to the researchers at Columbia to continue this work
through an Alopecia Areata Center for Translational Research. To
continue to build on this momentum, please provide NIH with meaningful
funding increases to facilitate growth in the alopecia areata research
portfolio.
patient perspective
My name is Miranda. As a small child, my mother braided my hair
before school in the morning, and once during this routine she spotted
a quarter-sized patch of hair missing from the back of my head.
Starting that day, my family began the route taken by so many others
who have encountered the abrupt diagnosis of alopecia areata. They took
me traveling across States, bringing me to grand rounds where dozens of
doctors examined me for hours, cutting my scalp for biopsies, giving me
injections, ointments, and experimenting with laser treatment at the
expense of my time learning in school and enjoying other activities. By
the end of these trials, I was a teenager, and so distraught over my
appearance and how others treated me that I became depressed and sick
to the point of hospitalization. Now, after years of therapy and
learning to manage wigs and make-up to hide my disease, I meet with
support groups to gain confidence and try to help others avoid a
similar downward spiral. If I had known that ``just hair'' would cause
my family and I a lifetime of grief, I would have done almost anything
to get it back.

[This statement was submitted by Dory Kranz, President and Chief
Executive
Officer, National Alopecia Areata Foundation.]
______

Prepared Statement of the Student Support and Academic Enrichment
Dear Senators Shelby, Leahy, Blunt, and Murray:
The undersigned national and State organizations write to request
that the Committee provide full funding for the Student Support and
Academic Enrichment (SSAE) grant program, found under Title IV, Part A
of the bipartisan Every Student Succeeds Act (ESSA).
The SSAE grant program, authorized at $1.6 billion for fiscal year
2019, supports three important education areas: (1) safe and healthy
students activities, such as providing comprehensive mental and
behavioral health services to students and implementing gun violence
prevention programs; (2) increasing student access to a well-rounded
education, such as: STEM; computer science and accelerated learning
courses; physical education; the arts; music; foreign languages;
college and career counseling; effective school library programs; and,
(3) providing students with access to technology and digital materials
and educators with technology professional development opportunities.
We are grateful that Congress recognized the importance of Title
IV-A and provided $1.1 billion in fiscal year 2018 and strongly urge
Congress to fully fund the SSAE program in fiscal year 2019. This will
provide districts enough funds and flexibility to make meaningful
investments in priority program areas determined by their needs
assessments. Additionally, this funding level obviates the need for a
competitive option and allows the flexible block grant to operate as
Congress intended, as a formula grant that benefits all districts
equitably.
On behalf of the millions of students, parents and educators that
we collectively represent, we urge you to please appropriate full
funding in fiscal year 2019 for the Student Support and Academic
Enrichment grant program under Title IV-A of ESSA and allow States and
districts to make meaningful investments in programs that are critical
to student success.
Sincerely.

national organizations

American Psychological

Association American School

Band Directors Association

American School Counselor Association

Collaborative for Academic, Social, and Emotional Learning (CASEL)

Committee for Children

Consortium for School Networking (CoSN)

Council of Administrators of Special Education

Council of School Supervisors and Administrators

Drum Corps International

Education Through Music, Inc.

EducationPlus

El Sistema USA

Futures Without Violence

Girl Scouts of the USA

International Society for Technology in Education (ISTE)

League of American Orchestras

Learning Disabilities Association of America

Little Kids Rock

Museum of Science, Boston

Music for All, Inc.

Music Teachers National Association

NAMM Foundation

National Association for College Admission Counseling (NACAC)

National Association for Music Education (NAfME)

National Association of Elementary School Principals (NAESP)

National Association of School Nurses

Phi Mu Alpha Sinfonia Fraternity

Progressive Music Quadrant

Research QuaverMusic

School Social Work Association of America

SHAPE America--Society of Health and Physical Educators

Software and Information Industry Association

The College Board

Trust for America's Health

VH1 Save The Music Foundation

state and local organizations

Alabama

Alabama Music Educators Association

Anniston City Schools

Conecuh County Board of Education

Dothan City Schools

Elmore County Public Schools

Lowndes County Public School District

Midfield City Schools Sheffield City Schools Talladega City Schools

California

California Music Educators Association

Organization of American Kodaly Educators

United Administrators of Oakland Schools

Western Association for College Admission Counseling

WURRLYedu

Colorado

Colorado Society of School Psychologists

Connecticut

Hartford Principals' and Supervisors' Association

Thompson Association of School Administrators

Delaware

Delaware Music Educators Association

Florida

Florida Association of School Psychologists (FASP)

Florida Music Education Association

Georgia

Georgia Association of School Psychologists

Georgia K12 CTO CoSN Chapter

Hawaii

Hawaii ACAC

Hawaii Society for Technology in Education

Hawaii Music Education Association

Idaho

Idaho Music Educators Association

Idaho School Psychologist Association

Illinois

Illinois Computing Educators (ICE-IL)

Indiana

Indiana Association of School Psychologists

Indiana Music Educators Association

Iowa

Iowa ACAC

Iowa School Psychologists Association

Kansas

Kansas Music Educators Association

Kentucky

Kentucky Assoc. for Psychology in the Schools (KAPS)

Kentucky Association for College Admission Counseling

Kentucky Music Educators Association

Louisiana

Louisiana School Psychological Association

Maine

Maine Music Educators Association

Maryland

Maryland Music Educators' Association

Maryland Society for Educational Technology (MSET)

Public School Administrators & Supervisors Association of Baltimore
City

Strathmore

Massachusetts

Boston Association of School Administrators & Supervisor

Michigan

Gordon Institute for Music Learning

Michigan Association for College Admission Counseling

Michigan Association for Computer Users in Learning (MACUL)

Michigan Association for Media in Education

Michigan Association of School Psychologists

Minnesota

Armstrong Boulevard Brass Quintet

Minnesota Association of School Psychologists

Minnesota Music Educators Association

Minnesota School Psychology Association

Mississippi

Mississippi Music Educators Association

Missouri

Midwest Education Technology Community (METC)

Missouri Association for College Admission Counseling

Missouri Association of School Psychologists

Missouri Music Educators Association

Montana

Montana Educational Technology Association (META)

Montana Music Educators Association

Nebraska

Nebraska Educational Technology Association (NETA)

Nebraska Music Education Association

Nebraska School Psychologists Association

Nevada

Nevada Association of School Psychologists

New Hampshire

New Hampshire Music Educators Association

New Hampshire Society for Technology in Education (NHSTE)

New Jersey

New Jersey Association of School Psychologists

New Jersey Music Educators Association

New Mexico

New Mexico Music Educators Association

Rocky Mountain Association for College Admissions Counseling

The New Mexico Society of Technology in Education

New York

New York Association of School Psychologists

New York State Association for Computers and Technologies in Education
(NYSCATE)

New York State School Music Association

Yonkers Council of Administrators

North Carolina

North Carolina Music Educators Association

North Carolina Technology in Education Society

North Dakota

North Dakota Association of School Psychologists

North Dakota Music Educators Association

Ohio

Ohio School Psychologists Association

The Ohio Association for College Admission Counseling

Oklahoma

Oklahoma School Psychological Association

Pennsylvania

Association of School Psychologists of Pennsylvania

Pennsylvania Association for Educational Communications and Tech
(PAECT)

Pennsylvania Music Educators Association

Rhode Island

Rhode Island Music Education Association (RIMEA)

The Rhode Island School Psychologists Association

South Carolina

Southern Association for College Admission Counseling

Tennessee

Shelby County Schools

Tennessee Association of School Psychologists

Tennessee Educational Technology Association (TETA)

Tennessee Music Education Association

Texas

Texas Association for College Admissions Counseling

Texas Association of School Psychologists

Utah

Cache County School District

Utah Association of School Psychologists

Utah Coalition for Educational Technology (UCET)

Utah Music Educators Association

Vermont

Vermont Association of School Psychologists

Vermont Music Educators Association

Virginia

Virginia Music Educators Association

Virginia Society for Technology in Education

Washington

Washington State Association of School Psychologist

West Virginia

West Virginia Music Educators Association

Wisconsin

Wisconsin Association for College Admission Counseling

Wisconsin Music Educators Association

Wisconsin School Psychologists Association

Wyoming

Wyoming Music Educators Association

Wyoming School Psychologist Association

______

Prepared Statement of Stull John and Mary Anne deg.
Prepared Statement of John and Mary Anne Stull
Please support the Fight against LE ``It destroys people and then
it kills you''
Mary Anne is 4th generation primary LE. The short story is like
most Primary LE . . . her young adult life was diagnosed as ``poor
lymph system'' and treated with diuretics. Years of that took its tool
to the point she had to stop and then the LE pushed into both legs and
the threat of infection compelled us to seek information outside our
healthcare provider.
After only one week of Internet searching it was obvious that Mary
Anne has LE and that there was alternatives.
We campaigned our insurance company and pressured our local health
provides to prescribe PT treatment. We live in a remote part of
Washington State so after a few visit I took on the treatment because
they felt she would have to have remain in bandages for the remainder
of her life. At his point LE has taken her youth and esteem. But we
agreed not to give in and continued the treatment, acquired a full body
pump and long list of support stocking and toecaps. We literally
squeezed out the fluid and broke down the fiber material.
So after 3 years we thought we beat it. We were looking for real
nylons and something that could make her feel good about herself.
Then it all feel apart.
Mary Anne came down with a viral infection in November of 2017 and
by December her leg began to swell from 37 cm to 55 cm. We went to our
healthcare provider and PT and we were told to keep bandaging and that
it happens. You see Mary Anne's LE keeps her from fighting the
infections. She is constantly fighting infections, oral, respiratory...
Always.
By January Mary Anne was short of breath, could no longer negotiate
the stairs and unable to have a night rest.
In March we were desperate and we went in to have a CT and discover
Mary Anne had been in AFIB for some time and we had to rush her to the
hospital.
We were lucky and well cared for. She lost 45 lbs. of fluid and yes
her leg returned. BUT she is still in AFIB trying to get her blood
thinners to work.
We know we are the lucky ones and feel so much pain for all the LE
sufferers.
I understand why doctors and administrator act the way they do
about patients. They see most illness as avoidable and a result of poor
health choices.
NO one gets LE because they are an alcoholic but LE can drive
people to abuse alcohol. Eating disorders do not cause LE but LE can
drive people to look like they are abusers.
Mary Anne didn't do anything to cause her LE but LE took her youth,
her self-esteem and almost her life and now besides the stocking and
all the sigma of LE she has to wear a defib vest .. No, LE can't kill
.. it's like RA it just eats away until you can't fight it.
If I were to address the doctors I would say . . . your oath is to
do no harm.. Recognize you have a bias.. and that bias injures others.
______

Prepared Statement of Teach For America
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia.
With nearly 28 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government.
These awards make it possible for people from all walks of life to
join TFA and many other AmeriCorps partner programs. TFA's partnership
with AmeriCorps has helped put tens of thousands of quality educators
in low-income urban and rural areas and developed a diverse pipeline of
leadership for our country. In fact, in 2017, our incoming corps was
about half people of color. In addition, one-third of corps members
were the first in their family to attend college and nearly 45 percent
received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. ED received nearly 5,000
applications but made only 156 grants. This is a total application-
success rate of only 3.1 percent. Given this demand from the education
field and EIR's focus on supporting programs with evidence of
effectiveness, we believe this increase in funding-which is consistent
with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Elisa Villanueva Beard, CEO, Teach
For
America.]
______

