[Senate Hearing 114-]
[From the U.S. Government Publishing Office]
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2016
----------
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 Association of Public Television Stations and
the Public Broadcasting Service
On behalf of America's 171 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 level funding of $445 million
in 2-year advance funding for the Corporation for Public Broadcasting
(CPB) in fiscal year 2018, $40 million for the Public Television
Interconnection System in fiscal year 2016 and $25.7 million for the
Ready To Learn program at the Department of Education in fiscal year
2016.
corporation for public broadcasting: $445 million (fiscal year 2018),
2-year advance funded
Local stations and PBS are committed to serving the public good in
education, public safety, civic leadership, and other essential fields.
Federal funding for CPB makes these services possible and is deserving
of continued support. The overwhelming majority of Americans agree. In
a bipartisan Hart Research Associates/American Viewpoint poll, nearly
70 percent of American voters, including majorities of Republicans,
Independents, and Democrats, support Federal funding for public
broadcasting. Additionally, polls show that Americans consider PBS to
be the second most appropriate expenditure of public funds, behind only
military defense. Over 70 percent of the Federal funding for CPB goes
directly to local stations, resulting in a successful public-private
partnership of locally owned and controlled, trusted, community
entities.
Education
Local public television stations are America's largest classroom,
meeting their communities' lifelong education 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 more than 1.6 million
K-12 educators and users and 39,000 homeschoolers access 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 impacts 30 million
students. Public television stations also operate virtual high schools
that bring high-quality instruction in specialized fields to remote
areas.
Through the American Graduate Initiative, CPB and public media
stations are working to confront the dropout crisis in America's high
schools by providing resources and services to lower the drop-out rate
in their communities. In addition, by operating the most comprehensive
non-profit GED programs in the country, public television stations have
helped hundreds of thousands of individuals get their high-school
equivalency certificate. Public television stations have also made it a
top priority to help retrain the American workforce, including
veterans, by providing digital learning opportunities for those looking
for training, licensing, and more.
Partners in Public Safety
Public broadcasting stations throughout the country are leading
innovators and irreplaceable partners to local public safety officers.
The public television interconnection system provides the redundant
path for the Warning Alert and Response Network enacted by Congress in
2006, through which local stations use their broadcast equipment to
help send emergency alert text messages to cell phone subscribers
through their providers--reaching citizens wherever they are. This
digital infrastructure also enables stations to provide State and local
officials with critical community emergency alert, public safety, first
responder and homeland security services and information during
emergencies. 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.
Supporting 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'' by airing State
government proceedings. Local stations also provide more public affairs
programming, local history, arts and culture, candidate debates,
specialized agricultural news, and citizenship information of all kinds
than anyone else.
Public Broadcasting is a Smart Investment
All of this is made possible by the Federal funding to CPB that
amounts to about $1.35 per year, per American. On average, this Federal
funding makes up approximately 15 percent of local stations' budgets.
However, for small and rural stations, whose local fundraising is more
difficult due to a smaller and often economically strained population
base, Federal funding can represent 30-50 percent of their total
budgets. It is also more costly to serve rural areas due to challenging
topography and distances between communities. As a result, public
broadcasters can be the only local broadcaster serving rural
communities. For all stations, Federal funding is the ``lifeblood'' of
public broadcasting, providing critical seed money to stations to build
additional support from State legislatures, foundations, corporations,
and ``viewers like you.''
Thus, for every dollar in Federal funding, local stations raise six
dollars in non-Federal funding, creating a strong public-private
partnership and an impressive 6 to 1 return on investment while
supporting approximately 20,000 jobs across America.
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, enables the leveraging of funds to
ensure a successful public-private partnership, provides stations with
the necessary lead time to plan in-depth programming and accompanying
educational materials, and establishes a firewall insulating
programming decisions from political interference--all of which
contribute to unprecedented levels of public trust. For the twelfth
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 station, no matter its size. Advance
funding also benefits the partnership between States and stations since
many States operate on 2-year 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 Civil War, Cancer: The Emperor of All Maladies and future programs
on the history of the Vietnam War and the history of country music. It
would be impossible to produce this in depth programming and the
educational materials that accompany them without the 2-year advance
funding.
public television interconnection system: $40 million
The public television interconnection system is the infrastructure
that connects PBS and national, regional and independent producers to
every local public television station 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 recognized the need for interconnection when it created
CPB and authorized it to ``assist in the establishment and development
of one or more interconnection systems'' in the Public Broadcasting Act
of 1967. As long as public television has existed there has been a need
for interconnection. As technology has advanced, public television has
worked to make the interconnection system more efficient while
increasing the timely access to programming for every station around
the country. Congress has always provided Federal funding for periodic
upgrades to and replacement of the interconnection system when it was
needed. The last two rounds of interconnection funding were provided by
Congress in fiscal year 1991- 1993 and fiscal year 2004-2007.
The Next Interconnection System
Current interconnection satellite leases, support contracts, and
existing financing expire on September 30, 2016. CPB and the public
television system are committed to ensuring that the next
interconnection system efficiently supports our universal service and
public service commitments, while taking advantage of technological
advances. PBS operates the interconnection system and has designed a
primarily terrestrial broadband-based interconnection system to replace
the aging, one-way ``push'' system that has limited distribution
efficiencies and cannot facilitate current and emerging applications.
The majority of content would be distributed through leased fiber-optic
data lines and would allow stations to connect to--and collaborate
with--one another, producers, and PBS. Minimal satellite capacity would
be retained for redundancy. For fiscal year 2016, $40 million in
interconnection is necessary for the down payment on a multi-year $197
million request. It is critical that Congress provide interconnection
funding in fiscal year 2016 to ensure that implementation of the next
interconnection system can begin in time to avoid any interruption of
service to the millions of Americans served by PBS and over 350
noncommercial educational stations across the country.
Ready To Learn: $25.7 million (Department of Education)
The Ready To Learn (RTL) competitive grant program 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.
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 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 came to the same conclusion. 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 level funding of $445 million
in fiscal year 2018 for the 2-year advance of the Corporation for
Public Broadcasting, $40 million in fiscal year 2016 for the Public
Television Interconnection System and $25.7 million in fiscal year 2016
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 level funding of $445 million for fiscal
year 2018, $40 million in fiscal year 2016 for the first year of a $197
million multi-year request to replace the current public television
interconnection system, and $25.74 million for the Department of
Education's Ready To Learn program.
Forty-seven years after passage of the Public Broadcasting Act,
this uniquely American public-private partnership is keeping its
promise to the American people--that we would provide high quality
trusted content that educates, inspires, informs and entertains. We
ensure a safe place where children can learn; high-quality educational
content for teachers in the classroom and children schooled at home;
reliable and trusted news and information; and emergency alert
services. Through our commitment to lifelong learning public media is
providing an education continuum from the youngest to oldest Americans.
Through the 1,400 locally owned and operated public radio and
television stations throughout the country, we support more than 20,000
local jobs in rural and urban communities. Over 70 percent of CPB's
appropriation goes directly to local stations who work in partnership
with their communities to best serve local interests and concerns.
Public media reaches nearly 99 percent of the American population--with
an overwhelming majority of them consuming public media throughout the
year.
The Federal appropriation is the essential investment that ensures
your constituents will have access to public media for free and
commercial free. President Ronald Reagan said, ``government should
provide the spark and the private sector should do the rest.''
America's local public media stations utilize the ``spark'' of the
Federal investment--approximately 10 to 15 percent of a stations'
budget--and raise the rest from their viewers, listeners, donors and
contributors. The result is a uniquely entrepreneurial system with a
track record of value delivered to all citizens.
Congressionally mandated studies have affirmed that although
private donations and existing funding sources account for the majority
of public media's funding, there is no alternative to Federal funding
when it comes to ensuring a strong, commercial free service comprising
high quality and trusted content for free to the American public.
Our trusted, noncommercial services available for free to all
Americans is especially important to those living in rural communities
where the local public media station is sometimes the only source of
broadcast news, information and educational programming. For these
smaller stations serving rural, minority and other underserved
communities, the Federal dollars provide much more than just a spark,
in some cases CPB's investment can represent as much as 40 percent of
their budget.
Public media's contribution to education--from early childhood
through adult learning--is well documented. We are America's largest
classroom, with proven educational content available to all children,
including those who cannot afford preschool. Further, our content is
repeatedly regarded as ``most trusted'' by parents, caregivers and
teachers.
CPB's work with the Department of Education's Ready To Learn
program is an excellent example of how public media brings together
high-quality educational content with on-the-ground work in local
communities. Twenty years ago, Congress recognized the reach and
potential of public media to help disadvantaged children become better
prepared to enter school. Over time, as technology has evolved, so have
we. For the past 5 years, public media has provided coordinated and
connected learning experiences for children across multiple platforms,
including TV, Internet, mobile, and in multiple settings, such as
classrooms, summer and after-school programs, and at home.
While innovation on multiple platforms is important, television is
still the primary tool to reach low-income and rural families. More
than 80 studies during the last several Ready To Learn competitive
grant rounds have proven that this program's content builds and
improves early literacy skills for high-need children, ages two to
eight. Continued funding will allow public media to carry-on this
critical work.
Public media is also differentiated from commercial media through
content that matters and engagement that counts. An example of this is
CPB's ``American Graduate'' initiative, which tells the story behind
the statistic of one million young people failing to graduate from high
school every year. Our stations told the stories and communities
throughout the country responded. Over the past 4 years more than 80
public media stations located in at-risk communities in 33 States have
worked with more than 1,400 national and community-based partners to
bring together diverse stakeholders and community organizations all
working toward a national graduation rate of 90 percent by 2020. We are
pleased to report that as a result of our and others combined efforts,
in 2014, the high school graduation rate rose to 85 percent for the
first time in our Nation's history.
Public media is utilizing today's technology to provide content of
value to millions of citizens. CPB strategically focuses investments
through the lens of what we refer to as the ``Three D's'' --Digital,
Diversity and Dialogue. This refers to support for innovation over
multiple platforms, including digital; content that is for, by and
about Americans of all backgrounds; and services that foster dialogue
between the American people and the public service media organizations
that serve them.
The Public Broadcasting Act ensures diversity in programming by
requiring CPB to fund independent and minority producers. CPB fulfills
this obligation, in part, by funding the Independent Television
Service, the five Minority Consortia entities in television (African
American, Latino, Asian American, Native American and Pacific
Islander), several public radio consortia (Latino Public Radio
Consortia, African American Public Radio Stations, and Native Public
Media) and numerous minority public radio stations. In addition, CPB,
through its Diversity and Innovation fund, makes direct investments in
the development of diverse primetime and children's broadcast programs
as well as innovative digital content.
Thomas Jefferson said, ``An informed citizenry is at the heart of a
dynamic democracy,'' and our commitment to early and lifelong learning,
available to all citizens, helps strengthen that ideal. As newspapers
across the country have scaled back their operations, public media has
stepped into the void. Local stations have been working to fill the gap
by building creative ventures and partnerships. CPB has helped these
endeavors by funding 11 journalism collaborations comprised of 57
stations. These regional reporting hubs are providing their communities
with much-needed local, regional and statewide coverage.
Today's journalists work in a much different media and political
environment than in years past. The January attacks by radical
Islamists on the staff of Charlie Hebdo and others in Paris have shown
us that our freedom of expression cannot be taken for granted. In an
effort to underscore our support of freedom of the press and freedom of
expression, CPB announced an investment of several million dollars to
support four of public media's flagship journalism enterprises--
FRONTLINE, NPR's International Coverage, PBS NewsHour, and PRI's The
World.
The work of public media goes beyond broadcast. Public television
and radio stations are increasingly effective partners with State and
local public safety, law enforcement and first responder
organizations--connecting these agencies with one another, with the
public, and with vital data-casting capabilities in times of crisis.
CPB is supporting stations, both financially and by defining best
practices, so that they may create more public-private partnerships
locally and regionally, bringing more services and benefits to their
communities. For example, CPB's Veterans Coming Home project builds on
public media's strengths to address the needs of veterans in local
communities. Stations and their partners are communicating veterans'
stories through award winning reporting, documentaries and online
content; convening local events such as job fairs and town hall
meetings that connect veterans with resources; and collaborating with
local organizations to identify local services available to veterans.
Ever since the FCC set aside a block of spectrum exclusively for
non-commercial educational use in 1953, public media has been
efficiently utilizing this spectrum as a vehicle to serve families all
across America. The FCC's upcoming spectrum incentive auction and
subsequent repacking process present a unique set of challenges for
public media. The Federal appropriation will allow CPB to adequately
advise and support stations as they prepare for this unprecedented
spectrum incentive auction and the repacking process that will follow.
interconnection
As we near the expiration of our current Interconnection System
satellite leases in September 2016, we must look ahead to the system
that will serve public television stations for the next decade.
Congress recognized the need for an interconnection system in 1967 when
it passed the Public Broadcasting Act; it has maintained that
commitment ever since with the funding of five generations of
interconnection systems. Since 1988, Congress has supported a separate
appropriation for public media's interconnection needs.
Interconnection is the backbone of public broadcasting. It is used
by PBS and many other public television entities to distribute
television content and related materials to non-commercial, educational
television licensees across the entire country. Without it, there is no
nationwide public media service.
Additionally, interconnection also serves as the failsafe mechanism
for Presidential emergency alerts. Transmitting across 367 stations in
all States and territories, PBS' Warning Alert and Response Network
provides redundancy which enables wireless carriers to bypass network
congestion caused by emergencies. The next interconnection system will
employ two-way capability, paving the way for enhanced collaboration
during times of emergency.
conclusion
Public media's treasure trove of content and services is available
to all Americans for about $1.35 per American per year. As a result of
the Federal investment, public media stations are training teachers and
helping to educate America's children. We are providing journalism
beyond just a sound-bite that truly provides citizens with the
information they need to make informed decisions about local issues; to
have in-depth knowledge through fact based reporting about national and
global news. We make the arts accessible to all Americans; and provide
emergency alert services for communities. CPB ensures that 95 cents of
every dollar received 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.
CPB's fiscal year 2018 request of $445 million and fiscal year 2016
requests of $40 and $25.74 million for interconnection and Ready To
Learn, respectively, balance the fiscal reality facing our Nation with
our statutory mandate to provide a valuable and trusted service to all
Americans. Today, the challenges we face are more complex than ever and
require attention to education, innovation, and collaboration. Public
media has been inspiring and entertaining our hearts and minds for
almost half a decade, and Congress' support of our request will allow
stations to continue providing high quality trusted content and
materials that educate and strengthen our civil-society.
Mr. Chairman and members of the subcommittee, this is only part of
the story of America's public media system. Public media is truly a
national treasure. I thank you for allowing me to submit this testimony
and appreciate your consideration of our request for funding.
[This statement was submitted by Patricia de Stacy Harrison,
President and CEO, Corporation for Public Broadcasting.]
______
Prepared Statement of the National Public Radio
Dear Chairman Blunt, Senator Murray and Members of the
Subcommittee: Thank you for this opportunity to urge the Subcommittee's
support for an annual Federal investment of $445 million to public
broadcasting through the Corporation for Public Broadcasting, (CPB) for
fiscal year 2018. Public radio joins with our public television
partners in urging the Subcommittee's support for $40 million in fiscal
year 2016 for the first year of a $197 million multi-year request to
replace the current public television interconnection system, and
$25.74 million for the Department of Education's Ready To Learn
program. With your support, and these essential funds, every American
will continue to have free access to the best in educational, news,
information and cultural programming.
I offer this testimony on behalf of the public radio system, a
uniquely American public service, non-for-profit media enterprise that
includes NPR, our more than 950 public radio station partners, other
producers and distributors of public radio programming including
American Public Media (APM), Public Radio International (PRI), the
Public Radio Exchange (PRX), and many stations, both large and small,
that create and distribute content through the Public Radio Satellite
System (PRSS).
Funding provided by Congress to the CPB supports the entire
foundation of a system that has been one of America's most successful
models of a community-centric grant program. The cost of public
broadcasting is only 0.01 percent of the entire Federal budget. The
revenue base provided by Congress enables stations to raise $6 for
every Federal grant dollar. This Federal financial investment permits
local stations to invest more deeply in their own local news and
cultural programming which in turn enables our stations to provide the
American public with an enduring and daily return on investment that is
heard, seen, read, and experienced in public radio broadcasts, apps,
podcasts, and on online.
With support from CPB's community service grants, each of the
hundreds of independently operated public radio stations is responsible
for curating and creating the mix of programs that best addresses the
needs of their local community. These stations and their programming
choices are as diverse as the people who live in the communities they
serve. Some have all-news formats. Others have all-music formats and
still other blend news, talk, commentary and music into their program
offerings. Close to thirty percent of our stations' daily programming
is locally generated. Every year the Federal Government invests roughly
$90 million dollars in the operation of America's local public radio
stations. And these stations provide service to all of America's
congressional districts and States.
Stations continue to develop innovative local partnerships. In
Missouri, the successful merger between St. Louis Public Radio and the
St. Louis Beacon provides local audiences with more reporters covering
local beats on air and online. By combining forces, in-depth local
service allows journalists to provide more of the story behind the
stories. Recently, 7 months after the shooting death of Michael Brown
in Ferguson drew national attention to racial disparities, St. Louis
Public Radio hosted a second community forum entitled, Ferguson and
Beyond: Continuing the Community Conversation. Public radio's Michel
Martin once again moderated a public discussion with a panel of
community leaders and residents on what's changed since August, and
what still needs attention.
In Central Washington, Northwest Public Radio and Spanish-language
public radio station KDNA established a bilingual news reporting team.
The new initiative pairs the talents of the two stations to bridge the
cultural and linguistic gaps between communities by combining their
reporting and digital services teams and tackling the issues of their
respective communities, bilingually.
Federal funding for public broadcasting is a small investment that
pays big dividends. And when it comes to music, public radio plays a
unique and critically important role. We have created a value
partnership that connects music and those who devote their lives to it
from artists, performers and composers to audiences. Our local stations
play a significant role in music discovery, preservation, education,
and local music economies. And this role is enabled by CPB's community
service grants to local public radio stations.
Nationally, more than 260 public radio stations have full-time
music formats and an additional 628 play music as part of their
programming lineups. On the whole, local public radio stations air more
than 5.5 million hours of music per year, the majority of which is
local programming and host more than 10,000 in-studio and community-
based performances.
Public radio provides a home for genres that are economically
unsustainable in the commercial market, including classical, jazz,
folk, opera and traditional regional music such as bluegrass and
zydeco. In fact, over 90 percent of all broadcast classical music in
America is available only on public radio, and the same is quickly
becoming true for jazz. Our stations help support and preserve cultural
institutions, including local bands, symphony orchestras, philharmonic
societies, theater groups, and historical venues. Public radio's role
in music is not possible without a diverse revenue base, including
CPB's financial support to local stations.
Mr. Chairman and Senator Murray, NPR and the public radio system
are committed to being America's public radio where rationale, fact-
based, accurate and civil reporting and conversation are our top
priorities. We have no political agenda and we do not take sides.
Public radio plays an important, significant and growing role in news,
journalism, talk and music/cultural programming. Our stations are
essential to, and part of, the communities they serve.
Through news, talk, music and cultural programming, public radio
stations are reaching out to audiences wherever they are. We're
embracing America's changing demographics and using digital media to
connect better, more quickly and in more diverse ways. Today's public
radio isn't going away, it's going everywhere and we are working every
day to earn the trust of the 38 million Americans who rely on us for
news and insights that guide and inform.
[This statement was submitted by Michael Riksen, Vice President--
Policy & Representation, National Public Radio.]
______
Prepared Statement of the Railroad Retirement Board
Mr. Chairman and Members of the Committee: We are pleased to
present the following information to support the Railroad Retirement
Board's (RRB) fiscal year 2016 budget request of $119,918,000 for our
retirement, unemployment and other programs.
The RRB administers comprehensive retirement/survivor and
unemployment/sickness insurance benefit programs for railroad workers
and their families under the Railroad Retirement and Railroad
Unemployment Insurance Acts. The RRB also has administrative
responsibilities under the Social Security Act for certain benefit
payments and Medicare coverage for railroad workers. The RRB has also
administered special economic recovery payments and extended
unemployment benefits under the American Recovery and Reinvestment Act
of 2009 (Public Law 111-5) and extended unemployment benefits under the
Worker, Homeownership, and Business Assistance Act of 2009 (Public Law
111-92), the Tax Relief, Unemployment Insurance Reauthorization, and
Job Creation Act of 2010 (Public Law 111-312), the Temporary Payroll
Tax Cut Continuation Act of 2011 (Public Law 112-78), the Middle Class
Tax Relief and Job Creation Act of 2012 (Public Law 112-96) and the
American Taxpayer Relief Act of 2012 (Public Law 112-240).
During fiscal year 2014, the RRB paid $12 billion, net of
recoveries, in retirement/survivor benefits to about 562,000
beneficiaries. We also paid $86 million in net unemployment/sickness
insurance benefits to about 25,000 claimants. Temporary extended
unemployment benefits paid were $0.8 million. In addition, the RRB paid
benefits on behalf of the Social Security Administration amounting to
$1.5 billion to about 111,000 beneficiaries.
proposed funding for agency administration
The President's proposed budget would provide $119,918,000 for
agency operations, which would enable us to maintain a staffing level
of 860 full-time equivalent staff years (FTEs) in 2016. The proposed
budget would also provide $7,980,000 for information technology (IT)
investments for automation and modernization of our legacy benefit
processing systems. In addition, to discretionary funding, agency seeks
$3.3M in mandatory funding to enhance program integrity processes
supporting benefit programs.
agency staffing
The RRB's dedicated and experienced workforce is the foundation for
our tradition of excellence in customer service and satisfaction. Like
many Federal agencies, however, the RRB has a number of employees at or
near retirement age. About 58 percent of our employees have 20 or more
years of service, and over 31 percent of our current workforce will be
eligible for retirement by fiscal year 2016. As we continue to
modernize our information technology infrastructure to automate and
convert manual workloads, our agency will also improve training
delivery and reporting within our workforce. In fiscal year 2016, we
continue to implement a Learning Management System that will provide a
comprehensive functionality for training administration, documentation,
tracking, reporting and delivery of e-learning education and training
programs. This will allow the agency to improve all aspects involved in
the learning process to meet our human capital needs as we experience a
high rate of change in personnel. Furthermore, we complement this
initiative by implementing an executive training program to prepare and
mentor future agency leaders that are ready to replace a significant
number of senior leaders within the agency that are eligible to retire.
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. Also, our budget request includes a
legislative proposal to clarify the authority of the Railroad
Retirement Board to hire attorneys through competitive civil service.
information technology improvements
We are actively pursuing further automation and modernization of
the RRB's various processing systems to support the agency's mission to
administer benefit programs for railroad workers and their families. In
fiscal year 2016, IT funding is targeted toward investments in system
modernization and network operation improvements. Key projects include
system modernization resource needs for $6,486,000 in mainframe
applications re-engineering, $1,435,000 for network operations to
implement a virtual desktop infrastructure, and $10,000 to implement
the mandatory HSPD-12 Logical Access Controls in our enterprise
applications. The agency is in critical need of migrating over 12
million lines of code in COBOL that support 4,200 custom programs
included in 200 major applications that serve as the framework for our
legacy benefit systems/processes. We have developed a solution based on
a proof of concept assessment that will migrate the agency to a
flexible architecture with open standards, that transition from batch
processing to interactive transactional processing. This solution will
minimize the significant risks in loss of personnel nearing or at
retirement age with skills needed to maintain the legacy benefit
processing systems. The RRB will be equipped with modern tools and
technology to run more efficiently with simplified logic that is easy
to understand and document. With the implementation of the virtual
desktop infrastructure, these enhanced applications will be available
for use on any desktop, tablet, or smart phone. Desktops are virtual,
hosted and centrally managed giving end-users a secure and full
personal computer experience wherever they are, thereby providing a
rich telework experience. Furthermore, these solutions will produce a
return on investment to the taxpayer in savings from a decrease in full
time equivalents through attrition once system changes are implemented.
other requested funding
The President's proposed budget includes $29 million to fund the
continuing phase-out of vested dual benefits, plus a 2 percent
contingency reserve, $580,000, which ``shall be available proportional
to the amount by which the product of recipients and the average
benefit received exceeds the amount available for payment of vested
dual benefits.'' In addition, the President's proposed budget includes
$150,000 for interest related to uncashed railroad retirement checks.
new funding source
The fiscal year 2016 President's Budget also provides $3,300,000 in
mandatory funding for the RRB's program integrity activities. The funds
will be used to implement an aggressive program focused on efforts to
deter and detect disability fraud and minimize improper payments. The
objective of the request is in line with extensive review of current
operations and recommendations from the General Accounting Office and
RRB's Office of Inspector General. The funds will be no-year funds to
provide the RRB with the flexibility to hire and train staff, train
personnel, and conduct increased medical exams and reviews to support
the processing of additional program integrity work.
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. 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 Web site.
The net asset value of Trust-managed assets on September 30, 2014, was
approximately $26.1 billion, an increase of almost $1.1 billion from
the previous year. Through January 2015, the Trust had transferred
approximately $17.1 billion to the Railroad Retirement Board for
payment of railroad retirement benefits.
The RRB's latest annual report required by the Railroad Retirement
Act of 1974 and Railroad Retirement Solvency Act of 1983 was released
in June 2014. 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 2014. The report indicated that
even as maximum daily benefit rates rose approximately 41 percent (from
$68 to $96) from 2013 to 2024, 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 Michael S. Schwartz, 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 2016 would provide
$9,450,000 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 2016, the OIG will focus on
areas affecting program performance; the efficiency and effectiveness
of agency operations; and areas of potential fraud, waste and abuse.
operational components
The OIG has three operational components: the immediate Office of
the Inspector General, the Office of Audit (OA), and the Office of
Investigations (OI). The OIG conducts operations from several
locations: the RRB's headquarters in Chicago, Illinois; an
investigative field office in Philadelphia, Pennsylvania; and five
domicile investigative offices located in Virginia, Texas, California,
Florida, and New York. These domicile offices provide more effective
and efficient coordination with other Inspector General offices and
traditional law enforcement agencies, with which the OIG works joint
investigations.
office of audit
The mission of the Office of Audit (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 2016, 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 Act of 2010 Oversight. OA must also accomplish the following
mandated activities with its own staff: Audit of the RRB's financial
statements pursuant to the requirements of the Accountability of Tax
Dollars Act of 2002, evaluation of information security pursuant to the
Federal Information Security Management Act (FISMA), audit of the RRB's
compliance with the Improper Payments Elimination and Recovery Act of
2010, review of IG Requirements for Government Charge Card Abuse and
Prevention Act of 2012, and Identification of Performance and
Management Challenges for fiscal year 2016.
During fiscal year 2016, OA will complete the audit of the RRB's
fiscal year 2015 financial statements and begin its audit of the
agency's fiscal year 2016 financial statements. OA contracts with a
consulting actuary for technical assistance in auditing the RRB's
``Statement of Social Insurance'', which became basic financial
information effective in fiscal year 2006. In addition to performing
the annual evaluation of information security, OA also conducts audits
of individual computer application systems which are required to
support the annual FISMA evaluation. Our work in this area is targeted
toward the identification and elimination of security deficiencies and
system vulnerabilities, including controls over sensitive personally
identifiable information.
OA undertakes additional projects with the objective of allocating
available audit resources to areas in which they will have the greatest
value. In making that determination, OA considers staff availability,
current trends in management, and Congressional and Presidential
concerns.
office of investigations
The Office of Investigations (OI) focuses its efforts on
identifying, investigating, and presenting cases for prosecution,
throughout the United States, concerning fraud in RRB benefit programs.
OI conducts investigations relating to the fraudulent receipt of RRB
disability, unemployment, sickness, and retirement/survivor benefits.
OI investigates railroad employers and unions when there is an
indication that they have submitted false reports to the RRB. OI also
conducts investigations involving fraudulent claims submitted to the
Railroad Medicare Program. These investigative efforts can result in
criminal convictions, administrative sanctions, civil penalties, and
the recovery of program benefit funds.
OI INVESTIGATIVE RESULTS FOR FISCAL YEAR 2014
------------------------------------------------------------------------
Indictments/ Recoveries/
Civil Judgments Informations Convictions Receivables
------------------------------------------------------------------------
24 35 89 \1\ $343,500,00
0
------------------------------------------------------------------------
\1\ This 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, which were included in the disposition resulting from the
investigation.
OI anticipates an ongoing caseload of about 400 investigations in
fiscal year 2016. During fiscal year 2014, OI opened 184 new cases and
closed 236. At present, OI has cases open in 48 States, the District of
Columbia, and Canada with estimated fraud losses of over $401 million.
Disability 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.
Of particular significance is an ongoing disability fraud
investigation in New York. To date, 33 individuals have been indicted;
28 of these have pleaded guilty and five more were convicted in Federal
court. All individuals prosecuted in connection with this case have
been sentenced. In addition, 44 former railroad employees avoided
prosecution by admitting their role in the fraud and agreeing to the
termination of their benefits. OI agents will likely have to spend a
substantial amount of time traveling to New York for continuing
investigations and trial preparation in fiscal year 2016.
During fiscal year 2016, OI will continue to coordinate its efforts
with agency program managers to address vulnerabilities in benefit
programs that allow fraudulent activity to occur and will recommend
changes to ensure program integrity. OI plans to continue proactive
projects to identify fraud matters that are not detected through the
agency's program policing mechanisms.
conclusion
In fiscal year 2016, the OIG will continue to focus its resources
on the review and improvement of RRB operations and will conduct
activities to ensure the integrity of the agency's trust funds. This
office will continue to work with agency officials to ensure the agency
is providing quality service to railroad workers and their families.
The OIG will also aggressively pursue all individuals who engage in
activities to fraudulently receive RRB funds. The OIG will continue to
keep the Subcommittee and other members of Congress informed of any
agency operational problems or deficiencies.
[This statement was submitted by Martin J. Dickman, Inspector
General, Railroad Retirement Board.]
______
NONDEPARTMENTAL WITNESSES
Prepared Statement of AcademyHealth
AcademyHealth is pleased to offer this testimony regarding funding
for Federal agencies that support health services research and health
data, including the Agency for Healthcare Research and Quality (AHRQ),
the National Center for Health Statistics (NCHS), and the National
Institutes of Health (NIH). AcademyHealth's mission is to support
research that leads to accessible, high value, high-quality healthcare;
reduces disparities; and improves health. We represent the interests of
more than 5,000 health services researchers, policy analysts, and
practitioners that produce and use health services research to improve
our Nation's health and the performance of the healthcare and public
health systems. For fiscal year 2016, we recommend funding levels of
$375 million for AHRQ, $172 million for NCHS, and at $32 billion for
NIH.
The United States spent $2.9 trillion--17.4 percent of our
economy--on healthcare in 2013. Finding new ways to get the most out of
every healthcare dollar is critical to our Nation's long-term fiscal
health. Like any corporation making sure it is developing and providing
high quality products, the Federal Government--as the Nation's largest
healthcare purchaser--has a responsibility to get the most value out of
every taxpayer dollar it spends on Medicare, Medicaid, Children's
Health Insurance Program, and veterans' and service members' health.
Health services research is our Nation's R&D enterprise for health
improvement. Just as medical research discovers cures for disease,
health services research discovers cures for the health system (see
Figure 1). This research diagnoses problems in healthcare and public
health delivery and identifies solutions to improve outcomes for more
people, at greater value. And while biomedical and clinical research
discoveries can take years and even decades to reach patients,
discoveries from health services research can be used now by patients,
healthcare providers, public health professionals, hospitals,
employers, and public and private payers to improve care today.
Put plainly, health services research helps Americans get their
money's worth when it comes to healthcare. We need more of it, not
less. Despite the positive impact health services research has had on
the U.S. healthcare system, and the potential for future improvements
in quality and value, the United States spends less than one cent of
every healthcare dollar on this research; research that can help
Americans spend their healthcare dollars more wisely and make more
informed healthcare choices.
AcademyHealth realizes the pressure Congress and the administration
face to reduce the national debt. We respectfully ask that the
subcommittee consider the value of health services research in
achieving that goal, and to strengthen its capacity to address the
pressing challenges America faces in providing access to high-quality,
efficient care. The following list summarizes AcademyHealth's fiscal
year 2016 funding recommendations for agencies that support health
services research and health data under the subcommittee's
jurisdiction.
Agency for Healthcare Research and Quality
AHRQ is the only Federal research agency with the sole purpose of
producing evidence to make healthcare safer; higher quality; more
accessible, equitable, and affordable; and to ensure that the evidence
is understood and used. AHRQ funds health services research and
healthcare improvement programs in universities, medical centers,
research institutions, hospitals, health clinics, and medical practices
that are transforming people's health in communities in every State
around the Nation. The science funded by AHRQ provides consumers and
their healthcare professionals with valuable evidence to make
healthcare decisions. For example, medical societies use AHRQ-funded
research to inform their recommendations for treatment of type 2
diabetes and rheumatoid arthritis. These evidence-informed
recommendations give physicians a foundation for describing what the
best care looks like, so millions of patients living with these and
other conditions may determine what the right care might be for them.
AHRQ's research also provides the basis for strategies that prevent
medical errors, reduce hospital-acquired infections (HAI), and improve
patient experiences and outcomes. For example, AHRQ's evidence-based
Comprehensive Unit-based Safety Program to Prevent Healthcare-
Associated Infections (CUSP)--first applied on a large scale in 2003
across more than 100 ICUs across Michigan--saved more than 1,500 lives
and nearly $200 million in the program's first 18 months. The protocols
have since been expanded to hospitals in all 50 States, the District of
Columbia, and Puerto Rico to continue the national implementation of
this approach for reducing HAIs.
AcademyHealth joins the Friends of AHRQ--an alliance of health
professional, research, consumer, and employer organizations that
support the agency--in recommending $375 million in budget authority
for AHRQ in fiscal year 2016.
National Center for Health Statistics
NCHS is the Nation's principal health statistics agency. Housed
within the Centers for Disease Control and Prevention (CDC), it
provides critical data on all aspects of our healthcare system through
data cooperatives and surveys that serve as a gold standard for data
collection around the world. AcademyHealth appreciates the
subcommittee's support of NCHS in recent years. Such efforts have
allowed NCHS to reinstate data collection and quality control efforts,
continue the collection of vital statistics, and modernize surveys to
reflect changes in demography, geography, and health delivery.
We join the Friends of NCHS--an alliance of health professional,
research, consumer, industry, and employer organizations that support
the agency--in recommending an overall funding level of $172 million
for NCHS in fiscal year 2016. This includes $160 million in budget
authority and $12 million in mandatory Prevention and Public Health
Fund. This funding level will support the agency's core data collection
activities, as well as new initiatives to enhance death data timeliness
and security, restore survey expansions to better assess access to and
utilization of healthcare services.
National Institutes of Health
NIH spends approximately $1 billion on health services research
annually--roughly 3 percent of its entire budget--making it the largest
Federal sponsor of health services research. We join the research
community in seeking at least $32 billion for NIH in fiscal year 2016.
NIH has an important role in the Federal health services research
continuum, and is well-positioned to ensure that discoveries from
clinical trials are effectively translated into healthcare delivery.
AcademyHealth supports efforts to help NIH foster greater coordination
of its health services research investment among its institutes and
across other Federal agencies to avoid duplication.
AcademyHealth also recommends that the Clinical and Translational
Science Awards (CTSA) through the National Center for Advancing
Translational Sciences (NCATS) sustain investment in the full spectrum
of translational research (T1-T4). The CTSA program enables innovative
research teams to speed discovery and advance science aimed at
improving our Nation's health. The program encourages collaboration in
solving complex health and research challenges and finding ways to turn
their discoveries into practical solutions for patients. Finally,
AcademyHealth supports continued investment by NIH and its many
Institutes and Centers in dissemination and implementation research.
This research helps us understand which approaches work to improve
population health.
In conclusion, the accomplishments of the field of health services
research would not be possible without the leadership and support of
this subcommittee. We hope the subcommittee gives strong consideration
to our fiscal year 2016 funding recommendations for the Federal
agencies funding health services research and health data. If you have
questions or comments about this testimony or wish to know more about
health services research, please contact Dr. Lisa Simpson, President
and CEO of AcademyHealth.
FIGURE 1: THE HEALTH RESEARCH CONTINUUM
------------------------------------------------------------------------
------------------------------------------------------------------------
These components of the health research continuum work in concert, and
each plays an essential role--any one type of research on its own
cannot effectively or appreciably improve health. Take heart disease as
one example ...
------------------------------------------------------------------------
Basic research Clinical research Population-based Health services
discovered the determined which research research
contributions of treatments were identified determined how
elevated blood safe and strategies to to best deploy
pressure, effective to reduce the these
elevated treat risks of heart discoveries to
cholesterol, and hypertension, disease in achieve the
tobacco use to hypercholesterol communities best health
heart disease. emia, tobacco through non- outcomes. This
addiction, and medical research helped
to prevent and interventions, identify who
treat heart such as had the least
disease, in reduction of access, what
general. trans fats in barriers
food and existed, and
tobacco control how to mitigate
measures to them. This
reduce smoking. research also
led to the
development of
quality
measures that
are now used to
report on the
quality of
cardiac care.
------------------------------------------------------------------------
Source: AHRQ: 15 Years of Transforming Care and Improving Health,
AcademyHealth, Jan. 2014. Available at: http://academyhealth.org/files/
AHRQReport2014.pdf.
[This statement was submitted by Dr. Lisa Simpson, President & CEO,
AcademyHealth.]
______
Prepared Statement of the Academic Family Medicine
fiscal year 2016 funding requests
We urge the Committee to appropriate at least $71 million for the
health professions program, Primary Care Training and Enhancement,
authorized under Title VII, Section 747 of the Public Health Service
Act, and appropriate $287 million for the National Health Service Corps
(NHSC,) both under the jurisdiction of the Health Resources and
Services Administration (HRSA.) In addition, we recommend the Committee
fund the Agency for Healthcare Research and Quality (AHRQ) at no less
than $375 million in base discretionary funding to support research
vital to primary care.
The member organizations of the Council of Academic Family Medicine
(CAFM) are pleased to submit testimony on behalf of programs under the
jurisdiction of the Health Resources and Services Administration (HRSA)
and the Agency for Healthcare Research and Quality (AHRQ). The programs
we support in our testimony are ones that deliver an investment in our
Nation's workforce and health infrastructure. They are a down payment
on a U.S. healthcare system with a foundation of primary care that will
produce better health outcomes and reduce the ever rising costs of
healthcare. We understand that hard decisions must be made in these
difficult fiscal times, but even in this climate, we hope the Committee
will recognize that the production of a robust primary care workforce
for the future is a necessary investment that cannot wait and will
ultimately produce long term savings.
Primary Care Training and Enhancement
The Primary Care Training and Enhancement Program (Title VII,
Section 747 of the Public Health Service Act) has a long history of
providing indispensable funding for the training of primary care
physicians. With each successive reauthorization, Congress has modified
the Title VII health professions programs to address relevant workforce
needs. The most recent authorization directs the Health Resources and
Services Administration (HRSA) to prioritize training in the new
competencies relevant to providing care in the patient-centered medical
home model. It also calls for the development of infrastructure within
primary care departments for the improvement of clinical care and
research critical to primary care delivery, as well as innovations in
team management of chronic disease, integrated models of care, and
transitioning between healthcare settings.
As experimentation with new or different models of care continues,
departments of family medicine and family medicine residency programs
will need to rely even more on Title VII, Section 747, grants to help
develop curricula and research training methods for transforming
practice delivery. Some areas in need of support for future training
include: training in clinical environments that are transforming or
have transformed to 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 interprofessional teams that
include diverse professions outside of medicine; and development and
implementation of curricula to develop leaders and teachers in practice
transformation. Moreover, new competencies will be 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\
---------------------------------------------------------------------------
\1\ Http://www.hrsa.gov/advisorycommittees/bhpradvisory/actpcmd/
Reports/eleventhreport.pdf.
---------------------------------------------------------------------------
In order to address some of these challenges, the Advisory
Committee recommends that Congress increase funding levels for training
under the primary care training health professions program, both in
fiscal year 2016 and for the next 5 years. The current funding level
(approximately $38.9 million) is not enough to allow for the pent up
demand caused by reduced and stagnant funding levels. There has been a
dearth of competitive grant cycles available since the last
reauthorization, due to the lack of growth in funding for this program.
More importantly, the vital work of these grants to help reform primary
care education and the health delivery system needs to be prioritized
and given an increase in funding dollars. In order to ensure that
training keeps pace with delivery system reform, we must increase the
availability of funding enough to allow for robust annual grant cycles.
Primary care health professions training grants under Title VII
continue to have a profound impact on States across the country and 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 urge your continued support for this program and an increase in
funding to $71 million in fiscal year 2016 to allow for a robust
competitive funding cycle.
National Health Service Corps
The NHSC recruits and places physicians and medical professionals
in health professional shortage areas to meet the need for healthcare
in rural and medically underserved areas. The NHSC provides
scholarships or loan repayments as incentives for medical students to
enter primary care and to provide healthcare to underserved Americans.
By addressing medical school debt burdens, the NHSC also ensures wider
access to medical education opportunities.
Since in 1972, the NHSC has offered financial assistance to recruit
and retain healthcare providers to meet the workforce needs of
communities across the Nation designated as health professional
shortage areas (HPSA). The Government Accountability Office (GAO-01-
1042T) described the NHSC as ``one safety-net program that directly
places primary care physicians and other health professionals in these
medically needy areas.'' More than 40,000 providers have served in the
NHSC since its inception. In fiscal year 2014, the NHSC had a field
strength of 9,242 primary care clinicians. NHSC physicians and
healthcare providers were placed in HPSAs serving patients in every
State and territory.
This program has had widespread bipartisan support over the years.
We are concerned that by not having funding in the appropriations
baseline, the program could cease operations when the trust fund
expires. Our total funding request would increase the field strength to
over $15,000 Corps members providing help to those wishing to practice
in primary care and who would serve nearly 16 million patients. We
would like to ensure robust funding for this program which addresses
the maldistribution of our healthcare workforce and enables many
students from disadvantaged backgrounds to enter primary care while at
the same time providing care to underserved individuals.
Agency for Health Care Research and Quality (AHRQ)
We are grateful that Congress included budget authority for AHRQ in
the fiscal year 2015 omnibus funding bill, and would like to thank the
committee for including it in the funding bill. This change strengthens
the viability of an agency that is vital to the development of primary
care research and implementation of such research into primary care
practice around the country. The majority of research funding in the
United States supports research of one specific disease, organ system,
cellular, or chemical process--not for primary care. This is in spite
of the fact that the overall health of a population is directly linked
to the strength of its primary healthcare system. Primary care research
includes: translating science into the practice of medicine and caring
for patients, understanding how to better organize healthcare to meet
patient and population needs, evaluating innovations to provide the
best healthcare to patients, and engaging patients, communities, and
practices to improve health. AHRQ is uniquely positioned to support
this sort of best practice research and to help advance its
dissemination to improve primary care nationwide.
There are six areas that we believe AHRQ excels at--and that are
not available elsewhere in the biomedical research infrastructure:
primary care research through Practice-based Research Networks (PBRNs),
practice transformation, patient quality and safety in non-hospital
settings, multi-morbidity research, mental and behavioral health
provision in communities and primary care practices, and training
future primary care investigators. Critical to the successful
engagement and development of primary care research is the constraint
of not having an adequate cadre of well-trained researchers. We believe
there is a need to deliberately promote this training as a way to aid
in the development of all the areas we have emphasized. AHRQ has
researcher training mechanisms in place, which we believe are
important, and need to be expanded.
Below are some examples of the work of AHRQ that have been
instrumental in supporting primary care practice and patient safety:
--In fiscal year 2015, AHRQ has utilized much of its funding from the
Patient Centered Outcomes Research (PCOR) trust fund on
research to learn how best to incorporate PCOR best practices
into actual primary care practices. Of the almost $55 million
in PCOR funded grants, AHRQ awarded approximately $44 million
for research related to small and medium practices, the rest is
directed toward research related to large health systems. A
critical piece of this effort is looking not just at how best
to disseminate information to clinicians, but how to implement
change in clinician practices. Research into implementation
science, including what supports are needed, what facilitation
is necessary, etc. are key areas the research will emphasize.
While this is not discretionary funding, we highlight it to
show how important the agency is to primary care practice.
--We are extremely pleased to find that one of AHRQ's new funding
initiatives in the coming year is for research into multiple
chronic conditions--a hallmark of primary care practice. These
grants are directed to (1) provide clinicians with tools to
develop integrated care plans that reflect patients'
conditions, values, preferences, etc., and (2) data to examine
the impact of integrated care plans and new care models on
utilization and quality of care. Additionally, funding will be
used for data collection to identify how healthcare teams are
organized and if care and outcomes look different in team based
practices, compared to traditional practices.
--We note that while AHRQ research is critically important to primary
care, it is also important to the health and safety across the
Nation in many care settings. 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. Additionally, the report enumerated a decline in
harm to patients of over 1.3 million, 50,000 lives saved, and
$12 billion in reduced health spending during that period.
---------------------------------------------------------------------------
\2\ Publication #15-0011-EF.
---------------------------------------------------------------------------
Research related to the most common acute, chronic, and comorbid
conditions that primary care clinicians treat is lacking. AHRQ supports
research to improve healthcare quality, reduce costs, advance patient
safety, decrease medical errors, and broaden access to essential
services. This research is essential to create a robust primary care
system for our Nation--one that delivers higher quality of care and
better health while reducing the rising cost of care. Despite this
need, little is known about how patients can best decide how and when
to seek care, how to introduce and disseminate new discoveries into
real life practice, and how to maximize appropriate care. This type of
research requires sufficient funding for AHRQ, so it can help
researchers address the problems confronting our health system today.
We recommend the Committee fund AHRQ at a base, discretionary level
of at least $375 million for fiscal year 2015.
[This statement was submitted by Tom Campbell, MD, Chair, Council
of Academic Family Medicine.]
______
Prepared Statement of the Academy of Nutrition and Dietetics
Dear Chairman Blunt and Ranking Member Murray: On behalf of the
Academy of Nutrition and Dietetics, thank you for the opportunity to
submit comments for the fiscal year 2016 appropriations bill. The
Academy, with 75,000 members throughout the Nation, is the world's
largest organization of food and nutrition professionals, committed to
improving the Nation's health through healthy and safe food choices. As
Congress begins work on fiscal year 2016 appropriations, we strongly
urge you to fully fund Federal nutrition programs, which will provide
an investment that will help prevent costly healthcare expenses due to
chronic diseases.
Administration for Children and Families Funding
The Academy supports the increased funding for Head Start by $1.5
billion, to a total of $10.1 billion. This funding level would ensure
that every Head Start program serves children for a full school day and
a full school year, as well as including a cost-of-living adjustment
for all programs. Head Start's nutrition component provides and
promotes nutritious eating and healthy habits along with engaging in
nutrition education for children and families.
Administration for Community Living Funding
The Academy supports the President's fiscal year 2016 request for
$874.5 million for the Title III Nutrition Programs of the Older
Americans Act. We support the increases in funding for the Congregate
Nutrition Services and for Home Delivered Meals, as well as the $20
million for new nutrition innovation demonstrations. We also support
the $160 million request for the Nutrition Services Incentive Program
(NSIP). These nutrition services help nearly 2.4 million older adults
receive the necessary meals to help them stay healthy and decrease the
risk for disability. The additional funds in fiscal year 2016 would
support an estimated 208 million meals.
The Academy also supports the President's fiscal year 2016 request
for $19 million for Preventative Health Services under the Older
Americans Act. This program provides grants to States and Territories
in order to support evidence-based activities that educate older adults
about the importance of healthy lifestyles and promotes behaviors that
can help to prevent or delay chronic disease and disability, thereby
reducing the need for costly medical interventions. We also support the
Administration's proposal of $8 million for Chronic Disease Self-
Management Programs (CDSMP) within the Administration on Aging. CDSMP
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. Seven out of ten deaths and more than three-
quarters of all health expenditures for older adults are the result of
chronic conditions such as diabetes, obesity, cancer, arthritis and
depression that can be reduced with prevention programs.
Finally for older adults, the Academy supports the President's
fiscal year 2016 request of $28.8 million for Elder Rights Support
Activities, which will advance ACL's Elder Justice Initiative. Cases of
elder abuse, neglect and exploitation are on the rise in this country.
One study estimates that 14.1 percent of older adults face some sort of
abuse. Elder abuse is a frightening threat to our elderly and their
families, and increases the likelihood of the victim suffering an
adverse health impact, including heart attacks, dementia, chronic
disease, depression, and distress.
Centers for Disease Control and Prevention Funding
The Academy supports the continued promotion of public health and
prevention programs demonstrated in the budget request of $7 billion to
the Centers for Disease Control and Promotion (CDC). In particular, we
applaud the $150 million to Diabetes State Programs, $10 million to the
Diabetes Prevention Program, $130 million to Heart Disease and Stroke
Prevention, and $4 million to the Million Hearts Initiative. We also
support the request for $8 million for the Hospitals Promoting
Breastfeeding program.
However, the Academy is respectfully concerned about the $140
million cuts to the Center for Chronic Disease Prevention and Health
Promotion programs. Chronic diseases, due in part to lifestyle choices,
account for seven out of ten causes of death in the U.S. As of 2012,
almost half of adults had one or more chronic health conditions. In
particular, we are strongly concerned about the $7.5 million cuts to
the Division of Nutrition, Physical Activity and Obesity (DNPAO). This
cut represents a significant cut in money aimed at primary prevention
as compared to clinically-related concerns. This decrease in funding
will also eliminate the High Obesity Rate Counties program, which
sought to work with communities and local organizations to reduce
obesity and related chronic diseases in areas with high adult obesity
rates. These programs need to be fully funded in order to address the
chronic diseases that are putting stress on our healthcare system and
decreasing our worker's productivity. We would encourage the Committee
to invest in maintaining good health and help prevent future and more
costly diseases.
Food and Drug Administration Funding
The Academy strongly supports the President's fiscal year 2016
request of $1.16 billion to the Food and Drug Administration's (FDA)
Foods Program, with $109.5 million going to implementation of the Food
Safety Modernization Act (FSMA). Separating these monies from the user
fees is critical to implementation of important food safety measures to
protect the public from preventable foodborne illnesses. This amount
also represents a significant increase over fiscal year 2015 spending,
and we urge you to meet this request.
health resources and services administration funding
National Institutes of Health Funding
The Academy supports the President's fiscal year 2016 request of
$31.1 billion for the National Institutes of Health (NIH). We
respectfully request that $2.066 billion be appropriated to the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK), from which $478 million will go to the Division of Digestive
Diseases and Nutrition. This program supports discovery, clinical and
translational research, as well as targeted training, aimed at
understanding the impact of nutrition on digestive diseases. These
funding increases show a commitment to investing in nutrition research
to prevent chronic diseases, and we applaud this commitment.
The Academy also supports the request for $24.7 million for the
Office of Dietary Supplements (ODS) within the Office of the Director
at NIH. ODS provides accurate and up-to-date scientific information on
dietary supplements to researchers, healthcare providers, and the
public, and provides vital research on the role of dietary supplements
interventions for certain conditions.
Please feel free to contact me with any questions on these
important issues. Thank you again for your time.
[This statement was submitted by Mary Pat Raimondi, MS, RD, Vice
President, Strategic Policy and Partnerships.]
______
Prepared Statement of the Academy of Nutrition and Dietetics
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
The Academy of Nutrition and Dietetics (the Academy) is part of a
nationwide coalition, the Food is Medicine Coalition, of over 80 food
and nutrition services providers, affiliates and their supporters
across the country that provide food and nutrition services to people
living with HIV/AIDS (PLWHA) and other chronic illnesses. The Academy
represents 75,000 members, comprised of registered dietitian
nutritionists (RDNs), dietetic technicians, registered, and other
dietetics professionals holding undergraduate and advanced degrees in
nutrition and dietetics. Collectively, the Food is Medicine Coalition
is committed to increasing awareness of the essential role that food
and nutrition services (FNS) play in successfully treating HIV/AIDS and
to expanding access to this indispensable intervention for people
living with other severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed RDN outside of a
primary care visit. The range of FNS provided through the Ryan White
program complements the needs of PLWHA at any stage of their illness.
For those who are most mobile, there are congregate meals, walk-in food
pantries and voucher programs. For those whose disease has progressed,
home-delivered meals and home-delivered grocery bags complement their
medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
better health outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
--More ER visits \4\ & increased morbidity and mortality \5\
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_
factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/conclusion.cfm?
conclusion_statement_id=250707 Accessed 29 July 2012.
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
\4\ iv Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
lower healthcare costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
improved patient satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_
factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Mary Pat Raimondi, MS, RD, Vice
President, Strategic Policy and Partnerships, Academy of Nutrition and
Dietetics.]
______
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. We continue
to believe that science and innovation are essential if we are to
continue to improve our Nation's health, sustain our leadership in
medical research, and remain competitive in today's global information
and innovation-based economy.
Despite increases provided in each of the past 2 fiscal years, the
NIH budget remains lower than it was in fiscal year 2012 in actual
dollars. Additionally, since 2003, NIH funding has declined by 23
percent after adjusting for biomedical inflation. While the President's
fiscal year 2016 budget represents a much needed next step by
increasing NIH funding above biomedical inflation, the Ad Hoc Group's
members believe that the ongoing and emerging health challenges
confronting the United States and the world, and the unparalleled
scientific opportunities to address these burdens demand a funding
level of at least $32 billion in fiscal year 2016. We look forward to
working with Congress and the Administration to achieve this goal
through the annual appropriations process.
The Ad Hoc Group also urges Congress and the Administration to work
in a bipartisan manner to end sequestration, the continued cuts to
medical research that squander invaluable scientific opportunities,
discourage young scientists, threaten medical progress and continued
improvements in our Nation's health, and jeopardize our economic
future.
NIH: A Public-Private Partnership to Save Lives and Provide Hope
The partnership between NIH and America's scientists, medical
schools, teaching hospitals, universities, and research institutions is
a unique and highly-productive relationship, leveraging the full
strength of our Nation's research enterprise to foster discovery,
improve our understanding of the underlying cause of disease, and
translate this knowledge into the next generation of diagnostics,
therapeutics, and other clinical innovations. Nearly 84 percent of the
NIH's budget is competitively awarded through more than 55,000 research
and training grants to more than 300,000 researchers at over 2,500
universities and research institutions located in every State.
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.
Research funded by NIH has contributed to nearly every medical
treatment, diagnostic tool, and medical device developed in modern
history, from a new treatment for cystic fibrosis to an awareness
campaign that resulted in a dramatic decrease in the number of infants
lost to Sudden Infant Death Syndrome to a vaccine to prevent cervical
cancer. We are all enjoying longer, healthier lives thanks to the
Federal Government's wise investment in this lifesaving agency.
Examples of recent breakthroughs made by NIH-supported scientists
include:
--A Phase I clinical trial to assess the safety, efficacy, and
immunogenicity of an intramuscular Ebola vaccine co-created by
NIH and GlaxoSmithKline. Results indicated this vaccine was
well-tolerated and elicited anti-Ebola antibody responses in
healthy adult volunteers. Another promising vaccine candidate
began Phase I trials in October 2014 in thirty-nine healthy
volunteers. The vesicular stomatitis virus (VSV) Ebola vaccine
studies are being conducted in collaboration with the U.S.
Department of Defense and NewLink Genetics Corp. A parallel
study is ongoing at the Walter Reed Army Institute of Research
to evaluate in real time the vaccine's safety when provided at
different dosages and compare the immune responses induced by
one injection versus two.
--NIH-supported scientists contributed to the first comprehensive 3-D
atlas of gene expression in the developing human brain as part
of a larger project to profile gene expression throughout the
course of brain development. The results provide a powerful map
to link areas of the brain to genes tied to neurodevelopmental
disorders and human-specific brain functions. This resource
will help reveal the early roots of brain-based disorders, such
as autism and schizophrenia.