Prepared Statement of Teach For America--Chicago-Northwest Indiana
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019. As the Executive
Director of Teach For America-Chicago-Northwest Indiana I am pleased to
share the impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. Since Teach For America (TFA) launched
Chicago in 2000, our network of leaders has played a pivotal role in
transforming the education landscape in Chicago and Northwest Indiana.
From an original corps of 40 teachers, our region's network includes
more than 3,000 members. . More than 1,000 are highly effective
teachers, and more than 240 of our local members are school leaders
(principals, assistant principals, and deans), leading some of the
highest-performing schools serving low-income students throughout the
region. Collectively, we are impacting the lives of more than 125,000
low-income students across the region.
With nearly 28 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. Teach For America
and AmeriCorps alum, Michael Abello, a Chicago native, started his
career as a 2008 Teach For America- Chicago-Northwest Indiana corps
member teaching early childhood education at John M. Smyth Elementary.
During his time in the corps, Michael was one of five Teach For America
teachers across the country who earned the Sue Lehmann Excellence in
Teaching Award, an award celebrating teachers that foster substantial
academic and personal growth in their students through their innovative
work and practices in their schools. Michael is now the Principal of
Piccolo School of Excellence where he has been the school leader since
2014. Under Michael's leadership, Piccolo has become a nationally
competitive school achieving the highest rating according to the
district's School Quality Rating Policy, and he increased staff
retention from 68 percent to 92 percent. He has two current AmeriCorps
Teach For America corps members working at his school along with other
alums on his leadership team and veteran teacher staff. Prior to his
role at Piccolo, he was Assistant Principal at two other traditional
public schools, and he also spent 2 years on Teach For America's staff
coaching early childhood and lower elementary corps members.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2017, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1percent. Given this demand from the
education field and EIR's focus on supporting programs with evidence of
effectiveness, we believe this increase in funding-which is consistent
with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Aneesh Sohoni, Executive Director,
Teach For America--Chicago-Northwest Indiana.]
______

Prepared Statement of Teach For America--Connecticut
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019. As the Executive
Director of Teach For America-Connecticut I am pleased to share the
impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. We began our work in Connecticut in 2006.
Today, we have teachers in Bridgeport, Hartford, New Haven, and
Stamford. Altogether, we reach more than 6,500 students growing up in
low-income neighborhoods in Connecticut.
With nearly 28 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2017, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1 percent. Given this demand from
the education field and EIR's focus on supporting programs with
evidence of effectiveness, we believe this increase in funding-which is
consistent with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Nate Snow, Executive Director,
Teach For America--Connecticut.]
______

Prepared Statement of Teach For America--Memphis &
Teach For America--Nashville
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019. As the Executive
Directors for Teach For America-Memphis and Teach For America-Nashville
we are pleased to share the impact that Federal funding has on our
mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia.
In Memphis, TFA was established in 2006 and we now have more than
750 corps members and alumni working in Memphis. 72 percent of our 2016
corps members will continue to teach in Memphis for a third year, and a
full 80 percent will remain in Memphis. In addition, TFA-Memphis was
again named one of the top teacher prep programs in the State of
Tennessee this year--TFA-Memphis and TFA-Nashville were the only
teacher preparation programs to receive the top score of 4 in every
category.
In Nashville, TFA was established in 2009. We are embarking on our
10th year of working in partnership with the city and school district
to improve educational outcomes. We will start the 2018-2019 school
year with over 1,000 leaders in the TFA network in Nashville, including
over 170 corps members. Year over year, the State Board of Education
rates TFA-Nashville among the top provider of new teachers in the
State. This last year, TFA-Nashville was ranked the #1 overall teacher
preparation program, including providing the highest percentage of
highly effective teachers at the elementary level, the middle school
level, and for new Special Education teachers. We also have one of the
highest rates of providing teachers in ``highly demanded'' classrooms
such as STEM, SPED, and ELL classrooms.
With nearly 28 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
We would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government.
In Nashville, this award has helped hundreds of our corps members
become incredibly effective TFA alumni as they progress in their
careers. Today, teaching and school leadership are the most common
professions of our 750 alumni. In fact, TFA corps member and alumni
teachers compose nearly 10 percent of the overall teacher workforce in
Nashville, and our nearly 1 in 5 school leaders who predominantly serve
families in poverty are TFA alumni. Our TFA alumni school leaders, in
particular, are producing extraordinary academic results: Of the top 15
public middle and high schools without entrance requirements, TFA
alumni lead 13 of them. Similarly, TFA alumni lead 72 percent of the
top-achieving ``Level 5'' schools in Nashville.
In TFA-Memphis, 83 percent of alumni are working full-time in
education including 219 local teachers, 22 school leaders, and 7 school
system leaders. TFA-Memphis alumni lead the two schools noted locally
to have 100 percent of their graduating classes accepted into 4-year
programs and lead at every level of the highest performing charter
network in the city. Alumni also lead the district's strategy and
innovation office, which has worked to ensure clarity between the
district and its charter schools on accountability, as well as pioneer
a newly piloted student-based funding formula. And alumni lead local
organizations that work with students in a variety of ways to increase
college attainment and are succeeding in securing college acceptance
for nearly every student they work with and ensuring they stay in
college once enrolled. At every level of Memphis, you can find our
alumni working to create change for our students.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2017, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018.
This expansion includes teacher training institutes in Memphis and
Nashville.
In 2013, TFA-Memphis launched our regional teacher training
institute in partnership with Achievement School District, KIPP,
Memphis Business Academy, Gestalt Community Schools and University of
Memphis. This summer we will bring more than 150 corps members train
and teach in Memphis. In Nashville our regional institute launched in
2014 in partnership with Metro Nashville Public Schools and Lipscomb
University. This year, there will be over 90 corps members attending.
The Summer Academies (Nashville regional institute) has been a
resounding success in Nashville, with over 375 corps members educating
over 1,200 students. This has prevented summer learning loss (reversing
an average loss of 2 months of reading learning to gaining
approximately 2.5 months instead) and helped high school students stay
on track for on-time graduation by recovering 250 credit hours over the
last 2 years, for example.
In addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1 percent. Given this demand from
the education field and EIR's focus on supporting programs with
evidence of effectiveness, we believe this increase in funding-which is
consistent with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Athena Palmer & Ben Schumacher,
Executive Director(s), Teach For America--Memphis & Teach For America--
Nashville.]
______

Prepared Statement of Teach For America--Oklahoma City
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019. As the Executive
Director of Teach For America-Oklahoma City I am pleased to share the
impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. Since launching in 2009, TFA-Oklahoma has
brought over 800 corps members to teach in low-income classrooms across
80 schools throughout Tulsa and Oklahoma City, impacting over 15,000
students. These corps members work tirelessly to improve public
education in Oklahoma.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. One example of the
impact this support can have on the leadership trajectory of our
teachers is that of Jessica Johnson, a native Oklahoma City graduate
who joined the TFA corps and taught in Philadelphia in 2008. She is now
a principal with Thelma R. Parks Elementary School in OKC and oversees
the learning of 340 students. She is redefining what it means for a
school to be a model of community collaboration towards student growth
and achievement.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2017, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1percent. Given this demand from the
education field and EIR's focus on supporting programs with evidence of
effectiveness, we believe this increase in funding-which is consistent
with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Art Serna Jr., Executive Director,
Teach For America--Oklahoma City.]
______

Prepared Statement of Teach For America--Rhode Island
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019. As the Executive
Director of Teach For America-Rhode Island, I am pleased to share the
impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. Since 2010, TFA-Rhode Island has been working
to draw diverse leaders committed to educational equity in the State.
As a result, we have 53 corps members currently in the classroom and
more than 230 alumni living and working in the State-89 percent
directly in education or a field that impacts education.
With nearly 28 years of experience in recruiting and training
teachers, TFA's model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2017, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1 percent. Given this demand from
the education field and EIR's focus on supporting programs with
evidence of effectiveness, we believe this increase in funding-which is
consistent with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Kristine Frech, Executive
Director, Teach For America--Rhode Island.]
______

Prepared Statement of Teach For America--South Carolina
Thank you for the opportunity to submit testimony on the importance
of Federal funding for evidence-based teacher training and recruitment
programs at the U.S. Department of Education and the Corporation for
National and Community Service in fiscal year 2019. As the Executive
Director of Teach For America-South Carolina I am pleased to share the
impact that Federal funding has on our mission.
Teach For America (TFA) is a national non-profit that finds,
develops, and supports a diverse network of leaders who expand
opportunity from classrooms, schools, and every sector and field that
shapes the broader systems in which schools operate.
Since 1990, TFA has placed and supported over 56,000 teachers in
high-need schools throughout the country, with about two-thirds of our
alumni continuing to work in education. Today, we have a corps of
nearly 6,400 teachers in 51 urban and rural regions in 36 States and
the District of Columbia. Teach For America launched our efforts in
South Carolina in 2011 with 30 teachers, and we have worked diligently
to support highly qualified teachers throughout our State over the last
7 years. This year, Teach For America--South Carolina provided more
than 90 teachers to partner districts throughout the Pee Dee,
Orangeburg, and Lowcountry regions of the State. Ninety percent of our
teachers are leading classrooms in rural communities. Our partner
districts average a ``poverty index,'' a composite measure developed by
the South Carolina Education Oversight Committee of students eligible
for Medicaid and/or free or reduced price lunch, of 79.5 percent, and
go as high as 89 percent. In the short term, our Corps Members will
lead their students to make dramatic academic gains, putting them on
the path toward future success. In the long-term, our alumni will
continue to lead classrooms, work in district and school
administration, in policy, and throughout a variety of sectors within
our State. Our alumni base is growing. Currently, we have nearly 300
alumni living throughout South Carolina impacting our education system
from all sectors. In 2016, 81 percent of our alumni were working in
jobs in the education field, and 44 percent were continuing on as K-12
classroom teachers.
With nearly 28 years of experience in recruiting and training
teachers, our model is among one of the most rigorously evaluated
teacher preparation and leadership development programs in the country.
We rely on external researchers to analyze, validate, and identify
opportunities to improve our programmatic model. A growing body of the
most rigorous research demonstrates that our corps members and alumni
are making a positive impact on students, and we continue to seek
additional information to further strengthen our work.
We believe that the Federal Government should prioritize its
support for programs with evidence of effectiveness, and applaud the
Committee's commitment to results-driven initiatives.
I would like to highlight several of these programs and ask for
your continued support in fiscal year 2019.
Corporation for National and Community Service (AmeriCorps): $1.1 B/
$412 Million
Since 1994, more than 1 million individuals-including TFA corps
members-have served through national service programs like AmeriCorps.
Together, these individuals have provided more than 1.4 billion
hours of service to tackle the toughest problems in our communities.
Unfortunately, many individuals who want to serve, particularly as
educators, face significant economic barriers, including high student
debt and the cost of teacher certification, which make it difficult to
enter a lower-paying profession such as teaching. This is no different
for TFA corps members.
Fortunately, our teachers can use the AmeriCorps Education Award to
pay for college tuition or to pay down student debt. This award also
enables TFA corps members to defer their undergraduate loans for the
first 2 years of teaching and have the interest, which accrues during
those 2 years, paid off by the Federal Government. Brandon Johnson is
one of our Teach For America--South Carolina alumnus who was able to
dedicate himself to his passion for educational equity because of the
support he received through Teach For America.
A native of North Augusta, SC, Brandon graduated from the
University of South Carolina in 2014 and afterward joined Teach For
America--South Carolina. He fostered the growth of more than 300 middle
school students as a Corps Member in Marion County for 3 years. After
the corps, he earned his master's degree from Coastal Carolina
University and currently serves as an Assistant Principal in
Spartanburg School District 7. Most recently, he completed our
competitive Rural School Leadership Academy Fellowship, which provided
him specialized training and development to one day lead his own
school. Mr. Johnson, like so many of our Teach For America alumni,
draws inspiration from a deep belief that all students in South
Carolina deserve the opportunity to attain an excellent education.
These education awards make it possible for people from all walks
of life to join TFA and many other AmeriCorps partner programs. TFA's
partnership with AmeriCorps has helped put tens of thousands of quality
educators in low-income urban and rural areas and developed a diverse
pipeline of leadership for our country. In fact, in 2017, our incoming
corps was about half people of color. In addition, one-third of corps
members were the first in their family to attend college and nearly 45
percent received Pell Grants.
department of education
Supporting Effective Educator Development (SEED): $94 Million
TFA corps members receive 2 years of ongoing training and support
to prepare them to teach in low-income, high-need schools. The SEED
grant has supported this training by funding TFA's teacher-training
institutes, which all corps members must complete before they enter
their classrooms.
The education landscape has changed dramatically since TFA sent its
first cohort of teachers into the classroom 28 years ago. SEED support
has been critical to adjusting our training to meet the needs of
students and to align with what States and school districts need of
their teachers.
With the support of a 2013 SEED Grant, TFA launched its first
regional training institutes in 2014. These new institutes allowed
regions to build out their own locally driven teacher preparation in
which teachers receive training and teach summer school in the same
communities where they will serve. By tailoring training to the
specific needs of individual communities, we were able to expand
learning opportunities for local students, while also developing
teachers who were familiar with and invested in their local
communities. With the help of continued SEED funding in 2015 and 2017,
TFA has expanded from two regional institutes in 2014 to 13 in 2018. In
addition, five of our regions that serve predominantly rural
communities worked together to launch the Delta Collective Summer
Institute in Mississippi. Having a training experience grounded in the
unique needs and assets of rural communities will continue to help
foster a corps of teachers who are more engaged and invested in their
rural communities and can serve students living in these communities
more effectively.
The 2015 passage of the bipartisan Every Student Succeeds Act
(ESSA) expanded SEED eligibility to institutions of higher education,
which is why it is important that SEED funding is restored to the
fiscal year 2016 level of $94 million. Furthermore, the 2017 SEED grant
competition demonstrates a potential unintended consequence of this
policy change. Of the ten organizations awarded grants in 2017, 80
percent were institutions of higher education. Based on this, TFA is
concerned that the original Congressional intent of SEED may be
undermined. As the only Federal funding available to national non-
profits for improving teacher quality, SEED was created to support non-
profits with a national reach to broaden the impact of research-based
teacher preparation and development by bringing it to a national scale.
Further, we believe that the only way we can collectively solve for the
greatest educational challenges is to promote innovation from a
diversity of perspectives across the education field. It is our hope
that Congress and the Department of Education can ensure diversity of
SEED grantees and balance awards to institutions of higher education
and non-profits.
Education, Innovation and Research (EIR): $180 Million in Fiscal Year
2019
Education Innovation and Research (EIR) grants support new methods
to improve student achievement, increase high school graduation rates,
and improve college enrollment and completion. EIR is unique, as it
requires projects to have a promising model and/or high evidence of
effectiveness in order to win. In addition, grantees must fund an
independent evaluation.
Through a 2010 EIR Expansion grant, TFA was able to pilot new
strategies to attract a more racially and socioeconomically diverse
corps of teachers. In the first year of the grant, 34 percent of the
2011 corps identified as people of color, 30 percent came from low-
income backgrounds, and 22 percent reported being the first in their
family to graduate from college. In the last year of the grant, nearly
half of the 2015 corps identified as people of color, 47 percent come
from low-income backgrounds, a third report being the first in their
family to graduate from college. In addition, by 2015, 20 percent of
corps members had a background in science, technology, engineering, or
math (STEM).
Through a 2017 Early Phase grant, TFA is expanding its Rural School
Leadership Academy (RSLA) to serve more than 250 school leaders in
rural communities over the next 5 years. The RSLA is a 1 year
professional development program focused on growing the skills and
mind-sets necessary for individuals to become school leaders in rural
communities. The RSLA not only represents important professional
development for rural teachers, this program is a key tool in our work
to retain great talent in rural communities across the country.
Over the last 5 years, the U.S. Department of Education received
nearly 5,000 applications but made only 156 grants. This is a total
application-success rate of only 3.1percent. Given this demand from the
education field and EIR's focus on supporting programs with evidence of
effectiveness, we believe this increase in funding-which is consistent
with the President's budget request-is a wise investment.
Title IIA of the Elementary and Secondary Education Act: $2.35 Billion
in Fiscal Year 2019
Title IIA is the key fund in ESSA that supports teacher and
principal development. The recent enactment of ESSA provides important
new opportunities to use those funds more effectively to improve
teacher and principal quality, which helps students succeed.
conclusion
I appreciate the challenges that the Committee faces in setting
funding levels across a multitude of worthy programs, and I look
forward to working with you to meet the needs of America's students and
teachers.

[This statement was submitted by Troy D. Evans, Executive Director,
Teach For America--South Carolina.]
______

Prepared Statement of Terri Poore, Policy Director National Alliance to
End Sexual Violence
The National Alliance to End Sexual Violence (NAESV) is the voice
in Washington for the 56 State and territorial sexual assault
coalitions and local programs working to end sexual violence and
support survivors. The programs included in the Violence Against Women
Act (VAWA) are a vital part of local programs' work to support
survivors and end sexual violence. This testimony focuses specifically
on the Rape Prevention & Education Program (RPE), a VAWA program
located at the Centers for Disease Control, Injury Center, and the need
to increase funding for the program from $49.4 million to $150 million.
We are grateful to the committee for the $5 million increase for RPE in
the fiscal year 2018 Omnibus Appropriations Act bringing funding to
$49.4 million. However, increased funding is desperately needed.
RPE formula grants, administered by the CDC Injury Center, provide
essential funding to States and territories to support rape prevention
and education programs conducted by rape crisis centers, State sexual
assault coalitions, and other public and private nonprofit entities. In
the past few years, demand for programs funded by RPE have skyrocketed,
the evidence base has progressed significantly, the current
appropriation is very nearly the authorized level, and further
investment in the program is desperately needed. The #MeToo movement,
the national focus on campus sexual assault, and high-profile cases of
sexual violence in the media have increased the need for comprehensive
community responses to sexual violence but have also increased the
demand for prevention programs beyond providers' capacity.
A 2017 survey by NAESV revealed that almost 40 percent of programs
had a waiting list of a month or more for prevention programming.
According to a 2018 survey by the National Sexual Violence Resource
Center, the average percent of coverage of RPE-funded programs was 39
percent of the State. Nearly half of the States responding reported RPE
funding coverage in their State at 20 percent or less with rural areas
especially lacking in access to prevention.
If our children are to face a future free from sexual violence, RPE
must be increased. The RPE program prepares everyday people to become
heroes, getting involved in the fight against sexual violence and
creating safer communities by:
--Engaging boys and men as partners;
--Supporting multidisciplinary research collaborations;
--Fostering cross-cultural approaches to prevention; and
--Promoting healthy, non-violent social norms, attitudes, beliefs,
policies, and practices.
We know RPE is working.
A 2016 study conducted in 26 Kentucky high schools over 5 years and
published in American Journal of Preventive Medicine found that an RPE-
funded bystander intervention program decreased not only sexual
violence perpetration but also other forms of interpersonal violence
and victimization.
``The idea that, due to the effectiveness of Green Dot, ... there
will be many fewer young people suffering the pain and devastation of
sexual violence: This is priceless.'' Eileen Recktenwald, Kentucky
Association of Sexual Assault Programs
Across the country, States and communities are engaged in cutting-
edge prevention projects:

--Alaska's Talk Now Talk Often campaign is a statewide effort
developed in collaboration with Alaskan parents, using
conversation cards, to help increase conversations with teens
about the importance of having healthy relationships.
--Connecticut's Women & Families Center developed a multi-session
curriculum addressing issues of violence and injury targeting
middle school youth.
--Kansas is looking closely at the links between sexual violence and
chronic disease to prevent both.
--Maryland's Gate Keepers for Kids program provides training to
youth-serving organizations to safeguard against child sexual
abuse.
--Missouri is implementing ``Green Dot'' bystander education
statewide to reduce the rates of sexual violence victimization
and perpetration.
--North Carolina was able to ensure sustainability of its consent-
based curriculum by partnering with the public school system to
implement their sexual violence prevention curriculum in every
8th grade class.
--Oklahoma is working with domestic violence and sexual violence
service agencies, public and private schools, colleges and
other community based organizations to prevent sexual violence.
--Washington is implementing innovative skill building projects that
amplify the voices of historically marginalized communities,
such as LGBTQ youth, teens with developmental disabilities,
Asian American & Pacific Islander teens, & Latino parents &
children.
Why increase funding for RPE?
The societal costs of sexual violence are incredibly high including
medical & mental healthcare, law enforcement response, & lost
productivity. 2017 research sets the lifetime economic burden of rape
at $122 million per victim and also reveals a strong link between
sexual violence and chronic disease.
According to the National Intimate Partner and Sexual Violence
Survey (CDC, 2011):
--Nearly 1 in 5 women have been the victim of rape or attempted rape.
--Most female victims of completed rape (79.6 percent) experienced
their first rape before the age of 25; 42.2 percent experienced
their first completed rape before the age of 18 years.
--More than one-quarter of male victims of completed rape (27.8
percent) experienced their first rape when they were 10 years
of age or younger.
The national focus on campus and military sexual assault as well as
high profile cases of sexual violence in the media have increased the
need for comprehensive community responses to sexual violence but has
also increased the demand for prevention programs beyond providers'
capacity.
A Missouri Program Reported.--``The demand for our services has
increased about 18 percent both in 2014 and in 2015. Increased
awareness and increased need (crime) are most likely contributors to
this trend. There are limited resources available for prevention
education. In addition, new government requirements/laws, such as with
Title IX and PREA, have contributed to referrals to our organization.
Our organization always works to increase support from local resources,
but funding is extremely competitive and limited.''
A Massachusetts Program Reported.--``With Title IX in the news,
requests for prevention education have increased...We are saying no to
many requests for education because of capacity issues. We are unable
to build and sustain relationships with other underserved communities
because of a lack of capacity"
A Nebraska Program Reported.--``I am hugely dismayed at the lack of
funding for prevention...It's noble to provide direct services to
victims of sexual violence, but if we don't provide prevention monies,
then we are just a band-aid. It's terribly frustrating.''
Funding History: In the 2013 reauthorization of Violence Against
Women Act, Congress cut authorization for RPE from $80 to $50 million.
In fiscal year 2017, the program was funded at $44.4 million, a $5
million increase from fiscal year 2016. In fiscal year 2018, RPE was
funded in the omnibus at $49.4 million.
Please feel free to contact me with any additional questions at
[email protected].