--A new technology called CRISPR (clustered regularly interspaced
short palindromic repeats) is allowing scientists to
specifically target genes for deletion, addition, activation,
or suppression in what amounts to performing their own genetic
microsurgery. Using this system, NIH-supported researchers have
altered DNA in human cells, rats, mice, zebrafish, bacteria,
fruit flies, yeast, nematodes, and crops. This wide-ranging
applicability makes the technology valuable for numerous
applications, including conducting large-scale genetic screens
in mammalian cells (recently validated by NIH-funded
scientists), as well as the promise of new treatments for
genetic diseases.
--The Recovery After an Initial Schizophrenia Episode (RAISE)
initiative aims to prevent long-term disability in individuals
with serious mental illness through early intervention. RAISE
comprises two complementary efforts: the Early Treatment
Program, which is continuing to follow patients for an
additional three to 4 years to investigate the long-term impact
of early intervention; and, the Connection Program, which
successfully integrated team-based, multi-element services
targeting the first episode of psychosis (FEP) in mental health
systems in New York and Maryland, and is now evaluating
promising strategies for reducing the duration of untreated
psychosis among persons experiencing FEP. NIH has collaborated
with the Substance Abuse and Mental Health Services
Administration to translate early RAISE findings into guidance
for States regarding evidence-based approaches to FEP
treatment, and assembled a broad range of training resources
developed through RAISE for use by State-supported Community
Mental Health Centers.
--Current treatments for Hemophilia, a rare bleeding disorder in
which the blood fails to clot normally, require a lifetime of
frequent injections, often twice a week, of an expensive
clotting factor called factor IX to restore normal clotting. A
recent NIH-funded clinical trial used gene therapy to reprogram
the body's own cells to produce factor IX using special viruses
that have been engineered not to cause diseases. When adult men
with hemophilia were given an intravenous dose of the therapy,
patients who received the higher dose improved markedly, with
the effects lasting for the entire 4-year period of the study.
--NIH-funded researchers developed a 3-D scaffold that guides the
development of stem cells into specialized cartilage-producing
cells, an approach that could allow for the creation of
orthopedic implants to replace cartilage in patients with
arthritis. This approach could allow for implants that restore
function to a joint immediately and drive development of a
mature, viable tissue replacement.
--Lung cancer solid tumors are particularly difficult to detect. NIH-
funded scientists used genetic data from the Cancer Genome
Atlas (TCGA) database to develop a molecular signature for non-
small-cell lung cancers. Using this signature and samples from
patients with non-small-cell lung cancer, researchers designed
a highly sensitive DNA-based blood test that accurately
identified all patients with advanced lung cancer, as well as
half of patients whose lung cancer was in its earliest stage.
This simple blood test was shown to detect solid tumors rapidly
and accurately, track their progression over time, and could
possibly predict their response to treatment. Efforts are now
underway to conduct clinical trials to measure this technique
and its potential to improve the detection of many different
kinds of solid tumors.
--TB is treated with antibiotic drugs, but the bacteria that cause TB
have evolved to become resistant to these medications. An NIH-
funded research team analyzed the structure of an existing
antibiotic and made various chemical modifications to create a
new class of agents that were active against both multidrug-
resistant (MDR) and extensively drug-resistant (XDR) bacteria.
These compounds were not toxic in laboratory assays or in
animals, and a subset of the compounds was highly effective
against TB infections in mice. This work represents an initial
step in the development of a new class of drugs to treat TB.
--Sickle cell disease is a genetic blood disorder that causes
defective hemoglobin, the protein in red blood cells that
carries oxygen. It affects millions worldwide, including
approximately 100,000 people in the United States. The disease
disproportionately affects African Americans, and current
treatments are largely ineffective. A recent NIH-funded study
showed that a stem cell transplant from a healthy relative
could reverse the disease in 87 percent of patients. NIH
research also is working towards a drug therapy for sickle cell
disease. Through a collaborative agreement, researchers at the
National Center for Advancing Translational Sciences' (NCATS)
Therapeutics for Rare and Neglected Diseases (TRND) program and
AesRx, a biopharmaceutical company, developed a drug candidate
to treat sickle cell disease that specifically targets the
underlying disease mechanism. The success of a Phase II
clinical trial to evaluate safety and effectiveness has
resulted in the recent acquisition of the drug by a
pharmaceutical company that will advance the clinical
development activities required for regulatory approval and
commercialization.
For patients and their families, NIH is the ``National Institutes
of Hope.''
NIH is the world's premier supporter of merit-reviewed,
investigator-initiated basic research. This fundamental understanding
of how disease works and insight into the cellular, molecular, and
genetic processes underlying life itself, including the impact of
social environment on these processes, underpin our ability to conquer
devastating illnesses. The application of the results of basic research
to the detection, diagnosis, treatment, and prevention of disease is
the ultimate goal of medical research. Ensuring a steady pipeline of
basic research discoveries while also supporting the translational
efforts necessary to bring the promise of this knowledge to fruition
requires a sustained investment in NIH.
Stagnant Funding Threatens Scientific Momentum
Over the past decade, NIH has lost more than 23 percent of its
budget after inflation, significantly impacting the Nation's ability to
sustain the scientific momentum that has contributed so greatly to our
Nation's health and our economic vitality. The leadership and staff at
NIH and its Institutes and Centers has engaged patient groups,
scientific societies, and research institutions to identify emerging
research opportunities and urgent health needs, and has worked
resolutely to prioritize precious Federal dollars to those areas
demonstrating the greatest promise. At the same time, a continued
erosion of our national commitment to medical research threatens our
ability to support a medical research enterprise that is capable of
taking full advantage of existing and emerging scientific
opportunities.
Perhaps the most destructive and long-lasting impact of the decline
in the NIH budget is on the next generation of scientists, who see
training funds slashed and the possibility of sustaining a career in
research diminished. The continued success of the biomedical research
enterprise relies heavily on the imagination and dedication of a
diverse and talented scientific workforce. Of particular concern is the
challenge of maintaining a cadre of clinician-scientists to facilitate
translation of basic research to human medicine. NIH supports many
innovative training programs and funding mechanisms that foster
scientific creativity and exploration. 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, but that capacity simply cannot weather repeated blows such
as persistent below-inflation funding levels and sequestration cuts,
which jeopardize our competitive edge in an increasingly innovation-
based global marketplace.
Other countries have recognized the critical role that biomedical
science plays in innovation and economic growth and have significantly
increased their investment in biomedical science. This shift in funding
is creating an innovation deficit in the U.S. and raises the concern
that talented medical researchers from all over the world, who once
flocked to the U.S. for training and stayed to contribute to our
innovation-driven economy, are now returning 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 maintain
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 not only medical progress but
also local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries. According to a
report released by United for Medical Research, a coalition of
scientific advocates, institutions and industries, in fiscal year 2011,
NIH-funded research supported an estimated 432,000 jobs all across the
United States and generated more than $62 billion in new economic
activity.
The Ad Hoc Group's members recognize the tremendous challenges
facing our Nation's economy and acknowledge the difficult decisions
that must be made to restore our country's fiscal health. Nevertheless,
we believe strongly that NIH is an essential part of the solution to
the Nation's economic restoration. 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, the Ad Hoc Group for Medical Research recommends that
NIH receive at least $32 billion in fiscal year 2016 as the next step
toward a multi-year increase in our Nation's investment in medical
research.
______
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 in opposition of the fiscal year 2016 budget
proposal consolidating Ryan White Part D funding into Part C and in
support of maintaining Part D of the Ryan White Program as part of the
fiscal year 2016 Labor, Health and Human Services, Education, and
Related Agencies appropriations measure. This testimony also has the
support of the Elizabeth Glaser Pediatric AIDS Foundation.
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 Ryan White Part D
Programs, providing $75,297,000 million to the program in fiscal year
2015, restoring dedicated funding eliminated in the President's fiscal
year 2015 budget proposal. While the AIDS Alliance for Women, Infants,
Children, Youth & Families understands that these are difficult
economic times, we are requesting the Subcommittee to maintain its
commitment to the Ryan White Part D program and again restore its
dedicated funding eliminated in the President's fiscal year 2016 budget
proposal and increase Ryan White Part D funding by $9.9 million in
fiscal year 2016.
Ryan White Part D Background and History
Over concerns with the increase in the number of pediatric AIDS
cases, 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 2012, Part D provided funding to 114 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 187 in 2013 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 8,000 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 CDC, youth aged 13-24 accounted for 26 percent of all
new HIV infections in the U.S. in 2010. Most new HIV infections in
youth (about 57 percent) occur in young Black gay and bisexual males.
Of the new HIV infections among youth, 2,100 are among young women;
two-thirds of these are among young Black women. Ryan White Part D
programs are the entry point into medical care for many of these HIV
positive youth and lead the Nation's effort in recruiting and retaining
HIV positive youth to comprehensive medical care and support services.
According to the Health Resources and Services Administration, more
than 37 percent of women receiving medical care in Ryan White Programs
do so through Part D. Additionally, Part D provides medical and
supportive services to a large number of women over 50 who are heading
into their senior years as HIV survivors which 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. Full implementation of the Affordable Care Act (ACA), along with
continuation of the Ryan White Program will dramatically improve health
access and outcomes for many more women, infants, children, and youth
living with HIV disease.
Proposed Consolidation
The medical and supportive services provided by Ryan White Part D
are unique and are not currently being provided by other parts of the
Ryan White Program, including Ryan White Part C. These services are
uniquely tailored to address the needs of women, including HIV positive
pregnant women, HIV exposed infants, children and youth living with
HIV/AIDS. The proposed consolidation of Part D funding into Part C in
the Federal budget would eliminate a strong safety net for our most
vulnerable populations and weaken the systems of care Part D programs
have created and invested in for more than 25 years. Furthermore, the
loss of Part D funds in some community areas would profoundly impact
access to comprehensive HIV care and treatment for women, infants,
children and youth. Many of the population served by Part D will be
lost or never enter into care thus increasing the existing gaps in the
HIV Care Continuum. Moreover, major program changes that are this
controversial should be left to Congress and should not be done through
the appropriations process.
Conclusion
While we recognize the need to reduce administrative burdens
associated with the overall operational aspects of Ryan White programs
, the elimination of dedicated funding for Ryan White Part D in fiscal
year 2015 and fiscal year 2016, and the proposed Part C/D consolidation
would undoubtedly destabilize existing models of care created to
address the unique needs of women, infants, children, and youth living
with HIV/AIDS and jeopardizes the success of retaining these most
vulnerable populations in life-saving HIV/AIDS care and treatment
ensuring achieved and maintained viral load suppression. If we believe
that one day we will realize an ``AIDS-free generation,'' then surly we
know how essential it is to maintain the Ryan White Program and all of
its Parts.
AIDS Alliance for Women, Infants, Children, Youth & Families urges
the Committee to reject the President's fiscal year 2016 budget
proposal to eliminate dedicated funding for Ryan White Part D and move
the funding to Part C, and respectfully request that the Committee
include language in the appropriations bill attesting to such. Without
the Ryan White Part D program, many of these medically-underserved
women, infants, children and youth would not receive the vital primary
care and support services provided to them for the last two decades.
On behalf to the women, infants, children, and youth living with
HIV/AIDS and the 114 Ryan White Part D funded programs across the
country that serve them we sincerely thank you for all that you do to
ensure that these populations receive the much needed primary care and
treatment needed to sustains their lives.
[This statement was submitted by Dr. Ivy Turnbull, Deputy Executive
Director, Aids Alliance for Women, Infants, Children, Youth &
Families.]
______
Prepared Statement of the AIDS Project Rhode Island
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
AIDS Project Rhode Island is part of a nationwide coalition, the
Food is Medicine Coalition, of over 80 food and nutrition services
providers, affiliates and their supporters across the country that
provide food and nutrition services to people living with HIV/AIDS
(PLWHA) and other chronic illnesses. In our service area, we served
1,249 people just last year at our Afia Center pantry. Collectively,
the Food is Medicine Coalition is committed to increasing awareness of
the essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
better health outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
lower healthcare costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
improved patient satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Stephen R. Hourahan, Executive
Director, AIDS Project Rhode Island.]
______
Prepared Statement of AIDS Services Foundation Orange County
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
AIDS Services Foundation Orange County and its Orange County HIV/
AIDS Advocacy Team are part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In Orange County, we provide 5,100 food pantry
orders (equivalent to 244,800 meals) and 69,550 cans of nutritional
supplements such as Ensure annually to low income, disabled HIV+
individuals. Collectively, the Food is Medicine Coalition is committed
to increasing awareness of the essential role that food and nutrition
services (FNS) play in successfully treating HIV/AIDS and to expanding
access to this indispensable intervention for people living with other
severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ iv Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines. \12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Marc Marger, Director of Support
Services, Chair of Orange County HIV/AIDS Advocacy Team, AIDS Services
Foundation Orange County.]
______
Prepared Statement of The AIDS United
As the committee begins its important deliberations on the fiscal
year 2016 Labor, Health and Human Services, Education and Related
Agencies (Labor HHS)appropriation bill, we thank you for your continued
commitment to addressing HIV/AIDS in the United States. We are close to
a time when we can achieve the goals of the National HIV/AIDS Strategy
and move towards an AIDS free generation but only if the Federal
Government continues to commit the necessary resources. We appreciate
that you have recognized this need in the past and ask that you
continue to increase funding for domestic HIV/AIDS programs as you
formulate the fiscal year 2016 budget and appropriation measures.
Unfortunately, due to sequestration and other budget constraints,
domestic HIV/AIDS programs and other non-defense discretionary programs
have been cut in recent years, even as new HIV infections continue at
50,000 per year and the number of people needing care and treatment
increase. For example, since fiscal year 2012, the Ryan White HIV/AIDS
Program has been cut by $73 million, HIV prevention at the Centers for
Disease Control and Prevention (CDC) has dropped by $28 million and
AIDS research at the National Institutes of Health (NIH) by $60
million.
As you prepare the fiscal year 2016 appropriations LHHS bill we ask
that you maintain the Federal Government's commitment to safety net
programs that protect the public health, such as the Ryan White HIV/
AIDS Program. In order to prevent new infections, we ask that you
adequately fund HIV prevention programs at the CDC and throughout the
Department of Health and Human Services (HHS), as well as AIDS research
at the NIH so that we may find a cure and address other research
priorities. Below are the specific discretionary programs we ask you to
support with increased resources, along with the accompanying
justification.
The Ryan White HIV/AIDS Program
Early and reliable access to HIV care and treatment is cost
effective and helps people with HIV live healthy and productive lives.
Research has found that when people with HIV are on treatment and the
virus is suppressed, the chance of HIV transmission is reduced to
almost zero. The Ryan White HIV/AIDS Program is a system of care that
provides medications, medical care, and essential coverage completion
services to approximately 536,000 low-income, uninsured, and
underinsured individuals living with HIV/AIDS. With the number of
people living with HIV/AIDS at 1.2 million, the demands on the program,
now reaching 60 percent of all people diagnosed with HIV in the U.S.,
continue to grow while many needs remain unmet.
The Ryan White Program, as a payer of last resort, now works in
conjunction with Medicaid, Medicare, and the Affordable Care Act (ACA)
helping with out-of-pocket costs and supports access to critical
medical and services and coverage completion 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 covered by the ACA, including low-income people who live in non-
Medicaid expansion States. Sustained funding of primary care,
medications, and coverage completion services in the Ryan White Program
will continue to be necessary for those who currently have coverage and
are underinsured. We urge you to maintain all parts of the program. We
also urge you to oppose the Administration's proposal in the recent
fiscal year 2016 budget to consolidate Parts C and D, a proposal that
Congress rejected last year. Any such major changes to the program
should be made through the reauthorization process.
As described above, 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
$2.45 billion in fiscal year 2016, an increase of $136 million over
fiscal year 2015, distributed in the following manner:
--Part A: $687 million
--Part B (Care): $437 million
--Part B (ADAP): $943 million
--Part C: $225 million
--Part D: $85 million
--Part F/AETC: $35 million
--Part F/Dental: $18 million
--Part F/SPNS: $25 million
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 50,000 new
infections annually and about 1 in 7 people living with HIV do not know
they have the virus. Gay, bisexual, and other men who have sex with men
(MSM) continue to be the most impacted by the epidemic and account for
66 percent of all new infections. Between 2008 and 2010, infections
among MSM increased by 12 percent, and among MSM aged 13-24 years by 22
percent. Young people, particularly Black and Latino MSM, continue to
be the most disproportionately affected by HIV, accounting for one in
five new infections in 2012.
AIDS United was pleased to see the new funding announcement (FOA)
for programs targeted to fight HIV among gay, bisexual men and
transgender people announced on March 31. The FOA will target some
funding for the newest prevention tool in the tool box pre-exposure
prophylaxis (PrEP) for MSM and transgender people who are HIV-negative
but at substantial risk, as well as ongoing medical care and
antiretroviral treatment for people living with HIV.
While we are making progress in decreasing new infections among
women, black women are still disproportionately affected, accounting
for 64 percent of women infected in 2010. Black and Hispanic women ages
13-24 accounted for 82 percent of young women living with HIV in 2010
even though together they represent only about 30 percent of all women
in this age group.
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 an AIDS free
generation into reality. In order to achieve the goals of the National
HIV/AIDS Strategy, which include reducing new infections, increasing
knowledge of HIV-positive status, and reducing HIV transmission,
funding for the CDC is needed to carry out its High-Impact Prevention
activities.
For fiscal year 2016, we request an increase of $67 million over
fiscal year 2015 for a total of $822.7 million for the CDC Division of
HIV prevention and surveillance activities. [Note: This request does
not include the request for DASH]
Access to Sterile Syringes
Numerous studies have shown that syringe exchange programs (SEP)
are a cost-effective means to lower rates of HIV/AIDS and viral
hepatitis, do not increase substance abuse (nor the use of illegal
drugs) and help connect people to medical treatment, including
substance abuse treatment. Unfortunately, a crisis of increased
injection drug use, a result of prescription opioid addiction, has led
to a 75 percent increase in new infections from 2010-2012 according to
the CDC and the first indication of increases in HIV. On March 26th,
Governor Mike Pence of Indiana declared a public health emergency in
response to 79 cases of HIV related to injection drug use in 3 months
in a county that normally experiences five or fewer cases of HIV in a
year. In contrast, since Congress allowed Washington D.C. to scale up
its own local syringe exchange program, there has been an 81 percent
decrease in the number of newly diagnosed HIV cases related to
injection drug use. In 2008, the first year of the scale up of DC's
syringe exchange program, there were 109 cases, compared with 21 in
2012.
Syringe exchange, as part of a comprehensive health and prevention
program could have helped to prevent the outbreak of HIV. In fact most
SEPs provide comprehensive HIV services, prevention including HIV
counseling and testing, reducing sexual and drug use-related health
risks, referral to drug addiction treatment, and referral to other
medical and social services. Unfortunately, Congress re-imposed a ban
on the use Federal funds for syringe exchange programs in fiscal year
2012 undercutting a potential source of funds for such a program.
Ultimately this is a self-defeating policy leading to much higher HIV
rates in the U.S. and a higher cost necessary to respond to the
epidemic. For example in Indiana the lifetime cost for treatment alone
of these 79 cases of HIV will be more than $33 million dollars and it's
likely that more cases will be found. Most of these cases would have
been averted at a much lower cost with syringe exchange. AIDS United
strongly urges the committee to end the Federal ban on syringe exchange
by restoring language to allow local public health or local law
enforcement authorities to allow syringe exchange unless such local
authorities deem a site to be inappropriate.
HIV/AIDS Research at the National Institutes of Health
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 35 million people globally
and 1.2 million people living with HIV in the U.S., 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.
Consistent with the most recent Trans-NIH AIDS Research By-Pass
Budget Estimate for fiscal year 2013, we ask that you request $3.6
billion for HIV research at the NIH, an increase of $600 million over
fiscal year 2015.
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.
______
Prepared Statement of Cynthia J. Allen
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Alliance for Childhood Cancer and the
Coalition Against Childhood Cancer
Dear Senate Appropriations Committee: The undersigned childhood
cancer organizations, consisting of patient advocacy groups, healthcare
professionals and scientific organizations, represent over 10 million
Americans who care deeply about childhood cancer. We want to thank you
both for the opportunity to enumerate our funding priorities and to
make specific requests for report language related to childhood cancer.
NIH and NCI Funding
We join with the leading national cancer organizations in
requesting the following funding levels for medical research:
--$33 billion for the National Institutes of Health (NIH)
--$5.4 billion for the National Cancer Institute (NCI)
Childhood Cancer Funding
Within these funds, we are committed to working with Congress and
the National Institutes of Health to ensure that childhood cancer
becomes a higher priority. Each year in the U.S. there are an estimated
15,780 children who are diagnosed with cancer. Approximately 1 in 285
children in the U.S. will be diagnosed with cancer before their 20th
birthday. Globally there are more than 250,000 children diagnosed with
cancer each year. Cancer remains the most common cause of death by
disease for children in America.
Great advances have been made in developing better treatments for
the most common forms of childhood cancer. However, for many other
types, progress is limited, and for some kids there is no hope for a
cure. Two-thirds of children treated for childhood cancer will suffer
long-term effects from treatment including loss of hearing and sight,
heart disease, secondary cancers, learning disabilities, infertility
and more.
In an effort to ensure that childhood cancer is a top priority for
the NIH, we respectfully request that the following report language be
included in the fiscal year 2016 Labor, Health & Human Services,
Education and Related Agencies Appropriations bill.
National Cancer Institute--Report Language
The Committee encourages NCI to continue its important investments
in pediatric oncology clinical trials, including clinical studies for
children with brain tumors, and development of the novel pediatric
``MATCH'' study, as well as the important pediatric preclinical testing
program evaluating new agents for treating pediatric malignancies. The
Committee supports NCI's longstanding investment in the Childhood
Cancer Survivor Study and encourages continued childhood cancer
survivorship research efforts.
National Institutes of Health: Office of the Director--Report Language
Background.--The Gabriella Miller Kids First Research Act (Public
Law 113-94) authorized a pediatric research initiative through the
National Institutes of Health. The total funding for research would
come to $126 million over 10 years to the NIH Director's Common Fund.
The Act was named after Gabriella Miller, who died in 2013 as a result
of pediatric cancer.
The Common Fund is supported as a set-aside within the Office of
the Director, which includes $12,600,000 to support pediatric research
as authorized in the Gabriella Miller Kids First Research Act. The
Committee encourages the NIH to prioritize research relating to
childhood cancer within the Kids First program.
National Cancer Institute: Office of Cancer Survivorship--Report
Language
The Committee recognizes the vital work preformed by the Office of
Cancer Survivorship. However, it has been brought to the Committee's
attention that pediatric cancer has unique needs that need to be
addressed. Therefore the Committee requests a report that outlines
steps that could be taken to focus resources and attention to the
youngest of cancer survivors.
Sincerely,
Alliance for Childhood Cancer
Coalition Against Childhood Cancer (CAC2)
3/32 Foundation
A Kids' Brain Tumor Cure Foundation
American Brain Tumor Association
American Cancer Society Cancer Action Network
American Childhood Cancer Organization
American Pediatric Surgical Association
American Society of Pediatric Hematology/Oncology (ASPHO)
Andrew McDonough B+ Foundation
Arms Wide Open Childhood Cancer Foundation
Association of Pediatric Hematology/Oncology Nurses (APHON)
Association of Pediatric Oncology Social Workers (APOSW)
Bear Necessities Pediatric Cancer Foundation
Because of Ezra
Braden's Hope for Childhood Cancer
Brooke's Blossoming Hope for Childhood Cancer Fund
Caleb's Crusade Against Childhood Cancer
CancerFree Kids
Cancer Support Community
Chai Lifeline
Chase After a Cure
Childhood Cancer Guides
Children's Brain Tumor Foundation
Children's Cause for Cancer Advocacy
Children's Neuroblastoma Cancer Foundation
Children's Oncology Group
Christina Renna Foundation Inc.
CJ's Journey
ConKerr Cancer
Crosby's Fund
Cure Childhood Cancer, Inc.
Cure4Cam Childhood Cancer Foundation
CureSearch for Children's Cancer
Curing Kids' Cancer
DC Candlelighters
Dragon Master Foundation
Ethan Jostad Foundation
Evan's Victory Against Neuroblastoma Foundation
Flashes of Hope
Francesco Loccisano Memorial Foundation/Frankie's Mission
Friends of Cathryn Foundation
Have Faith Be Strong
Hope & Heroes Children's Cancer Fund
I Care I Cure Childhood Cancer Foundation
Jeff Gordon Children's Foundation
Jeremy Cares Inc.
Journey4ACure
Kids' Cancer Research Foundation
Kids v Cancer
Koontz Oncology Consulting LLC
Leukemia and Lymphoma Society
Luck2Tuck Foundation
Make Some Noise: Cure Kids Cancer Foundation, Inc.
Making Headway Foundation
Martin Truex Jr Foundation
Mattie Miracle Cancer Foundation
Max Cure Foundation
Max's Ring of Fire
Melina's White Light
Morgan Adams Foundation
Nathan's Hope
National Brain Tumor Society
National Children's Cancer Society
National Coalition for Cancer Survivorship
Noah's Light Foundation
Northwest Indiana Cancer Kids Foundation
Open Hands Overflowing Hearts
Pediatric Brain Tumor Foundation
Pediatric Cancer Foundation (Mamornek, NY)
Pediatric Cancer Foundation (Tampa, Fla.)
People Against Childhood Cancer (PAC2)
PJs for Patients
Precious Jules Childhood Cancer Foundation
Rally Foundation for Childhood Cancer Research
St. Baldrick's Foundation
Sammy's Superheroes
Sarcoma Foundation of America
Smashing Walnuts Foundation
Society of Pediatric Psychology
Solving Kids' Cancer
Steven G AYA Cancer Research Fund
Tay-Bandz/Kids Curing Cancer
Team G Foundation
TeamConnor Childhood Cancer Foundation
Tennessee Cancer Coalition--Childhood Committee
The Nicolas Conor Institute (TNCI)
The Truth 365
This Star Won't Go Out
West Virginia Kids Cancer Crusaders
Zoe4Life
Plus 24 individual members of CAC2
[This statement was submitted by Danielle Leach, Alliance for
Childhood Cancer, and Vickie Buenger, Coalition Against Childhood
Cancer.]
______
Prepared Statement of the Alzheimer's Association
The Alzheimer's Association appreciates the opportunity to comment
on the fiscal year 2016 appropriations for Alzheimer's disease
research, education, outreach and support at the U.S. Department of
Health and Human Services.
Founded in 1980, the Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care, support and
research. Our mission is to eliminate Alzheimer's disease and other
dementias through the advancement of research; to provide and enhance
care and support for all affected; and to reduce the risk of dementia
through the promotion of brain health. As the world's largest nonprofit
funder of Alzheimer's research, the Association is committed to
accelerating progress of new treatments, preventions and, ultimately, a
cure. Through our funded projects and partnerships, we have been part
of every major research advancement over the past 30 years. Likewise,
the Association works to enhance care and provide support for all those
affected by Alzheimer's and reaches millions of people affected by
Alzheimer's and their caregivers.
alzheimer's impact on the american people and the economy
In addition to the human suffering caused by the disease,
Alzheimer's is creating an enormous strain on the healthcare system,
families and Federal and State budgets. 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. 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.
A Federal commitment can lower costs and improve health outcomes
for people living with Alzheimer's today and in the future. By making
Alzheimer's a national priority, we can create the same successes that
we have been able to achieve in other diseases that have been
prioritized by the Federal Government. Leadership from the Federal
Government has helped to lower the number of deaths from other major
diseases like heart disease, HIV/AIDS, many cancers, heart disease and
stroke. While those deaths have declined, deaths from Alzheimer's have
increased 71 percent between 2000 and 2013.
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 16 million Americans will have
Alzheimer's disease by 2050 and costs will exceed $1.1 trillion (not
adjusted for inflation), creating an enormous strain on the healthcare
system, families and the Federal budget.\1\ The expense involved in
caring for those with Alzheimer's is not just a long-term problem. 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\ 2015 Alzheimer's Diesease Facts and Figures: http://
www.alz.org/facts/downloads/facts_figures_2015.pdf.
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Due to these projected increases, the graying of America threatens
the bankrupting of America. Caring for people with Alzheimer's will
cost all payers--Medicare, Medicaid, individuals, private insurance and
HMOs--$20 trillion over the next 40 years, enough to pay off the
national debt and still send a $10,000 check to every man, woman and
child in America. In 2015, America will spend an estimated $226 billion
in direct costs for those with Alzheimer's, including $153 billion in
costs to Medicare and Medicaid. Average per person Medicare costs for
those with Alzheimer's and other dementias are three times higher than
those without these conditions. Average per senior Medicaid spending is
19 times higher.\2\
---------------------------------------------------------------------------
\2\ Ibid.
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A primary reason for these costs is that Alzheimer's makes treating
other diseases more expensive, as most individuals with Alzheimer's
have one or more co-morbidity that complicate the management of the
condition(s) and increase costs. For example, a senior with diabetes
and Alzheimer's costs Medicare 81 percent more than a senior who only
has diabetes. Nearly 30 percent of people with Alzheimer's or another
dementia who have Medicare also have Medicaid coverage, compared with
11 percent of individuals without Alzheimer's or dementia. Alzheimer's
disease is also extremely prevalent in nursing homes, where 64 percent
of Medicare residents live with the disease.
With Alzheimer's, it is not just those with the disease who
suffer--it is also their caregivers and families. In 2014, 15.7 million
family members and friends provided unpaid care valued at over $217
billion. Caring for a person with Alzheimer's takes longer, lasts
longer, is more personal and intrusive, and takes a heavy toll on the
health of the caregivers themselves. Nearly 60 percent of Alzheimer's
and dementia caregivers rate the emotional stress of caregiving as high
or very high, with nearly 40 percent reporting symptoms of depression.
Caregiving may also have a negative impact on health, employment,
income and family finances. Due to the physical and emotional toll of
caregiving on their own health, Alzheimer's and dementia caregivers had
$9.7 billion in additional health costs in 2013.\3\
---------------------------------------------------------------------------
\3\ Ibid.
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changing the trajectory of alzheimer's
Until recently, there was no Federal Government 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 Alzheimer's Plan (Plan) to help those with the disease and
their families today and to change the trajectory of the disease for
the future. The Plan is required to include an evaluation of all
federally-funded efforts in Alzheimer's research, care and services--
along with their outcomes. In addition, the Plan must outline priority
actions to reduce the financial impact of Alzheimer's on Federal
programs and on families; improve health outcomes for all Americans
living with Alzheimer's; and improve the prevention, diagnosis,
treatment, care, institutional-, home-, and community-based Alzheimer's
programs for individuals with Alzheimer's and their caregivers. NAPA
will allow Congress to assess whether the Nation is meeting the
challenges of this disease for families, communities and the economy.
Through its annual review process, NAPA has enabled, for the first
time, Congress and the American people to answer this simple question:
Did we make satisfactory progress this past year in the fight against
Alzheimer's?
As mandated by NAPA, the Secretary of Health and Human Services, in
collaboration with the Advisory Council on Alzheimer's Research, Care
and Services, has developed the first-ever National Plan to Address
Alzheimer's Disease in May of 2012 and subsequently released the 2014
Update to the National Plan to Address Alzheimer's Disease this past
April. The Advisory Council, composed of both Federal members and
expert non-Federal members, is an integral part of the planning process
as it advises the Secretary in developing and evaluating the annual
Plan, makes recommendations to the Secretary and Congress, and assists
in coordinating the work of Federal agencies involved in Alzheimer's
research, care, and services.
As a result of the National Plan, NIH convened a research summit in
2012, which resulted in the development of research milestones and
timelines for meeting the goal of effectively treating and preventing
Alzheimer's disease by 2025. NIH held a second summit in February of
this year to review the progress being made on those milestones and to
develop updates on them.
Having a plan with measurable outcomes is important. But unless
there are resources to implement the plan and the will to abide by it,
we cannot hope to make adequate progress. If we are going to succeed in
the fight against Alzheimer's, Congress must provide the resources the
scientists need. Understanding this and following the recommendation of
scientists at NIH, Congress passed the Consolidated and Further
Continuing Appropriations Act of 2015 (Public Law 113-235) which
included a $25 million increase for Alzheimer's research.
The law also included the Alzheimer's Accountability Act (S. 2192/
H.R. 4351), which requires NIH to develop a professional judgment
budget focused on the milestones established by the National Plan. This
will provide Congress with an account of the necessary resources that
NIH believes are needed to reach the critical goal of the National
Plan, to effectively treat and prevent Alzheimer's disease by 2025.
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 to anti-
cholesterol drugs), savings would be seen almost immediately, with
Medicare and Medicaid saving a cumulative $535 billion in the first 10
years.\4\
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\4\ Changing the Trajectory of Alzheimer's Disease: How a Treatment
by 2025 Saves Lives and Dollars: http://www.alz.org/documents_custom/
trajectory.pdf.
---------------------------------------------------------------------------
Today, despite the Federal investment in Alzheimer's research, we
are only just beginning to understand what causes the disease.
Americans are growing increasingly concerned that we still lack
effective treatments that will slow, stop, or cure the disease, and
that the pace of progress in developing breakthrough discoveries is
much too slow to impact this growing crisis significantly. For every
$26,000 Medicare and Medicaid spend caring for individuals with
Alzheimer's, NIH spends only $100 on Alzheimer's research. Scientists
fundamentally believe that we have the ideas, the technology and the
will to develop new Alzheimer's interventions, but that progress
depends on a prioritized scientific agenda and on the resources
necessary to carry out the scientific strategy for both discovery and
translation for therapeutic development.
For too many individuals with Alzheimer's and their families, the
system has failed them, and today we are unnecessarily losing the
battle against this devastating disease. Despite the fact that an early
and documented formal diagnosis allows individuals to participate in
their own care planning, manage other chronic conditions, participate
in clinical trials, and ultimately alleviate the burden on themselves
and their loved ones, as many as half of the more than five million
Americans with Alzheimer's have never received a formal diagnosis. In
fact, a recent report found that only 45 percent of people with
Alzheimer's disease or their caregivers say they were told that they or
their loved one had the disease. In contrast, people with the four most
common cancers (breast, colorectal, lung and prostate cancer) or their
caregivers reported diagnosis disclosure rates of more than 90 percent.
In cardiovascular disease other than stroke, 90 percent say they were
told their diagnosis. This disturbingly low diagnosis disclosure rate
for Alzheimer's is reminiscent of how doctors approached disclosing a
cancer diagnosis 60 years ago.\5\
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\5\ 2015 Alzheimer's Diesease Facts and Figures: http://
www.alz.org/facts/downloads/facts_figures_2015.pdf.
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Unless we create an effective, dementia-capable system that finds
new solutions to providing high quality care, provides community
support services and programs, and addresses Alzheimer's health
disparities, Alzheimer's will overwhelm the healthcare system in the
coming years. For example, people with Alzheimer's and other dementias
have more than three times as many hospital stays as other older
people. Furthermore, one out of seven individuals with Alzheimer's or
another dementia lives alone and up to half do not have an identifiable
caregiver. These individuals are more likely to need emergency medical
services because of self-neglect or injury, and are found to be placed
into nursing homes earlier, on average, than others with dementia.
Ultimately, supporting individuals with Alzheimer's disease and their
families and caregivers requires giving them the tools they need to
plan for the future and ensuring the best quality of life for
individuals and families impacted by the disease. It is vital that we
make the investments in Alzheimer's that will fulfill the goals of the
National Alzheimer's Plan. The Alzheimer's Association urges Congress
to support an additional $300 million for research activities and
priorities included in the National Alzheimer's Plan required under
Public Law 111-375.
additional alzheimer's programs
National Alzheimer's Call Center.--The National Alzheimer's Call
Center, funded by the ACL, provides 24/7, year-round telephone support,
crisis counseling, care consultation, and information and referral
services in 140 languages for persons with Alzheimer's, their family
members and informal caregivers. Trained professional staff and
master's-level mental health professionals are available at all times.
In the twelve month period ending June 31, 2014, the 24/7 Helpline
handled over 300,000 calls through its National Contact Center and 80+
chapters. Additionally, the Association provides a two-to-one match on
the Federal dollars received for the call center. The Alzheimer's
Association urges Congress to support $1.3 million for the National
Alzheimer's Call Center.
Healthy Brain Initiative (HBI).--The Centers for Disease Control
and Prevention's (CDC) HBI program works to educate the public, the
public health community and health professionals about Alzheimer's as a
public health issue. Although there are currently no treatments to
delay or stop the deterioration of brain cells caused by Alzheimer's,
evidence suggests that preventing or controlling cardiovascular risk
factors may benefit brain health. In light of the dramatic aging of the
population, scientific advancements in risk behaviors, and the growing
awareness of the significant health, social and economic burdens
associated with cognitive decline, the Federal commitment to a public
health response to this challenge is imperative. The fiscal year 2015
omnibus funding bill funded HBI at $3.34 million. The Alzheimer's
Association urges Congress to support $3.34 million for the Healthy
Brain Initiative.
Alzheimer's Disease Supportive Services Program (ADSSP).--The ADSSP
at the ACL supports family caregivers who provide countless hours of
unpaid care, thereby enabling their family members with Alzheimer's and
dementia to continue living in the community. The program develops
coordinated, responsive and innovative community-based support service
systems for individuals and families affected by Alzheimer's. The
Alzheimer's Association urges Congress to support $13.4 million for the
Alzheimer's Disease Supportive Services Program.
conclusion
The Association appreciates the steadfast support of the
Subcommittee and its priority setting activities. We look forward to
continuing to work with Congress in order to address the Alzheimer's
crisis. We ask Congress to address Alzheimer's with the same bipartisan
collaboration demonstrated in the passage of the National Alzheimer's
Project Act (Public Law 111-375) and enactment of the Alzheimer's
Accountability Act (Public Law 113-235) with a commitment equal to the
scale of the crisis.
______
Prepared Statement of the American Academy of Family Physicians
The American Academy of Family Physicians (AAFP), which represents
115,900 family physicians and medical students across the country, is
pleased to submit this statement for the record urging the Committee to
invest in our Nation's primary care physician workforce in the fiscal
year 2016 appropriations bill to promote the efficient, effective
delivery of patient-centered care by providing these appropriations for
the Health Resources and Services Administration (HRSA) and the Agency
for Healthcare Research and Quality (AHRQ):
--$71 million for Health Professions Primary Care Training and
Enhancement authorized under Title VII, Section 747 of the
Public Health Service Act (PHSA);
--$4 million for Rural Physician Training Grants (PHSA Title VII,
Sec. 749B);
--$287 million for the National Health Service Corps (PHSA Sec. 338A,
B, & I); and
--$375 million for the AHRQ (PHSA Sec. 487(d)(3), SSA Sec. 1142).
Founded in 1947, the AAFP is dedicated to preserving and promoting
the science and art of family medicine and ensuring high-quality, cost-
effective healthcare for patients of all ages. The AAFP appreciates the
opportunity to comment on the fiscal year 2016 appropriations levels
needed to achieve those important goals.
HRSA--Title VII, Sec. 747 Primary Care Training & Enhancement (PCTE)
The AAFP urges that the Committee provide $71 million for HRSA's
PCTE program.
Our Nation faces a shortage of primary care physicians which may
worsen as care delivery models shift toward smaller ratios of
population to primary care physicians.\1\ HRSA is the Federal agency
charged with administering the health professions training programs
authorized under Title VII of the Public Health Services Act and first
enacted in 1963. The AAFP recommends that the Committee provides $7.48
billion in discretionary funds for HRSA in the fiscal year 2016 bill.
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\1\ Petterson, S, et al. Estimating the Residency Expansion
Required to Avoid Projected Primary Care Physician Shortages by 2035.
Ann Fam Med March/April 2015; vol.13 no. 2:107-114. http://
annfammed.org/content/13/2/107.full.pdf+html.
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Family medicine relies on grants from the PCTE program to support
primary care training and the professional development of primary care
faculty. PCTE is both effective and essential; it has proven to be
critical support for the family physicians workforce. A recent study of
the effect of the PCTE funding opportunity announcement addressing
faculty development needs found that this sort of targeted Federal
funding can bring about changes that contribute to an up-to-date,
responsive primary care workforce.\2\
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\2\ Klink KA, Joice SE, McDevitt SK. Impact of the Affordable Care
Act on Grant-Supported Primary Care Faculty Development. Journal of
Graduate Medical Education Sep 2014, Vol. 6, No. 3 pp. 419-423.
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In addition to faculty development, the PCTE program allows
grantees to test educational innovations, respond to changing delivery
systems and models of care, and improve interprofessional education and
training. The Advisory Committee on Training in Primary Care Medicine
and Dentistry addressed the importance of learning in integrated
systems of care supported by the PCTE program in their report to the
Secretary of the U.S. Department of Health and Human Services and
Congress released in December 2014. The report highlights the need to
``integrate principles of interprofessional education with the building
of community-based collaborations and partnerships in primary care
practice.'' Noting that current appropriations levels are inadequate,
the report recommends that Congress provide ``$123 million to Title
VII, Part C, sections 747 and 748 for fiscal year 2016, restoring
funding to inflation-adjusted fiscal year 2003 levels.'' \3\
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\3\ Training Health Professionals in Community Settings during a
Time of Transformation: Building and Learning in Integrated Systems of
Care. Eleventh Annual Report to the Secretary of the U.S. Department of
Health and Human Services and to Congress. December 2014. Http://
www.hrsa.gov/advisorycommittees/bhpradvisory/actpcmd/Reports/
eleventhreport.pdf.
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HRSA--Title VII Rural Physician Training Grants
The AAFP asks that the Committee provide $4 million for the Rural
Physician Training Grants Program as requested in the Administration's
fiscal year 2016 budget.
Another important HRSA Title VII grant program is the Rural
Physician Training Grants program which is designed to help medical
schools recruit students most likely to practice medicine in rural
communities. This modest program authorized by Title VII, Sec. 749B of
the PHSA will help provide rural-focused training and experience and
increase the number of recent medical school graduates who practice in
underserved rural communities. Medical school rural programs have been
found to have a significant impact on rural family physician supply.\4\
This program will help provide rural-focused experience and increase
the number of medical school graduates who practice in underserved
rural communities. An appropriation of $4 million will support 10
grantees which will train a minimum of 100 students.
---------------------------------------------------------------------------
\4\ Rabinowitz,HK, et al. Medical School Rural Programs: A
Comparison With International Medical Graduates in Addressing State-
Level Rural Family Physician and Primary Care Supply. Academic
Medicine, Vol. 87, No. 4/April 2012.
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HRSA--National Health Service Corps
The AAFP recommends that the Committee provide at least the
requested appropriation of $287 million for the National Health Service
Corps for fiscal year 2016.
Since in 1972, the National Health Service Corps, also administered
by HRSA, has offered financial assistance to recruit and retain
healthcare providers to meet the workforce needs of communities across
the Nation designated as health professional shortage areas. The AAFP
is committed to supporting the objectives of the NHSC in assisting
communities in need of additional primary care physicians, and we
support the Administration's budget request for the NHSC of $287
million in discretionary appropriations as part of the fiscal year 2016
spending bill.
The Government Accountability Office (GAO-01-1042T) described the
NHSC as ``one safety-net program that directly places primary care
physicians and other health professionals in these medically needy
areas.'' As the only medical society devoted solely to primary care,
the AAFP recognizes the importance of the NHSC to the reducing our
Nation's serious geographic disparities in healthcare access. Not only
does the NHSC program place physicians and medical professionals in
health professional shortage areas to meet the needs of patients in
rural and medically underserved areas, it also provides scholarships as
incentives for medical students to enter primary care and to provide
healthcare to underserved Americans. By addressing medical school debt,
NHSC scholarships ensure wider access to medical education
opportunities. It does so by providing financial support for tuition
and other education expenses, and a monthly living stipend for medical
students committed to providing primary care in underserved communities
of greatest need.
More than 40,000 providers have served in the NHSC. In fiscal year
2014, the NHSC had a field strength of 9,242 primary care clinicians.
NHSC physicians and healthcare providers were placed in HPSAs serving
patients in every State and territory. However, the need for this
important program currently exceeds the available investment.
AHRQ--Primary Care Research?
The AAFP requests that the Committee provide no less than $375
million in appropriated funds for the Agency for Healthcare Research
and Quality (AHRQ) to support research vital to primary care.
The Agency for Healthcare Research and Quality (AHRQ) is the sole
Federal agency charged with producing evidence to support clinical
decisionmaking, reduce costs, advance patient safety, decrease medical
errors and improve healthcare quality and access. AHRQ supports
important unique and practical investigations in the biomedical
research community.
Evidence-based family medicine practice requires AHRQ-supported
primary care research in areas such as Practice-Based Research Networks
(PBRNs), practice transformation, patient quality and safety in non-
hospital settings, multi-morbidity research, as well as the delivery of
mental and behavioral health services in communities by primary care
practices. Also important to successful primary care research is AHRQ's
support for future primary care investigators. AHRQ has researcher
training mechanisms in place, which we believe are important, and need
to be expanded to support primary care research.
Primary care research includes:
--translating science into the active practice of medicine and caring
for patients
--understanding how to better organize healthcare to meet patient and
population needs
--evaluating innovations to deliver the best healthcare to patients
--engaging patients, communities, and practices to improve health.
AHRQ is uniquely positioned to support this sort of best practice
research and to help advance its dissemination to improve primary care
nationwide.
The AAFP relies on research developed by AHRQ to answer key
clinical questions based on AHRQ's Effective Health Care Program to
help clinicians make better treatment choices. AHRQ provides the
critical evidence reviews needed to answer questions on the common
acute, chronic, and comorbid conditions that family physicians see on a
daily basis.
AHRQ research also examines health information technology to
provide the evidence to inform meaningful use policy and practice so
that health IT can be used more effectively to improve the quality of
American healthcare.
______
Prepared Statement of the American Academy of Pediatrics
The American Academy of Pediatrics (AAP), a non-profit professional
organization of 62,000 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 2016 and beyond. AAP urges all Members of
Congress to put children first when considering short and long-term
Federal spending decisions.
To improve the state of the child in this country, the AAP is
focused on meeting the most basic needs of children: access to
healthcare and education, sound nutrition, nurturing relationships and
safe environments. As pediatricians, we not only diagnose and treat our
patients, we also promote preventive interventions to improve overall
health. Likewise, as policymakers, you have an integral role in
ensuring the health of future generations through adequate and
sustained funding of vital Federal programs. As such, we urge you to
pass strong policies that invest in children in the earliest days of
life. We implore you to take meaningful strides to address chronic
poverty and its impacts on the health and well-being of American
families.
AAP supports robust funding of the Department of Health and Human
Services (HHS) and its individual agencies like the Centers for Disease
Control and Prevention (CDC), the National Institutes of Health (NIH),
the Health Resources and Services Administration (HRSA), and the
Administration for Children and Families (ACF), which all combine to
support important programs that ensure the health and safety of
children. Federal funding through these agencies support critical
programs that address pressing public health challenges including:
efforts to prevent infant mortality and birth defects; healthy child
development; antimicrobial resistance and infectious diseases;
emergency medical services for children; mental health and substance
abuse prevention; tobacco prevention and cessation; unintentional
injury and violence prevention; child maltreatment prevention;
childhood obesity; environmental and chemical exposures; poison
control; teen pregnancy prevention and family planning; health
promotion in schools; and medical research and innovation.
In addition, we would like to highlight our support for investment
of $21.116 million in the Emergency Medical Services for Children at
HRSA, $131.78 million for the CDC's National Center for Birth Defects
and Developmental Disabilities, $219 million for CDC's Global
Immunization program, including $169 million for CDC Polio Eradication,
and $50 million for the CDC Measles program, and $650 million for CDC's
Section 317 program.
Emergency Medical Services for Children
Established by Congress in 1984 and last reauthorized in fiscal
year 2015, the Emergency Medical Services for Children (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 the
entire spectrum of emergency services is provided to children and
adolescents no matter where they live, attend school, or travel.
Gaps in providing quality care to children in emergencies continue
to persist throughout the country. The EMSC program helps to address
these gaps by promoting the quality of care provided in the pre-
hospital and hospital setting, reducing pediatric mortalities due to
serious injury, and supporting rigorous multi-site clinical trials
through the Pediatric Emergency Care Applied Research Network (PECARN).
Fiscal year 2016 Request: $21.116 million; fiscal year 2015 Level:
$20.1 million.
National Center for Birth Defects and Developmental Disabilities
The National Center for Birth Defects and Developmental
Disabilities is 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, and promoting
health and well-being among people of all ages with disabilities. The
center also conducts important research on fetal alcohol syndrome,
infant health, autism, congenital heart defects, and other conditions
like Tourette Syndrome, Fragile X, Spina Bifida and Hemophilia. NCBDDD
has proven to be an asset to children and their families and supports
extramural research in every State.
Fiscal year 2016 Request: $131.78 million; fiscal year 2015 Level:
$131.78 million.
Global Immunizations at CDC
Vaccines are one of the most cost-effective and successful public
health solutions available. They save the lives of approximately 2.5
million children each year. Recent studies estimate that scaling up the
use of existing vaccines in 72 of the world's poorest countries could
save 6.4 million lives and avert $6.2 billion in treatment costs and
$145 billion in productivity losses by 2020.
Since 1988 a coordinated global immunization campaign has reduced
the number of polio cases globally by more than 99 percent, saving more
than 10 million children from paralysis and bringing the disease close
to eradication. Expanded immunization has also reduced the global
mortality attributed to measles, one of the top five diseases killing
children, by 74 percent between 2000 and 2010.
The AAP calls on Congress to fully support CDC's Center for Global
Immunization, which provides technical assistance and surveillance
support to country ministries of health, with a focus on eradicating
polio, reducing measles deaths, and strengthening routine vaccine
delivery. The Center for Global Immunization enhances global capacity
for vaccine safety monitoring and post-marketing surveillance, builds
global immunization research and development capacity, and strengthens
countries' capacity for vaccine decisionmaking
Fiscal year 2016 Request: $219 million; fiscal year 2015 Level:
$208.6 million.
Section 317 Funding
Section 317 is a discretionary Federal grant program that provides
vaccines to underinsured children and adolescents who are not eligible
for the Vaccines for Children program, as well as for uninsured and
underinsured adults. Throughout its history, Section 317 has played an
important role in ensuring that these individuals are receiving
vaccinations that prevent life-threatening diseases. As we have seen in
the recent measles outbreak in California, vaccines are a crucial part
of our public health infrastructure.
Though the Affordable Care Act now requires that insurers provide
first dollar coverage of vaccines, Section 317 still plays a valuable
role in other areas, particularly in vaccine infrastructure and in
handling outbreaks. Section 317 has helped public health departments
around the country to optimize their billing processes so that they can
be reimbursed for insured patients to whom they administer vaccines.
Additionally, Section 317 plays an important role in containing
outbreaks. If a large outbreak were to occur, Section 317 funds could
be used to vaccinate individuals in the affected area, and could
supplement the efforts of the CDC to effectively combat the outbreak.
In his fiscal year 2016 Budget, the President proposed that Section
317 be cut by $50 million. The AAP urges Congress not to cut these
funds from the program. Though the Affordable Care Act is now a part of
our healthcare system, many aspects of it are still being rolled out,
and it is important that we are not hasty in cutting a program that so
clearly works and rely on another one that is still in its relative
infancy.
Fiscal year 2016 Request: $650 million; fiscal year 2015 Level:
$610 million.
America's children deserve better
Twenty percent of children in the United States now live in
poverty--up from 17 percent in 2007. During this same time period many
families in the United States have seen their savings depleted and one
or both parents lose their jobs. Although the country's economic
position is improving, such challenging economic conditions have
impacted one group of Americans particularly hard: our children. Many
children suffer from food insecurity, unstable housing, family
dysfunction, abuse and neglect. Such adverse childhood experiences are
linked with ``toxic stress,'' a biologic phenomenon associated with
profound and irreversible changes in brain anatomy and chemistry that
have been implicated in the development of health-threatening behaviors
and medical complications later in life including drug use, obesity,
and altered immune function. Adults affected by such adverse childhood
experiences are more likely to have experienced school failure, gang
membership, unemployment, violent crime, and incarceration.
Children's healthcare is not the cost driver of overall healthcare
spending
The United States continues to spend less on our children's health,
education, and general welfare than most other developed nations in the
world. Children under age 18 represent 30 percent of the total U.S.
population, yet healthcare services for infants, children, and young
adults are only 12 percent of total annual healthcare spending.
Furthermore, children, including those with special healthcare needs,
make up more than 50 percent of all Medicaid recipients, but account
for less than 25 percent of Medicaid costs.
Children's programs are cost-effective and improve our Nation's health
and economy
Children's programs are a cost-effective investment in our Nation's
future. For example, every 1 dollar spent on the childhood vaccine
series saves the healthcare system $16.50 in future medical costs.
Every 1 dollar spent on high-quality home visiting programs saves up to
$5.70 as a result of improved prenatal health, decreased mental health
and criminal justice costs, and fewer children suffering from abuse and
neglect. Every 1 dollar spent on preventative services for a pregnant
woman in the WIC program saves Medicaid up to $4.20 by reducing the
risk of pre-term birth and its associated costs.
Healthier children, healthier future
On behalf of the 75 million American children and their families
that we serve and treat, the Nation's pediatricians hope that Congress
will respond to mounting evidence that child health has life-long
impacts and prioritize children while determining fiscal year 2016
Federal spending levels. Federal support for children's health
programs, such as early brain and child development, parenting and
health education, and preventive health services, will yield high
returns for the American economy. Investing in children is not only the
right thing to do for the long-term physical, mental, and emotional
health of the population, but is imperative for the Nation's long-term
fiscal health as well.
We fully recognize the Nation's fiscal challenges and respect that
difficult budgetary decisions must be made; however, we do not support
funding decisions made at the expense of the health and welfare of
children and families. Rather, focusing on the long-term needs of
children and adolescents will ensure that the United States can compete
in the modern, highly-educated global marketplace. Strong and sustained
financial investments in children's healthcare, research, and
prevention programs will help keep our children healthy and pay
extraordinary dividends for years to come.
The AAP is focused on meeting the most basic needs of children:
access to healthcare and education, sound nutrition, nurturing
relationships, and safe environments. 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 2016 and beyond. If we may be of further assistance please contact
the AAP Department of Federal Affairs. Thank you for your
consideration.
[This statement was submitted by Sandra G. Hassink, MD, FAAP,
President, American Academy of Pediatrics.]
______
Prepared Statement of the American Academy of Physician Assistants
On behalf of more than 100,000 nationally certified physician
assistants (PAs), the American Academy of Physician Assistants (AAPA)
is pleased to submit comments on the fiscal year 2016 appropriation for
PA educational programs authorized under Title VII of the Public Health
Service (PHS) Act and administered by the Health Resources and Services
Administration (HRSA). AAPA respectfully requests that the Senate
Subcommittee on Labor, Health and Human Services, and Education and
Related Agencies approve continued funding of $280 million for the
Title VII health professions education program and provide $12 million
of the funding allocated to the Primary Care Training and Enhancement
(PCTE) program for PA education programs. These amounts are consistent
with the requests submitted by the Health Professions and Nursing
Education Coalition (HPNEC) and the Physician Assistant Education
Association (PAEA). AAPA also urges the Subcommittee to provide
continued, full funding for the National Health Service Corps (NHSC)
and community health centers (CHCs) as included in H.R. 2, the House-
passed SGR package.
Overview of PA Practice
PAs are healthcare providers who are nationally certified and State
licensed to practice medicine and prescribe medication in every medical
and surgical specialty and setting. PAs practice and prescribe in all
50 States, the District of Columbia, and in all U.S. territories with
the exception of Puerto Rico. PAs manage the full scope of patient
care, often handling patients with multiple comorbidities. In their
normal course of work, PAs conduct physical exams, assist in surgery,
diagnose and treat illnesses, order and interpret tests, and counsel on
preventative healthcare. As such, PAs are a valuable part of the
healthcare team, and they are necessary to ensure the success of the
healthcare delivery system as a whole.
Overview of PA Education
There are currently 196 accredited PA educational programs in the
U.S., all of which are located within schools of medicine or health
sciences, universities, teaching hospitals, and the Armed Services. All
PA programs are accredited by the Accreditation Review Commission on
Education for the Physician Assistant, and the overwhelming majority of
PA programs offer a master's degree in PA studies.