[This statement was submitted by Terri Poore, Policy Director
National Alliance to End Sexual Violence.]
______

Prepared Statement of the Tourette Association of America
Dear Chairman Blunt, Ranking Member Murray and Members of the
Subcommittee:
The Tourette Association of America (TAA) would like to take this
opportunity to thank the members of the Subcommittee for the
opportunity to submit written testimony and for considering our request
for funding for fiscal year 2019. The Centers for Disease Control and
Prevention (CDC) play a pivotal role in educating the public. To that
end, the Tourette Syndrome Public Health Education and Research Program
at the CDC is critically important to the Tourette Syndrome (TS) and
Tic Disorder community. We respectfully request that you continue
funding the $2 million appropriation for the program in fiscal year
2019 Labor, Health and Human Services (LHHS), Education and Related
Agencies Appropriations. The program on TS is administered within the
National Center on Birth Defects and Developmental Disabilities
(NCBDDD) at the CDC, in partnership with the TAA. This program was
established by Congress in the Children's Health Act of 2000 (PL. 106-
310 Title 23) and is the only such program that receives Federal
funding for TS. With your support at the previously enacted level of $2
million, CDC can ensure critically necessary progress continues in the
areas of public education, research and diagnosis for TS and Tic
Disorders.
The TAA is the premier national non-profit organization working to
make life better for all people affected by TS and Tic Disorders. We
have served in this capacity for 46 years. Tics are involuntary,
repetitive movements and vocalizations. They are the defining feature
of a group of childhood-onset, neurodevelopmental conditions known
collectively as Tic Disorders and individually as Tourette Syndrome,
Chronic Tic Disorder (Motor or Vocal Type), and Provisional Tic
Disorder. People with TS and Tic Disorders often have substantial
healthcare costs across their lifespan for healthcare visits, special
educational services, medication, and psychological and behavioral
counseling.
The CDC Tourette Syndrome Website (https://www.cdc.gov/ncbddd/
tourette/data.html) on data and statistics states that data suggests
roughly 50 percent of children and teens with TS are not diagnosed.
Based on current research, it is our estimate that the combined total
of all school-aged children with TS or another related Tic Disorder is
approximately 1-in-100. Some studies include children with undiagnosed
TS and children with diagnosed TS with estimates that 1 out of every
162 children (0.6 percent) have TS. However, these numbers do not
include children with Chronic or Provisional Tic Disorders. Diagnosis
is often complicated. Among children diagnosed with TS, 86 percent have
been diagnosed with at least one additional mental, behavioral, or
developmental condition according to the CDC website. These co-
occurring conditions include Attention Deficit-Hyperactivity Disorder
(ADHD), Obsessive Compulsive Disorder (OCD), Autism, Oppositional
Defiance Disorder, anxiety, depression, learning difficulties among
others. Primary care, family physicians and pediatricians will often
diagnose the co-occurring condition(s) and not the TS or Tic Disorder
due to a lack of education around TS and Tic Disorders in medical
school. The CDC TS Program works to ensure primary care, family doctors
or pediatricians are equipped with the additional knowledge necessary
either to diagnose or to refer a patient to a pediatric neurologist for
assessment.
Education professionals often do not receive detailed instruction
on how to assess and accommodate students who may have TS and Tic
Disorders. A study published in the Journal of Developmental &
Behavioral Pediatrics and written in partnership between the CDC and
the Tourette Association of America, ``Impact of Tourette Syndrome on
School Measures in a Nationally Representative Sample'', found children
with Tourette were more likely to have an individualized IEP, have a
parent contacted about school problems and have incomplete homework as
compared to children without Tourette or a Tic Disorder. Additionally,
most children with TS had other mental, behavioral, or emotional
disorders or learning and language disorders. Educators spend a
significant amount of time with their students providing more
opportunities to assess symptoms and behavior over a longer period of
time. By increasing their knowledge base and understanding of TS, Tic
Disorders and associated co-morbidities, educators can refer students
for assessment by their physician or a pediatric neurologist and can
also better serve the needs of this population whose challenges are
unique to the disorder. Educators can then begin to work more closely
with medical providers to develop effective, individualized education
plans for the child.
TS and Tic Disorders are greatly misunderstood and often suffer
from misinformation and stigma. For example, Coprolaila is an extreme
and rare case of Tourette often sensationalized by the media. It is the
involuntary utterance of obscene and socially unacceptable words and
phrases. It is relatively rare in individuals with TS (only 10 percent
of those diagnosed have this symptom), is not required for diagnosis,
and does not persist in many cases. The CDC TS Public Health, Education
and Research Program provides important information on symptoms/
diagnostic criteria on their website and through the outreach program
educating the public and parents on TS and Tic Disorders to ensure a
better understanding which can lead to better diagnosis and earlier
treatment.
Delayed diagnosis or the lack of diagnosis can increase healthcare
costs with additional doctor visits and assessments, increase education
costs and delay important treatment and therapy for the patient. For
example, Comprehensive Behavior Intervention for Tics (CBIT) is a non-
medicated treatment consisting of three important components: training
the patient to be more aware of his or her tics and the urge to tic;
training patients to do competing behavior when they feel the urge to
tic; and, making changes to day-to-day activities in ways that can be
helpful in reducing tics. CBIT teaches people with TS a set of specific
skills they can use to manage their tic urges or behaviors without
having to use voluntary suppression. According to a study published in
the Journal of the American Medical Association in 2010, ``Behavior
therapy for children with Tourette disorder: a randomized controlled
trial'', there were significant reductions in tic severity and improved
ability to function in 52.5 percent of children who underwent CBIT
therapy in the study. The CDC Tourette Syndrome Public Health,
Education and Research Program strives to increase the understanding
and awareness among these critically important medical and education
professionals to increase the percentage of school aged children with
TS who are diagnosed, improve the timeframe from symptoms to diagnosis
and educate them about treatment options like CBIT.
The CDC TS program strives to learn more about TS, who it affects,
how symptoms appear and change, if tics are an early indicator for the
co-occurring conditions, the impact of TS across the lifespan of
patients and identifying factors that relate to better or worse
outcomes. This information is critical to improving treatments,
therapies and better understanding the relationship of the co-occurring
conditions. Consequently, increasing a better understanding and
awareness among the general public, government officials, doctors and
educators is extremely important for the many individuals, diagnosed
and undiagnosed, who live with TS and Tic Disorders.
We appreciate the opportunity to submit testimony and appreciate
your thoughtful consideration of our request. TAA urges you to provide
continued funding for fiscal year 2019 for the Tourette Syndrome Public
Health Education and Research Program at CDC's National Center for
Birth Defects and Developmental Disabilities at the previously enacted
level of $2 million.
______

Prepared Statement of Trust for America's Health
Thank you Chairman Alexander and Ranking Member Murray, and other
members of the subcommittee for providing this opportunity to provide a
written statement in support of fiscal year 2019 appropriations for the
Department of Health and Human Services. I'm John Auerbach, President
and CEO of Trust for America's Health (TFAH), a nonprofit, nonpartisan
organization dedicated to saving lives by working to make prevention of
illness and injury a national priority. I joined this dedicated
organization after working in public health for 30 years--as a city
health commissioner, a State public health commissioner and as the
associate director of the Centers for Disease Control and Prevention
(CDC).
Nothing reflects the values of a country more than the health of
its residents. And sadly, Americans are not as healthy as they could or
should be--in large part because we routinely underfund our Nation's
public health system, far too often at the expense of paying for
treatment and care in the healthcare system. The country needs a long-
term commitment to rebuilding the Nation's public health capabilities--
not just to filling some of the more dangerous gaps, but also to
ensuring that each community will be prepared, responsive, and
resilient when the unexpected occurs.
Thank you for providing the CDC funding in fiscal year 2018 for a
much-needed laboratory and the expansion of its work to address the
opioid epidemic, as well as other vitally important efforts. However,
much of CDC's important work remains dangerously underfunded, which
means our Nation is vulnerable to serious health threats. We share the
CDC Coalition's recommendation that Congress provide CDC with $8.445
billion in fiscal year 2019, which would put us on a path toward the
goal of providing CDC with a 22 percent increase in funding by fiscal
year 2022.
Approximately seventy-five percent of the CDC's annual budget flows
to your home districts and communities in the form of grants and
contracts to State, territorial, Tribal, and local public health
departments and community organizations, to conduct critical public
health and prevention activities upon which every American relies. This
includes funding to protect us from infectious disease (such as the
annual flu and the threat of outbreaks such as Ebola and Zika),
delivering immunizations to prevent childhood diseases and ensuring
preparedness for events such as the many natural disasters we faced in
2017.
In fact, 2017 was one of the worst years on record for natural
disasters, and our Nation's public health and healthcare systems were
on the front lines--staffing shelters, minimizing disaster related
injuries, infections and trauma and ensuring that the elderly and other
vulnerable populations were not overlooked. The Public Health Emergency
Preparedness (PHEP) Cooperative Agreement Program is the only Federal
program that supports the work of State and local health departments to
prepare for and respond to emergencies. This core emergency
preparedness funding has been cut by about 29 percent since the program
was established in fiscal year 2002. TFAH recommends $824 million for
the Public Health Emergency Preparedness Cooperative Agreement Program
to address gaps in State and local preparedness.
In addition, the Hospital Preparedness Program (HPP), administered
by the Assistant Secretary for Preparedness and Response (ASPR), is the
only Federal or State funding most States and cities receive to support
health system preparedness for disasters. The program has seen its
funding cut nearly in half since fiscal year 2003. TFAH recommends $474
million for the Hospital Preparedness Program in fiscal year 2019.
A sustained investment in public health and prevention is also
essential to reduce high rates of disease and improve health in the
United States. Twelve percent of CDC's budget comes from the Prevention
and Public Health Fund, with about $625 million annually directed to
State and local efforts to ensure access to vaccines, avoid healthcare-
associated infections, reduce tobacco use among teenagers, and prevent
diabetes, heart disease and cancer. We urge you to oppose further cuts
to the Prevention Fund.
Chronic diseases are responsible for roughly 80 percent of
healthcare spending in the United States and the causes are often
associated with the social, economic, and environmental conditions in
our cities, towns and counties. For example, poverty is strongly
associated with poorer health. In addition, people may adopt unhealthy
behaviors that directly lead to injury, illness and preventable deaths.
As a result, these diseases cannot be adequately addressed by
simply investing in the healthcare system to assist after people become
ill. CDC's National Center for Chronic Disease Prevention and Health
Promotion funds public and private partners to reduce the rates of
death and disability by promoting healthy behaviors and creating safer
conditions in people's homes, workplaces, neighborhoods and schools.
CDC also funds communities to develop culturally tailored approaches to
combat health disparities through the Racial and Ethnic Approaches to
Community Health (REACH) program. TFAH recommends $63.3 million for the
Division of Nutrition, Physical Activity, and Obesity at CDC's National
Center for Chronic Disease Prevention and Health Promotion, and $57.9
million for the REACH program.
One of the great contributions of the public health system is its
ability to provide useful information about whose health is at risk or
impaired and why. This allows us to invest and carefully target our
interventions and better understand what works to safeguard the public.
Supporting research and acting on the knowledge it generates helps
create safe, healthy environments that are free of environmental toxins
and other hazards. Without the right data, including those collected by
the National Environmental Public Health Tracking Network, researchers
and policymakers struggle to answer basic questions about life-
threatening health conditions. TFAH recommends funding the Tracking
Network at $40 million as a down payment toward fully funding the
Tracking Network within the next 5 years.
Finally, as you know, opioid misuse is a public health epidemic
that has touched nearly all of our communities. Drug-related deaths
have tripled since 2000. In 2016, 142,000 Americans died from
overlapping epidemics of alcohol- and drug-induced fatalities and
suicide--an average of one every four minutes. That's more than the
number of Americans who died in all U.S. wars since 1950 combined. Many
of these deaths are related to inappropriate prescribing practices and
the misuse of such prescription drugs. But they also stem from
circumstance when people self-medicate in response to despair caused by
trauma and other adverse conditions they've experienced in their lives.
The response to the epidemic certainly needs to include drug treatment,
overdose reversal and appropriate prescribing. But it also needs to
include educational and skill-building programs for children and
adults; early screening, support and referral systems in our schools
and communities and attention paid to the conditions that create the
stress and despair. With proper support, the public health sector can
identify and offer the proven interventions and effective policies to
reduce many of these factors.
TFAH recommends $625.4 million for CDC's National Center for Injury
Prevention and Control to expand its opioid overdose prevention effort
to all 50 States and the District of Columbia. We also encourage you to
provide at least $248.2 million for the Center for Substance Abuse
Prevention at the Substance Abuse and Mental Health Services
Administration, and $1.9 billion for the Substance Abuse Prevention and
Treatment Block Grant (SABG), which provides critical prevention
funding for the States. SABG alone accounts for approximately 32
percent of spending by State substance abuse agencies, yet until fiscal
year 2016 the SABG had been level funded for several years despite the
increased burden of substance misuse.
In closing, let me thank you again for your support of public
health in 2018 and in the past. Such support is vital to ensuring that
the Nation has a functioning public health infrastructure and the
American people are protected from avoidable threats. But I
respectfully encourage you to do more to restore the cuts of the past
and to build on the progress and track record of CDC and the public
health system at the State, local, territorial and Tribal levels. It is
only when we have strong and robust public health and preventive
efforts in every community that we will demonstrate that we are indeed
a Nation that prioritizes the health of its people.

[This statement was submitted by John Auerbach, President and CEO,
Trust for America's Health.]
______

Prepared Statement of the U.S. Hereditary Angioedema Association
summary of fiscal year 2019 recommendations
_______________________________________________________________________

--Provide the National Institutes of Health (NIH) with at least a $2
billion increase in discretionary funding for fiscal year 2019
to bring overall funding up to a minimum of $39.1 billion
annually. Continue to support advancement of the NIH hereditary
angioedema research portfolio as well as encourage activities
focused on rare disease research.
--Provide the Centers for Disease Control and Prevention (CDC) with a
meaningful funding increase to facilitate surveillance,
education, and awareness activities.
--Encourage the Centers for Medicare and Medicaid Services (CMS) to
prevent discrimination in health coverage by ensuring rare
disease patients do not face arbitrary access restrictions that
steer individuals and families into tax-payer funded
healthcare.
_______________________________________________________________________

Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to present the views of the U.S. Hereditary Angioedema
Association (HAEA) on funding for NIH and CDC during consideration of
fiscal year 2019 L-HHS appropriations. The HAEA is a patient-driven
organization comprised of affected individuals and their families. In
this regard, we would primarily like to recognize this Subcommittee for
its leadership and commitment to providing medical research and public
health programs with notable funding increases for fiscal year 2018.
This investment will have a tangible positive impact for patients by
significantly improving scientific inquiry and public health
activities.
The HAEA is a non-profit patient advocacy organization dedicated to
serving the estimated 6,000 HAE sufferers in the U.S. We provide a
support network and a wide range of personalized services for patients
and their families. We are also committed to advancing clinical
research designed to improve the lives of HAE patients and ultimately
find a cure.
Hereditary angioedema (HAE) is a painful, disfiguring,
debilitating, and potentially fatal genetic disease that occurs in
about 1 in 30,000 people. Symptoms include episodes of swelling in
various body parts including the hands, feet, face and airway. Patients
often have bouts of excruciating abdominal pain, nausea and vomiting
that is caused by swelling in the intestinal wall. The majority of HAE
patients experience their first attack during childhood or adolescence.
Approximately one-third of undiagnosed HAE patients are subject to
unnecessary exploratory abdominal surgery. About 50 percent of patients
with HAE will experience laryngeal edema at some point in their life.
This swelling is exceedingly dangerous because it can lead to death by
asphyxiation. The historical mortality rate due to laryngeal swelling
is 30 percent.
research through the national institutes of health
There was a time not long ago that HAE was a debilitating, and
often life-ending, chronic disease. In addition to the serious health
impacts, affected individuals suffered with trauma, anxiety, and PTSD
stemming from torturous attacks (and the uncertainty of when the next
attack might occur). Due to advancements in medical research, HAE
patients now have access to life-altering and life-sustaining
medications. Managing the disease properly now allows many the freedom
to work productively, live independently, and thrive.
While we are appreciative of the scientific progress, there is much
more that needs to be done. There is no cure of HAE, and treatment is
highly individualized. Little is known about the underlying science of
this disease and successful treatment often involves personalized care
and a customized therapeutic regimen prepared by a leading physician
expert (as well as trial and error).
NIH has a modest, but meaningful HAE research portfolio. Recent
annual investments will facilitate growth in this portfolio and have
led to important new scientific projects. The ongoing research at NIH
(and complimentary research through the Department of Defense Peer-
Reviewed Medical Research Program) will lead to a time when HAE
patients can move beyond their disease. A notable funding increase for
fiscal year 2018 and sustained increase for fiscal year 2019 will only
accelerate this process and lower health costs by improving care for
HAE patients.
cdc public awareness and education to prevent hae deaths
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, patients are able to piece together a family
history of mysterious deaths and episodes of swelling that previously
had no name. In some families, 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, the use of available
treatments can significantly improve quality of life. Physician
education and public awareness is needed to prevent unnecessary
suffering and ensure an early and accurate diagnosis.
proper health coverage and access
One of the most serious health issues impacting the HAE community
is the ongoing and increasing denial/restriction of payment assistance,
particularly charitable assistance. In both fiscal year 2016 and fiscal
year 2017, this Subcommittee asked CMS to provide a justification for
why rare disease patients would have the ability to receive charitable
assistance restricted, and encouraged the elimination of arbitrary
barriers to protect individuals that rely on life-sustaining
medication, including the HAE community. To our knowledge, no action
has been taken and no explanation was ever provided. Without charitable
assistance, many HAE patients have no other options to access
treatments. This restrictive situation continues to increment each year
and adversely impacts families affected by HAE. Please, once again,
encourage CMS to positively resolve this issue for rare disease
patients or otherwise provide substantive feedback.
mary gail runyan's story
My name is Mary Gail Runyan. I am a Hereditary Angioedema (HAE)
patient/caregiver. HAE is a very rare, severe, and potentially life-
threatening genetic condition that occurs in about 1 in 10,000 to 1 in
50,000 people. HAE symptoms include painful and disabling episodes of
edema (swelling) in all body parts including the abdomen. Throat
swelling can close the airway and cause death by asphyxiation.
I have lost a grandfather and two uncles due to asphyxiation caused
by Hereditary Angioedema. At the time of their deaths the much-needed
preventative and acute treatment for HAE was not available. This
certainly isn't the case now. Our HAE community is so fortunate to have
many different options available.
I have personally experienced several laryngeal attacks before the
availability of FDA approved treatments for HAE. These life-threatening
attacks made me realize how precious life truly is and how quickly life
can be taken away. A treatment plan for those of us who have HAE is
critical.
Because of advances in science and research in HAE, I no longer
live in fear of the ``what if's'' of HAE. I no longer spend countless
hours in the ER waiting to be treated for an attack or hospitalization.
I am no longer secluded in my home for days not wanting to be seen
because of disfiguring facial swelling caused by HAE.
I am pleased to announce that I can now prevent my attacks by self-
infusing at home, and I am living my life to the fullest! Nevertheless,
so much remains to be done! On behalf of my family and the HAE
community, I encourage the Committee to fund education, awareness and
research initiatives for Hereditary Angioedema.

[This statement was submitted by Anthony Castaldo, President, U.S.
Hereditary Angioedema Association.]
______