The typical PA student has a bachelor's degree and 4 years of
healthcare experience prior to beginning a PA program. The curriculum
generally consists of 26 months of instruction, which includes 400
hours of basic sciences and nearly 1,600 hours of clinical medicine.
Students' clinical education is often divided between primary care
medicine--family medicine, internal medicine, pediatrics, and
obstetrics and gynecology--and various specialties, including surgery
and surgical specialties, internal medicine subspecialties, emergency
medicine, and psychiatry. Once a PA has graduated, he or she must pass
a national certifying examination developed by the National Commission
on Certification of Physician Assistants and become licensed by the
State in which they will practice. PAs must also log 100 hours of
continuing medical education every 2 years and take a recertification
exam every 10 years.
PAs and Title VII Funding
Title VII of the PHS Act is the only continuing Federal funding
which is available to PA educational programs. As a result, AAPA
supports allocating $12 million specifically for these programs, which
are funded within PCTE. In the 2013-2014 academic year, PA education
grants made through PCTE via the Physician Assistant Training in
Primary Care program supported the education of 4,071 PA students. Of
that number, nearly half were minorities and/or from disadvantaged
backgrounds. More than half of the institutions which were awarded
grant funds through this program were focused on primary care, and most
of them were located in rural and/or medically underserved areas. At
the same time, the Expansion of Physician Assistant Training (EPAT)
program under PCTE assisted 429 PA students, 120 of whom graduated at
the end of the 2013-2014 academic year. Over 50 percent of these
graduates planned to practice in a rural or medically underserved area,
and a similar number planned to work in a primary care setting.
In addition to creating more opportunities for PA students to
pursue their education, Title VII funding has helped PA programs expand
clinical rotations in rural and medically underserved areas. This
expansion has benefited local residents who previously had limited
access to care while exposing PA students to diverse clinical
environments. In many cases, new PAs will choose to remain in the area
in which they completed their education. In fact, a review of PA
graduates from 1990-2009 showed that PAs who graduated from programs
supported by Title VII were 47 percent more likely to work in rural
health clinics than graduates of other programs. As such, continued
funding of PA educational programs under Title VII is a win-win
scenario for underserved communities and for the Nation's healthcare
workforce.
PAs in Primary Care
Of the more than 100,000 PAs currently practicing in the U.S., more
than 30 percent work in primary care settings. PAs are one of three
primary care providers who may participate in the NHSC, which provides
loan forgiveness and scholarship awards to more than 10,000 healthcare
professionals who commit to serving for 2 years in medically
underserved areas. Additionally, PAs provide medical care in community
health centers (CHCs), and in some cases, serve as CHC directors. CHCs
provide cost-effective healthcare throughout the country and serve as
medical homes for millions of patients who live in medically
underserved areas. CHCs provide a wide variety of healthcare services
through team-based care, providing high quality healthcare to CHC
patients and significantly reducing medical expenses. AAPA was pleased
that funding was approved for both NHSC and CHCs in the House-passed
SGR reform package (H.R. 2). In keeping with that language, AAPA
strongly supports continued funding of both of these programs.
Summary
According to a HRSA study released in November 2013, increased use
of PAs along with nurse practitioners could help to alleviate the
projected shortage of physicians (20,400 by 2020), reducing this need
to only 6,400 primary care providers. As a result, strong Federal
support for PA education programs is necessary to ensure that all
Americans have access to high quality healthcare.
AAPA appreciates the opportunity to present our views on the fiscal
year 2016 appropriations for Title VII. We appreciate Congress's past
support of Title VII programs, and we look forward to continuing to
work with the Subcommittee to this end.
[This statement was submitted by Sandy Harding, MSW, Senior
Director, Federal Advocacy.]
______
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 on
behalf of our members and the Nation's larger museum community. My name
is Ford Bell and I serve as President of the American Alliance of
Museums. I respectfully request that the Subcommittee make a renewed
investment in museums in fiscal year 2016. I urge you to fully fund the
Office of Museum Services (OMS) at the Institute of Museum and Library
Services (IMLS) at its authorized level of $38.6 million.
The Alliance is proud to represent the full range of our Nation's
museums--including aquariums, art museums, botanic gardens, children's
museums, culturally specific museums, historic sites, history museums,
maritime museums, military museums, natural history museums,
planetariums, presidential libraries, science and technology centers,
and zoos, among others--along with the professional staff and
volunteers who work for and with museums.
Museums are economic engines and job creators: We are proud to
report that U.S. museums employ 400,000 people and directly contribute
$21 billion to their local economies.
This Subcommittee may be especially interested in the ways museums
are providing educational programming and the results of this
investment:
--Museums spend more than $2 billion a year on education activities;
the typical museum devotes three-quarters 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, mathematics and science in third
grade than children who did not. This benefit is also seen in
the subgroup of children who are most at risk for deficits and
delays in achievement.
--Students who attend a field trip to an art museum experience 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, local or core curriculum, tailoring
their programs in math, science, art, literacy, language arts,
history, civics and government, economics and financial
literacy, geography and social studies.
--Many museums are tailoring programs to serve homeschooling
families.
IMLS is the primary Federal agency that supports the museum field,
and OMS awards grants in every State to help museums digitize, enhance
and preserve their collections; provide teacher training; and create
innovative, cross-cultural and multi-disciplinary programs and exhibits
for schools and the public.
In late 2010, legislation to reauthorize IMLS for 5 years was
enacted (by voice vote in the House and by unanimous consent in the
Senate). The bipartisan reauthorization included several provisions
proposed by the museum field, including enhanced support for
conservation and preservation, emergency preparedness and response and
statewide capacity building. The reauthorization also specifically
supports efforts at the State level to leverage museum resources,
including statewide needs assessments and the development of State
plans to improve and maximize museum services throughout the State.
That bill (Public Law 111-340) authorized $38.6 million for the IMLS
Office of Museum Services to meet the growing demand for museum
programs and services. The fiscal year 2015 appropriation of $30.1
million represents a nearly 15 percent decrease from the fiscal year
2010 appropriation of $35.2 million.
We applaud the Administration's fiscal year 2016 budget for
requesting a significant increase--to $35.1 million--for the Office of
Museum Services. It would help museums make an impact in several
priority areas identified by the agency, such as STEM education and
makerspaces, a comprehensive collections care survey, and early
learning. We also applaud the 30 Senators who wrote to you in support
of fiscal year 2016 OMS funding, including subcommittee members Durbin,
Reed, Shaheen, Schatz, and Baldwin.
Here are a few examples, from just 2014, of how IMLS Office of
Museum Services funding is used:
STEM Education.--The Missouri Botanical Garden (St. Louis, MO) was
awarded $140,605 to work with six urban schools in creating new STEM
educational opportunities for teachers and students. Students will
focus on garden research themes such as the medicinal uses of plants,
their ecological value, or their role as a food source. Multiple
experiences at garden sites, follow-up programming, and teacher
professional development are all designed in alignment with State
standards to increase STEM proficiency.
Improving Life for People with Dementia.--Frye Art Museum (Seattle,
WA) was awarded $121,824 to expand its arts engagement program for
people living with dementia and their care partners to serve
participants at later stages of the disease. The museum will offer
gallery tours, art-making classes, and an interactive film program;
convene a professional development conference on art, creativity and
dementia; establish a student internship in creative aging with a local
university; publish a report and present the results of the program
pilot at conferences; and present an education workshop for caregivers
and health providers on techniques for incorporating art into dementia
care. Participants in the program will develop connections with care
partners to reduce feelings of isolation and depression and to enhance
quality of life for people living with dementia.
Farming Education.--Rice County Historical Society (Lyons, KS) was
awarded $34,545 to create ``Agricultural Options,'' an exhibit on
farming that explores the values associated with the land and farming
practices that are profitable yet sustainable. The exhibit will
identify trends in farming, make connections with environmental issues
linked to the land, and enhance the visitor's experience through
educational activities. The exhibit's educational activities will
include lessons for three grade levels, a driving tour, and interactive
sites.
Collecting Veterans' Stories.--National Vietnam Veterans Art Museum
(Chicago, IL) was awarded $20,050 to develop ``Sound Off,'' a living
oral history archive that uses innovative technology to place the
learner at the center and engage audiences--especially veterans and
their families as well as students--in the arts, history, and civics.
The museum will develop and install an onsite recording booth where
veterans can record oral histories of their time in service; develop a
new mobile app to record and archive interviews with veterans unable to
visit the museum in person; and create a curriculum for high school
students to learn about art, history, and civics based on the museum's
collection and these oral histories.
Healthy Kids.--Children's Museum of Oak Ridge (Oak Ridge, TN) was
awarded $137,108 to plan, develop, and construct ``Kids in Action,'' a
healthy living exhibit and accompanying educational programs to support
healthy nutrition, healthy activity, STEM (Science, Technology,
Engineering, and Mathematics) education, and community wellness.
Through partnerships with East Tennessee Children's Hospital, Oak Ridge
Associated Universities, and the University of Tennessee Agriculture
Extension the ``Kids in Action'' initiative will use fun and engaging
activities, including a human body exhibit, to raise awareness in the
community about healthy nutrition and exercise.
Collections Care and Access.--Redwood Library and Athenaeum
(Newport, RI) was awarded $19,455 to inventory, catalog, and update
records of its collection of approximately 1,600 paintings, works on
paper, sculptures, furniture, and decorative arts. The museum will
publish the records and images on its website and on Newportal, a
collaborative website of five cultural institutions in Newport County,
Rhode Island.
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 required of museums, grants often spur
additional giving by private foundations and individual donors. Two-
thirds of IMLS grantees report that their Museums for America grant
positioned the museum to receive additional private funding.
IMLS grants to museums are highly competitive and decided through a
rigorous, peer-reviewed process. Even the most ardent deficit hawks
view the IMLS grant-making process as a model for the Nation. Due to
the large number of grant applications and the limited funds available,
many highly-rated grant proposals go unfunded each year. In 2014:
--Only 35 percent of Museums for America/Conservation Project Support
project proposals were funded;
--Only 22 percent of National Leadership project proposals were
funded;
--Only 17 percent of Sparks Ignition Grants for Museums project
proposals were funded;
--Only 64 percent of Native American/Hawaiian Museum Services project
proposals were funded; and
--Only 37 percent of African American History and Culture project
proposals were funded.
If I can provide any additional information about the essential
role of the museums in your community, I would be delighted to do so.
Thank you once again for the opportunity to submit this testimony
today.
[This statement was submitted by Dr. Ford W. Bell, President,
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 35,000 members is to prevent and cure cancer through
research, education, communication and collaboration. We thank the
United States Congress for its longstanding, bipartisan support for the
National Institutes of Health (NIH) and for its commitment to funding
cancer research. We especially thank Senate Appropriations Chairman
Thad Cochran and Vice-Chairwoman Barbara Mikulski for their unwavering
support for the NIH, and we appreciate the opportunity to provide
testimony on the importance of funding for the NIH and cancer research.
The AACR calls on Congress to provide at least $32 billion for the
NIH in fiscal year 2016 (a minimum of a 5.6 percent increase), and to
provide a commensurate increase for the National Cancer Institute
(NCI). Putting the NIH and NCI back on a path of sustained and
predictable funding growth is the only way we will seize the
unparalleled scientific opportunities in cancer research that lie
before us, and increased funding is paramount to overcoming the
challenges we face in conquering this complex disease. Furthermore, we
call on Congress to fund the Precision Medicine Initiative, so that the
extraordinary knowledge obtained through past Federal investments like
the Human Genome Project can be fully realized and translated into
therapies for cancer and a myriad of other diseases.
We live in an extraordinary time of scientific opportunity, in
which we are rapidly developing the tools necessary to translate basic
biological discoveries into therapies that can save and improve
millions of lives. Nowhere is this more evident than in precision
medicine, an area in which cancer research has been leading the way for
more than a decade. If we are to support and foster the goals of the
President's Precision Medicine Initiative, a strong commitment to
funding medical research is required.
Investments in Cancer Research are Saving and Improving Lives
Significant progress has been made against cancer because of the
decades of Federal investment in medical research and the dedicated
work of researchers, physician-scientists, and patient advocates
throughout the biomedical research enterprise. Federal support allows
for new and improved approaches to the prevention, detection,
diagnosis, and treatment of cancer, and thanks to past investments in
basic research, we have never been better positioned to capitalize on
our hard-won understanding of what causes and drives cancer. This
knowledge of cancer biology is providing the foundation for new
treatments and preventive strategies, and it is accelerating progress
against the more than 200 diseases we call cancer. Federal investment
in cancer research also leads to progress in other fields. For example,
drugs originally developed for cancer patients have led to treatments
for macular degeneration, atherosclerosis, psoriasis, rheumatoid
arthritis, and hepatitis among others.
As is detailed in the AACR Cancer Progress Report 2014, 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. In
fact, the number of cancer survivors living today in the United States
is estimated to be more than 14 million. Cancer research also is
transforming lives by allowing scientists to advance immunotherapeutic
development, develop new molecularly targeted therapies and consider
ways to overcome drug resistance.
Consider the progress made in just the last 18 months. Cancer
patients now have access to:
--7 new drugs to treat a variety of cancers, including a ``first in
class'' immunotherapy to treat a pediatric cancer;
--4 new uses for previously approved cancer drugs;
--1 new cancer screening test; and,
--1 new cancer prevention vaccine.
The vigorous pursuit of new breakthroughs in cancer research and
biomedical science is also serving 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 2012 alone, and
generated more than $57.8 billion in new economic activity.
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 across the
Federal Government. We can continue to make significant advances, but
only if we continue to allocate the required resources at the Federal
level to do so. The NIH and NCI must be put back on a path of
sustained, predictable growth this year and in the years to come.
Past Investments in Cancer Research are Yielding Dividends Today
The Nation's historical investment in cancer research is
unquestionably having an impact, and we are seeing results in the form
of clinical advances and new treatments. While the advances over the
past few decades are too numerous to list here, breakthroughs in two
areas--precision medicine and cancer immunotherapy--are of particular
importance and are described in greater detail below.
Precision Medicine is Re-shaping the Diagnosis and Treatment of Cancer
A significant milestone for cancer research was the discovery that
cancer develops as a result of alterations in the genetic material of
cells. Research in genomics has propelled technological innovations
that are making it possible to efficiently read every known component
of the DNA from an individual's cancer. Capitalizing on these advances
is the goal of large-scale genomic enterprises such as The Cancer
Genome Atlas (TCGA) and the International Cancer Genome Consortium
(ICGC). These and similar initiatives aim to identify all of the
genomic changes in many types of cancer by comparing the DNA in a
patient's normal tissue with the tumor DNA, in order to discover the
genetic alterations that drive a given cancer. This groundbreaking
approach--treating cancer based on the genetic and molecular profile of
a patient's tumor--is often referred to as personalized, or precision,
cancer medicine.
The success of precision medicine is exemplified in the development
of drugs for patients with an aggressive form of breast cancer. More
than 45,000 individuals will be diagnosed with a form of breast cancer
that overexpresses the protein HER-2. Historically, outcomes for
patients with HER-2 positive breast cancer were poor. But with the
knowledge gained through genomic-based research and discovery, four
HER-2 targeted therapies have been approved in the last 5 years,
revolutionizing the treatment of the disease and bringing hope and
significantly prolonged survival to tens of thousands of breast cancer
patients.
As you can see, these discoveries are changing the way researchers
view cancers, categorizing them more by the genetic changes that drive
them and less by where they originate--in the breast, brain, lung, or
liver, for example. It is also transforming the detection, diagnosis,
and treatment of cancer. Although to date, large-scale genomic analyses
have been completed for just a few types of cancer, with research into
many others underway, the advances made are a step toward a future
where most cancer treatment and prevention strategies are based on both
a person's genetic makeup and the genetic makeup of their specific
cancer. Had the Federal Government not made the wise decision to invest
in mapping the human genome, none of this progress would have been
possible.
Cancer Immunotherapy
Another milestone for cancer research was the discovery that the
immune system can identify and eliminate cancer cells the way it does
disease-causing pathogens. The study of the structure and function of
the immune system is a field of research called immunology and is more
than 100 years old. Tumor immunology (sometimes called cancer
immunology) is the study of interactions between the immune system and
cancer cells.
Because the immune system naturally eliminates some cancers before
they become life threatening, researchers thought that it should be
possible to develop therapies that would train a patient's immune
system to destroy their cancer. Such therapies, referred to as
immunotherapies, are beginning to revolutionize the treatment of some
cancers, such as metastatic melanoma and chronic lymphocytic leukemia,
by taking the brakes off or pressing the accelerator on the body's
immune system, or by flagging cancer cells for destruction by the
immune system.
While treating cancer by harnessing the body's own immune system is
a dream dating back to the 1890s, tangible progress in this area has
been recent. Until the first therapeutic cancer vaccine, sipuleucel-T
or Provenge, was approved in 2010 for the treatment of prostate cancer,
investigational immunotherapies were effective in so few patients that
they did not become established treatment options. Today, with expanded
knowledge thanks to basic and clinical research funded by the NIH,
several types of immunotherapies have been approved and many more are
in the pipeline. Researchers also are pursuing their use in combination
with one another in the hopes of yielding even more positive results in
patients with cancers such as advanced melanoma and chronic myelogenous
leukemia, among others. The success of immunotherapies in the past few
years underscore how decades of research coupled with innovation in
numerous disciplines are paying dividends for many cancer patients.
Thanks to Federal investment in research and the persistence and
dedication of researchers across the biomedical research enterprise,
the dream of immunotherapy is being realized.
Cancer remains a significant public health challenge
Even in the face of the tremendous progress discussed above, cancer
remains a formidable opponent. An estimated 1.65 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 589,000 people will die this year in the U.S.
from the disease, which is more than 1,600 people each day. In fact,
cancer will account for nearly one in every four deaths, making it the
second most common cause of disease-related death in the United States.
There also remain a number of cancers, including pancreatic, liver and
lung cancers, for which the mortality rate remains extraordinarily high
and 5-year survival rates are typically less than 50 percent. Further,
racial and ethnic minorities, as well as low-income and elderly
populations, continue to suffer disproportionately in cancer incidence,
prevalence, and mortality.
Because of the steady increase in cancer incidence rates, which is
mainly due to our increasingly aging population and the enormous
complexity of many cancers, 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 economic burden of which
exceeded $263 billion in 2010 and is expected to continue to rise as
the number of cancer deaths increases.
Progress against cancer requires a sustained commitment to funding
As we look to a future in which cancer care will be transformed by
the discoveries made in laboratories across the country, increased
funding for cancer research from the Federal Government and other
sources is essential if we are to continue to pursue a comprehensive
understanding of the biology of cancer. First and foremost, our ability
to realize the exciting future that awaits us depends on a strong
commitment by Congress to provide the necessary funding for the NIH and
the NCI. As a country we must set priorities at this difficult time in
our history--and the government can do no better with its money than
continue to invest in medical research.
This is a defining time in America's commitment to finally defeat
cancer. We must seize the opportunity to invest our Nation's remarkably
productive medical research ecosystem by providing at least $32 billion
for the NIH in fiscal year 2016 and funding important programs such as
the Precision Medicine Initiative. This investment will ensure 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 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 3,600 individual and 54 institutional members of
the American Association for Dental Research (AADR), I am pleased to
submit testimony describing AADR's fiscal year 2016 requests, which
includes at least $32 billion for the National Institutes of Health
(NIH) and $425 million for the National Institute of Dental and
Craniofacial Research (NIDCR). These funding recommendations represent
the minimal needs of the research community while at the same time
taking into consideration the continued tight budget climate dictated
by the caps established by the Budget Control Act of 2011.
I want to emphasize, the current austerity frame is unworkable and
insufficient to meet our Nation's mounting health demands. According to
our members, when sequestration hit it was a game-changer. Established
faculty had difficulty getting grants renewed, new faculty hit a
funding wall and people employed by laboratories in communities
throughout the country lost their jobs. Moreover, the current budget
climate creates an atmosphere that is very discouraging to new
scientific investigators whose research proposals are good enough to be
funded, but were not because of the budget cuts. We are at risk of
losing them and their promising research ideas--ideas that might lead
to significant advances in dental, oral health and craniofacial health.
We therefore strongly urge Congress to take the steps necessary to put
an end to sequestration permanently and reinvest in America's health.
It is important to note that when adjusted for inflation, the NIDCR
budget is 25 percent, or $94 million, less than it was in 2004,
resulting in the lowest number of grants awarded in 14 years. This
decline in purchasing power is particularly troubling because the
improvements in oral health during the last half century are largely
credited to research supported by NIDCR. This decline in funding will
slow or limit future breakthroughs. 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, talk
and maintain proper nutrition. Scientists also have discovered
important linkages between gum disease, or periodontal disease, and
heart disease, stroke, diabetes and pancreatic cancer.
In spite of these improvements, however, treating oral health
conditions is costing this Nation $111 billion in expenditures on
dental services in 2013. While tooth decay and gum disease remain the
most prevalent cost-drivers, complete tooth loss, oral cancer and
craniofacial congenital anomalies, such as cleft lip and palate, are
also health and economic burdens to the American people. Moreover, oral
health disparities persist for many racial and ethnic groups. By
providing $425 million in fiscal year 2016 for NIDCR, dental, oral and
craniofacial researchers will be able to build upon the gains of past
decades, creating less invasive, cost-effective and more efficient ways
to improve oral health. Below are some examples highlighting the
important work supported by NIDCR:
--Precision Oncology.--NIDCR-funded researchers are investigating the
role genetics play in head and neck cancers, and paving the way
for efforts in precision oncology. Examining genetic data may
lead to a better understanding of these diseases, leading to
the identification of biomarkers that will allow for earlier--
perhaps life-saving--detection and enable more effective
treatment of head and neck cancers.
--Point of Care Diagnostics.--Salivary diagnostics are measures that
draw and analyze saliva to test for conditions such as HIV,
human papillomavirus (HPV), substance abuse, caries,
periodontitis and oral cancer. As a result of research
supported by NIDCR over the last decade, diagnostics also are
showing great promise in screening for diabetes, heart disease,
lung cancer, ovarian cancer and pancreatic cancer.
--Dental Caries.--Dental caries, or tooth decay, remain the most
prevalent chronic disease in both children and adults resulting
in a substantial economic and health burden to the American
people. Although caries has significantly decreased for most
Americans over the past four decades, disparities remain among
some population groups. Additional research is needed to
enhance efforts to address dental caries including studies on
oral microbiology, oral health literacy and the reduction of
free sugars as having additional health benefits.
--Enhanced Tissue Regeneration.--NIDCR-funded scientists have
developed effective techniques to prevent inflammation from
interfering with the use of stem cells to form bone and
cartilage for oral, dental and craniofacial purposes. The
isolation and enrichment of stem cells is also being explored,
which would enhance the cells' ability to regrow bone and
cartilage, with potential impacts throughout the health
sciences sector.
--Cleft Lip and/or Cleft Palate.--Craniofacial anomalies such as
cleft lip and/or cleft palate are among the most common birth
defects. Both genetic and environmental factors contribute to
oral clefts. Studies supported by NIDCR are providing important
new leads about the role genetic factors and gene-environment
interactions play in the development of these conditions.
--Evidenced-Based Practice.--NIDCR awarded a 7-year grant that
consolidates its dental practice-based research network
initiative into a unified nationally coordinated effort. The
consolidated initiative, the National Dental Practice-Based
Research Network (NDPBRN) is headquartered at the University of
Alabama at Birmingham School of Dentistry. A dental practice-
based research network is an investigative union of practicing
dentists and academic scientists. The network provides
practitioners with an opportunity to propose or participate in
research studies that address daily issues in oral healthcare.
These studies help to expand the profession's evidence base and
further refine care.
Our members remain concerned that unless Congress provides NIH with
stable, predictable and increased funding our ability to attract the
next generation of scientists will stall; the Nation's standing as a
world leader in science will decline; and innovation necessary to push
the boundaries of research will be stymied. Future advances in
healthcare depend on a sustained investment in basic research to
identify the fundamental causes and mechanisms of disease, accelerate
technological development and discovery, and ensure a robust pipeline
of creative and skillful biomedical researchers. For these reasons, I
implore you to work in a bipartisan manner and provide funding
increases for NIH and NIDCR in fiscal year 2016.
In addition to the NIH, AADR members care deeply about the Title
VII Health Resources and Services Administration (HRSA) programs
training the dental health workforce, the Centers for Disease Control
and Prevention (CDC) Division of Oral Health's public health prevention
efforts, data from the National Center for Health Statistics (NCHS) and
the Agency for Healthcare Research & Quality (AHRQ). Please support
AADR's funding recommendations for these agencies depicted in the chart
below.
------------------------------------------------------------------------
Fiscal Year
-----------------------------------------
Agency 2016 2016
2012 2013 2014 2015 PBR AADR
------------------------------------------------------------------------
NIH........................... 30.7b 29.3b 30.0b 30.3b 31.3b 32.0b
NIDCR......................... 410.3 386.8 397.8 397.7 406.7 425.0
m m m m m
NCATS......................... 574.8 542.1 631.5 635.2 660.1 660.1
m m m m m m
AHRQ.......................... 405.1 429.4 371.0 364.0 276.0 375.0
m m m m m m
CDC, Oral Health.............. 14.6m 13.8m 15.7m 15.7m 15.7m 20.0m
CDC, NCHS..................... 153.8 153.8 155.3 155.4 172.0 172.0
m m m
HRSA, Title VII Oral Health... 32.4m 30.7m 32.0m 33.9m 33.9m 35.0m
------------------------------------------------------------------------
Thank you for the opportunity to submit this testimony. AADR stands
ready to answer any questions you may have.
[This statement was submitted by Paul Krebsbach, DDS, Ph.D.,
President, American Association for Dental Research.]
______
Prepared Statement of the American Association of Colleges of Nursing
As the national voice for baccalaureate and graduate nursing
education, the American Association of Colleges of Nursing (AACN)
represents over 760 schools of nursing that educate over 450,000
students and employ more than 17,000 faculty members. Collectively,
these institutions produce approximately half of our Nation's
Registered Nurses (RNs) and all nurse faculty members, Advanced
Practice Registered Nurses (APRNs), and nurse scientists.
AACN respectfully requests that the subcommittee invests in
America's health by providing $244 million for HRSA's Nursing Workforce
Development programs (authorized under Title VIII of the Public Health
Service Act [42 U.S.C. 296 et seq.]) and $150 million for the National
Institute of Nursing Research (NINR) within the National Institutes of
Health (NIH) in fiscal year 2016. These levels will ensure that our
Nation's nurses are prepared to care for the growing number of patients
requiring a complex range of healthcare services.
the role of nurses in our healthcare system
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 sector of the healthcare
workforce with over three million licensed providers. Nurses serve in a
multitude of settings, including hospitals, long-term care facilities,
community centers, local and State health departments, schools,
workplaces, and patient homes. Nurses treat patients across the entire
life span, and are present when patients and their families contemplate
major decisions surrounding their healthcare. RNs and APRNs are
responsible for providing patient education to ensure that individuals
can follow through with their plan of care, thus helping to curb costly
readmissions.
In light of the national effort to improve access to care, it is
evident that our system will continue to transform. Innovative delivery
models that promote efficiency and effectiveness require a team-based
approach. AACN recognizes that in order for the profession to advance
in accordance with the demand for high-quality health services, nurses
must collaborate with other health professions to provide safe, cost-
effective, patient-centered care. In order to do so, it is imperative
that individuals seeking to enter into the profession and nurses in
pursuit of advanced degrees have the means to achieve these goals,
particularly when the cost of higher education is not within financial
reach. Investments are necessary to educate the RNs and APRNs who will
provide the care that Americans need now and in years to come.
how title viii programs serve the public today and in the future
For over five decades, the Nursing Workforce Development programs
have helped build the supply and distribution of qualified nurses to
meet our Nation's healthcare needs. The programs bolster nursing
education at all levels, from entry-level preparation through graduate
study, and provide support to educate nurses for practice in rural and
medically underserved communities. Title VIII programs are essential to
ensuring that the demand for nursing care is met by supporting future
practicing nurses and the faculty who educate them. Moreover, they
align with the Institute of Medicine's Future of Nursing: Leading
Change, Advancing Health, which calls for nurses to ``achieve higher
levels of education and training through an improved education system
that promotes seamless academic progression.'' \1\
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\1\ Institute of Medicine. (2010). Future of Nursing: Leading
Change, Advancing Health Report Recommendations. Retrieved from: http:/
/www.iom.edu/Reports/2010/The-Future-of-Nursing-Leading-Change-
Advancing-Health/Recommendations.aspx.
---------------------------------------------------------------------------
Title VIII programs address specific aspects of the nursing
pipeline and patient populations so that they are met in accordance
with their needs. For example, our healthcare system is experiencing a
need for a greater number of APRNs (which include nurse practitioners
(NPs), certified registered nurse anesthetists (CRNAs), certified
nurse-midwives (CNMs), and clinical nurse specialists (CNSs)). In fact,
according to the U.S. Bureau of Labor Statistics, the projected
employment of NPs, CRNAs and CNMs is expected to grow 31 percent
between years 2012-2022.\2\ Greater utilization of APRNs provides a
real solution to the challenge of employing high-quality providers in
underserved areas. Title VIII programs, such as the Advanced Education
Nursing Traineeship (AENT) and Nurse Anesthetist Traineeship (NAT),
facilitate this process by providing financial assistance to students
pursuing an advanced practice degree. The AENT and NAT programs provide
full or partial reimbursement for the cost of tuition and program fees,
and in academic year 2013-2014, supported 5,650 students. Of these
recipients, 56 percent received training in medically underserved
areas, and 48 percent received training in primary care settings.
Furthermore, 40 percent of trainees were from minority or disadvantaged
backgrounds.\3\
---------------------------------------------------------------------------
\2\ U.S. Bureau of Labor Statistics. (2014). Occupational Outlook
Handbook. Registered Nurses. Retrieved from: http://www.bls.gov/ooh/
healthcare/registered-nurses.htm.
\3\ U.S. Department of Health and Human Services. (2015). Health
Resources and Services Administration fiscal year 2016 Justification of
Estimates for Appropriations Committees. Retrieved from: http://
hrsa.gov/about/budget/budgetjustification2016.pdf.
---------------------------------------------------------------------------
According to U.S. Census Bureau, individuals from ethnic and
minority groups account for more than one-third of the U.S. population,
and by year 2044, more than half of all Americans are projected to
belong to a minority group.\4, 5\ AACN data reveals that approximately
30 percent of nursing students at each level (baccalaureate, master's
and doctoral) represent minority populations.\6\ As America's
population becomes increasingly diverse, it is important that our
Nation's healthcare workforce reflects the patients it serves and that
care is delivered in a culturally competent manner. Strengthening
representation from minority groups within the nursing pipeline will be
particularly critical in over the next few decades.
---------------------------------------------------------------------------
\4\ U.S. Census Bureau. (2012). U.S. Census Bureau Projections Show
a Slower Growing, Older, More Diverse Nation a Half Century from Now.
Retrieved from: http://www.census.gov/newsroom/releases/archives/
population/cb12-243.html.
\5\ U.S. Census Bureau. (2015). Projections of the Size and
Composition of the U.S. Population: 2014 to 2060. Retrieved from:
http://www.census.gov/content/dam/Census/library/publications/2015/
demo/p25-1143.pdf.
\6\ American Association of Colleges of Nursing. (2014). Policy
Brief: The Changing Landscape: Nursing Student Diversity on the Rise.
Retrieved from: http://www.aacn.nche.edu/government-affairs/Student-
Diversity-FS.pdf.
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The Title VIII Workforce Diversity Grants program specifically
targets groups under-represented in nursing by awarding grants and
contract opportunities to schools of nursing, nurse-managed health
centers, academic health centers, State or local governments, and
nonprofit entities looking to increase access to nursing education for
these students. In academic year 2013-2014, the program supported
16,997 students and aspiring students, partnering with over 1,000
clinical training sites, of which 54 percent were located in medically
underserved areas.\3\ The goals of this program directly align with the
IOM Future of Nursing report which recommends a renewed focus on
diversity in nursing education as the Nation looks to enhance the
workforce to meet patient needs.\2\
Other equally important components of education, practice, and
patient needs that Title VIII programs address include developing
highly-educated nursing faculty, loan repayment and scholarship
opportunities for students in exchange for service in a Critical
Shortage Facility, supporting education of students who care for
geriatric patients, and providing assistance for projects within
schools of nursing, academic health centers, and nurse-managed health
clinics. The dollars invested in Title VIII programs not only benefit
the direct recipients, but also the countless patients that receive
care from nurses and nursing students supported by these programs. AACN
respectfully requests $244 million for the Title VIII Nursing Workforce
Development programs in fiscal year 2016.
national institute of nursing research: improving care through evidence
As one of the 27 Institutes and Centers at the NIH, NINR's work
develops knowledge to:
--Build the scientific foundation for clinical practice;
--Prevent disease and disability;
--Manage and eliminate symptoms caused by illness, and;
--Enhance end-of-life and palliative care.\7\
---------------------------------------------------------------------------
\7\ National Institute of Nursing Research. (2012). Retrieved from:
https://www.ninr.nih.gov/site-structure/faq#nursingresearch.
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Broadly speaking, these priorities focus on reducing disease and
promoting health and wellness across the entire lifespan. Nurse
scientists, often working collaboratively with other health
professions, generate the evidence that drives practice. NINR examines
ways to improve care models to deliver safe, high-quality, and cost-
effective health services to the Nation. According to 2013-2014 AACN
data, there were 5,290 doctoral students pursuing their PhD within AACN
member schools.\8\ NINR dollars afford budding researchers
opportunities to contribute to these priorities through their
innovative work.
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\8\ American Association of Colleges of Nursing. (2015). 2013-2014
Enrollment and Graduations in Baccalaureate and Graduate Programs in
Nursing. Washington, DC.
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In addition, NINR is committed to improving the health of the
global community and understands that our Nation does not exist in a
silo. The state of healthcare abroad impacts foreign and domestic
populations. NINR examines how nursing care can improve regions of the
world facing severe health and economic challenges. Examples of NINR-
funded global health research include reduction of HIV transmission and
strengthening community-based outreach to reduce childhood illness.
Lastly, NINR allots a generous portion of its budget towards
training new nursing scientists, thus helping to sustain the longevity
and success of nursing research. NINR training programs such as the
Career Transitions awards and Graduate Partnerships Program develop
future nurse researchers, many of whom also serve as faculty in our
Nation's nursing schools.
AACN respectfully requests $150 million for the NINR in fiscal year
2016. The Ad Hoc Group for Medical Research requests at least $32
billion for NIH in fiscal year 2016, and the request level of $150
million for NINR denotes the same percentage increase for NIH applied
to NINR.
Thank you for considering AACN's request of $244 million for the
Title VIII Nursing Workforce Development programs and $150 million for
the National Institute of Nursing Research in fiscal year 2016. If you
have any questions, or if AACN can be of assistance, please contact
AACN's Senior Director of Government Affairs and Health Policy, Dr.
Suzanne Miyamoto.
______
Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
The American Association of Colleges of Osteopathic Medicine
(AACOM) strongly supports restoring funding for discretionary Health
Resources and Services Administration (HRSA) programs to $7.48 billion;
funding for key priorities in HRSA's Title VII programs under the
Public Health Service Act; long-term sustainable funding for the
Teaching Health Center Graduate Medical Education (GME) Program;
sustainment of the National Health Service Corps (NHSC) and other
scholarship and loan repayment programs; $4 million for the Rural
Physician Training Grants; $32 billion for the National Institutes of
Health (NIH); and $375 million in base discretionary funding for the
Agency for Healthcare Research and Quality (AHRQ).
AACOM represents the 30 accredited colleges of osteopathic medicine
in the United States. These colleges are accredited to deliver
instruction at 42 teaching locations in 28 States. In the 2014-2015
academic year, these colleges are educating over 24,600 future
physicians--more than 25 percent of new U.S. medical students. Six of
the colleges are publicly controlled; 24 are private institutions.
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 special and underserved populations, as
well as increase minority representation in the healthcare workforce.
As the demand for health professionals increases in the face of
impending shortages, combined with faculty shortages across health
professions disciplines, racial and ethnic disparities in healthcare, a
growing, aging population, and the anticipated demand for increased
access to care, these needs strain an already fragile healthcare
system. AACOM appreciates the investments that have been made in these
programs, and we urge the Subcommittee to include support for the
following programs: the Primary Care Training and Enhancement (PCTE)
Program, the Rural Physician Training Grants, the Centers of Excellence
(COE), the Health Careers Opportunity Program (HCOP), the Scholarships
for Disadvantaged Students (SDS) Program, the Geriatric Education
Centers (GECs), and the Area Health Education Centers (AHECs).
The PCTE Program provides funding to support awards to primary care
professionals through grants to hospitals, medical schools, and other
entities. AACOM supports a minimum of $71 million, a $20 million
increase above the $51 million in the President's fiscal year 2013
budget and a necessary increase over the fiscal year 2015 budget
request of $37 million, to allow for a competitive grant cycle for the
PCTE Program's physician training and development.
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 65 percent of primary care health professional shortage
areas are rural. AACOM supports the President's fiscal year 2016 budget
request of $4 million for 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 the
President's fiscal year 2016 budget request of $25 million for 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 an
appropriation of $14.2 million for HCOP, which would continue the
fiscal year 2015 enacted level.
The SDS Program provides scholarships to health professions
students from disadvantaged backgrounds with financial need, many of
whom are underrepresented minorities. AACOM supports level funding of
$46 million for the SDS Program.
GECs are collaborative arrangements between health professions
schools and healthcare facilities that provide the training of health
professions students, faculty, and practitioners in the diagnosis,
treatment, prevention of disease, disability, and other health issues.
AACOM supports the President's fiscal year 2016 budget request of $34.2
million for 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 work 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 an appropriation of $75 million for
the AHEC Program in fiscal year 2016 and strongly opposes the
elimination of this vital program in the President's fiscal year 2016
budget.
AACOM has concerns with the Administration's budget request that
would cut nearly $16 billion from Medicare GME. Because GME funding is
critical to medical residency training across the country, an
imperative juncture of the development of the future healthcare
workforce, AACOM believes that current GME funding should not be
eliminated and simply shifted into other relevant healthcare workforce
programs. Instead, additional investments in GME are critical to an
already insufficiently-funded system.
AACOM strongly supports the continuation of the THCGME Program,
which provides funding to support primary care medical and dental
residents training in community-based settings. THCs currently train
more than 550 medical and dental residents and are providing more than
700,000 primary care visits in underserved rural and urban communities.
This program will also provide long-term benefits. According to the
HRSA, physicians who train in THCs are three times more likely to work
in such centers and more than twice as likely to work in underserved
areas as physicians who train in other settings. We are pleased to see
a 2-year extension of this program in H.R. 2, the Medicare Access and
CHIP Reauthorization Act of 2015, and look forward to its passage in
the Senate. We will continue to work with Congress to support a
sustainable and viable funding mechanism for the continuation of this
successful program. In addition, we support an investment of $10
million minimally in fiscal year 2016 for THC development grants.
The NHSC supports physicians and other health professionals who
practice in health professional shortage areas across the U.S. In
fiscal year 2014, the NHSC had a total of 9,242 primary care clinicians
providing healthcare services. The NHSC projects that a field strength
of 15,000 primary care clinicians will be in health professional
shortage areas in fiscal year 2016. In addition, more than 1,100
students, residents, and health providers receive scholarships or
participate in the Student to Service Loan Repayment Program to prepare
to practice. Of the new NHSC scholarships and loan repayment awarded to
students (D.O. and M.D.) in fiscal year 2014, 30 percent were awarded
to D.O.s. We are pleased to see a 2-year extension of this program in
H.R. 2, the Medicare Access and CHIP Reauthorization Act of 2015, and
look forward to its passage in the Senate. AACOM supports the
continuation and sustainability of this critical program.
Research funded by the NIH leads to important medical discoveries
regarding the causes, treatments, and cures for common and rare
diseases, as well as disease prevention. These efforts improve our
Nation's health and save lives. To maintain a robust research agenda,
further investment will be needed. AACOM recommends $32 billion for the
NIH.
AHRQ supports research to improve healthcare quality, reduce costs,
advance patient safety, decrease medical errors, and broaden access to
essential services. AHRQ plays an important role in producing the
evidence base needed to improve our Nation's health and healthcare. The
incremental increases for AHRQ's Patient Centered Health Research
Program in recent years 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
$375 million in base discretionary funding, restoring the base to
fiscal year 2011 levels for the AHRQ. This investment will preserve
AHRQ's current programs while helping to restore its critical
healthcare safety, quality, and efficiency initiatives.
AACOM is grateful for the opportunity to submit its views and looks
forward to continuing to work with the Subcommittee on these important
matters.
[This statement was submitted by Stephen C. Shannon, D.O., M.P.H.,
President and Chief Executive Officer, American Association of Colleges
of Osteopathic Medicine.]
______
Prepared Statement of the American Association of Colleges of Pharmacy
The American Association of Colleges of Pharmacy (AACP) is pleased
to submit this statement for the record regarding fiscal year 2016
funding. The 134 accredited pharmacy schools are engaged in a wide
range of programs funded by the agencies of the Department of Health
and Human Services (HHS) and the Department of Education. Recognizing
the difficult task of balancing needs and expectations with fiscal
responsibility, AACP respectfully requests that the following agencies
and programs be funded appropriately as you undertake your
deliberations:
--Health Resources and Services Administration (HRSA)--$7.48 billion
--Title VII & VIII--$524 million
--Agency for Healthcare Research and Quality (AHRQ)--$375 million
--Centers for Disease Control and Prevention (CDC)--$7.8 billion
--National Center for Health Statistics (NCHS)--$172 million
--National Institutes of Health (NIH)--$32 billion
In addition, AACP respectfully requests that the Fund for the
Improvement of Post-Secondary Education (FIPSE) be funded at $100
million and that the maximum Pell grant appropriated discretionally be
maintained at $4860.
u.s. department of health and human services
Health Resources and Services Administration (HRSA).--AACP supports
the Friends of HRSA recommendation of $7.48 billion for HRSA in fiscal
year 2016. Dr Bryan Love from the South Carolina College of Pharmacy
received $94.900 from HRSA to research the connection between
antibiotics and food allergies in children. Faculty at schools of
pharmacy are integral to the success of many HRSA programs conducting
research on rural health delivery via telemedicine. Schools of pharmacy
are supported by HRSA to operate some of the 57 Poison Control Centers.
AACP supports the Bureau of Health Workforce (BHW) and the National
Center for Health Workforce Analysis (NCHWA). Through the Pharmacy
Workforce Center, AACP joins HRSA-funded efforts to compile national
health workforce statistics to better inform future health professions
workforce needs in the United States. AACP supports the Health
Professions and Nursing Education Coalition (HPNEC) recommendation of
$524 million for Title VII and VIII programs in fiscal year 2016. AACP
member institutions are active participants in BHW programs. Schools of
pharmacy participate in Title VII programs, including Geriatric
Education Centers and Area Health Education Centers (AHEC). These
community-based, interprofessional programs are essential for
supporting innovative educational models addressing national issues at
the local level through team-based, patient-centered care. They serve
as valuable experiential education sites for student pharmacists and
other health professions students. Pharmacy schools are eligible to
participate in the Centers of Excellence program and the Scholarships
for Disadvantaged Students program, to increase the number of
underserved individuals attending health professions schools and
increase minority health workforce representation. Colleges of
pharmacy, including Xavier University of Louisiana, develop and
maintain centers of excellence in diversity supported by HRSA Centers
of Excellence grants.
Agency for Healthcare Research and Quality (AHRQ).--AACP supports
the Friends of AHRQ recommendation of $375 million in budget authority
for AHRQ programs in fiscal year 2016. Pharmacy faculty are strong
partners with the Agency for Healthcare Research and Quality (AHRQ).
Dr. C. Daniel Mullins, at the University of Maryland, received $995,295
to study patient-centered involvement in evaluating effectiveness of
treatment.
Centers for Disease Control and Prevention (CDC).--AACP supports
the CDC Coalition recommendation of $7.8 billion for CDC core programs
in fiscal year 2016 and the Friends of NCHS recommendation of $172
million for the National Center for Health Statistics. Information from
the NCHS is essential for faculty engaged in health services research
and for the professional education of the pharmacist. The educational
outcomes for pharmacy graduates include those related to public health.
The opportunity for pharmacists to identify potential public health
threats through regular interaction with patients provides public
health agencies with on-the-ground epidemiologists providing risk
identification measures when patients seek medications associated with
preventing and treating travel-related illnesses. Pharmacy faculty are
engaged in CDC-supported research and activities including delivery of
immunizations, integration of pharmacogenetics in the pharmacy
curriculum, inclusion of pharmacists in emergency preparedness, and the
Million Hearts campaign. Dr. Leigh Ann Ross and Dr. Lauren S.
Bloodworth, at the University of Mississippi received $406,978 from the
CDC and the Mississippi State Department of Health for the Pharmacy
Cardiovascular Risk Reduction Project.
National Institutes of Health.--AACP supports the Adhoc Group for
Medical Research recommendation of at least $32 billion for NIH funding
in fiscal year 2016. Pharmacy faculty are supported in their research
by nearly every institute at the NIH. The NIH-supported research at
AACP member institutions spans the full spectrum from the creation of
new knowledge through the translation of that new knowledge to
providers and patients. In fiscal year 2013, pharmacy faculty
researchers received nearly $311 million in grant support from the NIH.
Academic pharmacy sustains a strong commitment to increasing the number
of biomedical researchers. Dr. Gunda George, at the University of
Minnesota, received $8,300,000 to design, synthesize and evaluate non-
hormonal contraceptives or men and women. Dr. Eli Chapman and Dr. Donna
Zhang, at the University of Arizona received $1,700,000 to study,
``Stress response, p97 and Nrf2 in arsenic-medicated toxicity.''
u.s. department of education
The Department of Education supports the education of healthcare
professionals by assuring access to education through student financial
aid programs, educational research allows faculty to determine
improvements in educational approaches; and the oversight of higher
education through the approval of accrediting agencies. AACP supports
the Student Aid Alliance's recommendations to maintain the
discretionary contribution to the $4860 maximum Pell grant. Admission
to a pharmacy professional degree program requires at least 2 years of
+undergraduate preparation. Student financial assistance programs are
essential to assuring student have access to undergraduate,
professional and graduate degree programs. AACP recommends a funding
level of at least $100 million for the Fund for the Improvement of
Post-Secondary Education (FIPSE) as this is the only Federal program
that supports the development and evaluation of higher education
programs that can lead to improvements in higher education quality.
[This statement was submitted by William Lang, Senior Policy
Advisor, American Association of Colleges of Pharmacy.]
______
Prepared Statement of the American Association of Immunologists
The American Association of Immunologists (AAI), the world's
largest professional society of research scientists and physicians who
study the immune system, respectfully submits this testimony regarding
fiscal year 2016 appropriations for the National Institutes of Health
(NIH). AAI recommends an appropriation of at least $32 billion for NIH
for fiscal year 2016 to fund important ongoing research, strengthen the
biomedical research enterprise, and ensure that the most talented
scientists, trainees, and students are able to pursue careers in
biomedical research in the United States.
nih's essential role in advancing biomedical research
As the Nation's main funding agency for biomedical and behavioral
research, NIH supports the work of ``more than 300,000 researchers at
more than 2,500 universities, medical schools, and other research
institutions in every State and around the world.'' \1\ More than 80
percent of the NIH budget is awarded to these scientists through nearly
50,000 competitive grants; about 10 percent of the NIH budget supports
the work of the almost 6,000 government researchers who work in NIH
laboratories or at the NIH Clinical Center.\2\
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\1\ Http://www.nih.gov/about/budget.htm. NIH funds also support the
work of non-scientist technical personnel.
\2\ Ibid.
\3\ Http://nih.gov/about/impact/economy.htm.
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NIH funding is a vitally important economic engine in the
communities and States where these researchers work; in fiscal year
2012, NIH-funded research supported an estimated 402,000 jobs across
the United States.'' \3\
NIH also provides crucial scientific leadership to the entire
biomedical research enterprise, both within and beyond our borders.
Advancing basic research from bench to bedside requires extensive
collaboration among scientists from academia, government,\4\ and
industry; all depend on NIH personnel and policies to guide and
facilitate their efforts in this enormous, complicated, and high-stakes
endeavor. In fact, the biotechnology and pharmaceutical industries rely
heavily on NIH's investment in basic biomedical research; it is often
this research that industry uses or further explores to develop new
drugs and medical devices.\5\
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\4\ AAI opposes a Federal policy that limits government scientists'
ability to attend privately sponsored scientific meetings and
conferences (see http://www.hhs.gov/travel/policies/
2012_policy_manual.pdf) and believes that ``the rules have had an
unintended and deleterious effect . . . [and] made government
scientists feel cut off from the rest of the scientific community,
wreaked havoc with their ability to fulfill professional commitments,
and undermined the morale of some of the government's finest minds.''
Testimony (Amended) of Lauren G. Gross, J.D., on behalf of The American
Association of Immunologists (AAI), Submitted to the Senate Homeland
Security and Governmental Affairs Committee for the Hearing Record of
January 14, 2014: ``Examining Conference and Travel Spending Across the
Federal Government'' (http://aai.org/Public_Affairs/Docs/2014/
AAI_Testimony_to_Senate_HSGAC_01142014.pdf).
\5\ ``[NIH] . . . annual research funding . . . is the most
important source of discoveries in the health sciences that ultimately
leads to the development of important new therapeutics . . . .''
Statement of Roger Perlmutter, Ph.D., Executive Vice President,
Research & Development, Amgen, June 15, 2005 http://www.rdmag.com/
articles/2005/06/managing-rapid-biotech-growth.
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erosion of nih budget slows research and threatens u.s. preeminence
Although NIH funds most biomedical research in the United States,
its purchasing power has been dramatically reduced by inadequate
budgets that have been further eroded by inflation.\6\ In fiscal year
2015, NIH's purchasing power is 22 percent lower than it was in fiscal
year 2003, when the 5-year NIH budget doubling period ended.\7\ This
reduced purchasing power enables NIH to fund only 16.8 percent of
grant applications submitted, a steep decline from the 32.4 percent it
funded when its budget was robust.\8\ This loss is not only a barrier
to advancing crucially important research, it is also devastating to
those who are currently engaged in--or considering--a career in
biomedical research. Researchers around the country are closing labs,
losing jobs, and in some cases, moving overseas, where support for
biomedical research is rapidly growing.\9\ Many who do stay in the U.S.
are engaged in an unrelenting and time consuming search for funding,
when they should be conducting research and mentoring the Nation's
future researchers, doctors, inventors and innovators. Most importantly
of all, we will never know what research has not been pursued--or how
many potential treatments and cures have not been discovered--because
of inadequate funding.
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\6\ ``In 12 of the past 13 years, NIH funding has either been cut
or has failed to outpace rising costs.'' Federation of American
Societies for Experimental Biology, Funding Trends, 2015. http://
www.faseb.org/Portals/2/PDFs/opa/2015/
2.10.15%20NIH%20Funding%20Cuts%202-pager.pdf?
pdf=2.10.15%20NIH%20Funding%20Cuts%202-pager.
\7\ Johnson, Judith A., ``NIH Funding: fiscal year 1994-fiscal year
2016,'' Congressional Research Service, R43341, pp. 2-3 (2015).
Measured in constant 2012 dollars. Excludes funding from the American
Recovery and Reinvestment Act (ARRA).
\8\ Research Project Grant Award Rate (``the likelihood of an
individual application submission getting funded''). Rockey, Sally,
``Comparing Success Rates, Award Rates, and Funding Rates,'' Rock Talk,
March 5, 2014. RPG success rates (``the number of awards made divided
by the sum of the applications reviewed that fiscal year where
revisions submitted in the same fiscal year are collapsed and counted
as one application'') have also decreased drastically, from 32.4
percent to 18.1 percent. See http://nexus.od.nih.gov/all/2014/03/05/
comparing-success-award-funding-rates/.
\9\ Moses, H., et al. The Anatomy of Medical Research: U.S. and
International Comparisons. JAMA 313, 174-189 (2015). Losing our best
and brightest to burgeoning overseas interest and investment in
biomedical research is neither specious nor unrealistic: after
adjusting for inflation. According to Moses et al., while U.S. funding
for biomedical and health services research increased at a rate of 6
percent per year from 1994-2004, it decreased to just 0.8 percent
annually from 2004-2012.
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the immune system: essential to our health, crucial to our future
The importance of the immune system to human and animal health
cannot be overstated, and has even been noted in Congress. In response
to testimony by Dr. Anthony Fauci, Director of the National Institute
of Allergy and Infectious Diseases, Senator Richard Shelby (R-AL), a
senior member of the Senate Labor, Health and Human Services,
Education, and Related Agencies Appropriations Subcommittee, correctly
observed that ``immunology kind of transcends it all.'' \10\
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\10\ NIH fiscal year 2015 Budget Request: hearing before the Senate
Appropriations Committee Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies, April 2, 2014, 113th
Congress, second session (Comments of Senator Richard Shelby).
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As the body's primary defense against viruses, bacteria, and
parasites, the immune system protects its host from a wide range of
diseases and disorders. When it is operating properly, the immune
system can provide powerful protection against many illnesses,
including cancer, Alzheimer's disease, and cardiovascular disease. When
it underperforms, it can leave the body vulnerable to infections, such
as influenza, HIV/AIDS, tuberculosis, malaria, and the common cold. The
immune system can also become overactive and attack normal organs and
tissues, causing autoimmune diseases including allergy, asthma,
inflammatory bowel disease, lupus, multiple sclerosis, rheumatoid
arthritis, and type 1 diabetes.
Immunologists are on the front lines, working to harness the immune
system to protect people and animals from chronic and acute diseases
and disorders, as well as from natural or man-made infectious organisms
(including Ebola, plague, smallpox and anthrax) that could be used for
bioterrorism.
recent immunological advances: providing hope for today--and tomorrow
Ebola Outbreak: Finding a Vaccine to Save Lives
The 2014 Ebola virus outbreak in West Africa is the largest in
recorded history. Due to the historically low incidence of infection,
development of anti-Ebola therapeutics and vaccines had not been a
priority for public health officials or pharmaceutical companies.
However, ongoing investments in biomedical research by the Federal
Government, including NIH and the Department of Defense, have led to
the development of several promising vaccine candidates, two of which
are now being administered through clinical trials in the outbreak
region and may well aid in preventing this deadly disease.\11\ Although
pharmaceutical companies are now involved in the manufacture of these
vaccine candidates and other potential therapies, it is Federal
taxpayer dollars that funded the research that is the cornerstone of
the current Ebola virus response.\12\ Ongoing biomedical research in
areas like Ebola and other emerging infectious diseases, where the
public health benefit outweighs the potential commercial benefit,
depends heavily on Federal dollars.
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\11\ Ledgerwood, J. E. et al. Chimpanzee Adenovirus Vector Ebola
Vaccine-Preliminary Report. N. Engl. J. Med. 0, null (0).
\12\ Wong, G., et al. Intranasal immunization with an adenovirus
vaccine protects guinea pigs from Ebola virus trans-mission by infected
animals. Antiviral Res. 116, 17-19 (2015); Stanley, D. A. et al.
Chimpanzee adenovirus vaccine generates acute and durable protective
immunity against ebolavirus challenge. Nat. Med. 20, 1126-1129 (2014).
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A New Way to Stop HIV . . . and Other Infections and Diseases?
Researchers have recently discovered that Clustered Regularly
Interspaced Short Palindromic Repeats (CRISPR) systems--immune
mechanisms used by bacteria to defend themselves from virus infection--
present a novel therapeutic tool for immunologists, enabling them to
successfully disrupt HIV replication, stop the growth of human cervical
cancer cells and kill antibiotic-resistant bacteria.\13\ Immunologists
are also exploring the use of CRISPR to repair defective genes in stem
cells, which may treat diseases like sickle cell anemia and immune
deficiencies.\14\
---------------------------------------------------------------------------
\13\ 13 Hu, W. et al. RNA-directed gene editing specifically
eradicates latent and prevents new HIV-1 infection. Proc. Natl. Acad.
Sci. U. S. A. 111, 11461-11466 (2014); Kennedy, E. M. et al.