Prepared Statement of the United Tribes Technical College
United Tribes Technical College (UTTC) has for 49 years, and with
the most basic of funding, provided postsecondary career and technical
education and family services to some of the most impoverished high
risk Indian students from throughout the Nation. Despite such
challenges we have consistently had excellent retention and placement
rates and are fully accredited by the Higher Learning Commission. We
are proud of our role in helping to break generational poverty and in
helping to build a strong Indian Country middle class by training the
next generation of law enforcement officers, educators, medical
providers, and administrators; however, there is a long way to go and
we need to expand our efforts. We are governed by the five tribes
located wholly or in part in North Dakota. We are not part of the North
Dakota University System and do not have a tax base or State-
appropriated funds on which to rely. The funding requests of the UTTC
Board for fiscal year 2019 are:
--$10 million for base funding authorized under Section 117 of the
Carl Perkins Act for the Tribally Controlled Postsecondary
Career and Technical Institutions program. This is $500,000
above the fiscal year 2018 enacted level. These funds are
awarded competitively and distributed via formula. We would
like a change to the formula that is not so reliant on Indian
Student Count in order to avoid dramatic swings in annual
awards.
--$35 million in discretionary funds as requested by the American
Indian Higher Education Consortium for Title III-A (Section
316) of the Higher Education Act, $3.5 million above the fiscal
year 2016 level.
--Sufficient funding for the Pell Grant program to provide the
maximum grant. For fiscal year 2018, the Pell Grant program was
funded at a level sufficient to, when combined with mandatory
funding, provided the maximum Pell Grant award of $6,095.
Tribally Controlled Career and Technical Institutions. UTTC
appreciates the $1.2 million increase for Section 117 Perkins in fiscal
year 2018. We all realize the urgent need to better prepare a workforce
to meet industry and other emerging needs. We are part of that
undertaking, but need more resources to come closer to our potential.
Acquisition of additional base funding is critical. We struggle to
maintain course offerings and services to adequately provide
educational services at the same level as our State counterparts.
Perkins funds are central to the viability of our core postsecondary
education programs. Very little of the other funds we receive may be
used for core career and technical educational programs; they are
competitive, often one-time targeted supplemental funds. Our Perkins
funding provides a base level of support while allowing the college to
compete for desperately needed discretionary funds.
We highlight several recent updates of our curricula to meet job
market needs. First, at the certificate level, UTTC recognized the need
for more certified welders and heavy equipment operators in relation to
the oil boom and expanded these programs in response to the workforce
need. UTTC is now the only welding test site in a multi-State region
approved by the American Welding Society, and while the North Dakota
Bakken oil boom has diminished, these professions remain in demand. We
are now able to train students for good paying in-demand employment
with a focus on career rather than just a job. We are also partnering
with Lake Region State College of the North Dakota University System to
enhance our Justice programs through the sharing of faculty and
resources. This is in part in response to the unintended consequences
of the oil boom in North Dakota such as increases in crimes and
substance abuse (opioid, methamphetamine, and heroin) and the resulting
social ills such as human trafficking and domestic violence.
Funding for United Tribes Technical College is a good investment. We
have:
--Higher Learning Commission Accreditation through 2021. A campus
site visit held in April 2017 indicated we have a firm
foundation for furthering efforts as a data driven institution.
We offer 1 diploma, 4 certificates, 14 Associate degrees, and 4
Bachelor degree programs of study (Criminal Justice; Elementary
Education; Business Administration; Environmental Science and
Research). Business Management, Criminal Justice, and General
Studies are fully available and offered online. UTTC continues
to be the only TCU in the country approved by the Higher
Learning Commission to offer full programs online.
--Services including a Child Development Center, family literacy
program, wellness center, area transportation, K-7 BIE-funded
elementary school, tutoring, counseling, family and single
student housing, and campus security.
--A projected return on Federal investment of 20-1 (2005 study).
--From 2016-2017, UTTC had a fall to fall retention rate of 38.4
percent and a 2017 fall semester persistence rate of 49
percent. Of the 68 graduates in 2017, 45 students were
employed, for a placement rate of 66 percent. Additionally, 14
of those graduates continued their education.
--Students from 51 tribes were represented at UTTC during the 2016 -
2017 academic year.
--Our students are very low income, and 69.6 percent of our
undergraduate students receive Pell Grants in 2016-2017.
--An unduplicated count of 557 undergraduate degree-seeking students
and 4 non-degree seeking students; 1,382 continuing education
students; and 28 dual credit enrollment high school students
for a total of 1,571 of all students for 2016-2017.
--A critical role in the regional economy. A North Dakota State
University study reports that the five tribal colleges in North
Dakota made a direct and secondary economic contribution to the
State of $192,911,000 in 2016 and UTTC had a $59.6 million
dollar direct and secondary economic impact on the Bismarck/
Mandan communities for the same period.
Title III-A (Section 316) Strengthening Institutions.--The Title
III-A Strengthening Institutions funding is very important for all the
tribal colleges and we support the American Indian Higher Education
Consortium's request of $35 million for discretionary funding, $3.5
million above fiscal year 2018. This is in addition to the $30 million
in (Part F) mandatory funding. While these are not operational funds,
they are critical for developmental activities and provide an
opportunity for a modest amount of construction funding. Funds are
distributed via a formula with up to 30 percent of funds authorized to
be set-aside for competitive funding for facility construction and
maintenance. We share with the other tribal colleges serious issues of
inadequate physical infrastructure.
We are in need of additional student family housing as our waiting
list averages 49 student families over the course of the year. Students
who do not receive campus housing rent in Bismarck with average monthly
rent ranging from a one bedroom at $800/month to $1,250 for a three
bedroom apartment. Approximately 50 percent of students are housed in
the 100-year-old buildings of what was previously Fort Abraham Lincoln
and the other 50 percent of students residing in homes donated by the
Federal Government in 1973. These buildings require major
rehabilitation.
Title III funds provide much needed support to strengthen academic
offerings and infrastructure. Specifically, Title III has been
instrumental in the College's efforts to provide Baccalaureate
programs, online Associate programs, and increase the technology
infrastructure necessary to support student learning and campus
management functions. Professional development activities have been
supported by Title III resulting in enhanced intellectual and technical
capacity of faculty and staff.
Additional activities carried out with support of Title III funding
have been associated with increasing the College's Institutional
Resources capabilities in order to strengthen relationships with alumni
and forming relationships with organizations and individuals who may
become supporters of the College. With the current Title III award, the
College is anticipating expanding academic offerings through the
development of a Master's level program. The support of Title III will
be critical for attaining accreditation approval, program development,
and acquiring highly qualified faculty.
Pell Grants.--We support the fiscal year 2018 Appropriations
providing a maximum Pell Grant award of $6,095 (reflecting the combined
discretionary and mandatory funding) that that Congress last year
reinstated the year-found Pell Grant, thus allowing students the
opportunity to earn a third semester of Pell Grant funding during an
academic year. As noted above, 70 percent of our undergraduate students
receive Pell Grants. This resource makes all the difference in whether
many of our students can attend college.
Thank you for your consideration of the concerns of United Tribes
Technical College.

[This statement was submitted by Leander R. McDonald, PhD,
President, United Tribes Technical College.]
______

Prepared Statement of Voice for Adoption
Voice for Adoption (VFA) offers the following testimony requesting
increased funds for the following five programs under the supervision
of the Administration for Children and Families (ACF): Child Welfare
Services (CWS), Promoting Safe and Stable Families, the Adoption and
Kinship Incentives Fund, and the Adoption Opportunities Act.
In February, Congress passed the Family First Prevention Services
Act (PL 115-123). The legislation has potential to expand services that
can prevent the placement of children into foster care. It challenges
States to reduce the number of children and youth in congregate
placements. It will be a challenge to States to build the capacity and
access to services (mental health, substance use, and in-home services)
and to build the infrastructure of services and providers.
The challenge is against a backdrop of ever increasing foster care
numbers driven by the opioid epidemic in parts of the country. Since
2012 the number of children in foster care has increased by 10 percent
to 437,000 in 2016. VFA believes it is critical for Congress to fully
fund six programs to both build capacity to effectively implement the
Family First Act and help address the crisis many communities are
facing as foster care placement demands explode.
The Family First Act provides funding for services to prevent the
placement of children in foster care but does not fund services to
prevent child abuse and neglect. Child welfare strategy must
significantly increase funding for child abuse prevention.
VFA calls on Congress to fully fund Child Welfare Services from
$269 million to $325 million and Promoting Safe and Stable Families
from $99 million in discretionary funding to $200 million; increase
funding to the Adoption Opportunities Act to $60 million; fully fund
the Adoption and Kinship Incentives Fund at $75 million.
Impact of Opioids on Child Abuse and Neglect and Foster Care
Earlier this year HHS through the Secretary of Planning and
Evaluation conducted an analysis of child welfare data and supplemented
that work with field level research. Some of the key findings included:
--A 10 percent increase in overdose death rates correspond to a 4.4
percent increase in the foster care entry rate and a 10 percent
increase in the hospitalization rate due to drug use
corresponds to a 3.3 percent increase in the foster care entry
rate.
--While in past drug epidemics family and communities could fill some
of the gaps, today agencies report that family members across
generations may be experiencing substance use problems forcing
greater reliance on State custody and non-relative care.
--Parents using substances have multiple problems including domestic
violence, mental illness, trauma history, and addressing
substance abuse alone is unlikely to be effective.
--Substance use assessment is haphazard and there is a lack of
``family-friendly'' treatment that includes family therapy,
child care, parenting classes and developmental services.
--There is a shortage of foster homes and this is exacerbated by the
need to keep children longer in care which keeps existing homes
full and unable to accept new placements.
family first act
In fiscal year 2020, Families First will allow States to draw funds
for children and families at risk of foster care. States taking the
optional services will be limited to evidence-based services for
families that need intervention, post-adoption, and reunification
services. States must engage in and coordinate public-private agencies
experienced with providing child and family community-based services,
including mental health, substance use, and public health providers.
There is a limited supply of foster homes and family-based aftercare
support that can provide for post-discharge services for children
leaving institutional care. Child welfare agencies need to find and
support more family-based foster care homes. These four funds can help
States develop evidence-based services that will meet the laws ``well-
supported,'' ``supported,'' and ``promising'' standards and can assist
the coordination of community based behavioral health and human
services.
Child Welfare Services (CWS), Title IV-B part 1
We ask for $325 million for Child Welfare Services, the full
authorization and above the current total of $269 million. Starting in
fiscal year 2020, the Families First Act will allow States to draw
funds for children and families at risk of foster care. CWS is flexible
enough to allow States to test out and develop these services and
provide the research required to meet these evidence standards.
Promoting Safe and Stable Families (PSSF), Title IV-B part 2
We also asking for full funding of $200 million for Promoting Safe
and Stable Families. Currently this appropriations is set at $99
million despite being authorized at $200 million. These funds
supplement $345 million in mandatory funds divided between services,
the courts, substance use treatment grants and workforce development.
Appropriations to $200 million could be used for the four key services
under PSSF: family reunification, adoption support, family preservation
and family support. There are limited services for reunification
services for children who return to their families and the same is true
of post adoption services. These will all be eligible services under
Family First but there are few models now eligible for funding.
The Adoption Opportunities Act
The Adoption Opportunities program is the Nation's oldest adoption
program created to develop adoption promotion, post adoption services
and strategies. It has funded grants to reduce barriers to adoption,
reduce disproportionality, and more recently to promote adoptions of
older youth in foster care and develop post-adoption services. It is
funded at $39 million. We ask for funding at $60 million to develop
evidence-based models for post adoption services to families.
The Adoption and Kinship Incentive Fund
We ask for a continued funding level of $75 million for the
adoption incentive fund. The fund was created in the Adoption and Safe
Families Act (ASFA). In 2014 it became the Adoption and Legal
Guardianship Incentive Payments Program. We thank the Appropriations
Committee for partially addressing a recent shortfall in this incentive
fund with the 2018 appropriations of $75 million. In recent years HHS
has been not been able to fully award States because of a reduced
appropriation. As a result, HHS has made up the previous year's
shortfall with the following year's appropriations. The $75 million for
fiscal year 2018 was a significant step in addressing the shortfall of
2017. In the beginning years Congress would recognize this and provide
an extra amount of appropriation. Your 2018 appropriation reestablished
this practice. When HHS issues the latest awards for fiscal year 2018,
this September, there will have $25 million remaining. That will likely
fall short to fully fund the incentives. And we again ask for an
appropriation of $75 million to fully fund 2018 awards and have enough
in place for fiscal year 2019.
These funds are reinvested by States into adoption services. These
funds can be used by States to build both the evidence-based adoption
services include post-adoption counseling and services that can prevent
and reduce adoption disruption. VFA thanks you for this consideration
and stands ready to respond to your questions and concerns.