Inactivation of the human papillomavirus E6 or E7 gene in cervical
carcinoma cells by using a bacterial CRISPR/Cas RNA-guided
endonuclease. J. Virol. 88, 11965-11972 (2014); Citorik, R. J., et al.
Sequence-specific antimicrobials using efficiently delivered RNA-guided
nucleases. Nat. Biotechnol. 32, 1141-1145 (2014).
\14\ Huang, X. et al. Production of gene-corrected adult beta
globin protein in human erythrocytes differentiated from patient iPSCs
after genome editing of the sickle point mutation. Stem Cells (2015).
doi:10.1002/stem.1969.
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Cancer Immunotherapies: Real Results in the Fight Against Cancer
Lauded by Science magazine in 2013 as ``The Science Breakthrough of
the Year,'' the genetic engineering of a cancer patient's T cells
(immune cells) to kill the patient's own cancer cells, a procedure
known as immunotherapy, continues to advance.\15\ At NIH funded medical
centers, scientists and doctors are observing a significant regression
of blood cancers (non-solid tumors) in both children and adults.\16\
This therapy, which the FDA granted Breakthrough Therapy designation in
July 2014 (which can expedite approval of a therapeutic based on clear
clinical efficacy), is poised to be used for even more difficult-to-
treat solid tumor cancers, and is helping to inform ongoing clinical
trials in breast, lung, prostate and brain cancer.\17\ The success of
these therapies has also attracted the investment of pharmaceutical
companies and has led to the development of several new T cell therapy-
focused biotechnology companies, illustrating how investment in NIH
funded research creates opportunity--and jobs--in the private sector.
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\15\ Couzin-Frankel, J. Cancer Immunotherapy. Science 342, 1432-
1433 (2013).
\16\ Maude, S. L. et al. Chimeric antigen receptor T cells for
sustained remissions in leukemia. N. Engl. J. Med. 371, 1507-1517
(2014).
\17\ Kakarla, S. & Gottschalk, S. CAR T Cells for Solid Tumors:
Armed and Ready to Go? Cancer J. 20, 151-155 (2014).
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New Therapeutic Provides Real Hope for Autoimmune Treatment
In January 2015, the FDA approved the first of a new and highly
effective class of treatments for psoriasis, a serious autoimmune skin
disease.\18\ The new treatment inhibits IL-17 signaling, a process
which initiates inflammation and which was first discovered by NIH
funded researchers in 2005.\19\ This treatment has proven effective in
Phase II clinical trials, with more than 70 percent of psoriasis
patients showing over 75 percent clearance of disease, and nearly half
showing 100 percent clearance of disease.\20\ Clinical trials targeting
similar aspects of this pathway are yielding promising results and may
offer hope to those suffering from other autoimmune diseases, including
ankylosing spondylitis, rheumatoid arthritis, and multiple
sclerosis.\21\
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\18\ Press Announcements > FDA approves new psoriasis drug
Cosentyx. at http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/
ucm430969.htm.
\19\ Langrish, C. L. et al. IL-23 drives a pathogenic T cell
population that induces autoimmune inflammation. J. Exp. Med. 201, 233-
240 (2005).
\20\ Gaffen, S. L., et al., The IL-23-IL-17 immune axis: from
mechanisms to therapeutic testing. Nat. Rev. Immunol. 14, 585-600
(2014).
\21\ Novartis AIN457 (secukinumab) meets primary endpoint in two
Phase III studies in ankylosing spondylitis, a debilitating joint
condition of the spine. at http://www.novartis.com/newsroom/media-
releases/en/2014/1864939.shtml.
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conclusion
AAI greatly appreciates the strong bipartisan support for NIH and
biomedical research that has been expressed by the members and staff of
the subcommittee. In order to support important ongoing research, fund
a reasonable number of outstanding new grant applications, and restore
NIH funding to a level that can sustain a robust and dynamic biomedical
research enterprise in the United States, AAI urges the subcommittee to
provide NIH with an appropriation of at least $32 billion for fiscal
year 2016.
[This statement was submitted by Clifford V. Harding, M.D., Ph.D.,
American Association of Immunologists.]
______
Prepared Statement of the American Association of Nurse Anesthetists
FISCAL YEAR 2016 APPROPRIATIONS REQUEST SUMMARY
[Dollars in millions]
----------------------------------------------------------------------------------------------------------------
Fiscal year Fiscal year
2014 actual 2015 enacted AANA fiscal year 2016 request
----------------------------------------------------------------------------------------------------------------
HHS/HRSA/BHPr Title 8 Advanced Education $2.94 $2.25 $4 million for nurse
Nursing, Nurse Anesthetist Traineeship. anesthesia traineeship
Total for Advanced Education Nursing, from 61.089 63.581 66.760 million for advanced
Title 8. education nursing
----------------------------------------------------------------------------------------------------------------
Title 8 HRSA BHPr Nursing Education Programs.. 217.50 231.62 244
----------------------------------------------------------------------------------------------------------------
About the American Association of Nurse Anesthetists (AANA) and
Certified Registered Nurse Anesthetists (CRNAs)
The AANA is the professional association for more than 48,000 CRNAs
and student nurse anesthetists, representing over 90 percent of the
nurse anesthetists in the United States. Today, CRNAs deliver
approximately 38 million anesthetics to patients each year in the U.S.
CRNA services include administering the anesthetic, monitoring the
patient's vital signs, staying with the patient throughout the surgery,
and providing acute and chronic pain management services. CRNAs provide
anesthesia for a wide variety of surgical cases and in some States are
the sole anesthesia providers in almost 100 percent of rural hospitals,
affording these medical facilities obstetrical, surgical, and trauma
stabilization, and pain management capabilities. CRNAs work in every
setting in which anesthesia is delivered, including hospital surgical
suites and obstetrical delivery rooms, ambulatory surgical centers
(ASCs), pain management units and the offices of dentists, podiatrists
and plastic surgeons. CRNAs provide high quality anesthesia care to all
patient types and case complexities.
Nurse anesthetists are experienced and highly trained anesthesia
professionals whose record of patient safety is underscored by
scientific research findings. The landmark Institute of Medicine report
To Err is Human found in 2000 that anesthesia was 50 times safer than
in the 1980s. (Kohn L, Corrigan J, Donaldson M, ed. To Err is Human.
Institute of Medicine, National Academy Press, Washington DC, 2000.)
Though many studies have demonstrated the high quality of nurse
anesthesia care, the results of a study published in Health Affairs led
researchers to recommend that costly and duplicative supervision
requirements for CRNAs be eliminated. Examining Medicare records from
1999-2005, the study compared anesthesia outcomes in 14 States that
opted-out of the Medicare physician supervision requirement for CRNAs
with those that did not opt out. (To date, 17 States have opted-out.)
The researchers found that anesthesia has continued to grow more safe
in opt-out and non-opt-out States alike. (Dulisse B, Cromwell J. No
Harm Found When Nurse Anesthetists Work Without Supervision By
Physicians. Health Aff. 2010;29(8):1469-1475.)
CRNAs have provided the majority of anesthesia to our active duty
military in combat arenas since World War I and predominate in Veterans
hospitals and the U.S. Armed Services through active duty and the
reserves, staffing ships, remote U.S. military bases, and forward
surgical teams without physician anesthesiologist support. In addition,
CRNAs predominate in rural and medically underserved areas, and where
more Medicare patients live (Government Accountability Office. Medicare
and private payment differences for anesthesia services. GAO-07-463,
Washington DC, Jul. 27, 2007. http://www.gao.gov/products/GAO-07-463).
Importance of and Request for HRSA Title 8 Nurse Anesthesia Education
Funding
Our profession's chief request of the Subcommittee is for $4
million to be reserved for nurse anesthesia traineeships and $66.760
million for advanced education nursing from the HRSA Title 8 program,
out of a total Title 8 budget of $244 million. We request that the
Report accompanying the fiscal year 2016 Labor-HHS-Education
Appropriations bill include the following language: ``Within the
allocation, the Committee encourages HRSA to allocate funding at least
at the fiscal year 2015 level for nurse anesthetist education.'' This
funding request is justified by the safety and value proposition of
nurse anesthesia, and by anticipated growth in demand for CRNA services
as baby boomers retire, become Medicare eligible, and require more
healthcare services. In making this request, we associate ourselves
with the request made by The Nursing Community with respect to Title 8
and the National Institute of Nursing Research (NINR) at the National
Institutes of Health.
The Title 8 program, on which we will focus our testimony, is
strongly supported by members of this Subcommittee in the past, and is
an effective means to help address nurse anesthesia workforce demand.
In expectation for dramatic growth in the number of U.S. retirees and
their healthcare needs, funding the advanced education nursing program
at $66.760 million is necessary to meet the continuing demand for
nursing faculty and other advanced education nursing services
throughout the U.S. The program funds competitive grants that help
enhance advanced nursing education and practice, and traineeships for
individuals in advanced nursing education programs. It also targets
resources toward increasing the number of providers in rural and
underserved America and preparing providers at the master's and
doctoral levels, thus increasing the supply of clinicians eligible to
serve as nursing faculty, a critical need.
Demand remains high for CRNA workforce in clinical and educational
settings. A 2007 AANA nurse anesthesia workforce study found a 12.6
percent CRNA vacancy rate in hospitals and a 12.5 percent faculty
vacancy rate. The supply of clinical providers has increased in recent
years, stimulated by increases in the number of CRNAs trained. From
2002-2016, the annual number of expected nurse anesthesia educational
program graduates increased from 1,362 to 2,559, according to the
Council on Accreditation of Nurse Anesthesia Educational Programs
(COA). The number of accredited nurse anesthesia educational programs
grew from 85 to 114. We anticipate increased demand for anesthesia
services as the population ages, the number of clinical sites requiring
anesthesia services grows, and a portion of the CRNA workforce retires.
The capacity of our 114 nurse anesthesia educational programs to
educate qualified applicants is limited by the number of faculty, the
number and characteristics of clinical practice educational sites, and
other factors--and they continue turning away hundreds of qualified
applicants. A qualified applicant to a CRNA program is a bachelor's
educated and licensed registered nurse who has spent a minimum of 1
year serving in an acute care healthcare practice environment. On
average a CRNA applicant obtains 3 years of experience in a critical
care unit prior to beginning an anesthesia program. They are prepared
in nurse anesthesia educational programs located all across the
country, including Alabama, Hawaii, Illinois, Kansas, Louisiana,
Maryland, Missouri, Mississippi, New Hampshire, Oklahoma, Oregon, Rhode
Island, South Carolina, Tennessee, Washington, West Virginia, and
Wisconsin. To meet the nurse anesthesia workforce challenge, the
capacity and number of CRNA schools must continue to grow and modernize
with the latest advancements in simulation technology and distance
learning consistent with improving educational quality and supplying
demand for highly qualified providers. With the help of competitively
awarded grants supported by Title 8 funding, the nurse anesthesia
profession is making significant progress, but more is required.
This progress is extremely cost-effective from the standpoint of
Federal funding. Anesthesia can be provided by nurse anesthetists,
physician anesthesiologists, or by CRNAs and anesthesiologists working
together. Of these, the nurse anesthesia practice model is by far the
most cost-effective, and ensures patient safety. (Hogan P et al. Cost
effectiveness analysis of anesthesia providers. Nursing Economic$, Vol.
28 No. 3, May-June 2010, p. 159 et seq.) Nurse anesthesia education
represents a significant educational cost-benefit for competitively
awarded Federal funding in support of CRNA educational programs.
Support for Safe Injection Practices and the Alliance for Injection
Safety
As a leader in patient safety, the AANA has been playing a vigorous
role in the development and projects involving injection safety. We
support the efforts that the CDC's Division of Healthcare Quality and
Promotion has taken regarding its injection safety activities,
including provider education and awareness, detection, tracking and
response.
[This statement was submitted by Sharon P. Pearce, CRNA, MSN,
President, American Association of Nurse Anesthetists.]
______
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 2016.
ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
141,000 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 2016, ACP is urging
funding for the following proven programs to receive appropriations
from the Subcommittee:
--Title VII, Section 747, Primary Care Training and Enhancement, at
no less than $71 million;
--National Health Service Corps, $810 million in total program
funding, including at least $287.4 million through
discretionary appropriations;
--National Health Care Workforce Commission, $3 million;
--Agency for Healthcare Research and Quality, $375 million.
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. With enactment of the Affordable Care Act (ACA), the
Congressional Budget Office has estimated, as of March 2015, the demand
for primary care services will increase with the addition of 25 million
Americans receiving access to health insurance, including an additional
14 million under Medicaid/CHIP, once the law is fully implemented. With
increased demand, current projections indicate there will be a shortage
of 12,500 to 31,100 primary care physicians by 2025. (IHS Inc.,
prepared for the Association of American Medical Colleges. The
Complexities of Physician Supply and Demand: Projections from 2013 to
2025. March 2015. Accessed at: https://www.aamc.org/download/426260/
data/physiciansupplyanddemandthrough2025keyfindings.pdf). Without
critical funding for vital workforce programs, this physician shortage
will only grow worse. A strong primary care infrastructure is an
essential part of any high-functioning healthcare system, with over 100
studies showing primary care is associated with better outcomes and
lower costs of care (http://www.acponline.org/advocacy/where_we_stand/
policy/primary_shortage.pdf).
The health professions' education programs, authorized under Title
VII of the Public Health Service Act and administered through the
Health Resources and Services Administration (HRSA), support the
training and education of healthcare providers to enhance the supply,
diversity, and distribution of the healthcare workforce, filling the
gaps in the supply of health professionals not met by traditional
market forces, and are critical 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, Primary Care Training and Enhancement program at $71 million, in
order to maintain and expand the pipeline for individuals training in
primary care. The Section 747 program is the only source of Federal
training dollars available for general internal medicine, general
pediatrics, and family medicine. For example, general internists, who
have long been at the frontline of patient care, have benefitted from
Title VII training models emphasizing interdisciplinary training that
have helped prepare them to work with other health professionals, such
as physician assistants, patient educators, and psychologists. Without
a substantial increase in funding, for the fifth year in a row, HRSA
will not be able to carry out a competitive grant cycle for physician
training; the Nation needs new initiatives supporting expanded training
in multi-professional care, the patient-centered medical home, and
other new competencies required in our developing health system.
The College urges $810 million in total program funding for the
National Health Service Corps (NHSC), as requested in the President's
fiscal year 2016 budget; this amount includes $287.4 million in
discretionary spending through new budget authority and $522.63 million
in new mandatory funding. Since the enactment of the ACA, the NHSC has
awarded over $1 billion in 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 9,000 primary-care
clinicians, NHSC members are providing culturally competent care to
almost 10 million patients at nearly 15,000 NHSC-approved healthcare
sites in urban, rural, and frontier areas. The increase in funds would
expand NHSC field strength to 15,000 and would serve the needs of more
than 16 million patients, helping to address the health professionals'
workforce shortage and growing maldistribution. The programs under NHSC
have proven to make an impact in meeting the healthcare needs of the
underserved, and with increased appropriations, they can do more. For
fiscal year 2016, the NHSC's funding situation is particularly urgent.
NHSC faces a funding cliff because its mandatory funding expires and it
has no current budget authority. Unless Congress acts, there will be no
fiscal year 2016 funding source in the Federal budget for NHSC.
Accordingly, the College also supports the Medicare Access and CHIP
Reauthorization Act, H.R. 2, which would keep the NHSC at its fiscal
year 2015 funding level for fiscal year 2016 and fiscal year 2017
(through an extension of mandatory resources).
We urge the Subcommittee to fully fund the National Health Care
Workforce Commission, as authorized by the ACA, at $3 million. The
Commission is authorized to review current and projected healthcare
workforce supply and demand and make recommendations to Congress and
the Administration regarding national healthcare workforce priorities,
goals, and polices. Members of the Commission have been appointed, but
have not begun work due to a lack of funding. The College believes the
Nation needs a comprehensive workforce policy founded on sound research
to determine the Nation's current and future needs for physicians by
specialty and geographic areas; the work of the Commission is
imperative, now more than ever, to ensure Congress is creating the best
policies for our Nation's needs.
The Agency for Healthcare Research and Quality (AHRQ) is the
leading public health service agency focused on healthcare quality.
AHRQ's research provides the evidence-based information needed by
consumers, 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 $375 million. 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.
In conclusion, the College is keenly aware of the fiscal pressures
facing the Subcommittee today, but strongly believes the United States
must invest in these programs in order to achieve a high performance
healthcare system and build capacity in our primary care workforce and
public health system. The College greatly appreciates the support of
the Subcommittee on these issues and looks forward to working with
Congress as you begin to work on the fiscal year 2016 appropriations
process.
______
Prepared Statement of the American College of Preventive Medicine
The American College of Preventive Medicine (ACPM) urges the House
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 $10 million in fiscal year 2016 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 $524 million in fiscal year 2016 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
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 the Health Resources and Services Administration
(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 2014 Physician Specialty Data Book released by the
Association of American Medical Colleges, preventive medicine had the
biggest decrease (-29 percent) in the number of first-year ACGME
residents and fellows between 2008 and 2013. This decrease represents a
worsening trend in the number of preventive medicine residents and is
not due to a lack of interest or need but is due to a lack of funding.
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. 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. Limited stipend support has made it
difficult for programs to attract and retain high-quality applicants.
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 generating
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. 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. ACPM applauds the initiation of programs such as the Community
Transformation Grant that take this broad view of the determinants of
chronic disease. However, 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.
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. 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 $10
million in fiscal year 2016 for preventive medicine residency training
under the public health and preventive medicine line item in Title VII
of the Public Health Service Act.
______
Prepared Statement of the American Congress of Obstetricians and
Gynecologists
The American Congress of Obstetricians and Gynecologists,
representing 58,000 physicians and partners in women's healthcare, is
pleased to offer this statement to the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services, and
Education, and Related Agencies. We thank Chairman Blunt and the entire
Subcommittee for this opportunity to provide comments on some of the
most important programs to women's health.
Today, the U.S. lags behind many other nations in healthy births.
ACOG's Making Obstetrics and Maternity Safer (MOMS) Initiative would
help improve maternal and infant health through Federal research
investments, including comprehensive data collection and surveillance,
biomedical research, and translating research into evidence-based care
for women and babies. We urge you to make funding of the following
programs and agencies a top priority in fiscal year 2016.
Data Collection and Surveillance at the Centers for Disease Control and
Prevention (CDC)
In order to conduct robust research, uniform, accurate and
comprehensive data and surveillance are critical. The National Center
for Health Statistics is the Nation's principal health statistics
agency and collects State data from records like birth certificates
that give us raw, vital statistics. Information from birth and death
certificates is key to gathering vital information about both mother
and baby during pregnancy and labor and delivery. Uniform, accurate
data collection depends on all States and territories using electronic
birth and death records based on the 2003 US-standard birth and death
certificates. Although all 50 States are expected to have the
electronic birth record systems available by the end of 2015, there are
5 States that are still in the early stages of planning and
implementing the electronic death registry system. Even in States where
the overall system has been implemented, there remains a need for
expanded access and increased training in order to utilize these
systems effectively. In most States with electronic systems in place,
there remains a reliance on paper record-keeping as well, creating an
inefficient hybrid record situation that compromises the efficiency and
accuracy of an electronic record system.
States not using the standard records likely underreport maternal
and infant deaths and complications from childbirth; causes of these
deaths remain unknown. Previous appropriations have helped increase the
number of States using electronic birth and death registries, but NCHS
needs increased resources to help enroll the remaining States, and to
improve the accuracy of birth and death data, including through linking
data from Electronic Health Records to state vital records systems. For
fiscal year 2016, ACOG requests $172 million for the National Center
for Health Statistics, $5 million of which we urge you to designate to
modernize the National Vitals Statistics System, helping States fully
implement the updated birth and death records systems.
The Pregnancy Risk Assessment Monitoring System (PRAMS) at CDC
extends beyond vital statistics and surveys new mothers on their
experiences and attitudes during pregnancy, with questions on a range
of topics, including what their insurance covered, whether they had
stressful experiences during pregnancy, when they initiated prenatal
care, and what kinds of questions their doctor covered during prenatal
care visits. By identifying trends and patterns in maternal health, CDC
researchers and State health departments are better able to identify
behaviors and environmental and health conditions that may lead to
preterm births. Only 40 States use the PRAMS surveillance system today.
ACOG requests adequate funding to expand PRAMS to all U.S. States and
territories.
Biomedical Research at the National Institutes of Health (NIH)
Biomedical research is critically important to understanding the
causes of maternal and infant mortality and morbidity, and developing
effective interventions to lower the incidence of mortality and
morbidity. The National Institute on Child Health and Human
Development's (NICHD's) 2012 Scientific Vision identified the most
promising research opportunities for the next decade. Goals include
determining the complex causes of prematurity and developing evidence-
based measures for its prevention within the next 10 years,
understanding the long term health implications of assisted
reproductive technology, and understanding the role of the placenta in
fetal health outcomes. The placenta, one of the least studied human
organs, is essential to the viability and proper growth of the fetus.
NICHD's Human Placenta Project will help discover the causes of
placental failures, and ultimately ways to prevent failure and improve
maternal and fetal birth outcomes.
In addition, adequate levels of research require a robust research
workforce. The years of training combined with uncertainty in getting
grant funding are huge disincentives for students considering a career
in bio-medical research. This has resulted in a huge gap between the
too-few women's reproductive health researchers being trained and the
immense need for research. We urge continued investments in the Women's
Reproductive Health Research (WRHR) Career Development program,
Reproductive Scientist Development Program (RSDP), and the Building
Interdisciplinary Research Careers in Women's Health (BIRCWH) programs
to address the shortfall of women's reproductive health researchers.
ACOG supports a minimum of $32 billion for NIH and $1.37 billion within
that funding request for NICHD in fiscal year 2016.
Public Health Programs at the Health Resources and Services
Administration (HRSA) and the Centers for Disease Control and
Prevention (CDC)
Projects at HRSA and CDC are integral to translating research
findings into evidence-based practice changes in communities. Where NIH
conducts research to identify causes of maternal and infant mortality
and morbidity, CDC and HRSA help ensure those research findings lead to
improved maternal and infant health outcomes.
Maternal Child Health Block Grant (HRSA): The Maternal Child Health
Block Grant at HRSA is the only Federal program that exclusively
focuses on improving the health of mothers and children. State and
territorial health agencies and their partners use MCH Block Grant
funds to reduce infant mortality, deliver services to children and
youth with special healthcare needs, support comprehensive prenatal and
postpartum care, screen newborns for genetic and hereditary health
conditions, deliver childhood immunizations, and prevent childhood
injuries.
These early healthcare services help keep women and children
healthy, eliminating the need for later costly care. Every $1 spent on
preconception care for a woman with diabetes can save up to $5.19 by
preventing costly complications. Over $90 million has been cut from the
Block Grant since 2003. ACOG requests $639 million for the Block Grant
in fiscal year 2016 to maintain its current level of services.
Title X Family Planning Program (HRSA): Family planning and
interconception care are essential to helping ensure healthy women and
healthy pregnancies. The Title X Family Planning Program provides
services to more than 4.5 million low income men and women who may not
otherwise have access to these services. Title X clinics accounting for
$5.3 billion in healthcare savings in 2010 alone. ACOG supports $327
million for Title X in fiscal year 2016 to sustain its level of
services.
Fetal Infant Mortality Review (HRSA): HRSA's Healthy Start Program
promotes community-based programs to reduce infant mortality and racial
disparities. These programs are encouraged to use the Fetal and Infant
Mortality Review (FIMR) which brings together ob-gyn experts and local
health departments to address local issues contributing to infant
mortality. Today, more than 172 local programs in 32 States find FIMR a
powerful tool to help reduce infant mortality and address issues
related to preterm delivery. ACOG has partnered with the Maternal and
Child Health Bureau to sponsor the National FIMR Program for 25 years.
ACOG supports $0.5 million in fiscal year 2016 for HRSA to increase the
number of Healthy Start programs that use FIMR.
Maternal Health Initiative (HRSA): The Maternal Child Health Bureau
launched the Maternal Health Initiative to foster the notion of
``healthy moms make healthy babies.'' As part of this effort, ACOG has
convened the National Partnership on Maternal Safety to identify key
factors to reduce maternal morbidity and mortality. ACOG requests, at a
minimum, level funding for MCHB to advance this important work.
Safe Motherhood, Maternity and Perinatal Quality Collaboratives
(CDC): The Safe Motherhood Initiative at CDC works with state health
departments to collect information on pregnancy-related deaths, track
preterm births, and improve maternal outcomes. Through Safe Motherhood,
CDC funds State-based Maternity and Perinatal Quality Collaboratives
that improve birth outcomes by encouraging use of evidence-based care,
including reducing early elective deliveries. For instance, through the
Ohio Perinatal Quality Collaborative, started in 2007 with funding from
CDC, 21 OB teams in 25 hospitals have significantly decreased early
non-medically necessary deliveries, in accordance with ACOG guidelines,
reducing costly and dangerous pre-term births. Avalere estimated that
reducing early elective deliveries can save from $2.4 million to $9
million a year. Currently, there are active Perinatal Quality
Collaboratives in Maryland and Washington that have both demonstrated
significant progress in reducing early elective deliveries, among other
quality improvement initiatives. Mississippi launched its first
Perinatal Quality Collaborative just a few months ago, in November
2014. None of these three States are currently receiving any Federal
funding for their collaborative efforts. There is no existing Perinatal
Quality Collaborative in Missouri at this time. The PREEMIE
Reauthorization Act, enacted in 2013, authorizes funding to increase
the number of States receiving assistance for Perinatal Quality
Collaboratives. ACOG urges you to re-instate the pre-term birth sub-
line at a funding level of $2 million, as authorized by PREEMIE, and
fund the Safe Motherhood Initiative at $46 million to implement PREEMIE
and help States expand or establish Maternity and Perinatal Quality
Collaboratives.
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 their infants. However,
little is known about the effects of most drugs on the woman and her
child, or the ways in which pregnancy and lactation alter the uptake,
metabolism, and effect of medication. Pregnant and breastfeeding women
have historically been excluded from most research trials. Although
there have been substantial encouraging developments in this arena,
including the recent release of a final drug labeling rule on pregnancy
and lactation by FDA and relevant research at NIH and CDC, significant
gaps remain. In order to achieve meaningful progress, HHS must ensure
the coordination of all efforts being made at the agency level. As
such, ACOG supports the establishment of a Federal work group to
improve coordination and provide guidance on how clinical research
might be done appropriately in this area.
Quality Assessment Programs at the Agency for Healthcare Research and
Quality (AHRQ)
Consumer Assessment of Healthcare Providers and Systems (CAHPS):
The Consumer Assessment of Healthcare Providers and Systems (CAHPS)
program was established within AHRQ in 1995 to address concerns
regarding the lack of available consumer health plan reviews. The
information collected through the CAHPS program can be a critical
element of patient decisionmaking, while also informing providers and
insurers about the impact and reception of their initiatives and
services. Unfortunately, the CAHPS program has not yet established a
survey to collect data about maternity care. Given the frequency and
complex nature of interactions that an expectant mother will have with
an effective healthcare system, we support the creation of a CAHPS
survey focused on maternity care. ACOG encourages the CAHPS program to
direct funds towards the development of a maternity care-oriented
assessment.
Again, we would like to thank the Committee for its commitment to
improving women's health, and we urge you to fund the programs we have
identified in our MOMS Initiative in fiscal year 2016.
______
Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA) represents all 65
U.S. dental schools, 700 dental residency training programs, nearly 600
allied dental programs, as well as more than 12,000 faculty who educate
and train the nearly 50,000 students and residents attending these
institutions. ADEA submits this testimony for the record and for your
consideration as you begin prioritizing fiscal year 2016 appropriation
requests.
ADEA urges you to protect the funding and fundamental structure of
Federal programs that provide access to oral healthcare to millions of
Americans, train the next generation of oral healthcare professionals
and enable globally recognized cutting-edge dental and craniofacial
research.
ADEA's academic dental institutions train future practitioners and
researchers. Also, as one of the major providers of dental care in some
Federal programs, these institutions provide significant dental safety-
net care through campus and offsite dental clinics where students and
faculty deliver dental healthcare to uninsured and underserved
populations. Moreover, since it has been proven that good oral health
is inextricably linked to good systemic health, the need to provide
access to oral healthcare is critical. However, in order to provide
these services, there must be adequate funding. Therefore, we ask the
committee to help ADEA's dental schools continue to provide care to all
segments of the population, including perhaps your constituents, by
maintaining adequate funding for programs focused on access to oral
healthcare, training for oral healthcare providers and cutting-edge
dental and craniofacial research. Specifically, we request that you
maintain and protect funding for:
--Title VII of the Public Health Service Act;
--National Institutes of Health (NIH);
--National Institute of Dental and Craniofacial Research (NIDCR);
--Dental Health Improvement Act;
--Ryan White HIV/AIDS Treatment and Modernization Act, Part F: Dental
Reimbursement Program (DRP) and the Community-Based Dental
Partnerships Program; and
--Centers for Disease Control and Prevention (CDC), State-Based Oral
Health Programs.
The above programs fund public health programs proven to prevent
oral disease, fund research to eradicate dental disease, detect certain
cancers and fund programs to develop an adequate dental workforce with
advanced training to serve underserved populations including children,
the elderly and those suffering from chronic immunocompromised
conditions and life-threatening diseases. ADEA respectfully makes the
following funding requests:
$35 million: Title VII, Section 748, Public Health Service Act
The dental programs in Title VII, Section 748 of the Public Health
Service Act, provide critical training in general, pediatric and public
health dentistry and dental hygiene. Support for these programs will
help ensure an adequate oral healthcare workforce. The funding supports
predoctoral oral health education and postdoctoral pediatric, general
and public health dentistry training. The investment made by Title VII
not only educates dentists and dental hygienists, but also expands
access to care for underserved communities.
Additionally, Section 748 addresses the shortage of professors in
dental schools with the dental faculty loan repayment program and
faculty development courses for those who teach pediatric, general or
public health dentistry and dental hygiene. There are currently almost
200 open budgeted faculty positions in dental schools. These two
programs provide schools with assistance in recruiting and retaining
faculty. ADEA is increasingly concerned that with projected restrained
funding, the oral health research community will not be able to grow
and that the pipeline of new researchers will be inadequate to the
future need.
Title VII Diversity and Student Aid programs play a critical role
in helping to diversify the health profession's student body and
thereby the healthcare workforce. For the last several years, these
programs have not received adequate funding to sustain the progress
that is necessary to meet the challenges of an increasingly diverse
U.S. population. ADEA is most concerned that the Administration did not
request any funds for the Health Careers Opportunity Program (HCOP).
This program provides a vital source of support for oral health
professionals serving underserved and disadvantaged patients by
providing a pipeline for such 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. The president's budget request seeks to
``rebrand'' the HCOP program as the Health Workforce Diversity Program
(HWDP). ADEA supports the goals of this proposed new program as long as
the current funding follows the new program.
For example, a collaboration between the University of
Connecticut's Schools of Dental Medicine and Medicine have used HCOP
grants to perform extensive outreach to universities, including
Historically Black Colleges and Universities (HBCU). The program
supports 30-week and six-week summer science enrichment programs in
middle schools and several high school programs. In addition, at the
college level, the two schools conduct a seven-week Health Disparities
Clinical Summer Research Fellowship program that explores an
introduction to health disparities, cross-cultural issues, principles
of clinical medicine and skills for public health research and
interventions and techniques for working with diverse populations.
UCONN's program is illustrative of programs that dental schools at
the Universities of Iowa, Kansas, Maryland-Baltimore, South Alabama,
Marquette and Michigan have sponsored. The Health Resources and
Services Administration (HRSA) reports that the average grant is only
$670,000 and reaches over 7,100 students from underserved and
disadvantaged backgrounds.
If policy makers are serious about eradicating health disparities
and providing opportunities for underrepresented minorities and
economically disadvantaged individuals in healthcare, they will
continue this program at current levels and/or expand it.
Another vital program targeted at enhancing high quality culturally
competent care in community-based interprofessional clinical training
settings is the Area Health Education Centers (AHEC) program. The
infrastructure development grants and point of service maintenance and
expansion grants ensure that patients from underserved populations
receive quality care in a technologically current setting and that
health professionals receive training in treating such diverse
populations. ADEA encourages the Committee, in the strongest possible
terms, to continue funding the critically important AHEC program.
$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 like periodontal disease and tooth decay. The Dental
Reimbursement Program (DRP) is a cost-effective Federal/institutional
partnership providing partial reimbursement to academic dental
institutions for costs incurred in providing dental care to people
living with HIV/AIDS. Simultaneously, the program provides educational
and training opportunities to dental residents, dental students and
allied dental students. However, in fiscal year 2013, DRP only
reimbursed 26 percent of the dental schools' unreimbursed costs. The
current reimbursement rate is unsustainable. Remembering the adage,
good oral care is essential to good overall systemic care, dental care
is imperative to the health and well-being of people living with HIV/
AIDS.
Adequate funding of the Ryan White Part F programs will help ensure
that people living with HIV/AIDS receive critical oral healthcare.
$425 million: National Institute of Dental and Craniofacial Research
(NIDCR)
Dental 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 oral health for millions of
Americans and uncovered important links between oral and systemic
health. With grants from NIDCR, dental researchers in academic dental
institutions have garnered scientific and clinical knowledge used to
enhance the quality of the Nation's oral, and overall, health. Dental
researchers are poised to make breakthroughs that can result in
dramatic progress in medicine and health, such as repairing natural
form and function to faces destroyed by disease, accident, or war
injuries; diagnosing systemic disease from saliva instead of blood
samples (such as HIV and certain types of cancer); and deciphering the
complex interactions and causes of oral health disparities involving
social, economic, cultural, environmental, racial, ethnic and
biological factors. These breakthroughs, which continue America's role
as a global scientific leader, require adequate funding.
$20 million: Division of Oral Health, Centers for Disease Control and
Prevention (CDC)
The CDC Division of Oral Health expands the coverage of effective
prevention programs. The 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. This strong public health response is needed to meet the
challenges of oral disease affecting children and vulnerable
populations. The current path of decreased funding will have a
significant negative effect upon the overall health and preparedness of
the Nation's States and communities.
ADEA thanks you for your consideration of these funding requests.
ADEA and its 65 member institutions, looks forward to working with you
to ensure the continuation of congressional support for these critical
programs.
Please use ADEA as a resource on any matter pertaining to academic
dentistry under your purview. Contact Yvonne Knight, J.D., Senior Vice
President for Advocacy and Governmental Relations.
Visit our Web site for additional information about ADEA at http://
www.adea.org/.
______
Prepared Statement of the American Dental Hygienists' Association
introduction
On behalf of the American Dental Hygienists' Association (ADHA),
thank you for the opportunity to submit testimony regarding fiscal year
2016 appropriations. ADHA appreciates the Subcommittee's past support
of programs that seek to improve the oral health of Americans and to
bolster the oral health workforce. Oral health is a part of total
health and authorized oral healthcare programs require appropriations
support in order to increase the accessibility of oral health services,
particularly for the underserved. ADHA particularly appreciates the
Subcommittee's rejection of the block on funding for Section 340G-1 of
the Public Health Service Act--a much-needed dental workforce
demonstration program. We urge even more vigorous efforts this year to
ensure that the fiscal year 2016 HHS funding bill lifts the block and
that $2 million be appropriated.
Lifting the block on this dental workforce grants program,
officially titled the Alternative Dental Health Care Providers
Demonstration Program, would send an important signal to States and to
HRSA that innovation in dental workforce is a meritorious undertaking.
Even lifting the block and not funding the program would be a positive
message to States. Importantly, the authorizing language requires that
the grants be conducted in compliance with State law, that they must
increase access to dental healthcare in rural and other underserved
communities, and that the Institute of Medicine provide a qualitative
and quantitative evaluation of the grants. Importantly, nothing in
Section 340 G-1 would enable oral health practitioners to perform
dental surgery or ``irreversible procedures,'' unless a State
specifically allowed such services. Further, because the authorizing
language requires HRSA to begin the dental workforce grant program
under Section 340G-1 within 2 years of its 2010 enactment (i.e., by
2012) and to conclude it within 7 years of enactment (2017), language
directing HRSA to move forward with Section 340G-1 grants despite this
timeline is needed.
Widespread Support for Dental Workforce Innovation
The American Dental Association (ADA), ADHA and numerous other
groups have called for the creation of new types of dental providers.
Innovative oral health practitioner models were authorized in Minnesota
in 2009, followed by Maine in 2014. A February 2014 Report to the
Minnesota Legislature on the early impact of the new providers found
that benefits include ``direct cost savings, increased dental team
productivity, improved patient satisfaction and lower appointment fail
rates.'' \1\ Several States have mid-level oral health practitioner
legislation pending including Connecticut, Hawaii, Kansas,
Massachusetts, New Mexico, North Dakota, South Carolina, Texas, Vermont
and Washington State.
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\1\ Http://www.health.state.mn.us/divs/orhpc/workforce/dt/
dtlegisrpt.pdf.
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Both the W.K. Kellogg Foundation and the PEW Charitable Trust
Dental Campaign are investing in State efforts to increase oral
healthcare access by adding new types of dental providers to the dental
team. Groups as disparate as Families USA and Americans for Prosperity
have called for exploration of new dental providers. In a January 2015
report, Families USA called for ``improving access to care through
greater use of mid-level providers such as nurse practitioners and
dental therapists'' \2\ and Americans for Prosperity wrote in January
2015 that States should be ``free to innovate'' in the dental workforce
to solve access issues.
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\2\ Http://familiesusa.org/press-release/2015/families-usa-
proposes-health-reform-20.
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The National Dental Association, representing 6,000 Black dentists,
released its ``Position on Access to Care and Emerging Workforce
Models'' in July 2014, which stated that the NDA ``supports the
development and continuation of demonstration projects that can
demonstrate the impact and effectiveness of Emerging Workforce Models
[expanded function dental hygienists, expanded function dental
assistants, or dental therapists] on access to care, and total health
outcomes.'' \3\
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\3\ (Http://ndaonline.org/position-on-access-to-care-and-emerging-
workforce-models).
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The U.S. Federal Trade Commission supported dental workforce
expansion in November 2014, noting that expanding the supply of dental
therapists is ``likely to increase the output of basic dental services,
enhance competition, reduce costs and expand access to dental care.''
\4\ The National Governors Association's January 2014 issue brief on
``The Role of Dental Hygienists in Providing Access to Oral Health
Care'' found that ``innovative State programs are showing that
increased use of dental hygienists can promote access to oral
healthcare, particularly for underserved populations, including
children'' and that ``such access can reduce the incidence of serious
tooth decay and other dental disease in vulnerable populations.'' \5\
---------------------------------------------------------------------------
\4\ Https://www.ftc.gov/system/files/documents/advocacy_documents/
ftc-staff-comment-commission-dental-accreditation-concerning-proposed-
accreditation-standards-dental/141201codacomment.pdf.
\5\ Http://www.nga.org/files/live/sites/NGA/files/pdf/2014/
1401DentalHealthCare.pdf.
---------------------------------------------------------------------------
There is no dispute that new types of dental providers are needed;
the disagreement relates to what types of new providers are needed.
This underscores the need for demonstration projects under Section
340G-1 exploring what types of new providers work best in various
settings. Frankly, it is only the ADA that actively works to block
funding for Section 340G-1. They should be required to supply evidence
justifying their persistent opposition to Section 340G-1. ADHA urges
that a fact-based decision be made on whether or not to lift the block
on funding for Section 340G-1.
Dentist Shortage and Dental Hygienist Surplus Demand Better Utilization
of Dental Hygienists
---------------------------------------------------------------------------
\6\ HRSA March 2015 ``National and State-Level Projections of
Dentists and Dental Hygienists in the U.S., 2012-2025'' http://
bhpr.hrsa.gov/healthworkforce/supplydemand/dentistry/
nationalstatelevelprojectionsdentists.pdf.
---------------------------------------------------------------------------
In February 2015, HRSA projected that all 50 States and the
District of Columbia will experience a shortage of dentists by 2025. In
contrast, there will be an excess supply of dental hygienists at the
national level while five States (MI, MT, ND, SD, and WV) will
experience dental hygienist shortages from 21-93 FTEs.\6\
Title VII Program Grants to Expand and Educate the Dental Workforce--
Fund at a level of $35 million in fiscal year 2016
A number of existing grant programs offered under Title VII support
health professions education programs, students, and faculty. ADHA is
pleased dental hygienists are recognized as primary care providers of
oral health services and are included as eligible to apply for several
grants offered under the ``General, Pediatric, and Public Health
Dentistry'' grants. With millions more Americans eligible for dental
coverage in coming years, it is critical that the oral health workforce
is bolstered. Dental and dental hygiene education programs currently
struggle with significant shortages in faculty and there is a dearth of
providers pursuing careers in public health dentistry and pediatric
dentistry. Securing appropriations to expand the Title VII grant
offerings to additional dental hygienists and dentists will provide
much needed support to programs, faculty, and students in the future.
Oral Health Programming within the Centers for Disease Control--Fund at
a level of $20 million in fiscal year 2016
ADHA joins with others in the dental community in urging $20
million for oral health programming within the Centers for Disease
Control. This funding level will enable CDC to continue its vital work
to control and prevent oral disease, including vital work in community
water fluoridation. Federal grants will serve to facilitate improved
oral health leadership at the State level; support the collection and
synthesis of data regarding oral health coverage and access, promote
the integrated delivery of oral health and other medical services;
enable States to be innovative and promote a data-driven approach to
oral health programming.
National Institute of Dental and Craniofacial Research--Fund at a level
of $425 million in fiscal year 2016
The National Institute of Dental and Craniofacial Research (NIDCR)
cultivates oral health research that has led to a greater understanding
of oral diseases and their treatments and the link between oral health
and overall health. Research breeds innovation and efficiency, both of
which are vital to improving access to oral healthcare services and
improved oral status of Americans in the future. ADHA joins with others
in the oral health community to support NIDCR funding at a level of
$425 million in fiscal year 2016.
conclusion
ADHA is the largest national organization representing the
professional interests of more than 185,000 licensed dental hygienists
across the country. Thirty-seven States enable patients to directly
access oral health services provided by dental hygienists in settings
outside the private dental office. Sixteen State Medicaid programs
provide direct reimbursement to dental hygienists for oral health
services provided to Medicaid-eligible individuals.
ADHA urges the Subcommittee to lift the block on funding for
Section 340G-1 of the PHSA, dental workforce demonstration grants, in
its fiscal year 2016 HHS funding bill and urges vigorous efforts in
conference with the House of Representatives to finally remove this
unjustified prohibition. Lifting the block on funding for these dental
workforce grants would be an important signal to States and to
healthcare stakeholders that exploring new ways of bringing oral health
services to the underserved is a meritorious expenditure of resources.
Without the appropriate supply, diversity and distribution of the oral
health workforce, the current oral health access crisis will only be
exacerbated. ADHA recommends funding at a level of $2 million for
fiscal year 2016 to support these vital dental workforce demonstration
projects.
[This statement was submitted by Kelli Swanson Jaecks, MA, RDH,
President, American Dental Hygienists' Association.]
______
Prepared Statement of the American Diabetes Association
Thank you for the opportunity to submit testimony on behalf of the
American Diabetes Association (Association). For fiscal year 2016, the
Association urges the Subcommittee to make a substantial investment in
research and prevention efforts to find a cure, and improve the lives
of those living with, and at risk for, diabetes. We ask the
Subcommittee to provide $2.066 billion for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) at the National
Institutes of Health (NIH), $140.1 million for the Division of Diabetes
Translation (DDT) at Centers for Disease Control and Prevention (CDC),
and $20 million in funding for the National Diabetes Prevention Program
(National DPP) at CDC.
The nearly 105 million American adults and children living with
diabetes and prediabetes come from all walks of life and each of them
has a story. I have been living with type 1 diabetes since I was 13
years old. When I was diagnosed 39 years ago, I was told I shouldn't
expect to live to age 50. Thanks to the work of NIDDK and CDC, diabetes
treatment has advanced since my diagnosis and has contributed to my
ability to lead a productive life. However, not a moment goes by when
I'm not thinking about whether my blood sugar is in within the range to
prevent diabetes' devastating complications. The constant concern
leaves me weary and longing, hoping for a cure everyday. I was told the
cure was just around the corner when I was diagnosed; it has been a
long, difficult block. Additional Federal resources are needed to make
it around the corner to a world free of diabetes and its devastating
complications.
In March, I was in Washington for the Association's Call to
Congress, with other volunteers from around the country who are living
with or affected by diabetes. We shared our stories with our Senators
and Representatives to underscore the great need for full funding of
diabetes research and prevention programs at NIH and CDC and I am
honored to share several of those stories here.
Loretta Hothersall, an advocate from Maine, has diabetes and is a
nurse practitioner specializing in diabetes care. Loretta's
grandmother, brother, and granddaughter have type 1 diabetes, and her
grandfather, mother, aunts, and husband have type 2 diabetes. The
overwhelming impact of diabetes on her family led her to a career in
diabetes care. Loretta hopes for a greater investment in diabetes
prevention through the CDC so future families do not experience the
devastating burden of diabetes.
In April of 2014, Stovy Bowlin, from Cedar Creek, Texas faced the
fight of his life. He was diagnosed with type 2 diabetes, which was so
advanced he underwent emergency surgery to remove an infected abscess
on his thigh as a result of the disease. After recovering, Stovy
committed to improve his health and reach out to as many individuals
with diabetes and prediabetes as possible. He became a certified
lifestyle coach of the National DPP and is working to bring this proven
community-based lifestyle intervention for people at high risk for
diabetes to Cedar Creek. Stovy believes, and the Association agrees,
that the program has been proven to make a difference and it needs
funding to continue its critical mission.
Cullen and Aiden Darius are a dynamic duo of brothers from
California dedicated to fighting diabetes. Cullen is 14, and an honor
student who was diagnosed 5 years ago with type 1 diabetes. He excels
at history, science, and lacrosse. Unlike his fellow students and
teammates, Cullen has to stop and check his blood glucose up to ten
times a day, monitor all his meals and snacks, and make sure his blood
sugar stays in check during lacrosse games and practices. Aiden, who is
12, is a baseball-loving aspiring professional tennis player and chef.
Aiden was diagnosed with type 1 diabetes around his 4th birthday and
doesn't remember a time without diabetes. He estimates he has checked
his blood with a finger stick 33,000 times and has taken insulin 23,000
times. Last year, Aiden had a seizure. He doesn't recall having the
seizure, just the firemen who rushed him to the hospital, but Cullen
remembers it and says his brother's seizure is a reminder to us that
even with all of the exciting advances in diabetes care, it is a life
threatening condition, and those of us who live with diabetes can never
take a break. The hope for a cure keeps the Darius brothers going.
Finally, there is Anastasia Albanese-O'Neill, an advocate from
Florida, who wants a different life for Cassidy, her 14 year old
daughter with type 1 diabetes and Jackson, her 10 year old son, who is
at increased risk for diabetes. Her family's collective commitment to
creating a brighter future for everyone with diabetes spurred them to
enroll in research studies supported by NIDDK. Cassidy participates in
the Search for Diabetes in Youth (SEARCH) Study, which assesses the
impact of type 1 and type 2 diabetes in youth to improve prevention
efforts. The entire family has participated in the TrialNet Natural
History Study, which screens and studies close blood relatives of
people with type 1 diabetes because they have a 10 to 15 times greater
risk for developing the disease. And Jackson participates in The
Environmental Determinants of Diabetes in the Young (TEDDY) study, to
help scientists unravel the environmental factors contributing to type
1 diabetes. Anastasia's family are dedicated to these NIDDK studies
because they will move us forward in the effort to stop diabetes and we
urge Congress to follow their lead by making a deeper investment in
NIDDK's work.
The disabling, deadly and growing diabetes epidemic is an American
story touching all of our lives. According to the CDC, one in three
adults in our country--one in two among minority populations--will have
diabetes in 2050 if present trends continue. The sobering cost of this
horrific disease is lived everyday by those who endure blindness,
suffer heart attacks and strokes, wrestle with kidney failure and lose
limbs, along with other deadly complications. My life and those of many
other people living with, and at risk for, diabetes are better because
of NIH research and CDC prevention activities. Progress has been great,
but much more must be done.
This story does not have to be a tragedy--the final chapter has yet
to be written. America has the power to stop the diabetes epidemic and
make this a success story for the ages. We must start right now, with
fiscal year 2016 appropriations. Every year, 1.7 million Americans aged
20 years or older are diagnosed with diabetes. That means 4,380
Americans learn they have diabetes each day--one American every 19
seconds. In addition to the horrendous physical toll, diabetes is
economically devastating to our country. A 2014 report found the total
annual cost of diagnosed and undiagnosed diabetes, prediabetes, and
gestational diabetes in our country has skyrocketed by an astonishing
48 percent over 5 years--to $322 billion. People with diagnosed
diabetes have healthcare costs 2.3 times higher than those without
diabetes. 1 in 10 healthcare dollars is spent treating diabetes and its
complications. 1 in 3 Medicare dollars is spent caring for people with
diabetes. Despite the escalating cost of diabetes to our nation, the
Federal investment for diabetes research and programs at the NIH and
CDC has not equaled the shocking pace of the diabetes epidemic.
Individuals with and at risk for diabetes everywhere in our
country, deserve a different and brighter future. As the nation's
leading non-profit health organization providing diabetes research,
information and advocacy, the American Diabetes Association believes
the alarming state of our nation's diabetes epidemic justifies
increased Federal funding in fiscal year 2016 for diabetes research and
prevention programs.
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 change food into energy. In people with
diabetes, either the pancreas does not create insulin, which is type 1
diabetes, or the body does not create enough insulin and/or cells are
resistant to insulin, which is type 2 diabetes. Diabetes results in too
much glucose in the blood stream. Blood glucose levels that are too
high or too low (as a result of medication to treat diabetes) can be
life threatening in the short term. In the long term, diabetes is the
leading cause of kidney failure, new cases of adult-onset blindness,
and non-traumatic lower limb amputations. It is also a leading cause of
heart disease and stroke. Additionally, an estimated 18 percent of
pregnancies are affected by gestational diabetes, a form of glucose
intolerance diagnosed during pregnancy placing both mother and baby at
risk for complications and type 2 diabetes. In those with prediabetes,
blood glucose levels are higher than normal and individuals are at
increased risk for type 2 diabetes. Individuals with prediabetes can
take action to lower their risk for type 2 diabetes.
the national institute of diabetes and digestive and kidney diseases at
nih
To stop diabetes, Congress must support innovative research through
NIDDK. While the Association is grateful for the $5 million increase
for NIDDK provided in fiscal year 2015, which further helped the
efforts to restore sequestration cuts, funding for the Institute is
still below pre-sequestration levels. There is an urgent need to
increase the investment in discoveries at NIDDK. To meet this need, we
request funding for NIDDK of $2.066 billion in fiscal year 2016.
Thanks to groundbreaking research supported by NIDDK, people with
diabetes now manage their disease with a variety of insulin
formulations and regimens far superior to those used in decades past.
For example, the continuous glucose monitors and insulin pumps I use
allow me to better manage blood glucose levels. Because of these
advances, my hemoglobin A1C, which provides a snapshot of an
individual's blood glucose, went from 12.9 percent to 5.9 percent. Each
time I drop my A1C level I greatly increase my chances of fending off
diabetes's complications. This is a dramatic development for me and
proof of the importance of NIDDK.
Examples of NIDDK-funded innovations include: new drug therapies
for type 2 diabetes; the advent of modern treatment regimens, which
have reduced the risk of costly complications like heart disease,
stroke, amputation, blindness and kidney disease; and ongoing
development of the artificial pancreas, a closed looped system
combining continuous glucose monitoring with insulin delivery.
While important strides have been made at NIDDK, the Association's
fiscal year 2016 funding request reflects our concern that as the
diabetes epidemic has grown, funding for the Institute has lost
considerable ground. Due to both sequestration and funding not keeping
pace with biomedical inflation, important research has been thwarted.
For example, the NIDDK was forced to slow the initiation of a
comparative effectiveness trial testing different type 2 diabetes
medications due to insufficient resources, delaying critical
information about the most beneficial treatments for type 2 diabetes.
The NIDDK was also unable to fully fund a critically important program
preparing pediatricians for careers in pediatric endocrinology
research.
With $2.066 billion, the NIDDK will be able to fund additional
grants to support scientifically meritorious research. This includes
research to develop new therapeutic targets for type 2 diabetes. For
example, research opportunities exist to study brown fat tissue, which
burns calories to generate heat and is a promising target for the
development of treatment strategies to combat obesity and type 2
diabetes. Research is also underway to identify mechanisms underlying
the reversal of type 2 diabetes after bariatric surgery
Funding of $2.066 billion in fiscal year 2016 will allow the
complete restoration of sequestration cuts, enable NIDDK to support
current research projects and scientists, and enable additional studies
holding the promise of stopping diabetes.
the division of diabetes translation at cdc
The prevalence of diabetes has increased dramatically in every
State. The Federal Government's role in coordinating efforts to prevent
diabetes and its serious complications has never been more essential.
In fiscal year 2015, the Committee and Congress recognized this by
providing $140.129 million for DDT and its evidenced-based, outcomes-
focused diabetes programs. We urge the Federal investment in DDT
programs be funded at $140.129 million in fiscal year 2016.
The mission of DDT is to eliminate the preventable burden of
diabetes through research, education, and by translating science into
clinical practice. DDT has a proven success record in provision of
essential information and education to the public, health providers,
and patients about the dangers and complications of diabetes. This
includes efforts to help those with diabetes manage their disease and
avoid devastating complications such as blindness, end-stage kidney
disease, and amputation.
Maintaining resources for diabetes prevention, surveillance, and
research programs in fiscal year 2016 will strengthen the cornerstone
of DDT's work in all 50 States and the District of Columbia. This will
occur through the State Public Health Approaches to Chronic Disease
Prevention program (SPHA or 1305 state grant program) and the State and
Local Public Health Actions to Prevent Obesity, Diabetes and Heart
Disease (1422 grant program). The SPHA includes State programming for
diabetes, obesity, heart disease and stroke, and school health. We are
pleased all 50 States receive basic funding to support implementation
of crosscutting approaches to prevent and control diabetes, heart
disease and stroke, and obesity, and enhanced funding to expand the
reach of evidence-based diabetes interventions and conduct more
comprehensive evaluations of these efforts.
The 1422 grant program builds on the SPHA program and focuses on
improving community and health system prevention approaches in
populations with highest risk for prediabetes and high blood pressure.
These programs support evidence-based community programs to identify,
refer, and provide those at high risk for diabetes with cost-effective
interventions.
Additionally, investment in DDT in fiscal year 2016 will enable
community-based organizations to reduce risk factors for diabetes in
populations bearing a disproportionate burden of the disease through
the Native Diabetes Wellness Program. This program delivers effective
health promotion activities tailored to American Indian/Native Alaskan
communities.
the national diabetes prevention program at cdc
I am alarmed 86 million Americans have prediabetes and are on the
cusp of type 2 diabetes. 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 program is a
national network of local sites where trained staff provides those at
high risk for diabetes with cost-effective, group-based lifestyle
intervention programs. We urge Congress to provide $20 million for the
National DPP in fiscal year 2016 to continue its nationwide expansion.
The program is proven to combat the growing diabetes epidemic.
The National DPP began with 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, proving the
program also works in the less-costly community setting--at a cost of
about $300-$400 per participant.
Currently, over 1,095 sites are operating the program. Many of
these sites have applied for CDC quality standard recognition, which
can lead to third-party reimbursement of the program, ensuring its
long-term sustainability. Stopping the diabetes epidemic is not
possible without additional investment in the National DPP. Additional
funding in fiscal year 2016 will allow CDC to further bring to scale
this proven approach and support national training programs, public
awareness and provider education campaigns, and informed referral
networks.
conclusion
The Association is counting on Congress to significantly invest in
diabetes research and programs. We believe the best way to confront the
advancing human and economic pain diabetes exacts on our country is
with a deeper investment in cutting-edge medical research and
prevention strategies at NIDDK and DDT. We can--and must--change our
country's story with regard to this devastating disease, and we urge
the Subcommittee to reflect the explosive growth of this horrendous
disease in its fiscal year 2016 appropriations decisions. Thank you for
the opportunity to submit this testimony. The Association looks forward
to working with you to stop diabetes.
[This statement was submitted by Janel Wright, JD, Chair, Board of
Directors, 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.
Appreciative of these stringent times, we recommend that the Institute
of Education Sciences (IES) receives $703.6 million in fiscal year
2016. This recommendation is consistent with that of the Friends of IES
coalition, in which we are a leading member.
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 serve public good. Our members work in a range of
settings from universities and other academic institutions to research
institutes, Federal and State agencies, school systems, testing
companies, and nonprofit organizations, engaged in conducting research
in all areas of education and learning.
U.S. leaders and citizens broadly agree that education is a pathway
to success, not just for individuals, but also for our country's
economy. This belief is supported by research. For example, we have
learned that, when looking at the bottom income quartiles, bachelor
degree graduates are more upwardly mobile,\1\ indicating that obtaining
a bachelor's degree rather than only a high school diploma leads to
larger lifetime earnings and lower rates of future participation in
social programs.\2, 3\
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\1\ The Pew Charitable Trusts (2012). Pursuing the American Dream:
Economic Mobility Across Generations, Washington, D.C.: Author.
\2\ Carnevale, A.P., Rose, J. and Cheah, B. (2011). The College
Payoff. Washington, D.C.: Georgetown Center on Education and the
Workforce.
\3\ Baum, S., Ma, J., and Payea, K. (2013) Education Pays 2013: The
Benefits of Higher Education for Individuals and Society. Washington,
D.C.: The College Board.
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We also know that our citizens support investing in education. The
Pew Research Center found that 60 percent of survey respondents would
increase spending on education, a higher percentage than for any other
category. In order, however, to allocate resources to programs and
policies that work, we need reliable research to best guide decisions.
The public and policy makers value the provision of high quality
education, and our citizens are willing to spend more to improve
quality; nonetheless, education research was less than 2 percent of the
$67 billion dollars spent on research in 2013 by institutions of higher
education (largely Federal grants and contracts). By contrast, 56
percent of the R&D funding went to life sciences, and 31 percent
specifically to medical sciences. In 2015, the budget for IES was just
over 1 percent of the Department of Education budget, illustrating the
underinvestment in research on education as compared to other fields.
IES has made dramatic contributions to the progress of education
since it was created in 2002. Yet, we in the United States have a far
way to go to provide high quality education to all of our students. In
addition to old questions that remain unanswered--like how to best
prepare teachers, we have barely begun to understand the opportunities
provided by the advances in technology. IES needs increased funding to
continue our progress using rigorous research to inform education
policy.
National Center for Education Statistics (NCES)
NCES is one of the 13 leading Federal statistical agencies in the
U.S. It collects, analyzes, and reports on education data and
statistics on the condition of education in the United States, conducts
long-term longitudinal studies and surveys, and supports international
assessments in a manner that meets the highest methodological standards
and practices for data confidentiality and data security.
Federal, State, and local policymakers rely on over two dozen NCES-
supported survey programs, assessments, and administrative data sets,
as do schools, educators and researchers across the country. In
addition, the annual Condition of Education provides a comprehensive
statistical overview on early childhood, K-12, and postsecondary
education in the U.S.
NCES also provides technical assistance to public and private
education agencies and to States improving their statistical systems.
Grants from the Statewide Longitudinal Data Systems (SLDS) program
encourage States to build capacity to link data between early
childhood, K-12, and postsecondary systems. The President has requested
doubling the amount for this program from $35 million in fiscal year
2015 to $70 million in fiscal year 2016. This would enable States and
districts to conduct research and program evaluation in order to
generate timely and meaningful information for improving
accountability, assessment, and school support systems. One need only
look at research that analyzed State administrative data in North
Carolina and Washington State on early childhood programs, teacher
hiring, and other timely issues to understand the value of investing in
such data systems.
NCES is home to the National Assessment of Educational Progress
(NAEP), known as the ``Nation's Report Card.'' NAEP is an important
resource for identifying long-term trends in educational proficiency in
each State and--through the Trial Urban District Assessment-- in the
largest school districts in the Nation.
Also of significance is that NCES has responsibility for the
participation of the U.S. in international assessments and surveys that
prominently include the Program for International Student Assessment
(PISA), the Trends in International Mathematics and Science Study
(TIMSS), and Progress in International Reading Literacy Study (PIRLS).
Without continued adequate funding for these international assessments,
it will become more difficult to accurately gauge U.S. performance in
reading, math, and science in comparison to other countries. This
information is particularly useful in a time of increasing global
economic competitiveness.
At the current funding level, NCES is unable to adequately fund the
most timely information on several high-priority education policy
issues: Early childhood education, school crime and safety, and
postsecondary educational costs and student progress.
National Center for Education Research (NCER)
Over the past decade, NCER-funded research has made significant
advances in our understanding on a broad range of questions from how
best to support student learning to maximizing school completion and
adult education. In some cases, research funded by NCER has challenged
some of our pre-conceived assumptions about education. One area with
particularly interesting and valuable findings has been that of teacher
preparation. In the past, teacher quality was largely measured by
licensure. However, additional data and rigorous research have looked
at student progress, telling us much more about teacher performance.
Some of the results have been surprising--obtaining a master's degree
has not, for example, been linked to greater student achievement
(except for one study in middle school math). This begs the question,
how do we identify and duplicate professional development programs that
improve both teacher and student outcomes?
Despite the tremendous promise of NCER-funded research, proposals
receiving scores of Outstanding or Excellent go unfunded due to budget
constraints. In fiscal year 2014, this meant that a quarter of eligible
proposals that met that threshold were unable to be funded. Adequate
funding for NCER will allow its R&D centers and research grantees to
continue to produce rigorous research.
National Center for Special Education Research (NCSER)
NCSER supports research that investigates the conditions that
improve developmental and education outcomes for infants, toddlers,
children and youth with disabilities or who are at risk of developing
disabilities. In the short time since its creation in 2004 with the
Individuals with Disabilities Education Act, NCSER-supported research
has made important contributions to understanding factors related to
children's academic growth, developing measurement systems, documenting
skill development and learning and testing interventions designed to
improve educational outcomes.
The Centers for Disease Control estimated that 1 in 68 children are
identified with Autism Spectrum Disorder, a dramatic increase from the
1 in 150 children with ASD in 2002 with a corresponding growing cost to
provide educational services. NCSER is leading the charge to support
school-based interventions for this growing population. For example,
NCSER funded a project to gauge the efficacy of Learning Experiences
and Alternate Program for Preschoolers and their Parents (LEAP), which
focuses on enhancing the skills of children with autism through
interaction and play with typically-developing peers.
Despite these important research advances that could improve the
quality of life for children and families and result in enormous cost
savings, NCSER was unable to fund any new research grants in fiscal
year 2014 and anticipates not being able to fund projects receiving
Excellent and Outstanding ratings in fiscal year 2015.
National Center for Education Evaluation (NCEE) and Regional Assistance
NCEE conducts evaluations of large-scale educational projects and
Federal education programs and advances the use of IES knowledge by
informing the public and reaching out to practitioners with a variety
of dissemination strategies and technical assistance programs. The
Education Resources Information Center (ERIC) is a well-used resource
within the entire Department of Education, receiving 300,000 daily
visitors. In addition, the What Works Clearinghouse (WWC) provides
valuable information on the findings and methodologies in evaluations
of different education practices and policies. Recent WWC reviews of
research include studies of the Teacher Transfer Initiative, college
counseling during the summer after high school graduation, and the
Diagnostic Assessment Tools program.
Adequate funding for IES has the potential to help with some of the
other concerns of this committee--improving the educational outcomes of
our citizens would help not only future labor and workforce issues but
also improve the health of our citizens.
Thank you for the opportunity to submit written testimony in
support of $703.6 million for the Institute of Education Sciences in
fiscal year 2016. AERA welcomes working with you and your subcommittee
on strengthening investments in essential research, data, and
statistics related to education and learning. Please call on us if we
can provide additional information regarding this budget proposal.
[This statement was submitted by Felice J. Levine, Ph.D., Executive
Director, American Educational Research Association.]
______
Prepared Statement of the American Geriatrics Society
Mr. Chairman and Members of the Subcommittee: We submit this
testimony on behalf of the American Geriatrics Society (AGS), a non-
profit organization of over 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 2016
Labor-HHS-Education 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 Act, additional primary
care programs under the Health Resources and Services Administration,
and for research funding within the National Institutes of Health/
National Institute on Aging.
We ask that the subcommittee consider the following funding levels
for these programs in fiscal year 2016:
--$44.7 million for Title VII and Title VIII Geriatrics Workforce
Enhancement Programs
--$9.7 million for additional primary care workforce programs under
the Health Resources and Services Administration
--An increase of $500 million for aging research within the National
Institutes of Health
Sustained and enhanced Federal investments in these initiatives are
essential to delivering high quality, better coordinated and more cost
effective care to our Nation's seniors, 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 2010 and 2050 to 88.5 million or 20 percent of the population;
and those 85 and older will increase threefold to 19 million. 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.
programs to train geriatrics healthcare professionals
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 who
account for 80 percent of our Medicare expenditures, has been shown to
reduce common and costly conditions that are often preventable with
appropriate care, such as falls, polypharmacy, and delirium.
Title VII and Title VIII Geriatrics Workforce Enhancement Programs
($44.7 million)
The Geriatrics Workforce Enhancement Program (GWEP) is the only
Federal program that increases the number of faculty with geriatrics
expertise in a variety of disciplines who provide training in
geriatrics, including the training of interdisciplinary teams of health
professionals.
In December 2014, the Health Resources and Services Administration
(HRSA) announced that they will combine 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 Geriatrics Workforce Enhancement Program (GWEP).
According to HRSA, this newly consolidated program will provide greater
flexibility to grant awardees by allowing applicants to develop
programs that are responsive to specific interprofessional geriatrics
education and training needs of their communities. AGS, however, is
concerned that this consolidation could result in fewer awards to train
and educate geriatrics health professionals, including those who wish
to pursue academic careers. At a time when our Nation is facing a
severe shortage of geriatrics healthcare providers, the number of
educational and training opportunities should be expanded, not reduced.
To address this issue, we request additional funding for GWEP and
other key healthcare workforce programs for fiscal year 2016:
--Title VII Geriatrics Workforce Enhancement Program ($34.4 million)
Title VII Geriatrics Workforce Enhancement Program seeks to improve
high quality, interprofessional geriatric education and training to the
health professions workforce, including geriatric specialists, as well
as increase geriatric competencies of primary care providers and other
health professionals to improve care in medically underserved areas. We
ask the subcommittee to provide a fiscal year 2016 appropriation of
$34.4 million for the Title VII Geriatrics Workforce Enhancement
Program.
--Title VIII Geriatrics Workforce Enhancement Program ($5 million)
The American healthcare delivery system for older adults will be
further strengthened by Federal investments in the Title VIII
Geriatrics Workforce Enhancement Program. This program funds curricula
development and dissemination, continuing education, and traineeship
for individuals preparing for advanced nursing education degrees in
geriatric nursing, long-term care, gero-psychiatric nursing or other
nursing areas that specialize in the care of older Americans. Our
budget request of $5 million will provide support to train and educate
nurses caring for older Americans.
--Alzheimer's Disease Prevention, Education, and Outreach Program
(GECs) ($5.3 million)
Funding for this program will support the Geriatrics Workforce
Enhancement program by providing interprofessional continuing education
to health professionals on Alzheimer's disease and related dementias.
We are requesting $5.3 million to support this program.
Additional Workforce Programs under the Health Resources and Services
Administration ($9.7 million)
--National Health Care Workforce Commission ($3 million)
The National Health Care Workforce Commission was established in
the Affordable Care Act to identify barriers to healthcare workforce
development and to formulate a national strategy to address the
shortage; however, Congress has not provided funding for the Commission
to be convened. AGS believes that the Commission's work--including
research on topics such as workforce priorities and goals; current and
projected workforce supply; and needs and assessments of current
education and training activities--is an important first-step in the
effort to bolster the healthcare workforce in order to meet the needs
of the burgeoning number of older Americans. We request $3 million for
the Commission so that it can accomplish its essential mission.
--Geriatric Incentive Awards Program ($3.3 million)
Congress authorized this program under the Affordable Care Act to
provide financial support to foster greater interest among a variety of
health professionals entering the field of geriatrics, long-term care,
and chronic care management. Our funding request includes $3.3 million
for this program.
--Training Opportunities for Direct Care Workers ($3.4 million)
Under the Affordable Care Act, Congress approved a program that
will offer advanced training opportunities for direct-care workers.
While this program was left out of President Obama's budget, AGS
believes that Congress must fund it to improve training and enhance the
recruitment and retention of direct-care works, particularly those in
long-term care settings. As our population ages, these workers will be
an integral part of efforts to ensure that older adults have access to
high quality care. We are requesting $3.4 million for this program.
research funding initiatives
National Institutes of Health/National Institute on Aging (additional
$500 million over fiscal year 2015)
The institutes that make up the National Institutes of Health and
specifically the National Institute on Aging, 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, a
broad-based coalition of aging, disease, research, and patient groups
committed to the advancement of medical research that affects millions
of older Americans, AGS urges an increase of $500 million in National
Institutes of Health funding for biomedical, behavioral, and social
sciences aging research efforts across all institutes.
Considering the significant amount of funds the Federal Government
spends on healthcare costs associated with age-related diseases, it
makes sound economic sense to increase Federal resources for aging
research. Currently, chronic diseases related to aging, such as
diabetes, heart disease and cancer afflict 80 percent of people age 65
and older and account for more than 75 percent of Medicare and other
Federal health expenditures. Continued Federal investments in
scientific research will ensure that the NIH has the resources to
succeed in its mission to establish research networks, assess clinical
interventions and disseminate credible research findings to patients,
providers and payers of healthcare.
In closing, geriatrics is at a critical juncture, with our Nation
facing an unprecedented increased in the number of older patients with
complex health needs. Strong support such as yours will help ensure
that every older American is able to receive high-quality care.
Thank you for your consideration.
______
Prepared Statement of the American Heart Association
Remarkable strides have been made in the prevention and treatment
of cardiovascular disease (CVD) and stroke. However, we must face the
hard truth. There is still no cure for America's No. 1 and most costly
killer. CVD costs nearly $1 billion a day. Stroke is our No. 5 killer
and second leading cause of dementia.
Today, nearly 86 million U.S. adults suffer from some form of CVD
and those grim statistics will only get worse. It is projected that by
the year 2030, nearly 44 percent of U.S. adults will live with CVD at a
cost exceeding $1 trillion annually. Yet inexplicably, CVD research,
prevention, and treatment remain disproportionately underfunded with no
sustained and stable funding from the National Institutes of Health.
Therefore, we emphasize that robust NIH-funded research is vital for a
continuing and effective campaign against these deadly and debilitating
diseases.
The American Heart Association recognizes the challenges our Nation
and Congress face to reduce the budget deficit. However, sequestration
is not, and never is the answer. These cuts put at grave risk the
health of tens of millions of CVD sufferers, stifle economic growth,
and jeopardize our global leadership in medical research. We therefore
challenge Congress to appropriate stable and sustained funding for CVD
research, prevention, and treatment. Moreover, during the upcoming
debate on funding, Congress should recognize that NIH-funded research
has a proven return on investment. It drives economic growth, including
good, high- paying jobs, stimulates innovation, and maintains America's
time-honored leadership in medical research--something that is now
under threat with the current budget constraints on the NIH.
funding recommendations: investing in the health of our nation
It comes down to this. Research that could move us closer to a cure
for cardiovascular disease and stroke goes unfunded. Congress must
capitalize on 50 years of progress or our Nation will pay more in lives
lost and healthcare costs. Our recommendations tackle these issues in a
fiscally responsible way.
Capitalize on Investment for the National Institutes of Health (NIH)
Robust NIH-funded research helps prevent and cure disease,
transforms patient care, stimulates economic growth, fosters
innovation, and maintains U.S. leadership in pharmaceuticals and
biotechnology. NIH is the world's leader of basic research--the
foundation for all medical advances--and an essential Federal
Government function that the private sector cannot ever replace. But,
our country's competitive edge in scientific research has been eroded
in recent years by scarce funding.
In addition to improving health, NIH generates a solid return on
investment. In fiscal year 2012, NIH supported 400,000 U.S. jobs and
created about $60 billion in new economic activity. Every $1 in NIH
funding created $2 in economic activity in 2007. Yet, due to scarce
resources over the past decade, NIH lost more than 20 percent of its
purchasing power. Sadly, this decline occurred at a time of
unprecedented scientific opportunity as other countries wisely
increased investment in science--some by double digits. These cuts have
disheartened early U.S. career investigators who may decide against
pursuing a career in research unless Congress takes action.
American Heart Association Advocates.--We urge Congress to
appropriate $33 billion for NIH to begin to restore its purchasing
power, and advance cardiovascular disease research.
Enhance Funding for NIH Heart and Stroke Research: A Proven and Wise
Investment
NIH research plays a pivotal role in reducing CVD death rates.
Today, scientists are close to discoveries that could result in
revolutionary treatments and even cures. In addition to saving lives,
NIH studies are economical. For example, investments in the NIH Women's
Health Initiative postmenopausal estrogen plus progestin trial
generated a total economic return of $140 for every $1 invested in the
trial and led to 76,000 fewer cases of cardiovascular disease. The
first NIH tPA drug trial led to a 10-year net $6.47 billion reduction
in stroke care costs.
Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
Much of the decline in cardiovascular disease death rates is a
result of NHLBI-funded research. However, this begs the question, ``Why
has NHLBI extramural heart research fallen 17 percent in constant
dollars since 2002?'' Stable and sustained NHLBI funding remains key to
building on investments that have led to major advances. Look at
losartan as an alternative treatment for Marfan syndrome; the
identification of loss of-function apolipoprotein C3 gene changes as a
potential therapy for cutting heart disease risk; the use of
nanoparticles to cut atherosclerotic plaque inflammation; and cells
from human induced pluripotent stem cells to fix damaged heart tissue.
Sustained funding will allow the NHLBI to implement its bold strategic
vision.
Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
An estimated 795,000 Americans will suffer a stroke this year and
nearly 129,000 will die from one. Many of the 7 million survivors deal
with grave physical, mental, and emotional distress. In addition,
stroke costs an estimated $34 billion in medical expenses and lost
productivity each year and a recent study projects that direct costs of
stroke will triple between 2010 and 2030.
Stable and sustained NINDS funding is vital to building on stroke
advances, including research showing that a stent system removes clots
in large blood vessels to stop stroke damage. More resources could also
help improve stroke recovery; boost NIH Stroke Trials Network; hasten
translation of preclinical animal models into clinical studies; prevent
vascular cognitive damage; expedite comparative effectiveness research
trials; develop imaging biomarkers; refine clot-busting treatments;
achieve robust brain protection; and promote the use of neural
interface devices. Additional funding is also needed to support the
BRAIN Initiative.
American Heart Association Advocates.--We recommend that NHLBI be
funded at $3.3 billion and NINDS at $1.8 billion.
Increase Funding for the Centers for Disease Control and Prevention
(CDC)
Prevention is the best way to protect us from the physical and
fiscal ravages of heart disease and stroke. Yet, proven efforts are not
fully executed due to scarce funds. We thank Congress for retaining in
Public Law 113-203 the needed boost for the Division for Heart Disease
and Stroke Prevention. In addition to funding research and evaluation
and developing a surveillance system, the DHDSP directs Sodium
Reduction in Communities and the Paul Coverdell National Acute Stroke
Registry. DHDSP and the Centers for Medicare and Medicaid Services are
promoting the Million HeartsTM initiative aimed at stopping
1 million heart attacks and strokes by 2017. DHDSP runs WISEWOMAN,
serving uninsured and under-insured, low-income women ages 40 to 64. It
helps them from becoming heart disease and stroke statistics through
preventive health services, referrals to local healthcare, and tailored
lifestyle plans to foster lasting behavioral change.
American Heart Association Advocates.--We join the CDC Coalition in
asking for $7.8 billion for CDC's program level. AHA requests $130.037
million for the DHDSP to intensify work on the State Public Health
Actions and on the State and Local Public Health Actions To Prevent
Obesity, Diabetes, Heart Disease, and Stroke; and $37 million for
WISEWOMAN. We ask for $5 million for Million HeartsTM to
better control blood pressure--a ``silent killer'' of Americans.
Restore Funding for Rural and Community Access to Emergency Devices
(AED) Program
About 90 percent of cardiac arrest victims die outside of a
hospital. Yet, early CPR and use of an AED can more than double
survival. Communities with full AED programs have survival rates near
40 percent. HRSA's Rural and Community AED Program awards competitive
grants to States to buy AEDs, tactically place them, and train lay
rescuers and first responders in their use. As a result of this
program, nearly 800 patients were saved from August 1, 2009 to July 31,
2010. But scarce resources allow only 19 percent of approved applicants
in 6 States to receive funds in fiscal year 2014.
American Heart Association Advocates.--We advocate for an $8.927
million appropriation for PHS Act sections 413 and 313, returning the
program to fiscal year 2005 levels with 47 funded States.
conclusion
Cardiovascular disease, including stroke, still inflict a
staggering physical and economic toll on the American people. Our
recommendations for NIH, CDC, and HRSA will save lives and reduce
healthcare costs. We respectfully ask the Committee to endorse our
recommendations that are a wise investment for our great Nation and the
well-being of this and future generations.
[This statement was submitted by Elliott Antman, M.D., President,
American Heart Association.]
______
Prepared Statement of the American Hospital Association
On behalf of our nearly 5,000 member hospitals, health systems and
other healthcare organizations, and our 43,000 individual members, the
American Hospital Association (AHA) appreciates the opportunity to
submit a statement regarding actions Congress can take to ensure
accessible, affordable healthcare services are available in rural
areas. We applaud the subcommittee for holding this hearing.
Approximately 51 million Americans live in rural areas and depend
upon the hospital as an important--and often only source of healthcare
in their community. Remote geographic location, small size, limited
workforce, physician shortages and often constrained financial
resources pose a unique set of challenges for rural hospitals.
Additionally, burdensome, duplicative, and often outdated Federal
regulations and policies present consistent strain on the ability for
rural hospitals to keep their doors open and provide needed healthcare
services.
The AHA recommends Congress take action on the issues discussed
below to provide relief from harmful Federal regulations and policies
and protect important programs.
96-hour rule
The Centers for Medicare & Medicaid Services (CMS) has published
guidance, in relation to its two-midnight admissions policy that
implies that the agency will begin enforcing a condition of payment for
critical access hospitals (CAHs) that requires a physician to certify
that a beneficiary may reasonably be expected to be discharged or
transferred to another hospital within 96 hours of admission. While
CAHs must maintain an annual average length of stay of 96 hours, they
offer some critical medical services that have standard lengths of stay
greater than 96 hours. Enforcing the condition of payment will force
CAHs to eliminate these ``96-hour plus'' services. The resulting
financial pressure will severely affect their ability to operate and,
therefore, threaten access to care for beneficiaries in rural
communities.
The AHA supports the Critical Access Hospital Relief Act (S. 258/
H.R. 169), which would remove the 96-hour condition of payment. CAHs
would still be required to satisfy the condition of participation
requiring a 96-hour annual average length of stay.
direct supervision
CMS recently removed its moratorium on Medicare contractors
enforcing its policies related to its ``direct supervision''
requirement of outpatient therapeutic services furnished in CAHs and
small rural hospitals with 100 or fewer beds. Therefore, for 2015 and
beyond, the agency requires a minimum of direct supervision for all
outpatient therapeutic services furnished in hospitals and CAHs, unless
the service is on the list of services that may be furnished under
general supervision or is designated as a nonsurgical extended duration
therapeutic service. The AHA is deeply disappointed that CMS did not
heed the concerns voiced by CAHs and small rural hospitals that
imposing this policy is not only unnecessary, but also will result in
reduced access to care.
The AHA supports the Protecting Access to Rural Therapy Services
Act (S. 257/H.R. 1611), which, among other things, would adopt a
default standard of ``general supervision'' for these outpatient
therapeutic services.
recovery audit contractors (racs)
Overzealous RACs are wasting resources by inundating hospitals with
requests for records, requiring specialized staff to handle the heavy
workload, and flooding the government appeals process with denials that
are overturned more than two-thirds of the time. Rural hospitals are
often particularly affected by overly aggressive RAC audits, because
they may lack the human and financial resources to respond to ongoing
records requests and to appeal perpetually inaccurate claims denials.
The AHA supports bipartisan legislation introduced in the U.S.
House of Representatives, the Medicare Audit Improvement Act (H.R.
2156), which makes common-sense, fundamental changes to improve the
program's efficiency and fairness, including changing how RAC
contractors are paid. Rather than the current 9-12.5 percent
contingency fee RACs receive for each denied claim, the AHA recommends
RACS be paid a flat fee, just as all other Medicare contractors.
According to AHA survey data, hospitals appeal 49 percent of their
RAC denials and win 72 percent of the time at the third level of
appeal, according to the Health and Human Services' Office of Inspector
General. But the appeals process also is heavily backlogged, taking up
to 3 years for a claim to work its way through the system. Yet
hospitals are allowed only 1 year to rebill any claim.
rural community hospital (rch) demonstration
The Medicare RCH Demonstration Program was established under the
Medicare Prescription Drug, Improvement and Modernization Act, and
further extended in 2010 under the Affordable Care Act (ACA). The
demonstration allows 30 rural community hospitals to test the
feasibility of cost-based reimbursement for small rural hospitals that
are too large to be CAHs. Currently, 23 hospitals participate in the
demonstration.
The AHA supports the bipartisan Rural Community Hospital
Demonstration Extension Act (S. 332/H.R. 663), which extends the
program, in its current form, for 5 years. By extending the
demonstration for five more years, this legislation will ensure that
these hospitals may continue to provide services rural communities
need.
extenders
The AHA applauds Congress for passing the Medicare Access and Chip
Reauthorization Act of 2015 (MACRA), which temporarily extended several
important programs for rural hospitals, including the:
--Medicare-Dependent Hospital program (extended until October 1,
2017);
--Enhanced adjustment for certain low-volume hospitals (extended
until October 1, 2017);
--Ambulance add-on payments for ground ambulance services and super-
rural areas (extended until January 1, 2018);
--Therapy cap exceptions process until (extended until January 1,
2018); and
--Medicare home health rural add-on until January 1, 2018.
The MACRA, which is now current law, provided short-term certainty
for several important programs; however, more needs to be done. AHA-
supported, bipartisan, bicameral legislation has been introduced this
Congress to make each of these extensions permanent.
Medicare-Dependent Hospital (MDH) Program
The network of providers that serves rural Americans is fragile and
more dependent on Medicare revenue because of the high percentage of
Medicare beneficiaries who live in rural areas. Additionally, rural
residents on average tend to be older, have lower incomes and suffer
from higher rates of chronic illness than their urban counterparts.
This greater dependence on Medicare may make certain rural hospitals
more financially vulnerable to prospective payment.
To reduce this risk and support small rural hospitals for which
Medicare patients make up a significant percentage of inpatient days or
discharges, Congress established the MDH program in 1987. The
approximately 200 MDHs are paid for inpatient services the sum of their
prospective payment system (PPS) rate plus three-quarters of the amount
by which their cost per discharge exceeds the PPS rate. These payments
allow MDHs greater financial stability and leave them better able to
serve their communities. The MDH program will expire on October 1,
2017.
The AHA strongly encourages Congress to pass the Rural Hospital
Access Act (S. 332/H.R. 663), bipartisan legislation to permanently
extend the enhanced low-volume adjustment payment and the MDH program.
Low-Volume Adjustment
The ACA improved the then low-volume adjustment for fiscal years
(FY) 2011 and 2012. For these years, a low-volume hospital was defined
as one that was more than 15 road miles (rather than 35 miles) from
another comparable hospital and had up to 1,600 Medicare discharges
(rather than 800 total discharges). An add-on payment was given to
qualifying hospitals, ranging from 25 percent for hospitals with fewer
than 200 Medicare discharges to no adjustment for hospitals with more
than 1,600 Medicare discharges.
This enhanced low-volume adjustment was extended by Congress in
several subsequent years. Over 500 hospitals received the low-volume
adjustment in fiscal year 2013.
Medicare seeks to pay efficient providers their costs of furnishing
services. However, certain factors beyond providers' control can affect
these costs. Patient volume is one such factor and is particularly
relevant in small and isolated communities where providers frequently
cannot achieve the economies of scale possible for their larger
counterparts. Although a low-volume adjustment had existed in the
inpatient PPS prior to fiscal year 2011, CMS had defined the
eligibility criteria so narrowly that only two to three hospitals
qualified each year.
The improved low-volume adjustment in the ACA better accounts for
the relationship between cost and volume, helps level the playing field
for low-volume providers, and sustains and improves access to care in
rural areas. This program expires October 1, 2017.
The AHA strongly encourages Congress to pass the Rural Hospital
Access Act (S. 332/H.R. 663), bipartisan legislation to permanently
extend the enhanced low-volume adjustment payment and the MDH program.
Ambulance Add-On Payments
Small patient volumes and long distances put tremendous financial
strain on ambulance providers in rural areas. To help alleviate this
situation and ensure access to ambulances for patients in rural areas,
the Medicare Prescription Drug, Improvement, and Modernization Act
increased payments by 2 percent for rural ground ambulance services and
included a super rural payment for counties are in the lowest 25
percent in population density. Congress, in the Medicare Improvements
for Patients and Providers Act (MIPPA), raised this adjustment to 3
percent for rural ambulance providers. Most recently, Congress extended
these adjustments until January 1, 2018.
Congress appropriately decided that these additional rural payments
were necessary and important because rural ambulance providers incur
higher per-trip costs because of longer travel distances and fewer
transports of patients. These provisions ensure that ambulance services
are more appropriately reimbursed and that beneficiaries in rural and
super rural areas will have access to emergency transport services.
The AHA supports the bipartisan Medicare Ambulance Access, Fraud
Prevention and Reform Act (S. 377/H.R. 745), which would permanently
extend the ambulance add-on payment adjustment.
telehealth
Telehealth increasingly is vital to our healthcare delivery system,
enabling healthcare providers to connect with patients and consulting
practitioners across vast distances. Hospitals are embracing the use of
telehealth technologies because they offer benefits such as virtual
consultations with distant specialists, the ability to perform high-
tech monitoring without requiring patients to leave their homes, and
less expensive and more convenient care options for patients. According
to AHA survey data, in 2013, 52 percent of hospitals used telehealth
and another 10 percent were beginning the process of implementing
telehealth services.\1\
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\1\ AHA Annual Survey, Health Information Technology Supplement
(2013).
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Approximately 20 percent of Americans live in rural areas where
many do not have easy access to primary care or specialist services.
The availability of telehealth services to these areas facilitates
greater access to care by eliminating the need to travel long distances
to see a qualified healthcare provider. Telehealth also can fill gaps
in subspecialist care. Telepharmacy is another way to offer patients
the convenience of remote drug therapy monitoring, authorizing for
prescriptions, patient counseling and monitoring patients' compliance
with prescriptions. With a nationwide shortage of psychiatrists,
telepsychiatry can assist patients in need of behavioral health
services who may otherwise have to drive hours to see mental health
providers. Telepsychiatry services allow psychiatrists to speak to and
evaluate patients in need of mental health services through
videoconferencing.
Rural and critical access hospitals are often in need of critical
care clinicians to diagnose, manage, stabilize and make transfer
decisions concerning their most complex patients. Tele-ICU programs can
help hospitals supplement clinician staffing of their ICU beds. In
addition to improving access, patients are increasingly expecting
levels of convenience in healthcare similar to what is available in the
retail and banking sectors.\2\ Telehealth, regardless of geographic
location, can foster a patient's ability to connect with a primary care
physician or health system on a more flexible basis and often without
an in-person visit. Patients are able to receive services at a distance
by using secure online video services or through secure email, often
with the added benefit of reducing travel to healthcare facilities. The
AHA urges to committee to provide funding to expand these types of
telehealth opportunities.
---------------------------------------------------------------------------
\2\ PricewaterhouseCoopers Health Research Institute. New Health
Economy (April 2014).
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funding for rural programs
As the committee deliberates on funding for programs within the
Departments of Labor, Health and Human Services (HHS), Education and
Related Agencies for fiscal year 2016, the AHA urges you to consider
the potential effect your committee's decisions will have on rural
hospitals' ability to meet the many challenges facing them--such as
workforce shortages, maintaining emergency readiness, coordinating care
for the chronically ill and facilitating information technology to
improve safety and quality of care.
While we recognize the fiscal constraints imposed upon the
committee, we ask you to give strong and favorable funding
consideration to the following rural healthcare programs, which have
proven successful in improving access to quality healthcare. They have
served to greatly improve the health of our citizens and we ask that
you make funding these programs a priority in your fiscal year 2016
appropriations measure
--Health Professions Programs. An adequate, diverse and well-
distributed supply of healthcare professionals, including
allied healthcare workers, is indispensable to our Nation's
healthcare infrastructure. Health professions programs help
address problems associated with maintaining primary care
providers in rural areas. These programs also support
recruitment of individuals into allied health professions. Our
Nation must maintain a vibrant workforce in the educational
pipeline. Without decisive intervention, workforce shortages
threaten hospitals' ability to care for patients and
communities.
--National Health Service Corps (NHSC). The NHSC awards scholarships
to health professions students and assists graduates of health
professions programs with loan repayment in return for an
obligation to provide healthcare services in underserved rural
and urban areas. The AHA supports maintaining investments in
the NHSC.
--Rural Health Programs. Rural Health Programs, such as the Medicare
Rural Hospital Flexibility Grant Program, Rural Health Outreach
and Network Development, State Offices of Rural Health, Rural
Telehealth, Rural Policy Development, and other healthcare
programs are vital to ensuring that needed services remain
available in America's rural communities. The president's
fiscal year 2016 budget proposes to cut rural health programs
by $20 million to rural programs. The AHA urges the
subcommittee to reject efforts to cut funding below current
levels for these programs.
conclusion
The Nation's nearly 2,000 rural community hospitals frequently
serve as an anchor for their region's health-related services,
providing the structural and financial backbone for physician practice
groups, health clinics and post-acute and long-term care services. In
addition, these hospitals often provide essential, related services
such as social work and other types of community outreach. Rural
hospitals face additional challenges due to their often remote
geographic location, small size, limited workforce and constrained
financial resources.
The AHA urges the subcommittee to take action on the aforementioned
issues to ensure access to healthcare services in rural communities.
______
Prepared Statement of the American Indian Higher Education Consortium
This statement includes the fiscal year 2016 requests of the
Nation's Tribal Colleges and Universities (TCUs), covering three areas
within the Department of Education and one in the Department of Health
and Human Services, Administration for Children and Families' Head
Start Program.
department of education
I. Higher Education Act Programs
--Strengthening Developing Institutions. Titles III and V of the
Higher Education Act support institutions that enroll large
proportions of financially disadvantaged students and have low
per-student expenditures. The TCUs, which by any definition are
truly developing institutions, are funded under Title III-A
Sec. 316 and provide quality higher education opportunities to
some of the most rural/isolated, impoverished, and historically
underserved areas of the country. The goal of HEA-Titles III/V
programs is ``to improve the academic quality, institutional
management and fiscal stability of eligible institutions, in
order to increase their self-sufficiency and strengthen their
capacity to make a substantial contribution to the higher
education resources of the Nation.'' The TCU Title III-A
program is specifically designed to address the critical, unmet
needs of American Indian/Alaska Native (AI/AN) students and
their communities, in order to effectively prepare them to
succeed in a globally competitive workforce. Yet, in fiscal
year 2011 this critical program was cut by over 11 percent, by
another 4 percent in fiscal year 2012, and hit by
sequestration--on the lowered baseline--in fiscal year 2013.
Although sequestration was not imposed in fiscal year 2014 or
fiscal year 2015, the TCUs are still feeling the impact of the
earlier cuts to this vitally important program. The TCUs urge
the Subcommittee to restore the discretionary funding for HEA
Title III-A, Sec. 316 to $30,000,000 in fiscal year 2016.
Additionally, we ask that language be included clarifying that
funds awarded under Title III, Sec. 316 shall remain available for an
additional 5 years beyond the initial grant period, as is the case for
grants awarded under the historically Black colleges and Universities
(HBCUs) program; the other Title III grants that are awarded by
formula. The language requested is as follows:
``The committee directs the U.S. Department of Education to allow
any funds paid to an institution and not expended or used for
the purposes for which the funds were paid during the 5-year
period following the date of the initial grant award, may be
carried over and expended during the succeeding 5-year period,
if such funds were obligated for a purpose for which the funds
were paid during the 5-year period following the date of the
initial grant award.''
The Department of Education has recently decided that it does not
have the authority to extend the time that TCU-Title III grant funds
must be formally obligated or encumbered beyond the initial 5-year
grant period. According to the Department, a TCU may not request even a
routine 1 year, no-cost extension on a Title III award, without
forfeiting the chance to receive a new 5-year grant during that year.
Most of the initial 5-year grants awarded by formula will close at the
end of this current fiscal year. Many of the colleges are addressing
long-term issues of inadequate facilities and insufficient
infrastructure on their campuses using part of their Title III grant.
Because these projects are long-term, while the funds are intended for
these projects, not all of the funds have been expended or formally
obligated. As it stands now, funds remaining in the initial grant that
are not spent or formally obligated by September 30, 2015 will revert
to the U.S. Treasury and be lost to the program. Therefore, colleges
will have to abandon their carefully crafted strategic plans for the
funds and find other ways to use them by September 30, or lose them
altogether. We do not believe this to be a wise or effective way of
administering this critically needed grants program. AIHEC is working
with the Department to get this apparent misinterpretation of current
law fixed. The language that we are seeking is the same as that
included in the Title III program for HBCUs, which as noted earlier, is
the other formula-funded Title III program. By adding this same
language to the TCUs program, the Department will be afforded the
authority and direction needs to allow the extension of time to expend
TCU Title III grant funds intended for long-term projects that for many
reasons may require additional time to complete.
--TRIO. Retention and support services are vital to achieving the
national goal of having the highest proportion of college
graduates in the world by 2020. TRIO programs, such as Student
Support Services and Upward Bound, were created out of
recognition that college access is not enough to ensure
advancement and that multiple factors work to prevent the
successful completion of postsecondary programs for many low-
income and first-generation students and students with
disabilities. Therefore, in addition to providing the maximum
Pell Grant award level, it is critical that Congress also
sustain student assistance programs, such as Student Support
Services and Upward Bound so that low-income and minority
students have the Federal support necessary to allow them to
remain enrolled in and ultimately complete their higher
education degrees.
Pell Grants.--The importance of Pell Grants to TCU students cannot
be overstated. More than 70 percent of TCU students receive Pell
Grants, primarily because student income levels are so low and they
have far less access to other sources of financial aid than students at
State-funded and other mainstream institutions. Within the TCU system,
Pell Grants are doing exactly what they were intended to do--they are
serving the needs of the lowest income students by helping them gain
access to quality higher education, an essential step toward becoming
active, productive members of the workforce. However, the Department of
Education changed its regulations to limit Pell eligibility from 18 to
12 full-time semesters, without any consideration of those already in
the process of attaining a postsecondary degree. This change in policy
impeded some TCU students from completing a postsecondary degree, which
is widely recognized as being critical for access to, and advancement
in, today's highly technical workforce.
TCUs are open enrollment institutions. Recent placement tests
administered at TCUs to first-time entering students indicated that 70
percent required remedial math, 53 percent required remedial reading,
and 60 percent required remedial writing. These results clearly
illustrate just how serious this new Pell Grant eligibility limit is to
the success of TCU students in completing a postsecondary degree.
Students requiring remediation can use as much as a full year of
eligibility enhancing their math, and/or reading/writing skills,
thereby hampering their future postsecondary degree plans. A prior
national goal was to provide access to quality higher education
opportunities for all students regardless of economic means, at which
TCUs have been extremely successful. While the new national goal
intends to produce graduates with postsecondary degrees by 2020, this
change in policy does not advance that objective. On the contrary, the
change in the regulations will cause many low-income students to once
again abandon their dream of a postsecondary degree, as they will
simply not have the means to continue to pursue it. This new policy
evokes the adage ``penny wise--pound foolish'' and could indeed
compromise the laudable goal of producing a well-trained technically
savvy workforce. The TCUs urge the Subcommittee to continue to fund
this essential program at the highest possible level, and to direct the
Secretary of Education to implement a process to waive the impractical
12 semester Pell Grant eligibility for TCU students, to allow them to
catch-up and excel.
II. Perkins Career and Technical Education Programs
--Tribally-Controlled Postsecondary Career and Technical
Institutions: Section 117 of the Carl D. Perkins Career and
Technical Education Act provides a competitively awarded grant
opportunity for tribally chartered and controlled career and
technical institutions. AIHEC requests $8,200,000 to fund
grants under Sec. 117 of the Perkins Act.
--Native American Career and Technical Education Program (NACTEP):
NACTEP (Sec. 116) reserves 1.25 percent of appropriated funding
to support American Indian career and technical programs. The
TCUs strongly urge the Subcommittee to continue to support
NACTEP, which is vital to the continuation of career and
technical education programs offered at TCUs that provide job
training and certifications to remote reservation communities.
III. American Indian Adult and Basic Education (Office of Vocational
and Adult Education)
This program supports adult basic education programs for American
Indians offered by State and local education agencies, Indian tribes,
agencies, and TCUs. Despite the absence of dedicated funding, TCUs must
find a way, often using already insufficient institutional operating
funds, to continue to provide adult basic education classes for those
American Indians that the present K-12 Indian education system has
failed. Before many individuals can even begin the course work needed
to learn a productive skill, they first must earn a GED or, in some
cases, even learn to read. The new GED exam, which was instituted in
January 2014, is more focused on mathematics. As noted earlier,
placement tests for TCU-entering students reveal an enormous need for
math remediation. Additionally, the new GED test is fully computerized.
While younger GED seekers may be well-versed and comfortable with
computer-based testing, older and poorer citizens may not be. These
factors indicate a further and growing need for adult basic educational
programs and GED preparation on Indian reservations. TCUs must have
sufficient and stable funding to continue to provide these essential
services and to ensure their respective reservation community residents
have the same chances to succeed that others throughout the country
have. In fiscal year 2015, Congress appropriated approximately
$569,000,000 million for Adult Education State grants. TCUs request the
Subcommittee to direct that $8,000,000 of the funds appropriated in
fiscal year 2016 for Adult Education State Grants be made available to
make competitive awards to TCUs to help meet the growing demand for
adult basic education and remediation program services on their
respective Indian reservations.
u.s. department of health and human services program
Tribal Colleges and Universities Head Start Partnership Program
(DHHS-ACF).--Tribal Colleges and Universities are ideal partners to
help achieve the goals of Head Start in Indian Country. The TCUs are
instrumental in meeting the mandate that Head Start teachers earn
degrees in Early Childhood Development or a related discipline. In
fiscal year 1999 Health and Human Services-Administration for Children
and Families established the TCU-Head Start Partnership program. By
2004, TCUs had awarded more than 400 certificate and degrees. The 2007
reauthorization of the Head Start Act included mandates on education
for Head Start workers and teachers, and specifically authorized the
TCU-HS Partnership. Ironically, that was the last year of funding for
the program. Today, 71 percent of teachers nationally, have required
degrees and credentials. By contrast, in Indian Country (Region 11)
only 36 percent of the teachers meet the requirements set forth in the
Head Start Act reauthorization. Clearly, the need for proper training
is high in Indian Country, and the TCUs are perfectly situated to help
address this inexcusable gap in training the tribal Head Start
workforce. The TCUs request that of the over $10,000,000,000 proposed
for making payments under the Head Start Act $5,000,000 be designated
for the TCU-Head Start Partnership program, as reauthorized in PL 110-
134, to ensure that TCUs can continue to provide high quality,
culturally appropriate training for those working in reservation Head
Start programs.
We respectfully request that the Members of the Subcommittee
continue and expand the Federal investment in the Nation's Tribal
Colleges and Universities and carefully consider our fiscal year 2016
appropriations needs and requests.
______
Prepared Statement of the American Liver Foundation
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--$32 Billion for the National Institutes of Health (NIH) at an
increase of $1 billion over fiscal year 2015. Increase funding
for the National Cancer Institute (NCI), the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute of Allergy and Infectious Diseases (NIAID)
by 12 percent.
--Support the NIH Portfolio on Viral Hepatitis and Other Liver
Diseases and Liver Cancers within NIDDK'S Liver Disease
Research Branch.
--$62.82 Million for the Centers for Disease Control and Prevention's
(CDC) Division of Viral Hepatitis.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and esteemed members of the
Subcommittee, thank you for the opportunity to again submit testimony
to the Subcommittee. Founded in 1976, the American Liver Foundation
(ALF) is the Nation's leading nonprofit health organization for people
living with liver disease. ALF is a nationwide network of staff and
volunteers that provides awareness, outreach, education and patient
support services to educate the public about liver health and to
improve the lives of individuals and their families affected by liver
disease.
ALF's mission is to facilitate, advocate and promote education,
support and research for the prevention, treatment and cure of liver
disease, including focusing on hepatitis C, which untreated leads to
liver disease.
ALF makes measurable difference in the fight against liver disease
by providing resources for medical research, educating patients,
families, caregivers, and healthcare professionals, advocating for
patients and their families, and 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 Hep. 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.
ALF would like to thank the Subcommittee for its past support of
liver disease and viral hepatitis research and prevention programs at
the National Institutes of Health (NIH) and the Centers for Disease
Control and Prevention (CDC).
Specifically ALF recommends:
--32 billion for the NIH
--$2.066 billion for the National Institute of Diabetes and Digestive
and Kidney Disease (NIDDK) with support for the Liver Diseases
Research Branch
--$62.82 million for CDC's Division of Viral Hepatitis
We at the ALF respectfully request that any increase for NIH does
not come at the expense of other Public Health Service agencies. With
the competing and the challenging budgetary constraints the
Subcommittee currently operates under, the ALF would like to highlight
the current advancements being made.
viral hepatitis: a looming threat to health
ALF applauds all the work NIH and CDC have accomplished over the
past year in the areas of hepatitis and liver disease. ALF urges that
funding be focused on expanding the capability of State health
departments, particularly to enhance resources available to the
hepatitis State coordinators. ALF also urges that CDC increase the
number of cooperative agreements with coalition partners to develop and
distribute health education, communication, and training materials
about prevention, diagnosis and medical management for viral hepatitis.
ALF supports $62.82 million for the CDC's Hepatitis Prevention and
Control activities. The hepatitis division at CDC supports the
hepatitis C prevention strategy and other cooperative nationwide
activities aimed at prevention and awareness of hepatitis A, B, and C.
ALF also urges the CDC's leadership and support for the National Viral
Hepatitis Roundtable to establish a comprehensive approach among all
stakeholders for viral hepatitis prevention, education, strategic
coordination, and advocacy.
digestive disease commission
In 1976, Congress enacted Public Law 94-562, which created a
National Commission on Digestive Diseases. The Commission was charged
with assessing the State of digestive diseases in the U.S., identifying
areas in which improvement in the management of digestive diseases can
be accomplished and to create a long-range plan to recommend resources
to effectively deal with such diseases.
ALF recognizes the creation of the National Commission on Digestive
Diseases, and looks forward to working with the National Commission to
address liver diseases, cancers, and the epidemic of Viral Hepatitis.
conclusion
ALF understands the challenging budgetary constraints and times we
live in that this Subcommittee is operating under, yet we hope you will
carefully consider the tremendous benefits to be gained by supporting a
strong research and education program at NIH and CDC.
Millions of Americans are pinning their hopes for a better life, or
even life itself, on liver disease research conducted through the
National Institutes of Health. Mr. Chairman, on behalf of the millions
of liver disease and viral hepatitis patients, we appreciate your
consideration of the views of the American Liver Foundation. We look
forward to working with you and your staff.
[This statement was submitted by Navin VIJ, MD, Patient Advocate,
American Liver Foundation.]
______
Prepared Statement of the American Lung Association
The American Lung Association is pleased to present our
recommendations for fiscal year 2016 to the Labor, Health and Human
Services, and Education Appropriations Subcommittee. The public health
and research programs funded by this committee will prevent lung
disease and improve and extend the lives of millions of Americans.
Founded in 1904 to fight tuberculosis, the American Lung Association is
the oldest voluntary health organization in the United States. The
American Lung Association is the leading organization working to save
lives by improving lung health and preventing lung disease through
education, advocacy and research.
a sustained investment is necessary
Mr. Chairman, investments in prevention and wellness pay near- and
long-term dividends for the health of the American people. In order to
save healthcare costs in the long-term, investments must be made in
proven public health interventions including tobacco control, asthma
programs and tuberculosis programs. Our Nation must also continue its
historic investments in biomedical research for better cures,
treatments, diagnostics and detections for lung diseases.
Lung Disease
Each year, more than 400,000 Americans die of lung disease. It is
America's number three killer, responsible for one in every six deaths.
More than 33 million Americans suffer from a chronic lung disease and
it costs the economy an estimated $173 billion each year. Lung diseases
include: lung cancer, asthma, chronic obstructive pulmonary disease
(COPD), tuberculosis, pneumonia, influenza, sleep disordered breathing,
pediatric lung disorders, occupational lung disease and sarcoidosis.
Improving Public Health and Maintaining Our Investment in Medical
Research
The American Lung Association strongly supports increasing overall
Centers for Disease Control and Prevention (CDC) funding to $7.8
billion in order for CDC to carry out its prevention mission and to
assure an adequate translation of new research into effective State and
local programs.
The U.S. must also maintain its commitment to medical research.
While our focus is on lung disease research, we support increasing the
investment in research across the entire NIH with particular emphasis
on the National Cancer Institute, the National Heart, Lung and Blood
Institute, the National Institute of Allergy and Infectious Diseases,
the National Institute of Environmental Health Sciences, the National
Institute of Nursing Research, the National Institute on Minority
Health & Health Disparities and the Fogarty International Center.
The Prevention and Public Health Fund
The American Lung Association strongly supports the Prevention and
Public Health Fund established in the Affordable Care Act and asks the
Committee to oppose any attempts to divert or use the Fund for any
purposes other than what it was originally intended. The Prevention
Fund provides funding to critical public health initiatives, like
community programs that help people quit smoking, support groups for
lung cancer patients, and classes that teach people how to avoid asthma
attacks. Money from the Prevention Fund has also been used to pay for
the CDC's media campaign ``Tips from Former Smokers.'' The Tips
campaign has resulted in hundreds of thousands of Americans quitting
smoking and has been demonstrated to have an incredible return on
investment. A commonly accepted threshold for cost-effective public
health interventions is $50,000. The 2012 Tips campaign spent $480 per
smoker who quit and $393 per year of life saved.
Tobacco Use
Tobacco use is the leading preventable cause of death in the United
States, killing close to half a million people every year. Over 46
million adults and 3.6 million youth in the U.S. smoke. Annual
healthcare and lost productivity costs total $289 billion in the U.S.
each year.
Given the magnitude of the tobacco-caused disease burden and how
much of it can be prevented, the CDC Office on Smoking and Health (OSH)
should be much larger and better funded. Public health interventions,
including but not limited to the Tips campaign, have been
scientifically proven to reduce tobacco use, the leading cause of
preventable death in the United States. The American Lung Association
urges that $220 million be appropriated to OSH for fiscal year 2016.
Lung Cancer
More than 402,000 Americans alive today have ever been diagnosed
with lung cancer. During 2015, approximately 221,000 new cases of lung
cancer will be diagnosed, and over 158,000 Americans will die from lung
cancer. Survival rates for lung cancer tend to be much lower than those
of leading cancers. African Americans are more likely to develop and
die from lung cancer than persons of any other racial group.
Lung cancer receives far too little attention and focus. Given the
magnitude of lung cancer and the enormity of the death toll, the
American Lung Association strongly recommends that the NIH and other
Federal research programs commit additional resources to lung cancer so
that there can be better cures, treatments and early detection for lung
cancer. Recognizing that personalized therapies may offer the best hope
to people with lung cancer, the Lung Association supports the $215
million precision medicine proposal included in the President's fiscal
year 2016 budget. We support a funding level of $5.265 billion for the
National Cancer Institute and urge more attention and focus on lung
cancer.
Asthma
Asthma is highly prevalent and expensive. More than 25 million
Americans currently have asthma, of whom close to 7 million are
children. Asthma prevalence rates are over 45 percent higher among
African Americans than whites. Asthma costs our healthcare system over
$50.1 billion annually and indirect costs from lost productivity add
another $5.9 billion, for a total of $56 billion dollars annually.
The American Lung Association asks this Committee to appropriate
$30.596 million to the CDC's National Asthma Control Program (NACP) in
fiscal year 2016. The NACP tracks asthma prevalence, promotes asthma
control and prevention and builds capacity in State programs. This
program has been highly effective: the rate of asthma has increased,
yet asthma mortality and morbidity rates have decreased. However, at
present only 23 States receive funding--leaving a nationwide public
health void that can lead to unnecessary asthma-related attacks and
healthcare costs.
In addition, we recommend that the National Heart, Lung and Blood
Institute receive $3.188 billion and the National Institute of Allergy
and Infectious Diseases receive $4.635 billion, and that both agencies
continue their investments in asthma research in pursuit of treatments
and cures.
Chronic Obstructive Pulmonary Disease (COPD)
COPD is the third leading cause of death in the U.S. It has been
estimated that 11.5 million patients have been diagnosed with some form
of COPD and as many as 24 million adults may suffer from its
consequences. In 2012, 139,958 people in the U.S. died of COPD. The
annual cost to the Nation for COPD in 2010 was projected to be $49.9
billion. We strongly support funding the National Heart, Lung and Blood
Institute and its lifesaving lung disease research program at $3.188
billion. The American Lung Association also asks the Committee to
continue its support of the National Heart, Lung and Blood Institute
working with the CDC and other appropriate agencies to act on its
national action plan to address COPD, which should include public
awareness and surveillance activities.
Influenza
Public health experts warn that 209,000 Americans could die and
865,000 would be hospitalized if a moderate flu epidemic hits the U.S.
To prepare for a potential pandemic, the American Lung Association
supports funding the Federal CDC Influenza efforts at $187.558 million.
Tuberculosis (TB)
There are an estimated 10 million to 15 million Americans who carry
latent TB infection, and it is estimated that 10 percent of these
individuals will develop active TB disease. In 2014, there were 9,412
cases of active TB reported in the U.S. While declining overall TB
rates are good news, the emergence and spread of multi-drug resistant
TB and totally-drug resistant TB also poses a significant public health
threat. We request that Congress increase funding for tuberculosis
programs at CDC to $243 million for fiscal year 2016.
impact of climate change on lung health
Climate change is one of the greatest threats to public health.
CDC's Climate and Health Program is the only HHS program devoted to
identifying the risks and develop effective responses to the health
impacts of climate change, including worsening air pollution; diseases
that emerge in new areas; stronger and longer heat waves; more frequent
and severe droughts, and provides guidance to States in adaptation.
Pilot projects in 16 State and two city health departments States use
CDC's Building Resilience Against Climate Effects (BRACE) framework to
develop and implement health adaptation plans and address gaps in
critical public health functions and services. As climate-related
challenges intensify, CDC must have increased resources to support
States and cities in meeting the challenge. The Lung Association
supports the President's Budget Request of $18.613 million for the
Center for Disease Control and Prevention's Climate and Health Program.
Additional Priorities
We strongly encourage improved disease surveillance and health
tracking to better understand diseases like asthma. We support an
appropriations level of $35 million for the Environment and Health
Outcome Tracking Network. This program supports investments in
communities to identify and improve policies and environmental factors
influencing health and reduce the burden of chronic diseases.
Conclusion
Mr. Chairman, lung disease is a continuing, growing problem in the
United States. It is America's number three killer, responsible for one
in six deaths. Progress against lung disease is not keeping pace with
progress against other major causes of death and more must be done. The
level of support this committee approves for lung disease programs
should reflect the urgency illustrated by the impact of lung disease.
[This statement was submitted by Harold Wimmer, National President
and CEO, American Lung Association.]
______
Prepared Statement of the American National Red Cross
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
control activities of the U.S. Centers for Disease Control and
Prevention (CDC). The American Red Cross and the United Nations
Foundation recognize the leadership that Congress has shown in funding
CDC for these essential activities. We sincerely hope that Congress
will continue to support the CDC during this critical period in measles
control.