[This statement was submitted by Schylar Baber, Executive Director,
Voice for Adoption.]
______

Prepared Statement of the Washington State Long-Term Care Ombudsman
Programs
Chairman Blunt and Ranking Member Murray, I am pleased to present
this testimony on behalf of the nearly 72,000 residents in Washington
State's long-term care facilities and in collaboration with the
National Association of State Long-Term Care Ombudsman Programs
(NASOP). Thank you for your past support of State Long-Term Care
Ombudsman Programs (SLTCOPs) and the vulnerable citizens that it
serves, and for the $1 million increase for the program in the
Consolidated Appropriations Act, 2018. I submit this statement and the
funding recommendations for the fiscal year 2018 for SLTCOPs
administered through the Administration for Community Living, in the
Department of Health and Human Services to include:
--$5 million under the Elder Justice Act
--An additional $19.98 million for assisted living ombudsman services
under Title VII and,
--$17.78 million under Title VII of the Older Americans Act.
Long-term care ombudsmen help older adults and people living with
disabilities have a good quality of life, receive quality care, and be
treated with dignity. LTC Ombudsmen are paid professionals who recruit,
train and oversee teams of local volunteers who want to give back to
their communities. The advocacy we provide is the first line of
protection for thousands of elders living in licensed long-term care
facilities. Last year, volunteers in Washington donated approximately
39,000 hours of their time and skill to resolve complaints made to the
program with a success rate of nearly 92 percent resolved. We save the
State resources, by resolving complaints at the lowest level keeping
them out of the expensive regulatory and legal systems. However, like
our sister program's across the Nation, we are not able to keep up with
consumer needs and growing costs which is of concern giving the aging
of the baby boomer generation in the U.S.
In Washington and other States, the number of Assisted Living
Facility residents has grown tremendously. By the end of 2018,
Washington will have 2,000 additional assisted living facility beds but
no expansion in ombudsman services. The growing number of long-term
care residents makes it financially and resources to provide the cost
saving advocacy services provided by LTC Ombudsman Programs.
To alleviate the effects of diminished budgets and expanding long-
term care populations, we respectfully request the following funding to
support all SLTCOPs.
First, we request $5,000,000 to support the work of SLTCOPs under
the Elder Justice Act (EJC). This appropriation would allow States to
hire and train staff and recruit more volunteers to prevent abuse,
neglect, and exploitation of residents and investigate complaints.
However, the funds have been authorized since 2010, to date no EJC
funds have been appropriated for SLTCOPs. Second, we request
$19,980,000 to support SLTCOP work with residents of assisted living,
board and care, and similar community-based long-term care settings.
While the mandate to serve residents in assisted living facilities was
added to our mission Act, there have been no appropriations for this
function. Assisted living and similar businesses have boomed, but
SLTCOP funding has not increased to meet the demand and respond to the
industry boom.
Washington State has demonstrated leadership by reducing costs in
their Medicaid system, while improving consumer choice in community
based long-term. Assisted living has proven to be a viable option for
those who qualify for more costly nursing home care, but wish to
exercise their choice to live in assisted living. Assisted living
residents have complex medical needs, very much like the nursing home
residents of 20 years ago. Growth in the number of assisted living
facilities, in conjunction with complex needs of consumers and
diminished funding, threatens our Nation's Long-Term Care Ombudsman
Programs. These challenges to State Programs hinder our ability to meet
program requirements to provide regular and timely access to all
residents wanting long-term care ombudsman services. Current funding
levels preclude SLTCOPs from quickly responding to complaints and
monitoring facilities. Without our eyes and ears in these buildings,
residents are at risk of abuse, neglect, and serious financial
exploitation, and any number of violations to their rights. Our third
request is for $17.784 million, which is level funding for the core
program under Title VII of the Older Americans Act.
In addition to improving the quality of life and care for millions
of vulnerable long- term care residents, our work saves Medicare and
Medicaid funds by avoiding unnecessary costs associated with poor
quality care, unnecessary hospitalizations and expensive procedures and
treatments. Furthermore, nationally in 2016, nearly 7,331 volunteers
served in the SLTCOP. For every one staff ombudsman, six volunteer
ombudsmen serve residents. Ombudsman staff and volunteers investigated
199,493 complaints made by 129,559 individuals. Ombudsmen were able to
resolve or partially resolve 74 percent--or an ombudsman resolved three
out of every four complaints investigated.
In 2017, Washington State had 3,577 long-term care facilities with
approximately 70,000 residents. Our state program includes myself, and
two other full time staff, which has not changed much since 1989.
Thankfully, we have great partnerships with other not-for-profits to
operate local ombudsman programs, extending our reach into the most
isolated of nursing home residents in our rural communities. These
partners include seven Area Agency on Aging entities and three
Community Action Programs and in total, we employ 17.12 full-time
staff. Two national studies about the effectiveness about the LTC
Ombudsman Program (the Institute of Medicine, and the Bader Report)
have recommended that best practice be to employee one full-time paid
staff ombudsman for every 2,000 long-term care residents or licensed
beds. Washington State falls short of that goal at having only 49
percent of the needed paid staff.
Although we have a great team of paid and volunteer ombudsmen, our
program is still not able to cover every facility in our State. Nearly
half of the licensed facilities in our State never receive routine
visits by an ombudsman, which is the hallmark activity of the Program
and vital to building trusting and effective working relationships. We
are so busy responding to complaints and phone calls that we are not
able to conduct regular outreach, build presence in all facilities, and
make our services known to isolated residents and their family members.
We are overwhelmed with complaints about unwanted and unlawful
discharges, also known as, ``resident dumping'' by residents, their
loved ones and by hospitals, which involves expensive legal issues,
interactions with multiple health and long-term care community systems,
state entities and the courts.
Currently, Federal Older Americans Act funding comprises about a
third of the total funding required to maintain the Washington Long-
Term Care Ombudsman Program, at its current level, with the majority of
funding coming from our State General Funds. We understand that this
subcommittee faces a strained financial situation, but a continued
commitment to SLTCOPs protects the health and safety of millions of
older adults living in nursing homes and assisted living facilities. I
believe their protection should remain a high priority.
Demand for our services is growing. The number of complex and very
troubling cases that long-term care ombudsmen investigate has been
steadily increasing. In addition, there continues to be a disturbing
increase in the frequency and severity of citations for egregious
regulatory violations by long-term care providers that put residents in
immediate jeopardy of harm, which, unfortunately, is true for nursing
homes in my State. Ombudsmen are needed now more than ever in nursing
homes, assisted living, and similar care facilities where we are
required to serve.
The people who operate long-term care facilities have recognized
the value and benefit of having ombudsmen assist with staff training
and consultation. In order to improve advocacy and services available
to residents, our office and NASOP respectfully request the
aforementioned funding levels. We also appreciate that the testimony of
the Elder Justice Coalition also calls for these increases.
Thank you for your ongoing support.

[This statement was submitted by Patricia L. Hunter, Member,
National Association of State Long-Term Care Ombudsman Programs.]
______

Prepared Statement of World Vision US
Mr. Chairman, Ranking Member Murray, and members of the
Subcommittee, I am submitting this testimony for your consideration on
behalf of World Vision, one of the largest faith-based organizations
working in humanitarian relief and development. Specifically, I ask
that the Subcommittee seek to fund the Department of Labor's Bureau for
International Labor Affairs (ILAB) at $91.125 million, including
$58.825 million for the child labor grants program, $7.5 million for
the worker rights program, and $6.04 million for program evaluation.
World Vision US has more than one million private donors in every
State and Congressional district, partners with over 16,000 churches in
the United States, and works with a wide variety of corporations and
foundations. We are motivated by our Christian faith to serve every
child in need and their family; those of any faith, or none. We partner
with faith leaders throughout the world, equipping them to meet the
needs of their communities.
We are part of a global World Vision Partnership, which implements
programming to help children, families and communities through
international relief, development, and advocacy assistance. Although
private donors support the foundation of our work, the U.S. Government
is an invaluable partner as we work to achieve our broad goals for
children. We leverage this partnership to reach vulnerable children and
families in nearly 100 countries around the world, ensuring that the
precious resources of the American taxpayer are prudently used to
promote and protect the well-being of children and communities abroad.
We also use this partnership with the U.S. Government to leverage
private funding. We've successfully used grant funded programs to spur
private fundraising from both corporations and individuals and to
leverage and integrate resources in a way that ensures taxpayer dollars
go further. Through World Vision's work around the world, we see the
impact that violence and exploitation can have on children and their
families. 73 million children are in hazardous child labor which
prevents them from attending school and is harmful to their physical,
mental, and social development. Boys and girls around the world work in
agriculture, mining, quarrying, fishing, factories, domestic work, and
commercial sexual exploitation. 4.3 million children are in forced
labor, including in situations of trafficking. The work of Department
of Labor's Bureau of International Labor Affairs and its partners
protect children from exploitation and violence, allowing them the
opportunity to fulfill their full potential and contribute positively
to their communities and countries. This work also supports the U.S.
Government's Action Plan for Children in Adversity (APCA), which is a
whole-of-government framework for providing protective family care and
an environment for children that is free from deprivation,
exploitation, and danger. ILAB's anti-child and forced labor work
encourages global economic growth and addresses exploitative business
practices that undercut American workers and companies.
Our global economy feels the impact of violence against and
exploitation of children. The economic costs of child labor amount to
2.4-6.6 percent of the world's gross national income annually. The
global income lost by children out of school and instead engaged in
hazardous work amounts to $176 billion annually. Child labor impacts
the economies of U.S. Government trading partners and the investments
the U.S. Government makes in other areas of development and trade.
Child labor depresses wages and earning potential of future workers,
keeping economic growth and achievement of development objectives
stagnant. The cost to children, communities, and the global economy is
too great for the U.S. Government to step back from its leadership role
in ending child labor and forced labor.
Since 1995, the Department of Labor through the Bureau for
International Labor Affairs' Office of Child Labor, Forced Labor, and
Trafficking has worked with partners to directly impact the lives of
nearly two million children vulnerable to exploitative labor, combat
forced labor, and address worker rights in countries with which the
United States has trade agreements or preference programs. To address
child labor, ILAB programs take a holistic approach, including
community and government involvement to increase access to education
for children and support livelihood opportunities for families to meet
basic needs and reduce reliance on child labor. ILAB has been a leader
in the global fight to end child labor. Since 2000, child labor has
been reduced by half globally, in no small part due to the efforts of
the U.S. through ILAB.
World Vision is one of many ILAB partners working to address
hazardous child labor through education interventions, strengthening
family livelihoods, increasing accountability of employers towards
child labor standards, and sustainably building the capacity our local
and national governments of countries which the U.S. has trading
relationships with. For example, in Ethiopia, World Vision is working
to address exploitative child labor by helping youth ages 14-17 develop
marketable skills to secure appropriate work and serve as community
leaders. The project aims to reach 12,000 Ethiopian male and female
youth, both in school and out of school, and their 7,500 households. In
the Philippines, World Vision, through funding from the Bureau for
International Labor Affairs, implemented the ABK3 Livelihoods,
Education, Advocacy, and Protection to Reduce Child labor in Sugarcane
Areas (ABK3 LEAP) project from 2011 to 2015. The project reduced child
labor in target communities by 86 percent while providing education
opportunities and necessary resources for families to keep children out
of hazardous forms of work.
In the Philippines, the perceived (or real) lack of quality
education, difficulty staying caught up with class work, and economic
drivers contributed to child labor and school dropout. To address these
challenges World Vision worked with 12,310 students in over 250 schools
to help struggling learners revive their interest and improve their
participation in school through the Catch-Up program. Catch-Up
complemented learning in the classroom and was notably important during
the start of the sugarcane harvest season when students are more likely
to work in the field after school with some eventually dropping out of
school. The Catch-Up program trained peer teachers (Little Teachers) to
support students who were struggling in their studies and boosted
students' confidence in their skills while promoting engagement with
learning material in the classroom. As a result, junior high school
enrollment increased by 36 percent between 2012 and 2015. In the 2014-
2015 school year, school attendance increased and the number of
students dropping out decreased to nearly zero. The number of children
who did not repeat a year level in school increased by 10 percent in
2015. This innovative and effective outreach to struggling students
significantly contributed to the success of the project in reducing
child labor and increasing school enrollment.
While we acknowledge the constraints and challenges of our current
fiscal climate, ILAB's grant program supports economic growth for our
trade partners and ensures our trade partners are effectively
implementing labor standards. ILAB combines understanding the problem
of child labor and forced labor through research with targeted,
effective action to measurably reduce child labor and forced labor.
Past proposals to end ILAB's programming to combat exploitative child
labor would functionally end all U.S. programming to reduce
international child labor and would directly impact the roughly 150,000
children annually who benefit from ILAB funding. ILAB's grant program
not only benefits the children and families we serve, but creates the
opportunity for American workers and companies to compete more
effectively in the global economy.
As an organization that has worked with ILAB we can attest to the
rigor of their programs and the critical support that their staff
provide. ILAB is among the most rigorous donors that we work with,
requiring a level of evaluation to ensure effectiveness that is not
found in many other donors. They are setting a high standard for the
effective and targeted use of U.S. taxpayer dollars. After more than 20
years addressing child labor and forced labor, ILAB's work is an asset
to the U.S. Government and provides leadership in international arenas.
Presently, eight U.S. offices within the Department of State, USAID,
and the Department of Labor fund programs that focus or include a
component on ending violence against children globally. Almost 50
percent of spending in fiscal year 2015 to end violence against
children came from ILAB. As the subcommittee considers funding levels
for fiscal year 2019, we hope you will take into consideration the
impact of ILAB programs and the value they provide in building a better
world for children and for American workers and companies.
The number of children in child labor is declining but progress has
slowed significantly--child labor only declined by 9.7 percent from
2012-2016 compared to 22 percent during the 4 years prior. If progress
continues at the current pace, 121 million children will still be
engaged in child labor in 2025. It will take an extra push in the
coming years not only to renew the rate at which we fight child labor,
but also to reach the most vulnerable children, in the hardest to reach
places. I ask that the Subcommittee seek to fund the Department of
Labor's Bureau for International Labor Affairs at $91.125 million for
the Bureau of International Labor Affairs, including $58.825 million
for the child labor grants program, $7.5 million for the worker rights
program, and $6.04 million for program evaluation.
Thank you for the opportunity to provide written testimony and for
considering this request.