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization (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 impressive results by
supporting the vaccination of more than 1.8 billion children since
2001. Largely due to the Measles & Rubella Initiative, global measles
mortality dropped 75 percent, from an estimated 548,000 deaths in 2000
to 145,700 in 2013 (the latest year for which data is available).
During this same period, measles deaths in Africa fell by 88 percent.
About 400 children still die from measles each day from a virus that
can be countered with 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 easily than the flu or the Ebola virus. In fact, one
person infected with measles can infect up to 18 others if he has not
been vaccinated. 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 treatment is very costly to treat, yet very
inexpensive to prevent.
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
$1.3 billion and provided technical support in more than 88 developing
countries on vaccination campaigns, surveillance and improving routine
immunization services. From 2000 to 2013, an estimated 15.6 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.
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, vitamin A (crucial for preventing
blindness in under nourished children), de-worming medicine (reduces
malnutrition), and insecticide-treated bed nets (ITNs) for malaria
prevention are distributed during vaccination campaigns. Doses of oral
polio vaccines are frequently distributed 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 these diseases. The
delivery of multiple child health interventions during a single
campaign is far less expensive than delivering the interventions
separately, and this strategy increases the potential positive impact
on children's health from a single campaign.
The extraordinary reduction in global measles deaths greatly
contributed to reducing under-five child mortality. However, large
outbreaks in several African, European and Asian countries from 2011 to
2014 have compromised 2015 measles elimination goals. These outbreaks
highlight the fragility of the last decade of progress. If mass
immunization campaigns are not continued, measles deaths will rapidly
increase.
To achieve 2020 elimination goals and avoid a resurgence of
measles, the following actions are required:
--Fully implementing activities, both campaigns and strengthening
routine measles coverage, in India since it is the greatest
contributor to the global burden of measles and congenital
rubella syndrome though surveillance is weak in recording the
latter.
--Sustaining the gains in reduced measles deaths, especially in
Africa, by strengthening immunization programs to ensure that
more than 90 percent of infants are vaccinated against measles
through routine health services before their first birthday as
well as conducting timely, high quality mass immunization
campaigns.
--Accelerating the introduction of a second dose of measles
containing vaccine into the routine immunization program of
eligible countries with support from Gavi, the Vaccine
Alliance.
--Securing sufficient funding for measles and rubella-control
activities both globally and nationally. The Measles & Rubella
Initiative faces a funding shortfall of an estimated U.S.
$368.8 million for 2015-2020. Implementation of timely measles
campaigns is increasingly dependent upon countries funding
these activities locally. The decrease in donor funds available
at a global level to support measles 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.
If these challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles deaths will
occur.
By controlling measles and rubella cases in other countries, U.S.
adults and children are also being protected from the diseases. Measles
can cause severe complications such as pneumonia, encephalitis, and
even death. A resurgence of measles occurred in the United States
between 1989 and 1991, with more than 55,000 cases reported. This
resurgence was particularly severe, accounting for more than 11,000
hospitalizations and 123 deaths. Since then, measles control measures
in the United States have been strengthened, and endemic transmission
of measles cases have been eliminated here since 2000 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 664 people
across 27 States in 2014; the greatest number of cases reported in the
U.S. since measles was declared eliminated in 2000. The country is
currently experiencing a large, multi-State outbreak of measles with
178 cases reported by the CDC to March 27. The financial impact of
these cases and outbreaks are substantial, both in terms of the costs
to public health departments to conduct contact tracing and in terms of
productivity losses among people with measles and parents of sick
children. Studies show that a single case of measles in the United
States can cost between $100,000 and $200,000 to control.
the role of cdc in global measles mortality reduction
Since fiscal year 2001 and until 2015, Congress has provided
funding for the purchase of measles vaccine for use in large-scale
measles vaccination campaigns in more than 88 countries in Africa and
Asia, and for the provision of technical support to Ministries of
Health. Specifically, this technical support includes:
--Planning, monitoring, and evaluating large-scale measles
vaccination campaigns;
--Conducting epidemiological investigations and laboratory
surveillance of measles outbreaks; and
--Conducting operations research to guide cost-effective and high
quality measles control programs.
In addition, CDC epidemiologists and public health specialists have
worked closely with WHO, UNICEF, the United Nations Foundation, and the
American Red Cross to strengthen measles control programs at global and
regional levels, and will continue to work with these and other
partners in implementing and strengthening rubella control programs.
While it is not possible to precisely quantify the impact of CDC's
financial and technical support to the Measles & Rubella Initiative,
there is no doubt that CDC's support--made possible by the funding
appropriated by Congress--was essential in helping achieve the sharp
reduction in measles deaths in just 13 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 work well with other
organizations and provide solutions to complex problems that help
critical work get done faster and more efficiently.
In fiscal year 2014 and fiscal year 2015, Congress appropriated
$49.8 million each year to fund CDC for global measles control
activities. In fiscal year 2016, the American Red Cross and the United
Nations Foundation request sustained funding at the level requested by
the President, $49.8 million for CDC's measles and rubella control
activities to protect the investment of the last decade and prevent a
global resurgence of measles.
Your commitment has brought us unprecedented victories in reducing
measles mortality around the world. In addition, your continued support
for this initiative helps prevent children from suffering from this
preventable disease both abroad and in the United States.
Thank you for the opportunity to submit testimony.
[This statement was submitted by Harold Brooks, Senior Vice
President of International Operations, American National Red Cross.]
______
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).
Research carried out by the NIH contributes to our understanding of
health and disease, which allows all Americans to look forward to a
healthier future. The APS urges you to make every effort to provide the
NIH with at least $32 billion in fiscal year 2016. This is necessary to
prevent further erosion of research capacity.
Federal investment in research is critically important because
breakthroughs in basic and translational research are the foundation
for new drugs and therapies that help patients, fuel our economy, and
provide jobs. The Federal Government is the primary funding source for
discovery research through competitive grants awarded by the NIH.
Although the private sector partners with academic researchers to
develop research findings into new treatments, industry relies upon
federally funded research to identify where innovation opportunities
can be found. This system of public-private partnership has been
critical to U.S. leadership in the biomedical sciences. However, this
position of leadership is at risk as other nations, including China,
increase their investments in research and development while the United
States investment has lagged in recent years.
Federal research dollars also have a significant impact at the
local level: more than 80 percent of the NIH budget is awarded
throughout the country to researchers who use grant funds to pay
research and administrative staff, purchase supplies and equipment, and
cover other costs associated with their research.
Challenges facing the scientific community
Twenty years ago leaders in Congress undertook the grand challenge
of doubling the budget of the NIH with a vision of moving biomedical
science forward and improving quality of life for people around the
world. The investment that Americans made between 1995 and 2003 allowed
the biomedical research enterprise to grow in many ways: more research
was funded, new investigators were trained, and the infrastructure
required to support the science expanded to fit the need.
Unfortunately, the NIH budget has declined in constant dollars each
year since 2004, causing a slow erosion of research capacity. Between
fiscal year 2003 and 2015, NIH's capacity to support research declined
by 22.9 percent. This was further exacerbated by the spending caps put
in place by the Budget Act of 2011, which caused significant cuts for
the agency in fiscal year 2013. One analysis showed that NIH supported
approximately 1000 fewer investigators in fiscal year 2013 as a result
of budget cuts.\1\ Researchers who lose their funding face an uncertain
future as there are few options to sustain their research without
Federal grants. Losing Federal support puts at risk the investment that
it took to build those programs over many years. It also means that
talented individuals working in those labs will have to look elsewhere
for increasingly scarce jobs. As a result of stagnant funding for NIH,
scientists at all stages of their careers struggle to maintain their
research programs.
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Fundamental changes are needed to ensure long-term sustainability
for the scientific enterprise and many groups have undertaken efforts
to maximize the amount of research that can be carried out with the
resources available. However, the reality is that scientists are
approaching the point where they can no longer ``do more with less''
and as a result, less research will be accomplished. We urge Congress
to make every effort to provide NIH with the resources necessary to
sustain the scientific enterprise and move research forward. The APS
joins the Federation of American Societies for Experimental Biology
(FASEB) in urging that NIH be provided with at least $32 billion in
fiscal year 2016.
The promise of research
This year the NIH has announced plans to advance scientific
priorities including:
--Continued investment in the Brain Research through Advancing
Innovative Neurotechnologies (``BRAIN'') initiative. The BRAIN
initiative brings together researchers from diverse disciplines
to tackle major gaps in current knowledge about the brain and
brain diseases.
--A new Precision Medicine initiative would invest heavily in cancer
genomics, and develop a national research cohort of 1 million
participants.
--Resources would also be devoted to a multi-agency Antimicrobial
Resistance initiative to address the growing public health
crisis represented by the rise of multiple drug resistant
pathogenic bacteria.
These important projects require significant resources, and at a
time of constrained budgets, that will further diminish funding for
investigator-initiated grants that focus on major disease areas
including cancer and cardiovascular disease, the major killers of
American citizens. The NIH system of allowing investigators to develop
and propose ideas, which are then evaluated by their peers and selected
for funding based on their merit has fostered a research enterprise
that is second to none and has been the source of most every major new
discovery in medicine. Increasing the NIH budget to $32 billion would
provide funding for priority projects as described above, while also
providing resources for individual scientists to pursue creative new
avenues of research.
The NIH also uses the Institutional Development Award (IDeA)
Program to broaden the geographic distribution of NIH funds by
providing support to researchers and institutions in areas that have
not previously received significant NIH funding. IDeA builds research
capacity and improves competitiveness in those States by developing
shared resources, infrastructure and expertise. Networks established
through this program expand research opportunities for students and
faculty at predominantly undergraduate institutions and enhance the
level of science and technology knowledge of the workforce in IDeA
States. The program currently serves institutions and researchers in 23
States and Puerto Rico. The APS believes this program is an important
way to broaden participation in the scientific workforce.
The APS 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 10,000 member physiologists. APS
members conduct NIH-supported research at colleges, universities,
medical schools, and other public and private research institutions
across the U.S.
______
Prepared Statement of the American Psychiatric Association
introduction & background
The American Psychiatric Association (APA), the national medical
specialty society representing over 36,000 psychiatric physicians, is
pleased to present its recommendations regarding fiscal year 2016
appropriations for Graduate Medical Education (GME), the National
Institute of Mental Health (NIMH), the National Institute on Drug Abuse
(NIDA), the National Institute on Alcohol Abuse and Alcoholism (NIAAA),
the Substance Abuse and Mental Health Services Administration (SAMHSA),
and Indian Health Services.
APA recognizes that the Subcommittee faces difficult decisions in a
constrained budget environment. However, a continued commitment to
critical programs supporting physician workforce development should
remain a high priority. Strong, sustained funding of mental health and
substance use disorder services is necessary to ensure the overall
health of Americans and the Nation's economic prosperity. Federal
investment is also vital for the National Institutes of Health (NIH) to
sustain its mission of improving health through medical science
breakthroughs and maintaining international leadership in science and
biomedical research.
Impact of Budget Cuts on America's Health
Continued austerity will have a tremendous impact on the Nation's
medical schools and teaching hospitals and the patients they serve.
Deficit reduction proposals to cut Medicare GME support, including
decreases in Indirect Medical Education (IME) payments, threaten access
to critical services and reduce physician training at a time when
patient needs are increasing. Between 2010 and 2050, the United States
population ages 65 and older will nearly double, the population ages 80
and older will nearly triple. The Nation's elderly and disabled
Medicare beneficiaries must have access to treatment of psychiatric and
substance use disorders.
The Nation's supply of pediatricians and pediatric specialists
depend on physician training programs at the Nation's children's
hospitals. Training programs are supported by the Children's Graduate
Medical Education program (CHGME). Reductions to CHGME jeopardize the
supply of pediatricians and pediatric specialists that all children
need. APA opposes Administration's proposed 38 percent cut to $100
million for CHGME, from fiscal year 2015's $265 million funding level.
importance of federal investments in biomedical research
APA strongly advocates for Federal investments to discover and
develop treatments for mental illnesses and substance use disorders.
The National Institute of Mental Health (NIMH) conservatively estimates
the total costs associated with serious mental illnesses, disorders
that are severely debilitating and affect about 6 percent of the adult
population, to be in excess of $300 billion per year ($193 billion loss
of earnings, $100 billion heath care expenditures and $24.3 billion
disability benefits). The costs associated with mental illnesses stem
from both the direct expenditures for mental health services and
treatment (direct costs), and from expenditures and losses related to
the disability caused by these disorders (indirect costs). Indirect
costs include public expenditures for disability support, lost earnings
among people with serious mental illness, and burden on families. More
specific diagnostic tools, earlier treatment, developing medications
with fewer side effects, and the potential of genomic-sensitive
treatments are important priorities for NIMH. Gender and ethnic
differences exist in the development, clinical course, and outcomes of
bipolar disorder and schizophrenia. We need to understand the reasons
for these disparities and develop methods of addressing them.
Investment in the NIH and the Brain Research through Advancing
Innovative Neurotechnologies Initiative (BRAIN) will advance this
knowledge.
Drug abuse and addiction have serious consequences for individuals,
families and for society. Estimates of the total overall costs of
substance abuse in the United States, including productivity and
health- and crime-related costs, exceed $600 billion annually. This
includes approximately $181 billion for illicit drugs, $193 billion for
tobacco, and $235 billion for alcohol. As staggering as these numbers
are, they do not fully describe the breadth of destructive public
health and safety implications of substance use and addiction, such as
family disintegration, loss of employment, failure in school, domestic
violence, and child abuse. The National Institute on Drug Abuse (NIDA)
and the National Institute on Alcohol Abuse and Alcoholism (NIAAA) are
tasked with developing and implementing new treatments for addiction
and identifying the causes and contributors of addiction. The need has
never been greater for support of research on opiate addiction,
prevention of prescription drug abuse, and the impact of alcohol on
liver disease.
importance of federal investments in services
Seventy 5 percent of States reported a substantial increase in
demand for community-based mental healthcare services. This higher
demand comes at a time when States are closing psychiatric hospitals
and clinics and reducing support for community-based mental health
services. SAMHSA's Center for Mental Health Services (CMHS) funds
important programs including: State block grants, suicide prevention,
homelessness prevention, jail diversion for people with mental illness,
and services for children and the elderly. Due to the economic
downturn, States have been forced to cut mental healthcare funding by a
total of nearly $4.6 billion since 2008. SAMHSA's Center for Substance
Abuse Treatment (CSAT) and Center for Substance Abuse Prevention (CSAP)
provides millions to States in block grants for flexibility in
responding to the particular needs in each State. The APA would like to
draw the Committee's attention to SAMHSA's Minority Fellowship Training
program which underpins training for psychiatrists and other mental
healthcare providers in underserved areas of the United States. The
successful Minority Fellowship Training program promotes ethnic
diversity and supports access to care for vulnerable populations.
APA Requests
APA requests that NIH receive at least $32 billion in fiscal year
2016 as the next step toward a multi-year increase in our Nation's
investment in medical research. While the Consolidated Appropriations
Act of 2014 included an increase for the National Institutes of Health
(NIH), this increase did not reinstate all of the funds cut by
sequestration in fiscal year 2013 nor did it restore inflation's
erosion of purchasing power over the past decade. We hope fiscal year
2016 represents a first step toward re-establishing sustained,
predicable funding to restore our Nation's preeminence in medical
research.
For the Center for Mental Health Services (CMHS) under SAMSHA, APA
supports an appropriation of $10 million for CMHS' successful Minority
Fellowship Training program to respond to workforce needs. As Congress
considers funding of the ``Now is the Time Initiative'' within CMHS,
APA requests that a variety of early detection programs be allowed to
enter a competitive grant program for these funds. CMHS' fiscal year
2015 Omnibus Appropriations measure included a 5 percent set-aside in
the Mental Health Block Grant for the promulgation of evidence-based
programs that address the needs of individuals with early serious
mental illness, including psychotic disorders. APA supports this CMHS-
NIMH collaboration. The APA remains concerned over the rise in
addiction and abuse of opioid medications. APA strongly encourages the
further training of physicians, including psychiatrists, for opioid-
dependence treatment including the use of Suboxone and Buprenorphine.
These medications act as ``opioid antagonists'' and can assist in the
patient's supervised withdrawal from opioids. As a partner organization
in two clinical mentoring and education initiatives funded by SAMHSA
(Physicians Clinical Support System-Buprenorphine and the Prescribers'
Clinical Support System- Opioid Therapies), APA is advancing clinical
expertise in this area. APA has produced a series of webinars focused
on the use of opioid therapies for treatment of opioid dependence and
the safe use of opioids in the treatment of chronic pain. These free
webinars are available for psychiatrists, other physicians, residents,
and other interested clinicians at www.pcssb.org/educational-and-
training-resources/special-topics.
Finally, APA supports a 10 percent ($420 million) increase in
clinical services funding for the Indian Health Service in fiscal year
2016 in keeping with the recommendation from the Friends of Indian
Health Coalition. Native American youth have a suicide rate that is 1.7
times higher than the rest of the population of the United States.
Increasing access to services will get needed medical care to at-risk
teenagers before acute psychiatric episodes present.
Congress needs to accelerate and increase its investment in medical
research, the physician workforce, and care for those with mental
health and substance use disorders and their families in order to
continue to improve our Nation's health and economic well-being.
American Psychiatric Association appreciates the opportunity to submit
its statement on fiscal year 2016 funding priorities to the
Subcommittee.
Thank you.
______
Prepared Statement of the American Psychological Association
The American Psychological Association (APA) is the largest
scientific and professional organization representing psychology in the
U.S.: its membership includes nearly 130,000 researchers, educators,
clinicians, consultants and students. APA works to advance the
creation, communication and application of psychological knowledge to
benefit society and improve people's lives. Many programs in the Labor-
HHS-Education bill impact science, education, and the populations
served by clinical psychologists.
National Institutes of Health.--Sub-inflationary spending increases
have eroded NIH's purchasing power and left many innovative research
projects unfunded during the last 10 years. As a member of the Ad Hoc
Group for Medical Research, APA recommends that NIH receive at least
$32 billion in fiscal year 2016 as the next step toward a multi-year
increase in our Nation's investment in health research. APA also urges
Congress and the Administration to work in a bipartisan manner to end
sequestration and the threatened cuts to health research that squander
invaluable scientific opportunities, discourage young scientists,
threaten or slow improvements in our Nation's health, and jeopardize
our economic future.
Psychological scientists are supported by research grants or
training programs in almost all of NIH's 27 institutes and centers.
They are working with animal models or human participants to improve
diagnosis and treatment of Alzheimer's disease and diabetes, to
understand the mechanisms underlying adoption of healthy behaviors, and
to help prevent transmission of HIV and unhealthy behaviors such as
substance abuse. Behavioral research is critical to NIH's mission: the
Institute of Medicine recently reaffirmed that over 50 percent of
premature mortality in the U.S. is due to behaviors such as smoking,
sedentary lifestyle, and alcohol and other drug consumption.
APA is a strong supporter of the OppNet initiative, which has
stimulated over $71.5 million worth of basic behavioral and social
sciences research in 167 projects that might not have otherwise been
supported. The 5-year funding allotment for the initiative ended in
fiscal year 2014. APA urges the Committee to examine the NIH's
evaluation of the program when it is completed, and to encourage NIH
not only to support the now-voluntary program but to seed new
collaborative efforts to support basic behavioral and social science
research that may be applied to advance the missions of many of the
different NIH institutes.
APA endorses the National Institute of Child Development's
continued focus on basic and applied research to advance our
understanding of attachment in mother-infant relationships and its
impact on development. Early life experiences can have profound effects
on a range of behavioral and health outcomes later in life, including
mental health outcomes, but often require specific experimental
controls to pinpoint the impacts of various factors. NICHD supports
human and animal studies identifying and describing the complex
interaction of behavioral, social, environmental, and genetic factors
on health outcomes with the ultimate goal of improved understanding of
and interventions for mental illnesses such as depression, addiction,
and autism.
Because there remains a disturbing paucity of scientific evidence
about the effects of sporadic vs. regular use of marijuana, alcohol,
nicotine and other substances on the developing brain, APA strongly
supports the launch of the Adolescent Behavioral and Cognitive
Development (ABCD) study under the auspices of NIH's Collaborative
Research on Addictions (CRAN) initiative. Unique in its scope and
duration, the ABCD will recruit 10,000 youth before they begin using
alcohol, marijuana, nicotine and other drugs, and follow them over 10
years into early adulthood to assess how substance use affects the
trajectory of the developing brain. The ABCD study design will use
advanced brain imaging as well as psychological and behavioral research
tools to evaluate brain structure and function and track substance use,
academic achievement, IQ, cognitive skills, and mental health over
time.
Centers for Disease Control and Prevention.--As a member of the CDC
Coalition, APA supports an appropriation of at least $7.8 billion for
core programs in fiscal year 2016. APA strongly supports the
President's request for increased funding for the National Injury
Prevention and Control Center, including $25 million for the National
Violent Death Reporting System, to allow for its expansion to all 50
States and DC, and $10 million research into the causes and prevention
of gun violence. As a member of the Friends of the National Center for
Health Statistics, APA recommends a program level of $172 million for
fiscal year 2016--$160 million in budget authority and $12 million in
mandatory Prevention and Public Health Fund obligations.
The greatest number of new HIV infections in this country are among
young people under 25 and specifically among Black young men who have
sex with men (MSM). APA encourages the Committee to maintain the
President's $6 million increase for the Division of HIV/AIDS Prevention
(DHAP) to expand youth HIV prevention efforts in schools and non-school
settings and ensure coordination of these efforts within the agency.
Substance Abuse and Mental Health Services Administration--APA strongly
supports:
--The National Child Traumatic Stress Network (NCTSN) program. APA
recommends increased support for the Network's efforts on
behalf of the recovery of children, families, and communities
affected by physical and sexual abuse, school and community
violence, natural disasters, sudden death of a loved one, war's
impact on military families, and other trauma.
--Garrett Lee Smith Memorial Act programs--Campus Suicide Prevention,
State and Tribal Youth Suicide Prevention and the Suicide
Prevention Resource Center. These effective national programs
help meet the mental and behavioral health needs of youth and
young adults through access to prevention, education, and
outreach services to reduce suicide risk in these populations.
First authorized in 2004, the Garrett Lee Smith Memorial Act
has supported 370 youth suicide prevention grants in 50 States,
46 Tribes or Tribal organizations, and 175 institutions of
higher education.
--Minority Fellowship Program--APA remains concerned that while
minorities represent 30 percent of the U.S. population and are
projected to increase to 40 percent by 2025, only 23 percent of
recent doctorates in psychology, social work and nursing were
awarded to minorities. In addition, disparities in research on
minority mental health continues to be a challenge for the
mental health workforce. We encourage the Committee to support
level funding of the Minority Fellowship Program as requested
in the fiscal year 2016 budget proposal. Maintaining the
current funding level will assist in growing the pool of
culturally competent mental health professionals while
expanding areas of research into minority mental health.
--Mental Health Care Provider Education in HIV/AIDS Program in CMHS-
Continuing education for mental health providers in these
clinical issues remains a high priority. APA urges Congress to
maintain level funding in CMHS for the training of
psychologists, social workers, and psychiatrists in vital
substance abuse and mental health services to people with HIV/
AIDS.
--SAMHSA's Safe Schools/Healthy Students program that expands access
to mental and behavioral health services in schools and reduces
violence through prevention and early intervention supports.
Health Resources and Services Administration.--APA strongly
recommends funding services to individuals with perinatal depression.
Postpartum depression (PPD) and perinatal depression are commonly
undiagnosed conditions associated with childbirth. In the U.S.,
approximately one in five women suffers from PPD each year. Under the
current USPSTF guidelines, depression screening is available as an
Essential Health Benefit to all non-pregnant adults, yet excludes the
vulnerable population of pregnant women. APA supports funding for PPD
research and treatment under Section 512 of the Social Security Act, to
incorporate screening and linkages to behavioral health treatment for
women suffering from this condition. APA encourages the Committee to
support incorporation of PPD screening into the Title V programs
administered by HRSA as well as Healthy Start. APA also encourages the
Committee to urge the Secretary to prioritize the issue of PPD by
raising awareness, expanding research, and establishing grants for the
operation and coordination of cost-effective services to afflicted
women and their families.
APA recommends continued investments in the mental and behavioral
health workforce, including $9.9 million for the Graduate Psychology
Education program to increase the number of health service
psychologists (including doctoral-level clinical, counseling, and
school psychologists) trained to provide integrated services to high-
need underserved populations in both urban and rural communities. This
program supports the training of doctoral psychology students, interns
and postdoctoral residents with other health professionals while they
provide supervised mental and behavioral health services to underserved
and vulnerable populations, including: children, older adults, veterans
and their families, individuals with chronic illnesses, and victims of
abuse and trauma. In 2013-2014 alone, the GPE program supported the
training of over 2,500 graduate psychology students. APA encourages
HRSA to build on recent efforts to expand training to increase mental
and behavioral health services for returning service members, veterans
and their families, with a strong emphasis on veterans reintegrating
into rural civilian communities. Recognizing the growing need for
highly trained mental and behavioral health professionals to deliver
evidence-based services to the rapidly aging population, APA encourages
HRSA to invest in geropsychology training programs and to help
integrate health service psychology trainees at federally Qualified
Health Centers.
HHS programs on aging.--Given that approximately 20-25 percent of
older adults have a mental or behavioral health problem, and older
white males (age 85 and over) currently have the highest rates of
suicide of any group in the U.S. APA supports an expanded effort to
address the mental and behavioral health needs of older adults
including implementation of the mental and behavioral health provisions
in the Older Americans Act Amendments of 2006, grants to States for the
delivery of mental health screening and treatment services for older
individuals and programs to increase public awareness and reduce the
stigma associated with mental disorders in older individuals.
APA also recommends continued support of the HHS's Lifespan Respite
Program. Respite care can provide family caregivers with relief
necessary to maintain their own health, bolster family stability and
well-being, and avoid or delay more costly nursing home or foster care
placements.
Department of Education.--APA supports strengthening our Federal
investment in gifted and talented education and encourages Congress to
fund the Javits Gifted and Talented Education Program in fiscal year
2016, funded last year at $10 million.
During this time of far reaching change in education, never has the
need been greater for effective policies and practices based upon sound
research. As a member of the Friends of the Institute of Education
Sciences, APA urges you to build upon the President's request of $675.8
million and restore, at a minimum, $11.2 million to the Regional
Education Laboratories program and $16.6 million to the National Center
for Special Education Research, matching the 2008 funding level. This
would provide a total of $703.6 million for the education sciences in
fiscal year 2016. This would support critical investments to provide
evidence-based information on effective educational practices to
parents, teachers and schools, and new research to fill gaps in
knowledge.
Thank you for the opportunity to submit testimony for the record in
support of critical program areas funded by the Labor-Health and Human
Services-Education appropriations bill.
______
Prepared Statement of the American Public Health Association
The American Public Health Association 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 $7.8 billion and the Health
Resources and Services Administration at $7.48 billion in fiscal year
2016. We urge you to take our recommendations into consideration as you
move forward with writing the fiscal year 2016 Labor-HHS-Education
Appropriations bill.
centers for disease control and prevention
APHA believes Congress should support CDC as an agency, not just
the individual programs that it funds. Given the challenges and burdens
of chronic disease and disability, public health emergencies, new and
reemerging infectious diseases and other unmet public health needs, we
urge a funding level of $7.8 billion for CDC's programs in fiscal year
2016. We are pleased President Obama's fiscal year 2016 budget request
would increase CDC's program level by $141 million over fiscal year
2015. The president's budget provides additional funding for several
important new and existing programs and initiatives such as combating
antibiotic resistance, preventing prescription drug overdose, viral
hepatitis, the National Healthcare Safety Network, domestic HIV/AIDS,
global disease prevention, violence prevention and surveillance,
climate change and other important programs. Unfortunately, the
president's budget also cuts or completely eliminates other important
programs such as the REACH program, the Preventive Health and Health
Services Block Grant, cancer prevention and control, immunizations,
environmental health tracking and others. These cuts will reduce the
ability of CDC and its State and local grantees to investigate and
respond to public health emergencies, ensure adequate immunization
rates and track environmental hazards and we urge you to restore this
important funding. We are pleased that the president's budget would
fully allocate the Prevention and Public Health Fund for public health
and prevention activities. In fiscal years 2014 and 2015, Congress
fully allocated the fund in both omnibus spending bills and we urge you
to once again ensure the fund is fully allocated for public health
programs to reduce chronic diseases and help restrain the rate of
growth in private and public healthcare costs.
By translating research findings into effective intervention
efforts, CDC is a critical source of funding for many of our State and
local programs that aim to improve the health of communities. Perhaps
more importantly, Federal funding through CDC provides the foundation
for our State and local public health departments, supporting a trained
workforce, laboratory capacity and public health education
communications systems. 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 in order for our Nation
to meet future challenges. Given the challenges of terrorism and
disaster preparedness, and our many unmet public health needs and
missed prevention opportunities we urge you to provide adequate funding
for State and local capacity grants. Unfortunately, this is not a
threat that is going away.
CDC serves as the command center for the Nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the prevention and control of Ebola in West Africa and
detecting and responding to cases in the U.S., to monitoring and
investigating the ongoing multi-State measles outbreak to pandemic flu
preparedness, 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 chronic diseases such as heart disease,
stroke, cancer, diabetes and arthritis that continue to be the leading
causes of death and disability in the United States. These diseases,
many of which are preventable, are also among the most costly to our
health system. The center provides critical funding for State programs
to prevent chronic disease, conducts surveillance to collect data on
disease prevalence, monitors intervention efforts and translates
scientific findings into public health practice in our communities. We
urge you to ensure these programs are adequately funded.
The National Center for Environmental Health works to protect
public health by helping to control asthma, protecting our communities
from threats associated with natural disasters and climate change and
reducing exposure to lead and other environmental hazards. To ensure it
can carry out these vital programs, we ask you to support adequate
funding for NCEH. We urge you to support the president's request for
increased funding for the Climate and Health Program and to restore the
proposed cuts to the Environmental and Health Outcome Tracking Network.
Prescription drug overdose is an ongoing public health problem in
the U.S. killing more than 145,000 over the past decade. We urge you to
support the president's request for increased funding that would allow
all 50 States to participate in the PDO Prevention for States program
to undertake efforts to prevent and reduce prescription drug and heroin
overdose deaths.
The development of antimicrobial resistance is occurring at an
alarming rate and far outpacing the struggling research and development
of new antibiotics. We urge you to support the president's request for
the CDC Antibiotic Resistance Initiative which would build prevention
programs in all 50 States and 10 large cities, utilizing evidence-based
approaches to stop the spread of drug-resistant bacteria and preserve
the effectiveness of existing antibiotics. The initiative also supports
a new network of regional labs to improve tracking of and response to
outbreaks of serious and potentially deadly bacteria.
health resources and services administration
HRSA operates programs in every State and U.S. territory and is a
national leader in improving the health of Americans through the
delivery of quality health services and supporting a well-prepared
workforce of sufficient size. The agency serves the health needs of
people who are medically vulnerable, low-income and geographically
isolated. The Nation faces a shortage of health professionals and
continues to experience an ever growing, aging and increasingly diverse
population, alongside health professionals that are nearing retirement
age. We are deeply concerned that since fiscal year 2010, HRSA's
discretionary budget authority has been cut by 18 percent in nominal
dollars and 24 percent when adjusted for inflation. Funding for HRSA is
far too low to address the present health needs of the U.S. and keeping
austerity measures in place will threaten the agency's ability to
adequately respond to the growing and changing health demands. To
respond to the needs of our Nation, APHA recommends restoring funding
to the fiscal year 2010 level of $7.48 billion for discretionary HRSA
programs in fiscal year 2016.
HRSA programs have a strong history of providing quality care to
keep people healthy and improve the health of those living outside of
the economic and medical mainstream. HRSA has contributed to the
decrease in infant mortality rate, a widely used indicator of the
Nation's health. HIV/AIDS programs administered by HRSA provide access
to regular care and ensure adherence to antiretroviral treatment for
people living with HIV, which reduces HIV transmission by 96 percent
and greatly contributes to the prevention of new HIV infections. The
Title X Family Planning Program has greatly contributed to decreasing
unintended pregnancy--helping to prevent an estimated 870,000
unintended pregnancies in 2013. A committed investment from Congress is
required to continue achieving the health improvements HRSA has made
and to pave the way for new achievements.
Our recommendation is based on the need to continue improving the
health of Americans by supporting critical HRSA programs, including:
--Health Workforce supports the education and training of a broad
range of health professionals. With a focus 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
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 coordinated care that is effective and
efficient.
--Primary Care more than 9,000 health center sites in every State and
U.S. territory, improving access to care for more than 21
million patients in geographically isolated and economically
distressed communities. Close to half of these health centers
serve rural populations. In addition, health centers target
populations with special needs, including migrant and seasonal
farm workers, homeless individuals and families and those
living in public housing.
--Maternal and Child Health including the 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 for more
than 42 million women and children, including children with
special healthcare needs.
--HIV/AIDS provides assistance to States and communities most
severely affected by HIV/AIDS. The programs deliver
comprehensive care, prescription drug assistance and support
services for about half of the total population--1.2 million
people--living with HIV/AIDS in the U.S. 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.
--Family Planning Title X services ensure access to a broad range of
reproductive, sexual and related preventive healthcare for more
than 4.5 million low-income women, men and adolescents. This
program helps improve maternal and child health outcomes,
promotes healthy families and reduce unintended pregnancies,
infertility and related morbidity.
--Rural Health improves access to care for the nearly 50 million
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.
conclusion
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 and continued austerity
measures that cut funding for public health and prevention programs
will not balance our budget and will only lead to increased costs to
our healthcare system. Successes in biomedical research must be
translated into tangible prevention opportunities, screening programs,
lifestyle and behavior changes and other population-based interventions
that are effective and available for everyone. Without a robust and
sustained investment in our public health agencies, we will fail to
meet the mounting health challenges facing our Nation.
[This statement was submitted by Georges C. Benjamin, MD, Executive
Director, American Public Health Association.]
______
Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) recommends that
Congress approve the Administration's fiscal year 2016 proposed budget
for the Centers for Disease Control and Prevention (CDC). The $7
billion request increases the fiscal year 2015 level by $110 million to
strengthen crucial capabilities of the Nation's principal health
protection Agency. The ASM urges Congress to support CDC's unique
surveillance and prevention networks, medical R&D activities and rapid
response preparedness. The fiscal year 2016 budget will help sustain
CDC field operations and laboratories, as well as the Agency's
contributions to national and international health initiatives like the
Administration's new National Strategy for Combating Antibiotic
Resistant Bacteria (CARB) and the international push to eradicate
polio.
protecting people from infectious diseases
Microbial pathogens accounted for seven of CDC's ten most important
public health challenges in 2014: the Ebola epidemic, antibiotic
resistance and healthcare associated infections, a national outbreak of
enterovirus D68 (EV-D68) in children, MERS-CoV (Middle East Respiratory
Syndrome), the HIV/AIDS pandemic and the global battle against polio.
To combat the infectious diseases that persistently threaten public
health, a large portion of the fiscal year 2016 CDC budget ($2.6
billion) is distributed among three CDC national centers: Immunization
and Respiratory Diseases (NCIRD, $748 million); Emerging and Zoonotic
Infectious Diseases (NCEZID, $699 million) and HIV/AIDS, Viral
Hepatitis, STD, and TB Prevention (NCHHSTP, $1.2 billion). The budget
also increases funding for several CDC programs that protect against
both global and domestic threats: the Strategic National Stockpile,
Global Public Health Capacity, Polio Eradication and the Select Agent
Program.
The 2015 priority areas targeted by NCEZID illustrate the depth and
breadth of the agency's strategy against diverse infectious threats:
detect, prevent and control antibiotic resistance in support of the
national CARB initiative; continue actions against Ebola in West
Africa; eliminate healthcare associated infections (HAIs); update
foodborne illness surveillance systems and continue expanding the CDC's
Advanced Molecular Detection (AMD) program to compile a large catalog
of pathogens' genomic fingerprints.
Last year, NCEZID led more than 37 outbreak investigations and
awarded approximately $134.2 million to health departments across the
Nation. Nearly 300 NCEZID personnel have been deployed to West Africa
since early spring 2014, assisting the fight against Ebola with
surveillance, contact tracing, data management, lab testing and health
education. NCEZID staff also worked the CDC Emergency Operations Center
in Atlanta to provide Ebola logistics, technical expertise,
communications and more.
The ASM supports the fiscal year 2016 budget increase of $264
million for the Antibiotic Resistance Solutions Initiative, CDC's
contribution to the new interagency CARB strategy. International and
U.S. health agencies are increasingly alarmed by spreading drug
resistance among pathogens and by the shortages of new antimicrobials
in development. This is a challenge to public health that the U.S. must
neither ignore nor fail to overcome. The CDC priority areas include
expanded disease tracking with additional local partners, improved drug
prescribing in healthcare settings and studies on how antibiotics
affect the human microbiome and its ability to protect the body. The
Antibiotic Resistance initiative anticipates significant 5 year
reductions in multiple targeted threats, like hospital onset
methicillin resistant Staphylococcus aureus (MRSA) and carbapenem
resistant Enterobacteriaceae (CRE).
The ASM supports the fiscal year 2016 budget request of $748
million to support CDC immunization programs, including ongoing
influenza planning and response. The less than expected protection from
this year's seasonal influenza vaccine, due to viral genetic shift post
vaccine design, shows the complexities of vaccine R&D and the
importance of a consistently excellent CDC vaccine program. As a
prevention tool, immunization has been the principal strategy in some
of public health's most dramatic successes. In the United States,
vaccines were instrumental in stopping once deadly outbreaks of killers
like diphtheria, polio and smallpox. CDC currently recommends
vaccination to prevent 17 diseases across a lifespan. Staff routinely
design vaccination education campaigns, collaborate with local
officials, and update immunization protocols.
The current measles outbreak is just the latest reminder of how
critical immunizations are to preserving public health, particularly
since children under 12 months are too young to be vaccinated and thus
highly vulnerable. In 1994, CDC launched the Vaccines for Children
program (VFC), responding to that year's measles resurgence causing
tens of thousands of cases. A 2014 CDC report estimated that
vaccination of children born between 1994 and 2013 ultimately will
prevent 322 million illnesses, more than 21 million hospitalizations,
and 732,000 deaths, saving nearly $1.4 trillion in estimated societal
costs. CDC also is the scientific lead in global prevention efforts
that include vaccines as key cost effective strategies, the global
eradication of polio, for example, could save an estimated $50 billion.
Another CDC surveillance report last August concluded that annual
U.S. infant vaccination rates had increased or remained stable for all
routinely recommended childhood vaccines, over 90 percent for measles,
mumps and rubella (MMR), poliovirus, hepatitis B and varicella (with an
increase for rotavirus, from 69 percent in 2012 to 73 percent in 2013).
CDC warned, however, that vaccination coverage varied by State and
community, leaving some areas vulnerable. Another 2014 report, released
prior to the most recent measles outbreak, noted that U.S. measles
cases in January--May were the largest number in the first 5 months of
any year since 1994, nearly all associated with international travel by
unvaccinated people.
Results from programs like those against HIV/AIDS and healthcare
associated infections point to both progress made and opportunities to
improve. A cross section of these statistics exposes CDC's enormous
responsibility, for example:
--An estimated 3 million Americans are infected with hepatitis C,
plus another 1.4 million with hepatitis B, but at least half do
not know they are infected. New hepatitis C infections, which
frequently lead to fatal complications, increased by 75 percent
between 2010 and 2012, mainly among young people.
--One in 25 hospitalized patients develops healthcare associated
infections, too often caused by drug resistant bacteria.
--Each year, about 80,000 refugees and 500,000 immigrants arrive from
around the world, while infectious diseases continue to
devastate the world's populations.
--Despite vaccine availability, there were nearly 29,000 reported
U.S. cases of pertussis (whooping cough) in 2014.
--Seventy percent of the 1.2 million Americans with HIV do not have
the virus under control, despite available therapeutics that
improve outcomes and greatly reduce the likelihood of
transmission (based on 2013 figures).
More than 250 pathogens and toxins are known to cause foodborne
illness, accounting for an estimated 48 million U.S. cases each year.
In 2014, the agency's annual report on its food safety efforts showed
that Salmonella infections decreased by about 9 percent in 2013
compared with the previous 3 years, but campylobacter infections had
risen 13 percent since 2008. About 20 million Americans still get sick
from norovirus each year. Salmonella infections cause another 1.2
million illnesses, with the most deaths of any foodborne bacteria. More
disturbing are the multi-drug resistant Salmonella types now causing
about 100,000 of those cases.
responding to public health threats
In January, CDC's yearly update on the Nation's public health
preparedness noted that the agency's Office of Public Health
Preparedness and Response processes more than 20,000 calls annually
from public health agencies, clinicians and researchers, and the
public. Agency experts investigate hundreds of disease reports each
year; in the last 2 years, the agency deployed staff to more than 750
sites to examine health threats. In 2014, outbreak investigations
included measles linked to a California amusement park; Listeria
monocytogenes contaminated cheese, sprouts, and caramel apples; and
cases of the intestinal illness cyclosporiasis in at least 20 States,
some linked to cilantro. Last July, when the first locally acquired
case of chikungunya fever was reported in Florida, CDC had already been
actively preparing for its arrival since 2006.
To accommodate this massive workload, CDC partners with U.S. and
international health agencies and distributes grants to strengthen
community based responses. For example, CDC funds are allocated to
local health departments through the Epidemiology and Laboratory
Capacity for Infectious Diseases Cooperative Agreement ($97.2 million
last year to all States, six largest local health departments and U.S.
territories) and the Emerging Infections Program ($37 million to 10
State departments). In November, it added $2.7 million in personal
protective equipment to the Strategic National Stockpile, for rapid
deployment response kits ready to send to hospitals with Ebola
patients.
To sustain CDC's high quality technical capability, the fiscal year
2016 budget request includes increased support for laboratory safety.
In 2014, CDC reviewed its laboratory practices and policies in response
to several incidents involving pathogens in Agency laboratories. As a
result, changes are underway, including more stringent general
enforcement of laboratory safety and quality protocols. Specific
recommendations to improve personnel training for fiscal year 2016
include hands on training and expanded distance learning.
cdc's advanced molecular detection program
Leveraging cutting edge technologies, CDC began its Advanced
Molecular Detection (AMD) program with an initial investment in fiscal
year 2014. It combines expertise in bioinformatics, epidemiology and
genetic sequencing to boost health departments' speed and accuracy in
identifying pathogens. AMD projects are underway at CDC facilities, as
well as State and local partner laboratories. They are exploring AMD
utility for specific diseases or pathogens that include anthrax,
brucellosis, bunyaviruses, malaria, filovirus, influenza, gonorrhea,
legionellosis, Listeria, melioidosis, and meningococcal disease.
AMD projects focused on healthcare associated infections are
investigating how specific genes in pathogens change over time,
initially for the two high threat bacteria Clostridium difficile and
carbapenem resistant Enterobacteriaceae. AMD data will also be posted
to CDC's online database, MicrobeNet, for use by other researchers and
health departments to better identify disease outbreaks, track new and
emerging pathogens, and find new ways to prevent illness. Recent
examples of AMD enabled research are:
--Identified two new human pathogens from ticks; the Bourbon virus
and the Heartland virus. AMD sequencing tools confirmed the two
viruses were different.
--Detected enterovirus D68 (EV-D68) in children with severe
respiratory illness hospitalized in two States in August 2014,
and subsequently recognized the virus causing infections in
almost every State; AMD enabled sequencing of the viral genome,
contributing to development of a ``real time'' laboratory test.
--Produced the first whole genomic sequence of Liberian Ebola virus
within 72 hours of sample collection from two American
patients. The data showed the 2014 virus is 97 percent similar
to the Ebola virus that first emerged in 1976.
--Utilized whole genome sequencing to match Salmonella in patient
samples with that in a peanut butter production plant, quickly
initiating a food recall after only four cases of foodborne
illness (each case in a different State).
It is impossible to overstate how crucial CDC activities are to
protect the health of all Americans and many millions living in other
nations. The ASM strongly recommends that Congress increase the CDC's
fiscal year 2016 budget.
______
Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) welcomes the fiscal
year 2016 budget request of $31.3 billion for the National Institutes
of Health (NIH) as a first step to increase NIH funding which has been
flat since 2003, with a loss of 25 percent in purchasing power. Much of
the proposed increased funding would be allocated to addressing
specific public health issues that require biomedical expertise and
research capabilities, including antimicrobial resistance, precision
medicine and the human brain initiative.
In view of the ongoing and emerging health problems confronting the
Nation and other countries worldwide, and the unprecedented scientific
opportunities on the horizon, we recommend that the budget for NIH be
increased to at least $32 billion in fiscal year 2016. This level of
funding would enable NIH to take advantage of the many undifferentiated
research project grants that lead to scientific discoveries and
contribute to medical innovation. There is an urgent need to increase
the NIH budget in view of the decade long attrition in Federal funding
for biomedical research and the real danger of losing significant
numbers of the current and next generation of scientists in the United
States. We look forward to working with Congress to enhance NIH's
ability to support cutting edge research and training of the scientific
workforce.
investing in biomedical research and spurring innovation in science
For over a century, NIH funding has led to new knowledge and
advances in medicine. Each year, NIH distributes much of its budget
extramurally through more than 50,000 competitive grants, supporting
300,000 plus researchers at more than 2,500 universities, medical
schools and other institutions. Intramural programs employ another
6,000 scientists at NIH's own laboratories.
NIH is the Nation's leader in funding biomedical research. Its 27
institutes and centers support studies focused on particular diseases
and conditions or on targeted research areas. Last year, NIH reported
funding for 235 research areas, conditions and disease categories.
Sixty percent of the fiscal year 2016 NIH budget will be distributed
extramurally as research project grants and 19 percent through R&D
contracts. Intramural research at NIH's own laboratories accounts for
another 12 percent of the proposed funding.
The ASM stresses the importance of sustaining adequate NIH funding
for long term research efforts. Rising biomedical R&D price indices and
flat budgets over the last decade have undercut NIH spending
capabilities. This erosion in Federal support has had noticeable
negative impacts on biomedical research in the United States.
A clear example is the shrinking number of submitted NIH grant
proposals that are successfully funded: From 1 in 3 for all types of
grants at the start of the 21st century to 1 in 5 by 2014. Decreasing
success rates in part reflect rising numbers of submitted requests, but
more importantly they are evidence of missed scientific opportunities.
In 2014, NIH reviewed more than 51,000 applications for research
projects grants (RPGs), selecting 9,241 for funding (an 18 percent
success rate, slightly above 16.8 percent the previous year). The
Administration's fiscal year 2016 budget would help boost the number of
new and competing research grants by approximately 1,200.
The United States has been steadily reducing its biomedical R&D
spending while other countries are accelerating their investments.
During 2007-2012, the U.S. share of global expenditures slipped from 51
to 45 percent (once 80 percent). The high returns on biomedical R&D
investment in improved public health and in science and technology
innovation and marketplace economics are well documented. Examples are
victories over diseases like smallpox and polio, or the numerous NIH
funded recipients of the prestigious Nobel and Lasker awards. Another
is Federal investment in the Human Genome Project, which has thus far
yielded an estimated 178-fold return of nearly $1 trillion in economic
growth.
science discoveries to protect public health
Recent outbreaks of Ebola in West Africa and measles in the United
States are compelling reminders of the importance of NIH research to
addressing health threats. The NIH mission is to seek fundamental
knowledge about the nature and behavior of living systems and to apply
that knowledge to enhance health, lengthen life and reduce illness and
disability.
Past Federal investments have made NIH the world leader in
biomedical research leading to cures, preventives and therapies,
whether against old nemeses like tuberculosis and malaria or emerging
viral threats like the recent Ebola epidemic or highly virulent
influenza strains. ASM supports the funding within the fiscal year 2016
budget for the National Institute of Allergy and Infectious Diseases
(NIAID) and the National Institute of General Medical Sciences (NIGMS),
both of which have significantly advanced medical microbiology and
related fields like genetics, systems biology and bioinformatics. In
the fiscal year 2016 proposal, NIAID would receive a modest 4.5 percent
increase over fiscal year 2015 levels, while NIGMS receives 2.6
percent.
NIAID funded studies regularly produce new knowledge and products
like vaccines, diagnostic tests, therapeutics and other technologies
that safeguard human health and stimulate economic development. Over
the decades, NIH supported programs have literally changed the
discussion surrounding a disease or condition. A striking example is
HIV/AIDS. Once an early death sentence, HIV diagnosis has morphed into
chronic illness with science based hope of possible cures and vaccines.
NIAID efforts have contributed immeasurably to promising therapies for
HIV infected newborns, successes with early anti HIV drug regimens and
advances in vaccine development.
Evolving research emphasis centers on other infectious diseases as
medical science advances, for example, influenza, which persists as a
heavy burden on the U.S. healthcare system. The 2014 seasonal vaccine's
inability to provide effective protection against an important virus
strain, due to viral genetic drift after the current vaccine was
designed is a strong argument for a universal influenza vaccine, an
ultimate goal of NIAID vaccine projects. Scientists recently reported
discovery of a new class of antibodies that can neutralize a wide range
of influenza A viruses, with potential as a broadly effective, long
lasting vaccine. Studies are underway on several other NIAID supported
universal vaccine candidates.
fighting antimicrobial resistant infections
The ASM supports global health initiatives, such as the
Administration's newly launched National Strategy for Combating
Antibiotic Resistant Bacteria. The multi-agency offensive against
antimicrobial resistant (AR) pathogens receives targeted funding in the
proposed fiscal year 2016 budget, nearly doubling the amount of Federal
AR support to more than $1.2 billion. NIH would receive additional
funding for its exploration of new drugs, rapid diagnostics, and
biological mechanisms of microbial drug resistance.
Microbial pathogens that acquire resistance to drugs have emerged
as one of today's most serious public health challenges. Each year
antibiotic resistant infections in this country cause at least two
million illnesses and an estimated 23,000 deaths. Associated economic
losses total at least $20 billion annually in excess direct healthcare
and up to $35 billion in lost productivity. The fiscal year 2016 budget
would increase NIAID funding for AR research by $100 million, to expand
its clinical trial capacity to evaluate new antibacterial products,
develop a national genome sequence database of AR bacteria and
underwrite an original competition to incentivize development of
diagnostic devices.
NIAID has battled emerging drug resistance for years, aware that
naturally evolving resistance will always occur. In 2014, an updated
report on its AR related programs refocused efforts toward specific
challenges like cataloguing entire genomes of specific microbes,
developing vaccines against resistant Staphylococcus aureus and
Neisseria gonorrhoeae, using healthy bacteria in the human body to
combat infection and more. The AR portfolio also includes the search
for new broad spectrum therapeutics, more judicious medical and
agricultural use of antibiotics, surveillance of spreading AR patterns
and research on pathogen biology to determine the mechanisms that lead
to resistance.
Over the past year, NIAID solicited new grant proposals from
industry to develop rapid diagnostics for five principal causes of
resistant infections in hospital settings (Klebsiella pneumoniae,
Acinetobacter baumannii, Pseudomonas aeruginosa, Enterobacter species,
and pathogenic Escherichia coli). It began an early stage clinical
trial for an oral antibiotic to treat infections of Clostridium
difficile, an increasingly drug resistant pathogen responsible for
about 250,000 U.S. hospitalizations and at least 14,000 deaths each
year.
Relentless appearance of resistant pathogens reinforce how crucial
it is to intensify investigations of novel drug classes and supply a
more robust drug pipeline. NIAID supported scientists recently reported
a new class of antimicrobial drug discovered while screening soil
bacteria. Teixobactin, a toxin produced by the newly identified
proteobacteria species Eleftheria terrae, is the first new antibiotic
in more than 25 years. Excitement over the discovery stems from the
apparent decreased risk of acquired resistance, as well as the
innovative method for growing recalcitrant soil bacteria in the
laboratory.
responding to emerging infectious diseases
When the largest Ebola epidemic in history ignited last year, NIAID
accelerated its ongoing research on Ebola treatments and vaccines. That
response illuminates the NIH capacity to respond quickly to emerging
threats. The ASM applauds NIAID efforts against the Ebola virus and
asks Congress to ensure funding for NIH programs that make possible
this type of scientific agility against infectious threats.
NIAID supports basic and applied research on Ebola that includes
pathogenesis studies using molecular technologies and animal models.
Others are characterizing viral transmission patterns using genomic
sequencing or examining virus host interactions. NIAID staff deployed
to West Africa focused on diagnostics and training local personnel and
collected hundreds of Ebola samples for genomic sequencing. NIAID is
aggressively seeking therapeutics and vaccines that can stop Ebola's
spread, with several candidate drugs in the pipeline and some
undergoing early clinical trials. Three Ebola vaccine candidates are
currently in various stages of NIH clinical testing, one developed
earlier with NIAID funding in partnership with a biotech firm using
chimpanzee virus to deliver an Ebola glycoprotein gene that elicits
patient immunity.
Other emerging infectious diseases in the NIH portfolio include
infections of chikungunya virus and coronavirus MERS-CoV (Middle East
Respiratory Syndrome). In May 2014, when the first U.S. case of MERS
was confirmed, NIH supported research was well underway. Scientists had
identified dozens of compounds that inhibited the MERS virus in the
laboratory, as others established a new monkey model to study the
severe MERS pneumonia. Last September, NIAID reported that animal
studies confirmed dromedary camels as the primary carrier of the virus,
which kills about one third of its human victims. Like MERS, there is
no specific therapeutic or vaccine for mosquito borne chikungunya
virus, first detected in the Western Hemisphere in late 2013. In August
2014, NIAID reported its experimental chikungunya virus vaccine had
induced antibodies in an early human clinical trial, just weeks after
officials had confirmed the first locally acquired cases in the United
States.
The ASM appreciates the opportunity to provide a statement in
support of NIH funding and looks forward to working with Congress to
provide significant, new funding for biomedical research.
______
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 2016
appropriations. The American Society for Nutrition (ASN) respectfully
requests $31.3 billion dollars for the National Institutes of Health
(NIH) and $172 million dollars for the Centers for Disease Control and
Prevention/National Center for Health Statistics (CDC/NCHS), consistent
with the President's budget requests, in fiscal year 2016. ASN is
dedicated to bringing together the world's top researchers to advance
our knowledge and application of nutrition, and has more than 5,000
members working throughout academia, clinical practice, government, and
industry.
National Institutes of Health (NIH)
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 makes 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, U.S. death rates from heart disease and stroke have decreased
by more than 60 percent, and the proportion of older adults with
chronic disabilities has dropped by one-third. With additional support
for NIH, additional breakthroughs and discoveries to improve the health
of all Americans will be made possible.
Investment in biomedical research generates new knowledge, improved
health, and leads to innovation and long-term economic growth. A decade
of flat-funding, followed by sequestration cuts, has taken a
significant toll on NIH's ability to support research. Such economic
stagnation is disruptive to training, careers, long-range projects and
ultimately to progress. Increasing the NIH budget to $31.3 billion
dollars would help to restore the funding that was lost to
sequestration and support additional competing research project grants.
ASN recommends $31.3 billion dollars for NIH in fiscal year 2016,
consistent with the President's budget request and asks that Congress
direct the use of some of these funds for both intra- and extramural
human nutrition research. NIH needs sustainable and predictable budget
growth in order 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 (CDC NCHS)
The National Center for Health Statistics, housed within the
Centers for Disease Control and Prevention, is the Nation's principal
health statistics agency. ASN recommends a fiscal year 2016 funding
level of $172 million dollars for NCHS, consistent with the President's
budget request, 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. This request would
provide $160 million in budget authority and $12 million in mandatory
Prevention and Public Health Fund.
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 the area of health
and nutrition, including food safety, food labeling, food assistance,
military rations and dietary guidance. For example, NHANES data are
used to determine funding levels for programs such as the Supplemental
Nutrition Assistance Program (SNAP) and the Women, Infants, and
Children (WIC) clinics, which provide nourishment to low-income women
and children.
To continue support for the agency and its important mission, ASN
recommends an fiscal year 2016 funding level of $172 million for NCHS.