[This statement was submitted by Robert Zachritz, Vice President,
Advocacy and Government Relations, World Vision US.]
______

Prepared Statement of the Zika Coalition

Zika Coalition: Fiscal Year 2019 Federal Funding Priorities
------------------------------------------------------------------------
Fiscal Year 2019
Program Request
------------------------------------------------------------------------
National Institutes of Health (total)................ $39,300,000,000
National Institute of Child Health and Development... $1,531,000,000
National Institute of Allergy and Infectious Disease. $5,550,000,000
Zika in Infants and Pregnancy (ZIP) Study (NICHD/ $5,000,000
NIAID)..............................................

Center for Disease Control and Prevention
National Center for Birth Defects and Developmental $150,600,000
Disabilities........................................
Zika Response Activities............................. $10,000,000
National Center for Emerging and Zoonotic Infectious $615,000,000
Diseases............................................
Public Health Emergency Preparedness Cooperative $824,000,000
Agreement...........................................

Health Resources and Services Administration
Title V Maternal and Child Health Block Grant........ $660,000,000
------------------------------------------------------------------------

On behalf of the Zika Coalition, a group of organizations
representing patients, healthcare providers, persons with intellectual
and developmental disabilities, public health, and businesses, we urge
you to include ample funding to combat the Zika virus in the fiscal
year 2019 appropriations bills. Zika virus remains a significant public
health concern, particularly in areas impacted by hurricanes and
flooding in 2017.
Even with the number of reported infections dropping, Zika
continues to be a threat. Public health entities must educate their
communities on the danger of the virus and how to avoid it, while
State, local and tribal governments must implement and continue robust
vector control programs. At the same time, impacted children and their
families continue to need significant medical and educational
interventions and other supports. In order to address these complex
needs, we request that the following programs be funded at the levels
specified below in the fiscal year 2019 Labor, Health and Human
Services, Education, and Related Agencies (Labor-HHS) Appropriations
Bill.

--National Institutes of Health (NIH)--$39.3 billion, with $5.55
billion for the National Institute of Allergy and Infectious
Diseases (NIAID) and $1.53 billion for the Eunice K. Shriver
National Institute of Child Health and Human Development
(NICHD)

Thanks to previous Federal investment, NIH is making tremendous
progress in the prevention, diagnosis and treatment of the Zika
virus. NIAID continues its work on a vaccine and other
preventive measures, while NICHD is investigating how Zika
virus affects reproductive health and pregnancy. However, this
work is at a critical juncture and may not be able to continue
without sustained funding.

Within NIH, we specifically request $5 million in continued funding
for the Zika in Pregnancy (ZIP) Study, which is conducted as a
partnership between NICHD and NIAID. With previous Federal
funding, this multi-country study has enrolled over 5,000
pregnant women and their children. Sustained funding will allow
for continued surveillance of enrolled families to determine
the long-term impacts of Zika on child development.

--Centers for Disease Control and Prevention's (CDC) National Center
on Birth Defects and Developmental Disabilities (NCBDDD)--
$150.6 million

NCBDDD is the lead Federal agency carrying out critical
surveillance, research, education and prevention activities
concerning birth defects and developmental disabilities. As
such, it has played a critical role in developing our knowledge
about the virus and its impacts. Since the outbreak of Zika,
the Center has built rapid response birth defects surveillance
systems in 50 jurisdictions, coordinated efforts to educate
families and providers about preventing Zika infection and
caring for impacted families, and supported public health
research.

We are pleased that the President's Budget requested an additional
$10 million to carry out Zika-related surveillance and continue
the Zika pregnancy registry. We ask that these funds be
preserved as this work is critical in understanding the long-
term impacts of the virus.

--CDC's National Center for Emerging and Zoonotic Infectious Diseases
(NCEZID)--$615 million

NCEZID houses the CDC's program charged with detecting and
responding to infectious disease outbreaks, including Zika. The
Center has been critical in the fight against the Zika virus by
supporting local surveillance and vector control programs and
providing guidance on laboratory testing for Zika. Within
NCEZID, the Epidemiology and Laboratory Capacity (ELC)
cooperative agreement is central to ensuring State, local,
tribal and territorial governments have the necessary public
health workforce, disease detection systems, laboratory
capacity and health information dissemination abilities to
combat the Zika threat. In order to sustain this important
work, we ask that NCEZID be funded at $615 million, with $46
million designated for vector control.

--CDC's Public Health Emergency Preparedness Cooperative Agreement
(PHEP)--$824 million

PHEP supports State, local, tribal and territorial public health
departments' ability to respond to public health crises,
including Zika. Increased funds help communities maintain
systems to identify and investigate a Zika outbreak, coordinate
response with both government and non-government entities, and
purchase and distribute Zika Prevention Kits that include
insect repellent, window screens and other supplies. The
services provided through PHEP are especially important in
areas hit by natural disasters such as hurricanes and/or
flooding. The Zika Coalition requests $824 million for these
important response efforts.

--HRSA's Title V Maternal & Child Health Services Block Grant--$660
million

The Title V Maternal & Child Health Services Block Grant (Title V)
is distributed to 59 States and jurisdictions to address the
health needs of mothers, infants and children, including
children with special healthcare needs and their families.
Title V programs have supported the response to Zika by
disseminating public health information and prevention tools
and supplies to providers and the public; providing technical
expertise to support pregnancy registries and conduct ongoing
birth defects surveillance; and handling newborn screening
follow-up and connecting affected families with appropriate
community resources. The Coalition is grateful for the increase
in funding in fiscal year 2018; however, the President's budget
request would consolidate several other programs into the Block
Grant program, stretching limited resources even further, and
making it even more necessary to maintain funding in fiscal
year 2019. We urge you to increase funding for Title V in
fiscal year 2019.
The Zika Coalition stands ready to work with you throughout the
appropriations process to ensure that our country's resources to fight
the Zika virus and mitigate its impacts are adequately funded. For more
information, please contact Cynthia Pellegrini, Senior Vice President
for Public Policy and Government Affairs, March of Dimes, at
[email protected].
zika coalition members
AABB
American Association for Clinical Chemistry
American Association for Pediatric Ophthalmology and Strabismus
American Association of Colleges of Pharmacy
American Association on Health and Disability
American Clinical Laboratory Association
American College of Nurse-Midwives
American College of Preventive Medicine
American Congress of Obstetricians and Gynecologists*
American Medical Association
American Public Health Association*
American Sexual Health Association
American Society for Reproductive Medicine
American Society of Tropical Medicine and Hygiene
Association for Professionals in Infection Control and Epidemiology
Association of American Veterinary Medical Colleges
Association of Maternal & Child Health Programs*
Association of Public Health Laboratories*
Association of Reproductive Health Professionals
Association of Schools and Programs of Public Health
Association of State and Territorial Health Officials
Association of University Centers on Disabilities
Association of Women's Health, Obstetric and Neonatal Nurses
Avery's Angels Gastroschisis Foundation
Big Cities Health Coalition
Children's Environmental Health Network
Commissioned Officers Association of the U.S. Public Health Service,
Inc. (COA)
Community Action Partnership
Cooley's Anemia Foundation
Council of State and Territorial Epidemiologists
Easterseals*
Endocrine Society
Epilepsy Foundation of New Jersey
Every Child By Two
Family Voices
GBS|CIDP Foundation International
Genetic Alliance
Grifols
Healthcare Ready
Infectious Diseases Society of America*
Johnson & Johnson
March of Dimes*
National Association of County and City Health Officials*
National Association of Pediatric Nurse Practitioners
National Birth Defects Prevention Network
National Coalition of STD Directors
National Environmental Health Association*
National Foundation for Infectious Diseases
National Hispanic Medical Association
National Indian Health Board
National Mosquito Control Association
National Organization for Rare Disorders (NORD)*
Newborn Foundation
Novavax
OraSure Technologies
Organization of Teratology Information Specialists
Pregistry
Public Health Institute
Research!America
RESOLVE: The National Infertility Association
Society for Maternal-Fetal Medicine
Society for Women's Health Research
Spina Bifida Association
Teratology Society
The American Society for Clinical Pathology
The Arc*
The National Campaign to Prevent Teen and Unplanned Pregnancy
The Society for Healthcare Epidemiology of America
Trisomy 18 Foundation
Trust for America's Health*
University of South Florida Birth Defects Surveillance Program
*designates Steering Committee Member

[This statement was submitted by Cynthia Pellegrini, Senior Vice
President, Public Policy and Government Affairs, March of Dimes.]