Sustained funding for NCHS can help to ensure uninterrupted collection
of vital health and nutrition statistics, and will help to cover the
costs needed for technology and information security upgrades that are
necessary to replace aging survey infrastructure.
Thank you for the opportunity to submit testimony regarding fiscal
year 2016 appropriations for the National Institutes of Health and the
CDC/National Center for Health Statistics. Please contact John E.
Courtney, Ph.D., Executive Officer, if ASN may provide further
assistance. He can be reached at 9650 Rockville Pike, Bethesda,
Maryland.
[This statement was submitted by Simin Nikbin Meydani, D.V.M.,
Ph.D., President, American Society for Nutrition.]
______
Prepared Statement of the American Society for Pharmacology &
Experimental Therapeutics
The American Society for Pharmacology and Experimental Therapeutics
(ASPET) is pleased to submit written testimony in support of the
National Institutes of Health (NIH) fiscal year 2016 budget. ASPET
recommends a fiscal year 2016 NIH budget of at least $32 billion.
Steady and sustained investment in the NIH is critical to improving
human health, stimulating State and local economies, and improving the
Nation's global competitiveness. We call upon Congress to ensure that
the NIH remains a national priority. ASPET appreciates Congressional
action in providing NIH-needed increases in the fiscal year 2014 and
fiscal year 2015 omnibus appropriations bills. However, these increases
did not restore the purchasing power lost to sequestration in fiscal
year 2013. From 2003-2013, the NIH budget failed to keep pace with
inflation in research costs leading to nearly a 25 percent reduction in
the agency's purchasing power and a 34 percent reduction in the primary
grant mechanism for supporting investigator-initiated research. A
fiscal year 2016 budget of $32 billion would enable the NIH to fund 465
more research grants and help restore the agency's lost purchasing
power that has occurred over the past decade.
Additionally, if funding for the next 10 years is similar to that
of the past decade, the Nation will lose a generation of young
scientists. Increasingly, these individuals, seeing no prospects for
careers in biomedical research, will leave the research enterprise or
look for employment in foreign countries. Not only are jobs
increasingly limited in the academic sector, but the health industry
too is under significant stress. The ``brain drain'' of young
scientific talent jeopardizes the Nation's leadership in biomedical
research. A 2013 survey of ASPET's own graduate students and post-
doctoral researchers revealed that 45 percent of post-doctoral trainees
and 25 percent of graduate students say they are no longer considering
a career in biomedical research due to the restrictive funding
environment; 50 percent of graduate students and 29 percent of post-
doctoral trainees say they are willing to consider leaving the United
States to pursue a career in biomedical research.
A $32 billion budget for the NIH in fiscal year 2016 is an
important start to help restore NIH's biomedical research capacity.
Currently, the NIH only can fund one in six grant applications, the
lowest rate in the agency's history. Many highly innovative proposals
that have important implications for human health go unfunded as a
consequence of limited NIH funding.
A budget of at least $32 billion in fiscal year 2016 will help the
agency manage its research portfolio more effectively without having to
withhold funding for existing grants to researchers throughout the
country. Only through steady, sustained and predictable funding
increases can NIH continue to fund the highest quality biomedical
research to help improve the health of all Americans and continue to
make significant economic impact in many communities across the
country.
There is no substitute for a steady, sustained Federal investment
in biomedical research. Industry, venture capital, and private
philanthropy can supplement some elements of health research but they
cannot replace the investment in basic, fundamental biomedical research
provided by NIH. Neither the private sector nor industry will be able
to fill a void for NIH-funded basic biomedical research. Much of the
research undertaken by industry builds upon the discoveries generated
from NIH-funded projects. The majority of the investment in basic
biomedical research that NIH provides is broad and long-term, providing
a continuous development platform for industry, which would not
typically invest in research that may be of higher risk and require
several years to fully mature. In addition to this long-term view, NIH
also has mechanisms in place to rapidly build upon key technologies and
discoveries that have the ability to have significant impact on the
health and well being of our citizens.
Many of the basic science initiatives supported by NIH have led to
totally unexpected discoveries and insight that have transformed our
mechanistic understanding of and our ability to treat a wide range of
diseases.
Diminished Support for NIH will Negatively Impact Human Health
Additional cuts or limited growth in the NIH budget will further
reduce NIH's purchasing power and accelerate the loss of scientific
opportunities to discover new therapeutic targets. Without a steady,
sustained Federal investment in fundamental biomedical research,
scientific progress will be slower and potentially helpful diagnostic
methods, therapies or cures will not be developed. For example, more
research is needed on Parkinson's disease to help identify the causes
of the disease and help develop better therapies. As another example,
discovery of gene variations in age-related macular degeneration could
result in new screening tests and preventive therapies. More basic
research is needed to focus on new molecular targets to improve
treatment for Alzheimer's disease. As yet another example, diminished
support for NIH will prevent new and ongoing investigations into rare
diseases that the Food and Drug Administration estimates almost 90
percent are serious or life-threatening.
Historically, our past investment in basic biological research has
led to many innovative medicines. The National Research Council
reported that of the 21 drugs with the highest therapeutic impact, only
five were developed without input from the public sector. The
significant past investment in the NIH has provided major gains in our
knowledge of the human genome, resulting in the promise of
pharmacogenomics and a reduction in adverse drug reactions that
currently represent a major worldwide health concern. NIH is the world
leader in efforts to prevent and treat HIV-AIDS. Several completed
human genome sequence analyses have pinpointed disease-causing variants
that have led to improved therapy and cures, but further advances and
improvements in technology will be delayed with diminished NIH funding.
The evolution of patient care into what has been termed ``personalized
medicine'' or precision medicine and its application to a wide range of
clinical disorders requires research to identify and test optimal
diagnostic and therapeutic approaches for each individual. Our past
support for NIH has revealed new frontiers of immunopharmacology and
regenerative medicine which are producing cost savings by reducing in-
patient hospital care for debilitative autoimmune diseases like
rheumatoid arthritis and restoring movement and function through
regenerative interventions. Furthermore, NIH must continue its support
of research to prevent and treat infectious diseases.
Investing in NIH Helps America Compete Economically
A $32 billion budget in fiscal year 2016 will also help the NIH
train the next generation of scientists and provide a platform for
broader workforce development that is so critical to our Nation's
growth. While most NIH trainees follow a career path in research, many
individuals trained in the sciences through NIH support become
educators in high schools and colleges. These individuals also enter
into other areas of technology development and evaluation in the public
and private sectors further enriching the community and accelerating
economic development.
NIH research funding catalyzes private sector growth. More than 83
percent of NIH funding is awarded to over 3,000 universities, medical
schools, teaching hospitals and other research institutions in every
State. One national study by an economic consulting firm found that
Federal (and State) funded research at the Nation's medical schools and
hospitals supported almost 300,000 jobs and added nearly $45 billion to
the U.S. economy. NIH funding also provides the most significant
scientific innovations of the pharmaceutical and biotechnology
industries.
Thus, this investment will help to create jobs and promote economic
growth. A stagnating NIH budget will mean forfeiting future discoveries
and jobs to other countries.
It is a sobering fact that the U.S. share of global research and
development investment from 1999-2009 was only 31 percent, representing
a decline of 18 percent. In contrast, other nations continue to invest
aggressively in science. China has grown its science portfolio with
annual increases to the research and development budget averaging over
20 percent annually since 2000. Russia plans to increase support for
research substantially over the next decade. The European Union,
despite great economic distress among its member nations, has proposed
to increase spending on research and innovation by 45 percent between
2014 and 2020. All of these nations recognize the long-term economic
value of scientific research and prioritize their budgets accordingly.
Conclusion
ASPET appreciates the many competing and important spending
decisions the Subcommittee must make. However, the NIH's contribution
to the Nation's economic well-being and to the health of our citizens
should make it one of the Nation's top priorities. Lawmakers must
replace sequestration in 2016 and beyond with a bipartisan, balanced
approach to deficit reduction so that vital investments can be made in
the best interests of the Nation. With enhanced and sustained funding,
NIH can begin to reverse its decline and help achieve its potential to
address many of the more promising scientific opportunities that
currently challenge medicine and affect healthcare in our country. A
budget of at least $32 billion in fiscal year 2016 will be a good first
step in allowing the agency to begin moving forward to full program
capacity, exploiting more scientific opportunities for investigation,
and increasing investigators' chances of discoveries that prevent,
diagnose and treat disease. NIH should be restored to its place as a
national treasure, one that attracts and retains the best and brightest
to biomedical research and provides hope to millions of individuals
afflicted with illness and disease.
ASPET is a 5,100 member professional society, whose members conduct
basic, translational, and clinical pharmacological research within the
academic, industrial and government sectors. Our members discover and
develop new medicines and therapeutic agents that fight existing and
emerging diseases, as well as increase our knowledge regarding how
therapeutics can be used to improve human health.
______
Prepared Statement of the American Society of Hematology
The American Society of Hematology (ASH) thanks the Subcommittee
for the opportunity to submit written testimony on the fiscal year 2016
Departments of Labor, Health and Human Services, and Education
Appropriations bill.
ASH represents more than 15,000 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.
funding for hematology research: an investment in the nation's health
Over the past 60 years, American biomedical research has led the
world in probing the nature of human disease. This research has led to
new medical treatments, saved innumerable lives, reduced human
suffering, and spawned entire new industries. This research would not
have been possible without support from the National Institutes of
Health (NIH).
Funding for hematology research has been an important component of
this investment in the Nation's health. Most of the research that
produced cures and treatments for hematologic diseases has been funded
by the NIH. 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.
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.
Future Promise
The era of precision medicine has arrived. 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.
Translating these new discoveries and technologies into
personalized patient care offers the possibility of better survival,
less toxicity, disease prevention, improved quality of life, and lower
health-care costs. Yet today, a number of specific and critically
important research questions must be answered to gain the insights that
will launch the field into the next generation of care for hematologic
conditions. A wide variety of blood-related diseases--from malignancies
such as lymphoma and leukemia, to non-malignant diseases including
hemoglobinopathies--continue to be associated with significant
morbidity and mortality and demand attention to reduce their burden and
improve the quality of care worldwide.
sequestration threatens scientific momentum
ASH is particularly concerned about the impact of continued cuts on
biomedical research supported by the NIH. NIH's ability to continue
current research capacity and encourage promising new areas of science
is, and will be, significantly limited. At a time when we should be
investing more in research to save lives, research funding remains in
serious jeopardy. Trials to find new therapies and cures for millions
of Americans with blood cancers, bleeding disorders, clotting problems,
and genetic diseases are just a few of the important projects that
could be delayed unless NIH continues to receive predictable and
sustained funding.
Additionally, perhaps one of the greatest concerns is the obstacle
these continued cuts will present to the next generation of scientists,
who will see training funds slashed and the possibility of sustaining a
career in research diminished. The Society is especially concerned
about the number of scientists who have abandoned research careers;
continued cuts will exacerbate this exodus, forcing researchers to
abandon potentially life-enhancing research.
fiscal year 2016 requests
NIH Funding
ASH appreciates the welcome and much needed funding increase for
the NIH that Congress provided in the fiscal year 2015 Consolidated
Appropriations Act. However, this increase did not give back all of the
funds cut by sequestration in fiscal year 2013 nor did it restore the
purchasing power lost over the past decade. ASH supports the Ad Hoc
Group for Medical Research recommendation that NIH receive at least $32
billion in fiscal year 2016 as the next step toward a multi-year
increase in our Nation's investment in medical research. ASH also urges
Congress and the Administration to work in a bipartisan manner to end
sequestration and the continued cuts to medical research that squander
invaluable scientific opportunities, discourage young scientists,
threaten medical progress and continued improvements in our Nation's
health, and jeopardize our economic future.
Centers for Disease Control and Prevention (CDC) Public Health Response
for Blood Disorders
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. Blood disorders--
such as sickle cell disease, anemia, blood clots, and hemophilia--are a
serious public health problem and affect millions of people each year
in the United States, cutting across the boundaries of age, race, sex,
and socioeconomic status. Men, women, and children of all backgrounds
live with the complications associated with these conditions, many of
which are painful and potentially life-threatening.
CDC is uniquely positioned to reduce the public health burden
resulting from blood disorders by contributing to a better
understanding of these conditions and their complications; ensuring
that prevention programs are developed, implemented, and evaluated;
ensuring that information is accessible to consumers and healthcare
providers; and encouraging action to improve the quality of life for
people living with or affected by these conditions. The Society is
concerned that the Division of Blood Disorders was cut by nearly $6
million in the Consolidated Appropriations Act of 2014 and only
$500,000 was added back to the Division in fiscal year 2015. ASH
respectfully requests that the Committee continue to restore funding
for the Division of Blood Disorders to the fiscal year 2013 levels to
ensure that the programs funded by the Division for hemophilia,
thalassemia, sickle cell disease, and DVT/PE can be maintained. This
funding will allow CDC to improve health outcomes and limit
complications to those who are risk or currently have blood disorders,
by promoting a comprehensive care model; identifying and evaluating
effective prevention strategies; and increasing public and healthcare
provider awareness of bleeding and clotting disorders such as such as
hemophilia and thrombosis, and hemoglobinopathies, including sickle
cell disease and thalassemia.
Additional Activities
In fiscal year 2016, ASH also urges the Subcommittee to recognize
the following activities impacting hematology:
--Importance of Genome Editing and Gene Therapy for the Correction of
Inherited Blood Disorders
Genome editing is currently at the forefront of genetic
engineering. It has led to several transformative advances
thanks to its simplicity, versatility, flexibility and ability
to precisely manipulate cellular genomes and correct mutations.
As an experimental tool, it has tremendous power to help
researchers develop and manipulate experimental models designed
to correct inherited genetic alternations in hematologic
diseases such as sickle cell anemia, thalassemia and
hemophilia. The correction of genetic defects that cause these
disorders would allow for cure, rather than life-long
palliation.
While gene editing represents a highly promising area for
potential treatment of hematologic disorders, several critical
questions still need to be addressed in order to establish
appropriate processes that will guide the safe and effective
transfer of its use into the clinic. NHLBI is encouraged to
further its research efforts in genome editing and gene therapy
by focusing on the following priority areas:
-- Establishing strategies to determine the efficacy, safety, and
toxicity of genome editing techniques. Basic science
research and the development of proper clinical trial
infrastructure is needed to further advance our
understanding of the biology of genome editing. Preclinical
research is essential to help determine the accuracy,
safety and efficiency of this technology in order to help
minimize off-target mutations and to reduce toxicity. Once
the preclinical efficacy of this technology is established,
its transfer into a well-established clinical trial
structure will be critical in helping to understand its
application in humans.
-- Applying genome editing technology to correct hematologic
disorders. Single nucleotide variants that result in
hemoglobinopathies like thalassemias or sickle cell disease
are ideal platforms for initial research programs; however,
studies are still needed to determine which other disorders
are amenable to genome editing correction, whether certain
disorders can be characterized by more complex mutations,
and which gene alterations should be targeted.
--Ensuring Coordination and Collaboration between Federal Agencies
with an Interest in Sickle Cell Disease
Sickle cell disease (SCD) is the most common inherited red blood
cell disorder in the United States, affecting 70,000-100,000
Americans (mostly, but not exclusively, of African ancestry).
SCD causes the production of abnormal hemoglobin, a protein
that attaches to oxygen in the lungs and carries it to all
parts of the body. Healthy red blood cells are flexible so that
they can move through the smallest blood vessels. In sickle
cell anemia, the hemoglobin is abnormal, causing the red blood
cells to be rigid and shaped like a ``C'' or sickle, the shape
from which the disease takes its name. Sickle cells can get
stuck and block blood flow, causing pain and infections.
Complications of sickle cell anemia are a result of sickle
cells blocking blood flow to specific organs, and include
stroke, acute chest syndrome (a condition that lowers the level
of oxygen in the blood), organ damage, other disabilities, and
in some cases premature death.
Although the molecular basis of SCD was established several
decades ago, it has been challenging to translate this
knowledge into the development of novel targeted therapies. New
approaches in managing this disease have improved diagnosis and
supportive care over the last few decades, but many patients
still have severe complications to overcome. The future of care
for SCD patients will be dependent on advanced and highly
targeted approaches to research, discovery, and implementation
of proven and new interventions.
To ensure that individuals with SCD receive state of the art care,
it is important that key stakeholders, including Federal
agencies, work together to invest in SCD-related research and
initiatives that could truly move the field forward with the
hope of curing SCD in the future. A multi-agency approach would
deliver advances faster, more economically, and more
efficiently to patients suffering from this debilitating
disease in the United States and the world. The Department of
Health and Human Services Interagency Working Group on SCD is
essential to ensuring the coordination and collaboration
between Federal agencies with an interest in SCD.
Thank you again for the opportunity to submit testimony. Please
contact Tracy Roades, ASH Legislative Advocacy Manager, if you have any
questions or need further information concerning hematology research or
ASH's fiscal year 2016 requests.
______
Prepared Statement of the American Society of Nephrology
The American Society of Nephrology (ASN) is the world's largest
kidney health professional organization--representing 15,000
scientists, nephrologists, and other kidney health providers--and
committed to advancing research and treatment options for the more than
20 million children, adolescents, and adults with kidney disease in the
United States today. The society requests at least $2.066 billion in
funding for the National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) at the National Institutes of Health (NIH). The
society also requests an additional $150 million per year over 10 years
for NIDDK kidney research above the current funding level.
ASN believes these are crucial and necessary investments for
preventing illness and maintaining fiscal responsibility. Investing in
research to slow the progression of kidney disease and improve
therapies for patients would yield significant saving to Medicare in
the long run.
In 1972, Congress made a commitment to treat all Americans with
kidney failure through the Medicare End-Stage Renal Disease (ESRD)
Program--the only health condition Medicare automatically provides
coverage for regardless of age or disability. At an annual cost of $35
billion--more than NIH's entire $30 billion budget--the ESRD Program
represents nearly 7 percent of Medicare's budget even though ESRD
patients represent less than 1 percent of the Medicare population.
Despite the staggering burden of kidney disease, NIH investments in
kidney research are less than 1 percent of total Medicare costs for
patients with kidney disease ($585 million vs. $80 billion in 2014).
The vast majority of Federal research leading to advances in the
care and treatment of patients with kidney disease is funded by NIDDK.
Examples of critical discoveries arising from NIDDK-funded research are
numerous.
For instance, investigative studies supported by NIDDK led to a
groundbreaking discovery that helps explain racial and ethnic
disparities that increase risks for kidney disease, which can lead to
earlier detection and better treatment. The finding that African
Americans with two variants of the APOL1 gene are likely to progress to
kidney failure faster than other ethnicities paves the way for future
research to unlock better preventive therapies and gene-based cures.
Recent findings from NIDDK's Chronic Renal Insufficiency Cohort
(CRIC) Study are helping uncover why patients with kidney disease are
at greater risker for heart disease, the leading cause of death among
patients with kidney failure. Further research exploring the mechanisms
for this development could lead to new interventions for preventing
heart disease.
Scientists supported by NIDDK have pursued cutting-edge basic,
clinical, and translational research. While ASN fully understands the
difficult economic environment, the society firmly believes that
funding NIDDK is a sound investment to create jobs, support the next
generation of investigators, and ultimately provide quality care that
is less expensive in order to improve the public health of Americans.
Medical research is a major force in the economic health of
communities nationwide: every dollar invested in medical research
generates $2-3 in economic activity. America must continue to
capitalize on previous investments to drive research progress, train
the next generation of scientists, create new jobs, promote economic
growth, and remain the world leader in innovation and discovery--
particularly as other countries increase their investments in
scientific research. Most important, a failure to maintain and
strengthen NIDDK's ability to support the groundbreaking work of
researchers across the country carries a palpable human toll, denying
hope to the millions of patients awaiting the possibility of a
healthier tomorrow.
ASN urges Congress to uphold its longstanding legacy of bipartisan
support for biomedical research. Should you have any questions or wish
to discuss NIDDK or kidney research in more detail, please contact ASN
Senior Policy and Government Affairs Associate Grant Olan at (202) 640-
4657 or [email protected].
about asn
The American Society of Nephrology (ASN) is a 501(c)(3) non-profit,
tax-exempt organization that leads the fight against kidney disease by
educating the society's 15,000 physicians, scientists, and other
healthcare professionals, sharing new knowledge, advancing research,
and advocating the highest quality care for patients. For more
information, visit ASN's Web site at www.asn-online.org.
______
Prepared Statement of the American Society of Plant Biologists
On behalf of the American Society of Plant Biologists (ASPB), we
would like to thank the Subcommittee for its support of the National
Institutes of Health (NIH). ASPB and its members strongly believe that
sustained investments in scientific research will be a critical step
toward economic recovery and job creation in our Nation. ASPB supports
the maximum fiscal year 2016 appropriation for NIH and asks that the
Subcommittee Members encourage increased support for plant-related
research within the agency; 25 percent of our medicines originate from
discoveries related to plant natural products, and such research has
contributed in innumerable ways to improving the lives and health of
Americans and people throughout the world.
ASPB is an organization of some 4,500 professional plant biology
researchers, educators, students, and postdoctoral scientists with
members across the Nation and throughout the world. A strong voice for
the global plant science community, our mission--achieved through work
in the realms of research, education, and public policy--is to promote
the growth and development of plant biology, to encourage and
communicate research in plant biology, and to promote the interests and
growth of plant scientists in general.
plant biology research and america's future
Among many other functions, plants form much of the base of the
food chain upon which all life depends. Importantly, plant research is
also helping make many fundamental contributions in the area of human
health, including that of a sustainable supply and discovery of plant-
derived pharmaceuticals, nutriceuticals, and alternative medicines.
Plant research also contributes to the continued, sustainable,
development of better and more nutritious foods and the understanding
of basic biological principles that underpin improvements in the health
and nutrition of all Americans.
plant biology and the national institutes of health
Plant science and many of our ASPB member research activities have
enormous positive impacts on the NIH mission to pursue ``fundamental
knowledge about the nature and behavior of living systems and the
application of that knowledge to extend healthy life and reduce the
burdens of illness and disability.'' In general, plant research aims to
improve the overall human condition--be it food, nutrition, medicine or
agriculture--and the benefits of plant science research readily extend
across disciplines. In fact, plants are often the ideal model systems
to advance our ``fundamental knowledge about the nature and behavior of
living systems'' as they provide the context of multi-cellularity while
affording ease of genetic manipulation, a lesser regulatory burden, and
maintenance requirements that are less expensive than those required
for the use of animal systems.
Many fundamental biological components and mechanisms (e.g., cell
division, viral and bacterial invasion, polar growth, DNA methylation
and repair, innate immunity signaling and circadian rhythms) are shared
by both plants and animals. For example, a process known as RNA
interference, which has potential application in the treatment of human
disease, was first discovered in plants. Subsequent research eventually
led to two American scientists, Andrew Fire and Craig Mello, earning
the 2006 Nobel Prize in Physiology or Medicine. More recently
scientists engineered a class of proteins called TALENs capable of
precisely editing genomes to potentially correct mutations that lead to
disease. That these therapeutic proteins are derived from others
initially discovered in a plant pathogen exemplifies the application of
plant biology research to improving human health. These important
discoveries again reflect the fact that some of the most important
biological discoveries applicable to human physiology and medicine can
find their origins in plant-related research endeavors.
Health and Nutrition.--Plant biology research is also central to
the application of basic knowledge to ``extend healthy life and reduce
the burdens of illness and disability.'' Without good nutrition, there
cannot be good health. Indeed, a World Health Organization study on
childhood nutrition in developing countries concluded that over 50
percent of child deaths under the age of five could be attributed to
malnutrition's effects in weakening the immune system and exacerbating
common illnesses such as respiratory infections and diarrhea.
Strikingly, most of these deaths were not linked to severe
malnutrition, but chronic nutritional deficiencies brought about by
overreliance on single crops for primary staples. Plant researchers are
working today to address the root cause of this problem by balancing
the nutritional content of major crop plants to provide the full range
of essential micronutrients in plant-based diets.
By contrast to developing countries, obesity, cardiac disease, and
cancer take a striking toll in the developed world. Research to improve
and optimize concentrations of plant compounds known to have, for
example, anti-carcinogenic properties, will hopefully help in reducing
disease incidence rates. Ongoing development of crop varieties with
tailored nutraceutical content is an important contribution that plant
biologists can and are making toward realizing the long-awaited goal of
personalized medicine, especially for preventative medicine.
Drug Discovery.--Plants are also fundamentally important as sources
of both extant drugs and drug discovery leads. In fact, 60 percent of
anti-cancer drugs in use within the last decade are of natural product
origin--plants being a significant source. An excellent example of the
importance of plant-based pharmaceuticals is the anti-cancer drug
taxol, which was discovered as an anti-carcinogenic compound from the
bark of the Pacific yew tree through collaborative work involving
scientists at the NIH National Cancer Institute and plant natural
product chemists. Taxol is just one example of the many plant compounds
that will continue to provide a fruitful source of new drug leads.
While the pharmaceutical industry has largely neglected natural
products-based drug discovery in recent years, research support from
NIH offers yet another paradigm. Multidisciplinary teams of plant
biologists, bioinformaticians, and synthetic biologists are being
assembled to develop new tools and methods for natural products
discovery and creation of new pharmaceuticals. We appreciate NIH's
current investment into understanding the biosynthesis of natural
products through transcriptomics and metabolomics of medicinal plants
and support more funding opportunities similar to the ``Genomes to
Natural Products'' which will hopefully pave the way for new plant-
related medicinal research.
conclusion
Although NIH does recognize that plants serve many important roles,
the boundaries of plant-related research are expansive and integrate
seamlessly and synergistically with many different disciplines that are
also highly relevant to NIH. As such, ASPB asks the Subcommittee to
provide the maximum appropriation and direction to NIH to support
additional plant research in order to continue to pioneer new
discoveries and new methods with applicability and relevance in
biomedical research.
Thank you for your consideration of ASPB's testimony. For more
information about ASPB, please see www.aspb.org.
[This statement was submitted by Tyrone C. Spady, Ph.D., Director
of Legislative and Public Affairs, American Society of Plant
Biologists.]
______
Prepared Statement of the American Thoracic Society
SUMMARY: FUNDING RECOMMENDATIONS
(In millions $)
------------------------------------------------------------------------
National Institutes of Health.............................. 32,000
National Heart, Lung & Blood Institute................. 3,214
National Institute of Allergy & Infectious Disease.... 4,701
National Institute of Environmental Health Sciences.... 717.7
Fogarty International Center........................... 72.7
National Institute of Nursing Research................. 151
Centers for Disease Control and Prevention................. 7,800
National Institute for Occupational Safety & Health.... 292.3
Asthma Programs........................................ 30.5
Div. of Tuberculosis Elimination....................... 243
Office on Smoking and Health........................... 250
National Sleep Awareness Roundtable (NSART)............ 1
------------------------------------------------------------------------
The ATS's 15,000 members help prevent and fight respiratory disease
through research, education, patient care and advocacy.
lung disease in america
Diseases of breathing constitute the third leading cause of death
in the U.S., responsible for one of every seven deaths. Diseases
affecting the respiratory (breathing) system include chronic
obstructive pulmonary disease (COPD), lung cancer, tuberculosis,
influenza, sleep disordered breathing, pediatric lung disorders,
occupational lung disease, asthma, and critical illness.
National Institutes of Health
The NIH is the world's leader in groundbreaking biomedical health
research into the prevention, treatment and cure of diseases such as
lung cancer, COPD and tuberculosis. Sequestration and a lack of
inflationary adjustments over the past decade have significantly eroded
the NIH research budget. Following the implementation of the
sequestration funding cut in fiscal year 2013, NIH's spending power in
inflation-adjusted dollars declined by over 22 percent since 2003. The
number of grants supported by the NIH is now at the lowest level since
2001. The ATS is very concerned that due to reductions in Federal
research funding, there is a lack of opportunities for young
investigators who represent the future of scientific innovation. We ask
the subcommittee to provide at least $32 billion in funding for the NIH
in fiscal year 2016.
Despite the rising lung disease burden, lung disease research is
underfunded. In fiscal year 2014, lung disease research represented
just 20.1 percent of the National Heart Lung and Blood Institute's
(NHLBI) budget. Although lung disease is the third leading cause of
death in the U.S., research funding for the disease is a small fraction
of the money invested for the other three leading causes of death. In
order to stem the devastating effects of lung disease, research funding
must continue to grow.
Centers for Disease Control and Prevention
In order to ensure that health promotion and chronic disease
prevention are given top priority in Federal funding, the ATS supports
a funding level for the Centers for Disease Control and Prevention
(CDC) that enables it to carry out its prevention mission, and ensure a
translation of new research into effective State and local public
health programs. We ask that the CDC budget be adjusted to reflect
increased needs in chronic disease prevention, infectious disease
control, including TB control and occupational safety and health
research and training. The ATS recommends a funding level of $7.8
billion for the CDC in fiscal year 2016.
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 U.S. 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:
--$264 million for the Antibiotic Resistance Solutions Initiative
--$32 million for the National Healthcare Safety Network (NHSN)
--$30 million for the Advanced Molecular Detection (AMD) Initiative
To address antibiotic resistance research needs, we urge a funding
increase of $100 million for the National Institutes of Allergy and
Infectious Disease (NIAID) to spur research into rapid new diagnostics,
new treatments and other activities and an increase of $192 million for
the Biomedical Advanced Research and Development Authority (BARDA) to
support antimicrobial research and development.
copd
Chronic Obstructive Pulmonary Disease (COPD) is the third 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. In 2010, the estimated economic cost of lung
disease in the U.S. was $186 billion, including $117 billion in direct
health expenditures and $69 billion in indirect morbidity and mortality
costs.
The NHLBI is developing a national action plan on COPD, in
coordination with the Centers for Disease Control and Prevention (CDC)
to expand COPD surveillance, development of public health interventions
and research on the disease and increase public awareness of the
disease and we urge Congress to support it. We also urge CDC to include
COPD-based questions to future CDC health surveys, including the
National Health and Nutrition Evaluation Survey (NHANES) and the
National Health Information Survey (NHIS).
tobacco control
Cigarette smoking is the leading preventable cause of death in the
U.S., responsible for one in five deaths annually. The ATS is pleased
that the Department of Health and Human Services has made tobacco use
prevention a key priority. The CDC's Office of Smoking and Health
coordinates public health efforts to reduce tobacco use. In order to
significantly reduce tobacco use within 5 years, as recommended by the
subcommittee in fiscal year 2010, the ATS recommends a total funding
level of $250 million for the Office of Smoking and Health in fiscal
year 2016.
asthma
Asthma is a significant public health problem in the United States.
Approximately 25 million Americans currently have asthma. In 2010,
3,388 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. The
disease costs our healthcare system over $50.1 billion per year.
African Americans have the highest asthma prevalence of any racial/
ethnic group and the age-adjusted death rate for asthma in this
population is three times the rate in whites. 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
2016 that funding for CDC's National Asthma Control Program be
maintained at a funding level of at least $30.596 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 sleep-related
comorbidities. The ATS recommends a funding level of $1 million in
fiscal year 2016 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 Nation Center for Sleep
Disordered Research (NCSDR) at the NHLBI.
tuberculosis
Tuberculosis (TB) is the second leading global infectious disease
killer, claiming 1.5 million lives each year. In the U.S., every State
reports cases of TB annually. Drug resistant tuberculosis was
identified as a serious public health threat to the U.S. in the 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 Comprehensive Tuberculosis Elimination Act (CTEA, Public Law
110-392), enacted in 2008, reauthorized programs at CDC with the goal
of putting the U.S. back on the path to eliminating TB. The ATS,
recommends a funding level of $243 million in fiscal year 2016 for
CDC's Division of TB Elimination, as authorized under the CTEA, and
urges the NIH to expand efforts to develop new tools to address TB.
Additionally, in recognition of the unique public health threat posed
by drug resistant TB, we urge BARDA to support research and development
into new 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. In 2009, of the 10
leading causes of infant mortality, 4 were lung diseases or had a lung
disease component. Many of the precursors of adult respiratory disease
start in childhood. Many children with respiratory illness grow into
adults with COPD. It is estimated that 7.1 million children suffer from
asthma. While some children appear to outgrow their asthma when they
reach adulthood, 75 percent will require life-long treatment and
monitoring of their condition. The ATS encourages the NHLBI 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.
Investigation into diagnosis, treatment and outcomes in critically ill
patients should be a priority, and the NIH should be encouraged and
funded to coordinate investigation in this area in order to meet this
growing national imperative.
fogarty international center
The Fogarty International Center (FIC) provides training grants to
U.S. universities to teach AIDS treatment and research techniques to
international physicians and researchers. Because of the link between
AIDS and TB infection, FIC has created supplemental TB training grants
for these institutions to train international health professionals in
TB treatment and research. The ATS recommends Congress provide $72.8
million for FIC in fiscal year 2016, to allow expansion of the TB
training grant program from a supplemental grant to an open competition
grant.
researching and preventing occupational lung disease
As Congress considers funding priorities for fiscal year 2016, the
ATS urges the subcommittee to provide at least level funding for the
National Institute for Occupational Safety and Health (NIOSH). NIOSH,
within the Centers for Disease Control and Prevention (CDC), is the
primary Federal agency responsible for conducting research and making
recommendations for the prevention of work-related illness and injury.
The ATS appreciates the opportunity to submit this statement to the
subcommittee.
[This statement was submitted by Thomas Ferkol, MD, President,
American Thoracic Society.]
______
Prepared Statement of Theresa A Anderson
As a Parent, Guardian and member of VOR, I am writing to urge that
the Subcommittee to include language in its Labor, HHS, and Education
and Related Agencies bill that expressly prohibits the use of
appropriations for any HHS program in support of activities which
attempt to downsize or close a Medicaid-licensed Intermediate Care
Facility for Individuals with Intellectual Disabilities (ICF/IID) or
any other Medicaid-licensed settings serving people with intellectual
disabilities, unless the purpose of the action is to remedy systemic
abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
As a Parent & Guardian I am in the best position to understand my
son, Matthew's wants & needs. Having an attorney or outside advocate
make such decisions is unconscionable.
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Arthritis Foundation
On behalf of the 52 million adults and 300,000 children living with
doctor-diagnosed arthritis in the U.S., the Arthritis Foundation thanks
Chairman Blunt and Vice Chairwoman Murray for the opportunity to
provide written testimony to the Appropriation Subcommittee on Labor,
Health and Human Services (HHS), and Education and Related Agencies for
fiscal year 2016. Arthritis affects 1 in 5 Americans and is the leading
cause of disability in the U.S., according to the Centers for Disease
Control and Prevention (CDC). It results in 44 million outpatient
visits, over a million hospitalizations, and over 9,000 deaths
annually. It limits the daily activities of nearly 23 million Americans
and causes work limitations for 40 percent of the people with the
disease. This translates to $156 billion a year in direct and indirect
costs from two forms of arthritis alone--osteoarthritis (OA) and
rheumatoid arthritis (RA).
There is no cure for arthritis, and for some forms of arthritis
like OA, there is no effective therapeutic treatment. Research is
critical to build towards a cure, to develop better treatments with
fewer severe side effects, and to 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 1 in 4 veterans suffering from the disease. This
testimony will focus on the two HHS agencies and programs that are most
essential for addressing arthritis: the National Institutes of Health
and the Arthritis Program at the Centers for Disease Control and
Prevention.
national institutes of health (nih)
As previously stated, there is no cure for arthritis, and for many
types like OA, there are no effective therapeutic treatments. Even for
auto-immune 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. For example, there
is no single test to diagnose RA. Instead, diagnose is usually made
through a combination of clinical assessments, such as examination of
the joints for inflammation, history of symptoms, blood tests and x-
rays. Because of this, it can take a long time to diagnose RA, and
Juvenile Arthritis in children. 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 patients have access to
treatments early in their disease, ensuring a higher quality of life.
In the period from 2009-2013, NIH funding that went into the
rheumatology community made up 1.79 percent of NIH funding, translating
to 6,750 awards, totaling 1.52 percent of all NIH awards over that 5
year period. Arthritis is a diverse disease, and therefore arthritis
research is supported at a number of NIH Institutes and Centers. For
example, the National Institute of Allergy and Infectious Diseases
(NIAID) supports much of the research on auto-immune forms of arthritis
like rheumatoid arthritis; the National Institute on Aging (NIA)
support research on arthritis in older Americans; and the National
Institute of Child Health and Human Development (NICHD) supports
research on arthritis in children.
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 NIAMS has
supported 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 recently
launched Accelerating Medicines Partnership is 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, such as:
--How 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.
--How the immune system affects the initiation and progression of
auto-immune forms of arthritis, to help identify potential
therapies and interventions to strengthen the immune system in
people with RA.
--How existing successful anti-rheumatic drugs may be used for other
arthritis-related diseases.
Most recently, researchers have found the gene that confirms the
existence of psoriatic arthritis. This is a breakthrough that has the
potential to lead to targeted therapies for psoriatic arthritis, and
even treatments that can prevent its onset. These types of research
breakthroughs can have an enormous impact on the quality of life for
people with arthritis, in addition to a generating a strong return on
investment in reduced healthcare costs.
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 fund NIH at a minimum of $32 billion in fiscal year 2016 to
keep pace with the growing research needs in the arthritis community.
centers for disease control and prevention (cdc) arthritis program
The CDC Arthritis Program is the only Federal program dedicated
solely to arthritis. It provides grants to 12 States to support public
health programs, provide education services, perform public health
research, and support data collection. Its goal is to connect all
Americans with arthritis to resources to help them manage their
disease. Evidence based programs like Enhance Fitness help keep older
adults active, and has shown a 35 percent improvement in physical
function, resulting in fewer hospitalizations and lower health costs
compared to non-participants. Further, 1 in 4 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.
Missouri is one of the 12 CDC-funded States, and with this Federal
support, the State Arthritis and Osteoporosis Program and its partners
have been able to develop and disseminate specific marketing material
for arthritis programs, offer more programs in more communities and in
more sites, involve more agencies and partners, and involve more
referrals from doctor's offices. The impact to-date is a 50 percent
increase in the number of self-management programs offered across the
State in 2 years, a doubling of the offering of the Walk with Ease
program, and an increase of 18 active partners in the Health Delivery
System partnership.
Not only does the Arthritis Program provide resources to people
with arthritis, it also supports data collection on the prevalence and
severity of arthritis. Because of this support, we know that 1 in 5
Americans has doctor-diagnosed arthritis, including 28 percent of
people in Missouri and 25 percent of people in Washington, and 622,000
of those people in Missouri and 693,000 of those people in Washington
are limited by their arthritis. Without the Arthritis Program, the
robust level of data collection we have now would not exist. As you
know, this data is critical for determining where to direct public
health programs and how to set research priorities. For example,
because of the data on the high number of people with arthritis who
also have at least one other chronic disease like heart disease (24
percent) or diabetes (16 percent), we know that research on co-
morbidities and coordinated chronic disease programs are important to
reducing the overall impact of chronic disease on people with
arthritis.
Given the high prevalence and severity of this disease, the
Arthritis Program is woefully under-funded compared to the investment
in other chronic diseases. Despite the low funding level of $13 million
in fiscal year 2014, the program was slated for elimination in fiscal
year 2015. While the program was preserved, the funding was cut by 25
percent, bringing the fiscal year 2015 total to $9.5 million. The
Arthritis Program staff must now determine how to support the same
level of programs in 12 States with 25 percent fewer resources.
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 restore the program to its full funding level
so it can continue its current level of operations in the 12 States is
supports. Therefore, we urge you to restore the $3.5 million to the CDC
Arthritis Program, bringing the total program level back to $13 million
in fiscal year 2016.
We thank the Subcommittee for its commitment to public health. As
you write the fiscal year 2016 Labor-HHS-Education appropriations bill,
we urge you to fund NIH at a minimum of $32 billion and to restore the
CDC Arthritis Program to its full funding level of $13 million in order
to continue the investment in improving the lives of people with
arthritis. Please contact Arthritis Foundation Director of Health
Policy and Federal Affairs Anna Hyde at [email protected] with any
questions.
______
Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges is a not-for-profit
association representing all 141 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 nearly 90 academic and scientific societies. Through these
institutions and organizations, the AAMC represents 148,000 faculty
members, 83,000 medical students, and 115,000 resident physicians. 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 $32 billion
for the National Institutes of Health (NIH); $375 million in budget
authority for the Agency for Healthcare Research and Quality (AHRQ);
$524 million for the Title VII health professions and Title VIII
nursing workforce development programs at the Health Resources and
Services Administration (HRSA)'s Bureau of Health Workforce; and
continued support for student aid through the Department of Education
and HRSA's National Health Service Corps. The AAMC appreciates the
Subcommittee's longstanding, bipartisan efforts to strengthen these
programs.
National Institutes of Health.--Congress's long-standing bipartisan
support for medical research through the NIH has created a scientific
enterprise that is the envy of the world and has contributed greatly to
improving the health and well-being of all Americans. 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.
Nearly 84 percent of the NIH's budget is competitively awarded
through more than 55,000 research and training grants to more than
300,000 researchers at over 2,500 universities and research
institutions located in every State. At least half of this funding
supports life-saving research at America's medical schools and teaching
hospitals, where scientists, clinicians, fellows, residents, medical
students, and trainees work side-by-side to improve the lives of
Americans through research.
The partnership between NIH and America's scientists, medical
schools, teaching hospitals, universities, and research institutions is
a unique and highly-productive relationship, leveraging the full
strength of our Nation's research enterprise to foster discovery,
improve our understanding of the underlying cause of disease, and
translate this knowledge into the next generation of diagnostics,
therapeutics, and other clinical innovations. This partnership not only
lays the foundation for improved health and quality of life, but also
strengthens the Nation's long-term economy.
While the AAMC is grateful for the increase provided to NIH in the
current fiscal year, the NIH budget remains lower than it was in fiscal
year 2012 in actual dollars, and since 2003, NIH funding has declined
by 23 percent after adjusting for biomedical inflation. This loss is
significantly impacting the Nation's ability to sustain the scientific
momentum that has contributed so greatly to our Nation's health and our
economic vitality.
The AAMC supports the Ad Hoc Group for Medical Research
recommendation that NIH receive at least $32 billion in fiscal year
2016 as the next step toward a multi-year increase in our Nation's
investment in medical research. We look forward to working with
Congress and the Administration to achieve this goal through the annual
appropriations process.
The AAMC also urges Congress and the Administration to work in a
bipartisan manner to end sequestration and the continued cuts to
medical research that squander invaluable scientific opportunities,
discourage young scientists, threaten medical progress and continued
improvements in our Nation's health, and jeopardize our economic
future.
Perhaps the most destructive and long-lasting impact of the decline
in the NIH budget is on the next generation of scientists, who see
training funds slashed and the possibility of sustaining a career in
research diminished. The continued success of the biomedical research
enterprise relies heavily on the imagination and dedication of a
diverse and talented scientific workforce. Of particular concern is the
challenge of maintaining a cadre of clinician-scientists to facilitate
translation of basic research to human medicine. NIH supports many
innovative training programs and funding mechanisms that foster
scientific creativity and exploration.
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.
The AAMC thanks the Subcommittee for its efforts to retain the
limit on salaries that can be drawn from NIH extramural awards at
Executive Level II of the Federal Executive Pay Scale. Medical schools'
and teaching hospitals' discretionary funds from clinical revenues and
other sources have become increasingly constrained and less available
to invest in research. If institutions and departments divert funds to
compensate for a reduction in the salary limit, they have less funding
for critical activities such as bridge funding to investigators between
grants and start-up packages to young investigators to launch their
research programs. A lower salary cap also will disproportionately
affect physician investigators, who will be forced to make up salaries
from clinical revenues, thus leaving less time for research. This may
serve as a deterrent to their recruitment into research careers. The
AAMC urges the Subcommittee to continue its efforts to retain the limit
at Executive Level II.
Agency for Healthcare Research and Quality.--Complementing the
medical research supported by NIH, AHRQ sponsors health services
research designed to improve the quality of healthcare, decrease
healthcare costs, and provide access to essential healthcare services
by translating research into measurable improvements in the healthcare
system. The AAMC firmly believes in the value of health services
research as the Nation continues to strive to provide high-quality,
evidence-based, efficient, and cost-effective healthcare to all of its
citizens. The AAMC joins the Friends of AHRQ in recommending $375
million in budget authority for the agency in fiscal year 2016.
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. These research findings will better
guide and enhance consumer and clinical decisionmaking, provide
improved healthcare services, and promote efficiency in the
organization of public and private systems of healthcare delivery.
Health Professions Funding.--HRSA's Title VII health professions
and Title VIII nursing 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, loan
guarantees, 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 joins the Health Professions and Nursing Education
Coalition (HPNEC) in recommending $524 million for these important
workforce programs in fiscal year 2016. This funding level is necessary
to ensure continuation of all existing Title VII and Title VIII
programs while also supporting promising initiatives such as the
Pediatric Subspecialty Loan Repayment program, the Clinical Training in
Interprofessional Practice program, the Rural Physician Training
Grants, and other efforts to bolster the workforce.
The AAMC objects to the Administration's proposal to eliminate the
Title VII Area Health Education Centers (AHEC) program, which, in
academic year 2013-2014 alone, trained more than 24,000 health
professions students in over 10,000 sites across the country, including
community-based and ambulatory care settings and CHCs. While we
appreciate the Administration's proposal to enhance the focus on
academic support and pre-professional engagement for students from
disadvantaged backgrounds through the newly proposed Health Workforce
Diversity Program, we are disappointed in the Administration's proposal
to eliminate the Health Careers Opportunity Program (HCOP). Research
shows that HCOP has helped students from disadvantaged backgrounds
throughout the educational pipeline achieve higher grade point averages
and matriculate into health professions programs. Continued support for
these and the full spectrum of Title VII programs is essential to
prepare our next generation of medical professionals to adapt to the
changing healthcare needs of the Nation's aging and increasingly
diverse population.
In addition to funding for Title VII and Title VIII, HRSA's Bureau
of Health Workface also supports the Children's Hospitals Graduate
Medical Education (CHGME) program. This 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. At a time when the Nation faces a critical physician
shortage, the AAMC has serious concerns about the substantial cuts to
the CHGME program proposed in the president's budget. We strongly
support full funding for the Children's Hospitals Graduate Medical
Education program at $300 million in fiscal year 2016.
Student Aid and the National Health Service Corps (NHSC).--The AAMC
urges the Subcommittee to sustain student loan and repayment programs
for graduate and professional students at the Department of Education.
The average graduating debt of medical students is currently $180,000,
and typical repayment can range from $328,000 to $483,000.
Along with more than 50 stakeholder organizations, the AAMC urges
the Subcommittee to provide a discretionary appropriation for the
National Health Service Corps (NHSC) in fiscal year 2016. 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 2016 spending bill.
______
Prepared Statement of the Association of Assistive Technology Act
Programs
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, I appreciate the opportunity to share the Association of
Assistive Technology Act Programs' (ATAP) perspective on Federal
investments in the Assistive Technology (AT) Act of 2004 (Public Law
108-364). ATAP is a national, member-based organization, comprised of
54 State Assistive Technology Act Programs funded under the Assistive
Technology Act (AT Act). The AT Act receives a total of $31 million
from the Federal Government, as part of Title II of the Labor, Health
and Human Services, and related agencies appropriations bill. This
level of funding provided $25.7 million for the State AT Grant
Programs; $4.3 million for the Protection and Advocacy for Assistive
Technology program; and $1.0 million for technical assistance required
under the AT Act's National Activities authority.
ATAP was established in 1997 to provide support to State AT Program
members to enhance the effectiveness of AT Programs on the State and
local level, and promote the national network of AT Programs. ATAP
facilitates the coordination of State AT Programs nationally and
provides technical assistance and support to its members. ATAP
represents the needs and interests of the State AT Programs and is the
national voice of the AT Programs.
Funding for the AT Act supports State AT Grant programs that assure
people with disabilities have access to and acquisition of the
assistive technology services they need to live, work, and attend
school in their communities.
State AT Grant Programs exist in every State and territory and
support four State-level activities, required by the law: 1) device
demonstration; 2) device loan; 3) device reutilization (reuse and
exchange); 4) financial loan and other financing programs. State AT
Grant programs also are required by law to provide technical assistance
and training, and related assistive technology services. State AT
Programs play a pivotal role in annually assisting thousands of
individuals with disabilities to increase, maintain, or improve their
functional capability through the use of appropriate AT. As a result,
ATAP is advocating for full funding of the AT Act ($38 million) so that
State AT Programs can help more individuals benefit from AT and meet
the full demand at the State and local level. Full funding would
provide the minimum authorized level for each State.
State AT Grant Programs yield significant savings to consumers and
the Federal Government. Below is an outline of the return on investment
yielded nationally by all four State-level activities:
--Demonstration Programs provide opportunities for people to learn
about and become familiar with specific types of AT by
comparing and contrasting the functions and features of devices
through hands on exploration. Instruction is provided by
knowledgeable AT professionals in a product neutral environment
that does not favor one company or manufacturer. SAVINGS:
68,070 individuals participated in 39,916 device demonstrations
conducted by State AT Programs in fiscal year 2014. Projecting
a modest $100 savings realized by just half of the total
demonstrations conducted results in national savings of
approximately $2 million dollars.
--Device Loan/Borrowing Programs allow individuals to borrow--for a
limited time period--devices for use at home, school, work etc.
Device loans allow borrowers to try out devices in their own
environments to determine if a device will meet their needs
before a purchase is made. Device loans also can provide loaner
AT while a device is being repaired, while a consumer is
waiting for funding approvals, or to use for training or
professional development purposes. SAVINGS: 35,243 device loans
were made to individuals or agencies with 47,669 devices
borrowed from short-term device loan programs operated through
State AT Programs in fiscal year 2014. Using an average savings
of $1,000 per loan with more than one device associated (at
least one device was rejected as being a match and a second one
was borrowed) results in national savings of well over $12
million. Projecting a minimum $10 per day rental fee for the
average loan period of 35 days, results in national savings of
almost $3 million for devices borrowed for accommodation (while
a device is repaired or while waiting for funding) or for
training since the device did not have to be rented for these
purposes.
--Device Reutilization Programs support the reuse of assistive
technology that is no longer needed or used by its original
owner. Recipients usually obtain equipment at significantly
lower cost or no cost. There are several options for
reutilization including reassignment/reuse, device exchange
(typically online) and long-term device loans where the
borrower keeps the device as long as needed. SAVINGS: 43,713
recipients acquired 57,745 reutilized devices through State AT
Programs in fiscal year 2014. A total of $25,199,009 was saved
by device recipients by purchasing/obtaining reutilized AT
instead of new. In addition, close to 70 percent of the reuse
device recipients indicated that they would not have been able
to afford the AT if it were not for the reuse services of the
State AT Program. The cost of those individuals being unable to
work, learn or live in the community without the AT they need
would be immeasurable.
--State Financing Activities help individuals purchase/obtain AT
through a variety of initiatives. Financial loan programs
provide consumers with affordable, flexible borrowing options.
Other programs provide AT directly to consumers at no cost
using dollars from non-AT Act sources or save consumers money
when purchasing AT. SAVINGS: 631 borrowers obtained financial
loans totaling $4,295,953 to buy 639 devices in fiscal year
2014. These loans were made at an average interest rate of 3.33
percent. Assuming most standard loans would be at a 7 percent
or higher interest rate, consumers have saved considerable
expense through access to this lower rate. 2,385 recipients
acquired 2976 devices valued at $3,183,057 from other State
financing programs that directly provide AT using external
funding sources. 3,356 recipients acquired 5,557 AT devices
with a savings of $897,808 from other State financing
activities, such as cooperative buying programs and device
lease programs. The vast majority (84 percent) of recipients
indicated that if the State financing activity they used was
not available they would not have been able to purchase/obtain
the AT potentially resulting in individuals who are unable to
successfully work, learn or live in the community.
Overall, State AT Grant Programs, based on the fiscal year 2014 Federal
investment of $25.7 million, yielded over $46 million in
savings and benefits, leveraged over $13 million and provided
direct services to nearly 700,000 people with disabilities.
While it is clear State AT Programs provide cost effective services
and supports that improve the lives of people with disabilities and
warrant an ongoing Federal investment, still there are 11 State AT Act
programs that do not receive the minimum grant authorized in the law in
2004 ($410,000). Due to the tremendous impact programs have on the
lives of people with disabilities, and the sincere savings they yield
both the government and the consumer, it would be valuable and cost-
effective to provide an additional $7 million to such a successful
Federal program. This level of funding would bring the AT Act to the
full level of funding intended in the statute and benefit thousands
more people who need assistive technology.
Thank you for the opportunity to provide testimony to the committee
as you make decisions on the fiscal year 2016 budget.
[This statement was submitted by Linda Jaco, Chair, Association of
Assistive Technology Act Programs.]
______
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 continue
to improve our Nation's health, sustain our leadership in medical
research, and remain competitive in today's global information and
innovation-based economy.
The final fiscal year 2015 omnibus appropriations bill included a
welcome and much needed increase for NIH. However, this increase did
not make up for funds cut by sequestration in fiscal year 2013 nor did
it restore the purchasing power NIH has lost over the past decade. In
fact, despite budget increases in the each of the past two fiscal
years, the NIH budget remains lower than it was in fiscal year 2012 in
actual dollars, and since 2003, NIH funding has declined by 23 percent
after adjusting for biomedical inflation.
While the President's fiscal year 2016 budget request for NIH would
provide a much needed next step by increasing NIH funding above
biomedical inflation, AIRI believes that the ongoing and emerging
health challenges confronting the United States and the world, and the
unparalleled scientific opportunities to address these burdens demand a
funding level of at least $32 billion in fiscal year 2016. AIRI also
urges Congress and the Administration to work in a bipartisan manner to
end sequestration and the continued cuts to medical research that
squander invaluable scientific opportunities, discourage young
scientists, threaten medical progress and continued improvements in our
Nation's health, and jeopardize our economic future.
AIRI is a national organization of more than 80 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 a unique and highly-
productive relationship, leveraging the full strength of our Nation's
research enterprise to foster discovery, improve our understanding of
the underlying cause of disease, and develop the next generation of
medical advancements 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. Approximately
84 percent of the NIH's budget goes to more than 300,000 research
positions at over 2,500 universities and research institutions located
in every State.
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. NIH supports long-term competitiveness for
American workers, forming one of the key foundations for U.S.
industries like biotechnology, medical device and pharmaceutical
development, and more. Unfortunately, continued erosion of the national
commitment to medical research threatens our ability to support a
medical research enterprise that is capable of taking full advantage of
existing and emerging scientific opportunities.
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. AIRI institutes are specifically focused
on pursuing knowledge around the biology and behavior of living systems
and applying that knowledge to improve human health and reduce the
burdens of illness and disability.
Additionally, AIRI member institutes have championed (and very
frequently are called upon to lead) technologies and research centers
to collaborate on biological research for all diseases. Using shared
resources--specifically, advanced technology platforms or ``cores,''--
as well as genomics, next-generation sequencing, electron and light
microscopy, high-throughput compound screening, bioinformatics,
imaging, and other technologies, AIRI researchers advance therapeutics
development and drug discovery.
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 to concerns over funding, AIRI
member institutes oppose legislative 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. Such prescriptive policies hinder AIRI
members' research missions and their ability to recruit and retain
talented researchers. AIRI also does not support legislative language
limiting the flexibility of NIH to determine how to most effectively
manage its resources while funding the best scientific ideas.
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 members are located in 25 States, including 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 biomedical research community depends upon a knowledgeable,
skilled, and diverse workforce to address current and future critical
health research questions. While the primary function of AIRI member
institutions is research, most are highly involved in training the next
generation of biomedical researchers, ensuring that a pipeline of
promising scientists is prepared to make significant and potentially
transformative discoveries in a variety of areas. AIRI supports
policies that promote the ability of the United States to maintain a
competitive edge in biomedical science.
The NIH initiatives focusing on career development and recruitment
of a diverse scientific workforce are important to innovation in
biomedical research and public health. However, one of the most
destructive and long-lasting impacts of the decline in the NIH budget
is on the next generation of scientists, who see training funds slashed
and the possibility of sustaining a career in research diminished. The
continued success of the biomedical research enterprise relies heavily
on the imagination and dedication of a diverse and talented scientific
workforce.
In addition, strong support for NIH is critical to the Nation's
competitiveness. This country still has the most robust medical
research capacity in the world, but that capacity simply cannot weather
repeated blows such as persistent below-inflation funding levels and
the cuts of sequestration, which jeopardize our competitive edge in an
increasingly innovation-based global marketplace. Other countries have
recognized the critical role that biomedical science plays in
innovation and economic growth and have significantly increased their
investment in biomedical science.
This shift in funding raises the concern that talented medical
researchers from all over the world, who once flocked to the U.S. for
training and stayed to contribute to our innovation-driven economy, are
now returning 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 maintain our dominance, we must reaffirm
this commitment to provide NIH the funds needed to maintain our
competitive edge.
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 at least $32 billion for NIH in the
fiscal year 2016 appropriations bill. AIRI also urges Congress and the
Administration to work in a bipartisan manner to end sequestration and
the continued cuts to medical research that squander valuable
scientific opportunities, discourage young scientists, threaten medical
progress and continued improvements in our Nation's health, and
jeopardize our economic future.
______
Prepared Statement of the Association of Maternal & Child Health
Programs
Chairman Blunt and Distinguished Subcommittee Members--I am
grateful for this opportunity to submit written testimony on behalf of
the Association of Maternal & Child Health Programs (AMCHP), our
members, and the millions of women and children that are served by the
Title V Maternal and Child Health (MCH) Services Block Grant. I am
asking the Subcommittee to support an increase of $2 million in funding
for the Title V MCH Services Block Grant for a total of $639 million
for Federal fiscal year 2016.
These funds are needed to extend evidence-based services and
strategies that further the program's statutory purpose to improve the
health of all mothers and children by (1) ensuring access to quality
maternal and child health services, (2) reducing infant mortality and
preventable diseases and conditions, and (3) providing and promoting
family centered, community-based, coordinated for children with special
healthcare needs and facilitating the development of community-based
systems of services for such children and their families.
I know you and your colleagues understand that this level of
funding does not allow us to address all the health needs of our
Nation's women, children, fathers and families. Despite recent
progress, close to 24,000 babies tragically die each year. Many others
are born too soon and cost our society upwards of $26 billion per year.
Gaps in both private and public insurance create barriers for families
needing services. Many pregnant women still smoke. The obesity epidemic
continues to plague our country and the list goes on and on. In the
face of these challenges, public health programs have already borne
more than their fair share of deficit reduction with years of cuts and
a budget cap that could cut funding even further. In total, more than
52,000 State and local public health jobs have been lost since 2008 due
to the elimination of positions, hiring freezes, layoffs and furloughs.
This represents a loss of 17 percent of the State and territorial
public health workforce and a 22 percent loss of the local public
health workforce, with serious consequences for our capacity to address
leading MCH challenges.
However, we recognize that during these tough budgetary times any
substantial increase in funding would come at the detriment of other
public health programs. Therefore, we strongly urge you to support a
small $2 million increase in funding for the Federal investment in the
Title V MCH Services Block. Title V has proven to be a cost effective,
accountable, and flexible funding source used to address the most
critical, pressing and unique MCH needs of each State. States and
jurisdictions use the Title V MCH Block Grant to design and implement a
wide range of maternal and child health programs that respond to
locally defined needs.
One of the most exciting developments with the Title V MCH Block
Grant is a transformation that is happening right now under the
leadership of Dr. Michael Lu, associate administrator of the Health
Resources and Services Administration Maternal and Child Health Bureau.
This transformation is focused on three main goals--to reduce burden,
maintain flexibility and improve accountability. At its center is an
effort to improve our performance measurement framework with a
sharpened focus on national outcome measures, national performance
measures and evidence-based strategy measures.
This transformation will ensure that investments made by the
programs support evidence-based or informed strategies. Title V focuses
on accountability and delivering results, and we are confident this
transformation will build and strengthen that important focus so you
can be assured that we are getting the best value for the taxpayer
dollar while making real and measurable differences in the lives of our
mothers and children. For more information on this effort, please
contact me and my staff will help arrange further briefing and
information on what this means for your State.
A key component of the Title V MCH Block Grant is the Special
Projects of Regional and National Significance (SPRANS). SPRANS funding
complements and helps ensure the success of State Title V, Medicaid and
the Children's Health Insurance Program (CHIP) by driving innovation,
training young professionals and building capacity to create integrated
systems of care for mothers and children. Examples of innovative
projects funded through SPRANS include guidelines for child health
supervision from infancy through adolescence (i.e. Bright Futures);
nutrition care during pregnancy and lactation; recommended standards
for prenatal care; successful strategies for the prevention of
childhood injuries; and health safety standards for out of home child
care facilities.
One of the primary focus areas for States Title V programs 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 or other congenital
disorders, to children with behavioral or emotional conditions.
Overall, CYSHCN are defined as children birth to age 21 who have or are
at increased risk for a chronic physical, developmental, behavioral, or
emotional condition and require health and related services of a type
or amount beyond that required by children generally. In a recent
national survey, children with a chronic condition birth to age 18
represented approximately 15 percent of the entire child population in
the United States.
Creating a comprehensive, quality system of care for children and
youth with special healthcare needs (CYSHCN) has been one of the most
challenging areas for State health leaders and other stakeholders such
as State Title V CYSHCN programs, health plans, private insurers, State
Medicaid and CHIP agencies, pediatricians and family physicians, and
families. By one critical measure, only 43 percent of all CYSHCN report
receiving services via a recommended medical home. Medical homes are
considered the gold standard because they promote care that is
accessible, family-centered, continuous, comprehensive, coordinated,
compassionate, and culturally effective.
Recently AMCHP--with the generous support of the Lucile Packard
Foundation for Children's Health and a broad group of stakeholders--
forged a project that we believe accelerates progress in this
challenging area. For more than three decades, numerous national
reports, initiatives, and research have described or called for
frameworks, standards and various measures to advance a comprehensive
system of care for CYSHCN and their families. These and other efforts
have helped to establish important work in States, communities, health
plans, provider practices, and other areas to build comprehensive
systems of care for CYSHCN. However, until recently they have not
resulted in an agreed on national set of standards that could be used
and applied within healthcare and public health systems and other
child-serving systems to improve healthcare quality and health outcomes
for this population of children. It became clear to AMCHP and others
that achieving consensus on the necessary capacity and performance of
systems serving CYSHCN is essential to comprehensive, quality systems
of care for this population of children.
To pursue this vision, AMCHP recently led a National Consensus
Framework for Improving Quality Systems of Care for Children and Youth
with Special Health Care Needs project to develop a core set of
structure and process standards for systems of care for CYSHCN, based
on the research and national consensus among a diverse group of
stakeholders with expertise in their field. The resulting standards--
available on our website--are intended for use by a range of national,
State and local stakeholder groups including State Title V CYSHCN
programs, health plans, State Medicaid and CHIP agencies, pediatric
provider organizations, children's hospitals, insurers, health services
researchers, families/consumers and others. These standards represent a
major breakthrough that can help improve our system of care for all
children--and this committee can help further accelerate progress by
assessing the resources needed to make sure every State has the
capacity to fully operationalize and implement them.
In our view, one of the biggest under-celebrated success stories of
recent times are the contributions this committee makes in funding
programs such as the Title V MCH Services Block Grant that contribute
to substantial progress in reducing infant mortality. In fact, a few
months ago President Obama responded to a question about priorities in
media coverage by saying in an interview, ``There's just not going to
be a lot of interest in a headline story that we have cut infant
mortality by really significant amounts over the last 20 years . . . ''
He noted that plane crashes and terrorism are more likely covered, and
that other complex stories are harder for the media to report.
He's right, and yet those who take a closer look will find that in
2013, 23,440 babies in the United States died in their first year of
life, which is equivalent to about 117 average sized passenger planes
crashing every year. That's close to one every three days. The
president also is right that we made tremendous progress in reducing
that toll in recent decades--as mentioned, perhaps one of the greatest
public health success stories rarely covered in the press.
For a long time, infant mortality rates have been one of the
sentinel measures to gauge how well any society is doing to ensure the
health of women, children and families. And here is the headline news:
since we began collecting statistics in 1915, the overall infant
mortality rate declined from nearly 100 of every 1,000 babies born in
1915 to nearly just 6 per 1,000 in 2011. That is a stunning 94 percent
improvement and represents millions of lives saved.
Ensuring that babies are born in optimal health is all the more
important considering the recent scientific advances in our
understanding about how a baby's early years are critical to building a
strong foundation for the rest of their life course. That is the good
news--but there also are a few caveats and contradictions. First, there
are persistent and unacceptable disparities among racial and ethnic
groups that have existed since the data collection began. The black and
Native American infant mortality rates are twice the rates of whites,
and in some communities it is even three times higher.
The second caveat is that the political will to accelerate progress
and eliminate disparities is inconsistent. Perhaps the biggest
contradiction is that the United States spends more money on maternity
care than any other nation on earth, yet still lags behind 26 other
industrialized nations on the key outcome of infant mortality.
Part of the problem is that too often we spend more on high tech
treatments--think elective C-sections and neonatal intensive care
units--than on basic prevention programs to address risk factors that
can lead to poor birth outcomes. For example, we know that
breastfeeding, family planning, immunization, smoking cessation and
safe sleep are effective in reducing infant mortality. However, funding
levels for these key public health programs have never matched actual
need, have slowly eroded over time, and are suffering further threats
from budget caps and looming sequestration.
Additionally, in June 2012, then Secretary of Health and Human
Services Kathleen Sebelius called for the first ever National Strategy
to Reduce Infant Mortality. A federally appointed Secretary's Advisory
Committee on Infant Mortality (SACIM) submitted detailed
recommendations but, to date, no formal strategy has been adopted.
Congress of course has the power of the purse, but has not
consistently delivered on its obligation to annually review
programmatic funding levels for public health programs and match
resources to national needs. Instead, it has allowed the slow erosion
of critical programs like the Title V MCH Block Grant--which has a
statutory purpose to reduce infant mortality--by imposing cuts of close
to $100 million over the past decade.
Currently funded at $637 million, this preventive program
represents less than one day's worth of the Nation's spending on the
Medicaid program, which at $1.2 billion a day reached a total of $450
billion in 2013. This demonstrates once again that our health system
spends plenty on healthcare but invests precious little in prevention
and public health efforts. In terms of total potential cost savings to
our health system, far too little attention is consistently given to
health economics and the measurable financial impact of public health
and the prevention of disease, illness and early death.
To move forward, we suggest four things: (1) your committee could
ask the current leadership of the U.S. Department of Health and Human
Services to take another look at the existing recommendations and
deliver on the promise to create a national strategy to reduce infant
mortality; (2) your committee could take a close look at that strategy,
ask for briefings, assess where improvement is possible, and provide
the resources and leadership needed to bring proven efforts to scale;
(3) members of this committee and your colleagues can visit and
highlight the communities where public health efforts are succeeding to
help create the political will to accelerate those successes; and (4)
you can support the small $2 million increase in funding for the
Federal investment in the cost effective and accountable Title V MCH
Block Grant. Taken together, this should generate some interest in
headline stories and more importantly, help ensure that every baby that
enters this world is born healthy and loved.
About AMCHP: The Association of Maternal & Child Health Programs is
a national resource, partner and advocate for State public health
leaders and others working to improve the health of women, children,
youth and families, including those with special healthcare needs.
[This statement was submitted by Lori Tremmel Freeman, Chief
Executive Officer, Association of Maternal & Child Health Programs.]
______
Prepared Statement of the Association of Minority Health Professions
Schools
summary of fiscal year 2016 recommendations
_______________________________________________________________________
Title VII Health Professions Training Programs
--$24.602 Million for the Minority Centers of Excellence.
--$22.133 Million for the Health Careers Opportunity Program.
$32 Billion for the National Institutes of Health
--$285 Million for the National Institute on Minority Health and
Health Disparities.
--$100 Million for Research Centers for Minority Institutions.
$65 Million for the Department of Health and Human Services' Office of
Minority Health.
$65 Million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you. I am Dr. Anthony Wutoh,
Chairman of the Board of Directors of the Association of Minority
Health Professions Schools (AMHPS) and the Dean of the College of
Pharmacy at Howard University in Washington, D.C. AMHPS, established in
1976, is the consortium of our Nation's twelve historically black
medical, dental, pharmacy, and veterinary medicine schools. The members
are two dental schools at Howard University and Meharry Medical
College; four colleges of medicine at The Charles Drew University,
Howard University, Meharry Medical College, and Morehouse School of
Medicine; five schools of pharmacy at Florida A&M University, Hampton
University, Howard University, Texas Southern University, and Xavier
University; and one college of veterinary medicine at Tuskegee
University.. In all of these roles, I have seen firsthand the
importance of minority health professions institutions and the Title
VII Health Professions Training programs.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help AMHPS continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush Administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: (1) serve in rural
and urban medically underserved areas, (2) provide care for minorities
and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2016, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2016, I recommend a
funding level of $25 million for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2016, I recommend a funding level
of $14 million for HCOPs. Additionally, we have worked hard with the
Obama Administration for them to understand this program. They have
offered to ``rebrand'' HCOP. Until such time that the agency that
administers the program, HRSA, and community agree on a path forward,
we support the current funding of HCOP.
national institutes of health
National Institute on Minority Health and Health Disparities: The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2016, I recommend $285 million for NIMHD.
Research Centers at Minority Institutions: The Research Centers at
Minority Institutions program (RCMI) has a long and distinguished
record of helping our institutions develop the research infrastructure
necessary to be leaders in the area of health disparities research. For
fiscal year 2016, I recommend $100 million for RCMI.
department of health and human services
Office of Minority Health: Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in healthcareers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities; however, that role will be greatly diminished if
this agency does not retain its grant-making authority. For fiscal year
2016, I recommend a funding level of $65 million for the OMH.
department of education
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to AMHPS. The funding from this program is used to
enhance educational capabilities, establish and strengthen program
development offices, initiate endowment campaigns, and support numerous
other institutional development activities. In fiscal year 2016, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
AMHPS' member institutions and the Title VII Health Professions
Training programs and the historically black health professions schools
can help this country to overcome health disparities. Congress must be
careful not to eliminate, paralyze or stifle the institutions and
programs that have been proven to work. The Association seeks to close
the ever widening health disparity gap. If this subcommittee will give
us the tools, we will continue to work towards the goal of eliminating
that disparity everyday.
Thank you, Mr. Chairman.
[This statement was submitted by Anthony Wutoh, Ph.D., Chairman,
Board of Directors, Association of Minority Health Professions
Schools.]
______
Prepared Statement of the Association of Science-Technology Centers
introduction
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, thank you for the opportunity to submit written testimony
for the record. My name is Anthony (Bud) Rock, and I serve as the
President and Chief Executive Officer of the Association of Science-
Technology Centers (ASTC). My testimony today addresses the importance
of science, technology, engineering, mathematics (STEM), and health
education, and will focus specifically on the fiscal year 2016 budgets
for four specific offerings at three Federal agencies over which your
subcommittee has jurisdiction, including: (1) the Science Education
Partnership Award (SEPA) program at the National Institutes of Health
(NIH), which would receive $18.5 million under the President's fiscal
year 2016 request; the Office of Museum Services (OMS) at the Institute
of Museum and Library Services (IMLS), which would receive $33.6
million under the President's fiscal year 2016 request; and the 21st
Century Community Learning Centers (21st CCLC) and Mathematics and
Science Partnerships (MSP) programs at the Department of Education
(ED), which would receive $1.15 billion and $202.7 million,
respectively, under the President's fiscal year 2016 request.
our request
On behalf of ASTC and the nearly 400 science centers and museums we
represent here in the United States, I urge the Subcommittee to
continue its strong support for critical STEM and health education
programs within NIH, IMLS, and ED as the Labor, Health and Human
Services, Education, and Related Agencies Appropriations Bill for
fiscal year 2016 moves forward. Specifically, I ask you to:
--Provide $20 million for the SEPA program at NIH (fiscal year 2016
request is $18.5 million);
--Provide $38.6 million for the OMS at IMLS (fiscal year 2016 request
is $33.6 million);
--Provide $1.15 billion for the 21st CCLC program (same as fiscal
year 2016 request) and $202.7 million for the MSP program (same
as fiscal year 2016 request) at ED; and
--Continue to thoroughly examine any proposals that would seek to
consolidate and/or reorganize Federal STEM, health, and
environmental education programs in an effort to ensure that
stakeholder input has been sought and that proven, successful
programs are maintained.
Before providing more detail about ASTC and the science center and
museum field, I want to first offer a brief snapshot of these Federal
programs and why they are so vital to communities across the country.
national institutes of health
According to NIH, the goal of the Science Education Partnership
Award program is to invest in educational activities that assist in
workforce development to meet the Nation's biomedical, behavioral and
clinical research needs. By supporting partnerships between researchers
and teachers, schools, and institutions like science centers and
museums, the SEPA program provides opportunities for students from
underserved communities to consider careers in research, provides
teachers with professional development in science- and health-related
content and teaching skills, and improves community health literacy
through exhibits and programming at science centers and museums.
In but one recent example, the Pacific Science Center in Seattle,
Washington, received support for ``Out of the Lab and Into the
Spotlight,'' which was created to provide opportunities for the general
public to increase their understanding of current health information
and increase their awareness of cutting-edge research taking place in
their own backyard. By engaging with research scientists in several
venues, the public will be exposed to NIH funded research and health
science careers. The President's fiscal year 2016 budget request
includes $18.5 million--the same amount available for fiscal year
2015--for SEPA. Given the program's impact and importance, I ask the
Committee to continue its strong support by providing $20 million for
SEPA for fiscal year 2016.
institute of museum and library services
IMLS is driven by its mission to inspire libraries and museums to
advance innovation, lifelong learning, and cultural and civic
engagement by providing leadership through research, policy
development, and grant making. The agency's Office of Museum Services
offers and administers competitive grant programs that undergo a
rigorous peer review process in an effort to identify well-designed
projects. Just last fall, IMLS announced new grants for 211 museum
projects through the Museums for America and National Leadership Grants
for Museums programs. Recipients included the Mississippi Children's
Museum (Jackson), which will use the funding towards the creation of a
``Literacy Garden,'' an outdoor gallery that will promote early
learning and development for underserved children in the first 7 years
of life; the Clay Center for the Arts and Sciences of West Virginia
(Charleston), which will enable it to create professional learning
communities of teachers and after-school staff serving 7th grade
students at seven partner schools using digital storytelling as a tool
to explore energy-related topics impacting their communities; and the
Oregon Museum of Science and Industry (Portland) for its ``Museum
Cafes: Integrating Food, Money, and Mission,'' program, which will
develop replicable innovative educational experiences to teach food
science, health, and the environment to the public.
The President's fiscal year 2016 budget request includes $33.6
million for the Office of Museum Services at the Institute of Museum
and Library Services. ASTC asks the Subcommittee to provide $38.6
million--the congressionally authorized level of funding--for OMS
programs for fiscal year 2016.
department of education
For years, the 21st Century Community Learning Centers program has
supported the creation of community learning centers that provide
academic enrichment opportunities during non-school hours for
children--particularly those students who attend high-poverty and low-
performing schools. The 21st CCLC program helps students meet State and
local student standards in core academic subjects, such as reading and
math; offers students a broad array of enrichment activities that can
complement their regular academic programs; and offers literacy and
other educational services to the families of participating children.
ASTC members across the country have utilized 21st CCLC funding to
partner with local school districts in an effort to highlight STEM in
afterschool. The agency's Math and Science Partnerships program was
intended to increase the academic achievement of students in
mathematics and science by enhancing the content knowledge and teaching
skills of classroom teachers--an area in which science centers and
museums excel. ASTC members, in partnership with local education
agencies and institutions of higher education, have implemented MSP
programs, and the Department's proposal to use new resources to
strengthen the program and to develop and increase the use of evidence-
based practices and provide students with opportunities for authentic
STEM experiences in formal and informal settings is welcome.
The President's fiscal year 2016 budget request for the Department
of Education includes $1.15 billion for the 21st Century Community
Learning Centers program (the same amount available for the previous
fiscal year) and $202.7 million for the Mathematics and Science
Partnerships ($50 million more than the amount appropriated for fiscal
year 2015). I encourage the Subcommittee to continue to support both
programs by providing the requested funding levels.
stem education consolidation and reorganization
With regard to the Federal STEM education consolidation plan first
released by the Administration for fiscal year 2014 and amended in each
of the last two budget requests, I recognize the importance of creating
efficiencies within the Federal Government whenever possible.
Nevertheless, I continue to have serious concerns about a proposal that
would eliminate effective programs that support informal STEM, health,
and environmental learning. Integral Federal investments, including the
SEPA program itself, have been slated for termination in previous
fiscal years. While SEPA now enjoys the support of the Administration,
programs at the National Aeronautics and Space Administration and the
National Oceanic and Atmospheric Administration were not as fortunate
and are, once again, on the chopping block. I sincerely appreciate the
Subcommittee's thoughtful consideration of the harmful effect of the
proposed terminations, and ask you to remain steadfast in your support
of these programs.
about astc and science centers
The Association of Science-Technology Centers is a global
organization providing collective voice, professional support, and
programming opportunities for science centers, museums, and related
institutions, whose innovative approaches to science learning inspire
people of all ages about the wonders and the meaning of science in
their lives. Science centers are sites for informal learning, and are
places to discover, explore, and test ideas about science, technology,
engineering, mathematics, health, and the environment. They feature
interactive exhibits, hands-on science experiences for children,
professional development opportunities for teachers, and educational
programs for adults. In science centers, visitors become adventurous
explorers who together discover answers to the myriad questions of how
the world works--and why. As Members of this Subcommittee know, it is
imperative that we spark an interest in STEM fields at an early age--a
key role for community-based science centers and museums, who often
undertake this effort with the aforementioned support from NIH, IMLS,
and ED, in addition to other Federal agencies.
ASTC works with science centers and museums to address critical
societal issues, locally and globally, where understanding of and
engagement with science are essential. As liaisons between the science
community and the public, science centers are ideally positioned to
heighten awareness of critical issues like agriculture, energy, the
environment, infectious diseases, and space; increase understanding
of--and exposure to--important and exciting new technologies; and
promote meaningful exchange and debate between scientists and local
communities.
ASTC now counts 636 members, including 489 operating or developing
science centers and museums in 45 countries. Collectively, our
institutions garner 95 million visits worldwide each year. Here in the
United States alone, our guests--and your constituents--pass through
science center doors more than 73 million times to participate in
intriguing educational science activities and explorations of
scientific phenomena.
Our centers reach a wide audience, a significant portion of which
are school groups. Here in the U.S., 94 percent of our members offer
school field trips, and we estimate that more than 13 million children
attend science centers and museums as part of those groups each year.
Field trips, however, are truly just the beginning of what science
centers and museums contribute to our country's educational
infrastructure, as: 92 percent offer classes and demonstrations; 90
percent offer school outreach programs; 76 percent offer workshops or
institutes for teachers; 74 percent offer programs for home-schoolers;
67 percent offer programs that target adult audiences; 65 percent offer
curriculum materials; 50 percent offer after-school programs; 34
percent offer youth employment programs; and 22 percent offer citizen
science projects.
conclusion
With this in mind, and while I am fully aware of the significant
budget challenges that face this Subcommittee, Congress, and the
Nation, I hope you will continue to recognize the important educational
offerings science centers and museums make available to students,
families, and teachers, along with the essential Federal support they
receive from NIH, IMLS, and ED.
Again, I respectfully request that you provide $20 million for the
Science Education Partnership Awards program at the National Institutes
of Health; $1.15 billion for the 21st Century Community Learning
Centers program and $202.7 million for the Mathematics and Science
Partnerships program at the Department of Education; and $38.6 million
for the Office of Museum Services at the Institute of Museum and
Library Services. In addition, please continue to closely examine any
proposals that would seek to consolidate and/or reorganize Federal STEM
education programs in an effort to ensure that stakeholder input has
been sought and that proven, successful programs are maintained.
Thank you once again for your strong support for America's science
centers and museums--and for the opportunity to present these views. My
staff and I would be happy to respond to any questions or provide
additional information as needed by the Subcommittee.
[This statement was submitted by Anthony F. (Bud) Rock, President
and Chief Executive Officer, Association of Science-Technology
Centers.]
______
Prepared Statement of the Association of University Programs in
Occupational Health and Safety
On behalf of the Association of University Programs in Occupational
Health and Safety (AUPOHS), an organization representing the 18
multidisciplinary, university-based Education and Research Centers
(ERCs) and the ten Agricultural Centers for Disease and Injury
Research, Education, and Prevention funded by the National Institute
for Occupational Safety and Health (NIOSH), we respectfully request
that the fiscal year 2016 Labor, Health and Human Services
Appropriations bill include level funding of $27.5 million for the
Education and Research Centers and $24 million for the Agriculture,
Forestry and Fishing (AFF) Program within the NIOSH budget.
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, each year
more than 3 million workers are seriously injured on the job, daily, 12
workers die from an 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 Federal agency responsible for supporting education,
training, and research for the prevention of work-related injuries and
illnesses in the United States. It does this in several ways. Some
programs focus upon the most dangerous occupations in the US. Another
NIOSH program aims to provide training to current health professionals
while educating the next generation of professionals. These Education
and Research Centers (ERCs) are regional and national resources for
parties involved with occupational health and safety--industry, labor,
government, academia, and the public. Collectively, the ERCs provide
training and research resources to every Public Health Region in the
United States. ERCs contribute to national efforts to reduce losses
associated with work-related illnesses and injuries by offering:
--Prevention Research.--Developing the basic knowledge and associated
technologies to prevent work-related illnesses and injuries.
--Professional Training.--ERCs support 86 graduate degree programs in
Occupational Medicine, Occupational Health Nursing, Safety
Engineering, Industrial Hygiene, and other related fields to
provide qualified professionals in essential disciplines.
--Research Training.--Preparing doctoral-trained scientists who will
respond to future research challenges and who will prepare the
next generation of occupational health and safety
professionals.
--Continuing Education.--Short courses designed to enhance
professional skills and maintain professional certification for
those who are currently practicing in occupational health and
safety disciplines. These courses are delivered throughout the
regions of the 18 ERCs, as well as through distance learning
technologies.
--Regional Outreach.--Responding to specific requests from employers,
healthcare professionals, and workers 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. For example, between 2000 and
2015, the number of workers 55 years and older will increase 72 percent
to over 31 million. Work related injury and fatality rates increase at
age 45, with rates for workers 65 years and older nearly three times
greater than younger workers. In addition to changing demographics, the
rapid development of new technologies (e.g., nanotechnology) poses many
unanswered questions with regard to workplace health and safety that
require urgent attention. Newly emerging risks, such as Ebola and other
infectious disease outbreaks, require swift responses to the need for
worker protection.
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 NIOSH 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. For example, NIOSH took 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.
In response to risks posed by potential Ebola exposure, ERCs have
delivered educational programs and provided expertise in developing
protocols and policies to prevent worker exposure. In one case, a
single webinar developed for this purpose reached more than 320
company, academic, and government organizations. Additionally, NIOSH is
the Federal agency that is charged with certifying and approving the
respirators that are required to protect U.S. workers.
We need manpower to address these challenges and it is the NIOSH
ERCs that train the professionals who fill key positions in health and
safety programs, regionally and around the nation. And because ERCs
provide multi-disciplinary training, ERC graduates protect workers in
virtually every walk of life.
NIOSH also focuses upon the nation's most dangerous work. People
who work in agriculture, forestry and fishing experience occupational
fatality rates that are 6 times to more than 30 times higher than the
average for American workers. The Agricultural Safety and Health
Centers program was established by Congress in 1990 (Public Law 101-
517) in response to evidence that agricultural workers were suffering
substantially higher rates of occupational injury and illness than
other U.S. workers.
Today the NIOSH Agriculture, Forestry, and Fishing (AFF) Initiative
includes nine regional Centers for Agricultural Disease and Injury
Research, Education, and Prevention 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 for workers in this most vital production sector.
While agriculture, forestry, and fishing constitute one 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 and/or immigrants, part-time, contract and
seasonal labor. Many of these agricultural workers are excluded from
labor protections, including OSHA oversight, on the vast majority of
American farms.
In 2012 the AFF sector had a work-related fatality rate of 22 per
100,000 workers, the highest 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 NIOSH AFF program is not
replicated by any other agency:
--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 NIOSH AFF program.
--While committed to the well-being of farmers, the USDA has little
expertise in the medical or public health sciences. USDA no
longer funds, as it did historically, land grant university-
based farm safety specialists.
--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.
NIOSH Agricultural Center activities include:
--AFF research has shown that the use of rollover protective
structures (ROPS or rollbars) and seatbelts on tractors can
prevent 99 percent of overturn-related deaths. A New York
program has increased the installation of ROPS by 10-fold and
recorded over 140 close calls with no injuries among farmers
who had installed ROPS. 99 percent of program participants said
they would recommend the program to other farmers. Similar
programs are now offered to prevent serious injuries due to
entanglement in other farm machinery.
--Working in partnership with producers and farm owners, the NIOSH
AFF Centers have developed evidence-based solutions for
reducing exposure to pesticides and other farm chemicals among
farmers, farm workers and their children.
--Commercial Fishing had a reported annual fatality rate 58 times
higher than the rate for all U.S. workers in 2009. Research has
shown that knowledge of maritime navigation rules and emergency
preparedness means survival. A NIOSH AFF-funded team produced
an interactive navigation training CD in three languages,
demonstrated the effectiveness of refresher survival drill
instruction, and assisted the US Coast Guard's revision of
regulations requiring commercial fishing vessel captains
complete navigation training.
--The 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.
--New tools and work processes have been introduced and widely
adopted by agricultural producers because they reduce
musculoskeletal injury and pain and at the same time improve
productivity.
--In 2010, the logging industry had a reported fatality rate of 91.9
deaths per 100,000 workers (preliminary data), a rate more than
25 times higher than that of all US workers. NIOSH AFF Centers,
including the Southeast and the Northwest, are uniquely
positioned to ensure the safety of our nation's 86,000 workers
in forestry & logging.
Thank you for the opportunity to present testimony on behalf of the
many individuals committed to working to improve the safety and
wellbeing of others in our communities.
______
Prepared Statement of the Association of Zoos and Aquariums
institute of museum and library services
Thank you Chairman Blunt and Ranking Member Murray for allowing me
to submit testimony on behalf of the Nation's 215 AZA-accredited zoos
and aquariums. Specifically, I want to express my support for the
inclusion of $38.6 million for the Institute of Museum and Library
Services' (IMLS) Office of Museum Services in the fiscal year 2016
Labor, Health and Human Services, Education, and Related Agencies
appropriations bill.
Founded in 1924, the Association of Zoos and Aquariums (AZA) is a
nonprofit 501c(3) organization dedicated to the advancement of zoos and
aquariums in the areas of conservation, education, science, and
recreation. Accredited zoos and aquariums annually see more than 180
million visitors, collectively generate more than $17 billion in annual
economic activity, and support more than 165,000 jobs across the
country. Over the last 5 years, AZA-accredited institutions supported
more than 4,000 field conservation and research projects with
$160,000,000 annually in more than 100 countries. In the last 10 years,
accredited zoos and aquariums formally trained more than 400,000
teachers, supporting science curricula with effective teaching
materials and hands-on opportunities. School field trips annually
connect more than 12,000,000 students with the natural world.
Aquariums and zoological parks are defined by the ``Museum and
Library Services Act of 2003'' (Public Law 108-81) as museums. The
Office of Museum Services awards grants to museums to support them as
institutions of learning and exploration, and keepers of cultural,
historical, and scientific heritages. Grants are awarded in several
areas including educational programming, professional development, and
collections management, among others.
As valued members of local communities, AZA-accredited zoos and
aquariums offer a variety of programs ranging from unique educational
opportunities for schoolchildren to conservation initiatives that
benefit both local and global species. The competitive grants offered
by the IMLS Office of Museum Services ensure that many of these
programs, which otherwise may not exist because of insufficient funds,
positively impact local communities and many varieties of species.
Unfortunately, current funding has allowed IMLS to fund only a
small fraction of all highly-rated grant applications. Despite this
funding shortfall, zoo and aquarium attendance has increased and the
educational services zoos and aquariums provide to schools and
communities are in greater demand than ever. AZA-accredited zoos and
aquariums are essential partners at the Federal, State, and local
levels in providing education and cultural opportunities that adults
and children may otherwise never enjoy.
As museums, zoos and aquariums share the same mission of preserving
the world's great treasures, educating the public about them, and
contributing to the Nation's economic and cultural vitality. Therefore,
I strongly encourage you to include $38.6 million for the Institute of
Museum and Library Services' Office of Museum Services in the fiscal
year 2016 Labor, Health and Human Services, Education, and Related
Agencies appropriations bill.
Thank you.
[This statement was submitted by Jim Maddy, President and CEO,
Association of Zoos and Aquariums.]
______
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 successful careers, I would like to urge you to help support
career and technical education (CTE) through a strong Federal
investment in the Carl D. Perkins Career and Technical Education Act
(Perkins) for fiscal year 2016. The passage of the Bipartisan Budget
Act and subsequent Consolidated Appropriations Act of 2014 helped to
alleviate some of the harmful sequestration cuts that have impacted
important career education and workforce training programs, but more
needs to be done to support our high schools, technical centers,
community colleges and millions of CTE students nationwide.
To ensure that students are equipped with the academic, technical
and employability skills they need for success in the jobs that are
available today, and the careers of tomorrow, I respectfully request
that the subcommittee restore the Perkins Basic State Grant program
(Title I) to the pre-sequestration level of $1.123 billion in the
fiscal year 2016 Labor, Health and Human Services, and Education
appropriations bill.
Perkins is the principal source of Federal support for CTE programs
at secondary and postsecondary institutions across the county. This
Federal investment is crucial to ensuring that students have the
academic, technical and employability skills that are needed for
careers in expanding fields like engineering, information technology,
advanced manufacturing and healthcare. In a rapidly changing job
market, CTE provides students with transferable skills that ensure they
are college-and career-ready, while offering retraining opportunities
to many adult or dislocated workers.
Perkins is the foundational support for CTE program improvement
that is essential to moving our economy forward. However, funding has
not kept pace with the demand for high-quality programs. In fiscal year
2015, Congress appropriated over $140 million less in Perkins grant
funding to States than it did in fiscal year 2010. From fiscal year
2007 through fiscal year 2014, total Perkins grant funding to States
declined by 13 percent (a 23 percent decline when adjusted for
inflation). A recent survey found that 9 out of 10 career and technical
educators report that they rely on Perkins to support their CTE
program, but more than half of CTE educators say their program budget
has decreased in recent years. Perkins funding is an essential
component in allowing education providers to build the capacity
necessary to serve more than 12 million secondary, postsecondary and
adult students nationwide.
The erosion of Perkins funds comes at a time when CTE programs are
experiencing new attention and growth. States are using Perkins funding
to achieve positive results--meeting or exceeding nearly every
accountability target for student performance in areas such as
attainment of academic and technical skills, and transition to further
education or employment. The average high school graduation rate for
students concentrating in CTE programs is 93 percent, compared to a
national adjusted cohort graduation rate of 80 percent. This data is
borne out on the ground where students involved in CTE programs are
more engaged in their education, perform better academically, gain
critical employability skills and earn industry-recognized credentials.
Perkins provides a strong return on our Federal investment by fostering
an educated and highly skilled workforce that delivers direct benefits
to American employers, further strengthening the economy through
productivity and innovation.
The Obama Administration's fiscal year 2016 budget request includes
the addition of $200 million for a CTE Innovation Fund within the Basic
State Grant, which would support the proposed American Technical
Training Fund by providing competitive grants to support the
development and operation of innovative, evidence-based job training
programs in high-demand fields. The request for a $2 million increase
for CTE National Programs would provide technical assistance and
evaluation support for projects under the American Technical Training
Fund proposal. However, the Administration's budget, once again, fails
to provide any additional funding for the formula Perkins Basic State
Grant program. It is the position of ACTE that limited resources for
education and job training are better directed to proven, formula-
driven programs, and we remain committed to expanding equitable access
to high-quality CTE. Congress must fulfill its commitment to America's
students, employers and educators by increasing its investment in CTE
through Perkins.
A broad coalition of Senators has submitted a letter to this
subcommittee expressing support for funding CTE. This letter echoes
ACTE's request that Perkins Basic State Grant funding be restored to at
least $1.123 billion in fiscal year 2016 Labor, Health and Human
Services, and Education appropriations bill. ACTE strongly supports
this effort and we reaffirm the message that CTE works to ensure that
students have the academic and technical skills necessary for true
college and career readiness--and that Perkins funding is a key
component to student success.
Thank you for your continued leadership and for your thoughtful
consideration during the appropriations process. We look forward to
working with the subcommittee in a bipartisan fashion to make building
our investment in CTE a top priority.
[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: First, under the
Centers for Disease Control and Prevention (CDC) National Center for
Emerging and Zoonotic Infectious Diseases: $501 million for Core
Infectious Diseases including $264 million for the new Antibiotic
Resistance Solutions initiative, $32 million for the National
Healthcare Safety Network (NHSN), and $30 million for the Advanced
Molecular Detection (AMD) Initiative. Additionally, we request $34
million for HAI research activity conducted by the Agency for
Healthcare Research and Quality (AHRQ) and $4.6 billion for the
National Institutes of Health/National Institute of Allergy and
Infectious Diseases (NIAID).
HAIs are among the leading causes of preventable death in the
United States. In hospitals alone, CDC estimates that one in 25
hospitalized patients has an HAI, totaling approximately 722,000
infections and 75,000 deaths in 2011. Further, a growing number of
infections are resistant to antibiotics causing an estimated two
million illnesses and approximately 23,000 deaths annually.
Antibiotics, created to save lives, are now contributing to patient
deaths through misuse and overprescribing that promotes the emergence
of highly resistant bacteria and leads to deadly adverse events. AR is
one of the most critical public health and patient safety threats
facing our Nation. The actions we take now will determine if we will
return to an era where even a small cut could prove fatal.
Centers for Disease Control and Prevention (CDC)
We urge you to support the CDC Coalition's request for $7.8 billion
in fiscal year 2016 for the CDC's ``core programs.'' We are pleased
that the President's fiscal year 2016 budget proposal would increase
the CDC's budget authority by $141 million when compared with fiscal
year 2015. We urge Congress to prioritize funding for all the
activities and programs supported by CDC that are essential to protect
the health of the American people and reduce healthcare costs.
We urge you to support $32 million for CDC's National Healthcare
Safety Network (NHSN) and Prevention Epicenters Program. This request
represents a $14 million increase over the fiscal year 2015 enacted
level for the NHSN to support HAI prevention and reporting efforts to
more than 17,000 healthcare facilities across the spectrum of care.
This will enable CDC to conduct applied research on interventions for
infection prevention and continue to provide data for national HAI
elimination goals and targeted HAI prevention initiatives. This funding
level will also allow for the extension and implementation of the NHSN
Antimicrobial Use and Resistance Module to track antibiotic use in
healthcare settings and provide real time data about antibiotic use and
trends.
NHSN data and the Prevention Epicenters Program, a collaboration
between CDC and academic medical centers that conduct innovative
infection prevention and control research, serve as the foundation for
the development of pioneering, evidence-based HAI prevention
strategies. Consistent, scientifically sound data reported at the State
and Federal level are necessary to ensure that accurate data are
available to evaluate progress related to the National Action Plan to
Prevent HAIs as well as to support transparency to the public, allowing
for equitable comparisons between facilities.
Since 2008, the cumulative impact of CDC infection prevention
resources, guidelines and programs has contributed to significant
reductions of HAIs in healthcare settings, including a 44 percent
reduction in central line-associated bloodstream infections, a 31
percent reduction in healthcare-associated invasive MRSA infections,
and a 20 percent reduction in surgical site infections.
Despite these improvements to patient safety, the significant
increase in facility users, and the importance of the system's
contributions to reducing HAIs and combating AR, funding for NHSN and
the Prevention Epicenters has been flat since fiscal year 2010.
APIC and SHEA request $501 million for Core Infectious Diseases to
include funding for Healthcare-Associated Infections, Antibiotic
Resistance, and Emerging Infections Program. The Emerging Infections
Program (EIP) helps States, localities and territories in detecting and
protecting the public from known infectious disease threats in their
communities while maintaining our Nation's capacity to identify new
threats as they emerge. Increased funding for Core Infectious Diseases
will expand the number of EIP sites from 10 to 20. Beyond surveillance,
prevention, and control of emerging infectious diseases, EIP provides
sufficient flexibility for emergency response and addresses new
problems as they arise; develops and evaluates public health
interventions, and ultimately transfers what is learned to public
health agencies and healthcare providers.
We support the $264 million request in the President's budget for
the Antibiotic Resistance Solutions Initiative. This comprehensive
initiative will establish State AR prevention programs in all 50 States
and 10 large cities to protect patients and communities through the
rapid identification of outbreaks. The initiative will improve response
time to outbreaks of infectious disease threats by creating a network
of AR regional labs that use cutting edge methods to track and mitigate
disease spread. Pharmaceutical companies and researchers will be able
to test their antibiotics against isolates maintained in an AR isolate
bank established by the AR Solutions Initiative. The isolate bank will
be able to provide a complete collection of current resistant threats
and keep pace with mutations.
The AR Solutions Initiative will incorporate NHSN antibiotic use
information to improve antibiotic prescribing practices, which
contributes to the rise of resistant pathogens. Moreover, we strongly
support CDC's focus on the implementation of antibiotic stewardship
programs in all healthcare settings. The initiative anticipates
outcomes resulting in a reduction of carbapenem-resistant
Enterobacteriaceae (CRE) and Clostridium difficile, two pathogen groups
labeled as urgent threats by CDC in 2013, by 60 percent and 50 percent
respectively. It is critical that Congress prioritize this rapidly
growing threat to public health and patient safety in our Nation and
around the world.
We urge your continued support of the President's $30 million
request 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 (AHRQ)
We request your support of the proposed investment of $34 million
for AHRQ's HAI research activity. These grants ($17.8 million) and
contracts ($16.2 million) will advance our knowledge about effective
approaches to reducing HAIs while promoting the implementation of
proven methods for preventing HAIs. In addition, contracts funded by
the HAI budget will accelerate the nationwide implementation of the
Comprehensive Unit-based Safety Program (CUSP), an evidence-based
safety framework for improvement in culture, teamwork, communication,
and patient-care practices.
To date, widespread adoption of the CUSP approach in over 1,000
intensive care units has reduced the incidence of central line-
associated bloodstream infections by 41 percent within those units,
saving 500 lives and $36 million in excess costs. In spite of notable
progress, there remains work to be done toward the goal of HAI
elimination.
National Institutes of Health (NIH)/National Institute of Allergy and
Infectious Diseases (NIAID)
APIC and SHEA support the $4.6 billion requested by the
Administration for fiscal year 2016 for the National Institute of
Allergy and Infectious Diseases (NIAID) within NIH. The emergence of
diseases such as chickungunya, enterovirus-D68, and the re-emergence of
Ebola illustrates the need for critical research that can lead to the
discovery of new therapies, new diagnostic approaches, and new
preventative strategies.
NIAID's long-standing basic and translational research on Ebola and
other hemorrhagic fever viruses has yielded some of today's most
promising therapeutic candidates. Additionally, NIAID is addressing the
growing problem of antimicrobial resistance (AR) through basic research
to understand how microbes acquire and transmit resistance genes and
clinical efforts including studies to optimize the use of currently
licensed drugs, combination therapies, and alternative, non-antibiotic
treatment strategies. Severe economic disincentives have caused a mass
exodus of private companies from the antibiotics market, making
federally funded research in this area more critical than ever. We are
pleased that the fiscal year 2016 budget request would provide adequate
investment in emerging infectious diseases research.
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.
______
Prepared Statement of Komala Balakrishnan
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Jill R. Barker
I am writing as the parent of two adult sons with profound physical
and mental disabilities.
I urge the Subcommittee to include language in its Labor, HHS, and
Education and Related Agencies bill that expressly prohibits the use of
appropriations for any HHS program in support of activities which
attempt to downsize or close a Medicaid-licensed Intermediate Care
Facility for Individuals with Intellectual Disabilities (ICF/IID) or
any other Medicaid-licensed settings serving people with intellectual
disabilities, unless the purpose of the action is to remedy systemic
abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed too large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Jill Barnes
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mary J. Beck
I am submitting this because I want you to understand that your
constituency wants and needs your help in protecting some of the most
vulnerable people in this country--people with intellectual
disabilities. These people need the best care we can give them. Often,
institutionalized care is the best alternative for our retarded
citizens because it provides better care and ensures better
accountability and more efficient use of resources than other
alternatives.
I urge that the Subcommittee to include language in its Labor, HHS,
and Education and Related Agencies bill that expressly prohibits the
use of appropriations for any HHS program in support of activities
which attempt to downsize or close a Medicaid-licensed Intermediate
Care Facility for Individuals with Intellectual Disabilities (ICF/IID)
or any other Medicaid-licensed settings serving people with
intellectual disabilities, unless the purpose of the action is to
remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Candice Bell
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Diane Booher and Mark Booher, Ph.D.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Kathleen Borniger
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
My brother died 1 year ago at the age of 65. He had been a resident
at KNI since 1960 and had been in 2 other stated institutions prior to
that, since the age of 6. I am a registered Nurse and seeing the care
that Paul received gave great testament to the commitment and skill of
his caregivers at KNI in Topeka. He would never have had the long life
he had if he had been in a community based home. He lived with his
community of caregivers and friends. It would be a tragedy of
monumental proportion to place these precious, medically fragile souls
in a small community-based home that lacked the ability to give 24 hour
medical care and observation. Not only a tragedy but inhumane. Please
do not let this happen.
______
Prepared Statement of Sally Boyd
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed too large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Cheryl O. Brown
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
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 2016 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.
Administration for Community Living.--BIAA respectfully urges you
to relocate the Federal Traumatic Brain Injury (TBI) State Grant
Program and Protection and Advocacy Systems Grant Program from the
Maternal and Child Health Program of the Health Resources and Services
Administration to the Administration for Community Living (ACL) in
fiscal year 2016 appropriations. The TBI Act Reauthorization, S. 2539,
which was signed by President Obama on November 26, 2014, authorized
appropriations for these critical TBI grant programs through 2019 and
gave authority to the Secretary of the U.S. Department of Health and
Human Services, with discretion on where to locate the TBI grant
programs.
The TBI State Grant and Protection and Advocacy Grant Programs are
designed to increase access to treatment and community-based services
for individuals who are injured, protect the rights of those
individuals, and to improve service system coordination within States
and territories. Because people of all ages sustain TBIs and because
the injury can negatively impact health and function across the
lifespan, we believe it is in the best interests of individuals and
families to move the TBI State Grant and Protection and Advocacy
Systems Grant Programs to ACL.
As you know, several disability programs formerly housed in the
U.S. Department of Education will move to ACL by July 2015 as a result
of the Workforce Innovation and Opportunity Act of 2014. These programs
include: the TBI Model Systems, the Research and Training Center on TBI
Community Reintegration, the Independent Living Center program, and the
Assistive Technology programs. Locating the TBI State Grant and
Protection and Advocacy Grant Programs would only further enhance the
existing collaboration and coordination among them. In addition, we
believe placing the TBI State Grant and P&A Grant programs within ACL
would help to:
--integrate TBI into the HHS community long-term services
initiatives, including the single point of entry through Aging
and Disability Resource Centers;
--promote collaboration with Administration on Aging (AoA) on falls-
related TBIs among older adults and the lifespan respite care
program;
--include TBI in the veterans initiatives between HHS and Department
of Veterans Affairs to support Home and Community-Based
Services (HCBS) for veterans and returning service members; and
--coordinate/enhance services for individuals with TBI who may also
be eligible for services provided through State Intellectual/
Developmental Disabilities systems and/or could benefit from
Administration on Intellectual/Developmental Disabilities
(AIDD) initiatives to improve education, employment outcomes,
voting and self-advocacy.
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 the President's fiscal year 2016 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 on 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 program represents an already
existing vital national network of expertise and research in the field
of TBI, and weakening this program would have resounding effects on
both military and civilian populations. The TBI Model Systems are the
only source of non-proprietary longitudinal data on what happens to
people with brain injury. They are a key source of evidence-based
medicine, and serve as a ``proving ground'' for future researchers.
In order to make this program more comprehensive, Congress should
increase funding in fiscal year 2016 for NIDILRR's TBI Model Systems of
Care program, in order to add one new Collaborative Research Project.
In addition, given the national importance of this research program,
the TBI Model Systems of Care should receive ``line-item'' status
within the broader NIDILRR budget. Specifically, the Congressional
Brain Injury Task Force requests increased funding by $13 million over
the next 6 years to support the TBI Model Systems program:
--Increase funding for the National Data and Statistical Center by
$100,000 annually to allow all participants to be followed;
when re-competed, increase from $625,000 to $1 million
annually;
--Increase funding for centers by $150,000 annually from the current
average of $437,500;
--Increase the number of competitively funded centers from 16 to 18;
and
--Increase the number of multicenter TBI Model Systems Collaborative
Research projects from one to five, each with an annual budget
of $1.5 million (current funding is $600,000 each).
We ask that you consider favorably these requests for the
Administration for Community Living, the CDC, and the NIDILRR's TBI
Model Systems Program to further data collection, increase public
awareness, improve medical care, assist States in coordinating
services, protect the rights of persons with TBI, and bolster vital
research.
______
Prepared Statement of Helen R. Burns
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Harris T. Capps
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
Sincerely,
Harris T. Capps
Parent of a son with significant Intellectual and Developmental
Disabilities
______
Prepared Statement of Donna M. Carmical
Members of the subcommittee thank you for taking the time to
consider public testimony regarding the National Institute of Health
(NIH) 2016 budget request.
My name is Donna Carmical, I live in Fredericksburg, VA. On August
26, 2009, my son and his wife became the proud parents of beautiful
twin boys. Six months later, on March 9, 2010 our lives were forever
changed when the oldest of the twins, Declan Carmical, was diagnosed
with a rare form of pediatric cancer called AT/RT (atypical teratoid/
rhabdoid tumor). Hearing that your child/grandchild has cancer is
devastating but hearing Doctor's say that there are no treatments, no
cures, no hope is incomprehensible. Doctor's advised that we should
take our beautiful Declan home, make him comfortable, and that he would
be dead in a few weeks. There are no words to describe the shock of
this moment and the days and weeks following. After a brave and
courageous battle that included several brain surgeries, removal of his
kidney, six weeks of proton radiation and many rounds of poisonous
chemo, our sweet Declan lost his battle 8 days before his first
birthday. If you have never watched a child die you are fortunate, I
pray you never experience this horror, the torturous memories will be
with me forever.
This testimony is not about Declan, but because of him and what we
learned about the insidious world of pediatric cancer. What we learned
about the treatments kids endure and the statistic no one talks about,
that only about 20 percent of children survive pediatric cancer
treatments without significant impact. Each decade we lose
approximately 27,000 children to cancer in the U.S., decade after
decade, and there is no reason to believe that this will change without
significant investment of Federal research funding. Childhood cancer
research is an area sadly neglected as budget decisions are made by the
National Institute of Health (NIH). NIH continues to lamely defend
their lack of investment by saying that research in adult cancers
brings benefits to childhood cancers, there are insufficient resources
to increase funding levels for childhood cancer research and a myriad
of other excuses from the brilliant researchers that make agency budget
decisions. It is hard to believe that NIH has a true reality of the
torturous treatments kids endure, the side effects, the burden of this
disease and that the thousands of kids that die each year are a
negligible cost to society.
I myself lacked a reality about childhood cancer and its impacts. I
gave to St. Jude's for over 30 years, with the belief that St. Jude's,
other organizations and our Government were doing everything possible
to bring the best possible treatments to kids with cancer. Like so many
Americans, I was blissfully ignorant and I was dead wrong. Our children
are paying the price for this ignorance and apathy. They have no voice,
no lobby, no money, and although kids represent 26 percent of the U.S.
population, they can't vote and it seems their needs fall to the bottom
of the budget pile, especially where funding decisions are concerned.
Our children deserve to be a priority as Federal research dollars,
taxpayer dollars, are distributed and decisions are made about how the
billions of research dollars are allocated.
Childhood cancer is the #1 disease related killer of children in
the U.S. The National Cancer Institute (NCI) says that childhood cancer
is rare. They indicate that annually approximately 16,000 kids are
diagnosed with pediatric cancer and that childhood cancer is on the
rise. The fact that 1 in 285 children will be diagnosed with cancer is
not acceptable statistic, especially in terms of deciding that this is
an area that doesn't need real investment of research funding.
Approximately 1 in 5 children diagnosed with cancer are terminal on
diagnosis and 2 out of 3 children suffer life altering impacts as a
result of treatments. In the U.S. alone, nearly 2,000 children die each
year as a result of pediatric cancer.
According to NCI there are currently 380,000 survivors of childhood
cancer in the U.S., they project this number will increase over time.
Adult chemotherapy is proven to help cure cancer with many side
effects. Even though these treatments are approved for children, many
treatments are the same as those approved for adult cancers but
provided at a lower dose for kids. As StandUp2Cancer reports on their
webpage--``While childhood cancer research often yields discoveries
that benefit adults with cancer, the opposite is less common. Children
are not simply smaller versions of adults, and childhood cancers are
very different from the cancers that strike adults.''
Many children suffer life altering impacts of treatment. If they
pass the 5 year survival rate--they are statistically considered cured;
yet, many children suffer long term impacts, secondary cancers, heart
problems, infertility, learning disabilities, stunted growth, hearing
problems and more. The increase in survivors, burden of disease,
growing number of survivors, as well as number of deaths each year are
a great cost to society in so many ways. An investment in childhood
cancer research could deliver big results--pediatric protocols that
might result in cures, less invasive treatments, reduction in life
altering impacts, etc. In addition, as some in the medical community
have indicated, there is a belief that childhood cancer research has
the potential to bring knowledge about adult cancer research.
Childhood cancer is not one disease, there are 16 major types of
cancer and over 100 subtypes. Many of these childhood cancers, like
DIPG, AT/RT, receive little to no funding for research. NCI indicates
that survival rates for a few childhood cancers like acute
lymphoblastic leukemia (ALL) have improved dramatically over the past
decades, ironically this is due to the investment in research. NIH
makes little mention of statistics regarding the deadly childhood
cancers where for decades there has been little to no research. There
are many other statistics related to childhood cancer; yet, despite
compelling statistics, childhood cancer is vastly and consistently
underfunded and virtually ignored in terms of Federal research funding.
Ironically many pediatric cancer organizations raising funds for
childhood cancer research have been started by families who have lost a
child to pediatric cancer. These families are trying to fund research
because their eyes have been opened to the lack of childhood cancer
research funding and the life changing consequences to society.
Families desperately want other kids to have cures denied to their own
children. The thing is that even the largest organizations are raising
tens of millions of dollars, compared to Federal dollars, the little
money that is raised by private organizations means that potential
cures are probably decades into the future. Childhood cancer research
needs a huge investment, an investment of billions that can only be
accomplished by putting our tax dollars to work for kids.
Following the AIDS pandemonium in the 1980s, Congress provided
billions for AIDs research. Dr. Collins has testified that success with
HIV/AIDS research ``may enable us to envision the first AIDS free
generation since the virus emerged more than 30 years ago.'' This
success would not have been possible without the substantial investment
of dollars in AIDS research, an investment of tens of billions of
taxpayer dollars over the last few decades. Since the turn of the
century, approximately 30,000 children have lost their battle with
childhood cancer. Today 10 percent of NIH funding, approximately $3
billion each year, is devoted to AIDS research, that's almost $100
billionillion since the 1980s. This is not to say that AIDS funding is
wrong, no doubt there has been tremendous accomplishment in this area,
but to illustrate the impact of significant investment. NIH has asked
for additional investment for AIDS in 2016, while continuing to ignore
childhood cancer research. I personally would like to see transparency,
a cost-benefit analysis of this continued amount of funding, what kind
of results are expected for this significant investment year after
year.
Currently the NCI offers that it provides around $200 million of
its $5 billion budget to childhood cancer research. Childhood cancer
research is not a line item in the NIH/NCI budget and rarely mentioned.
The $200 million level identified by NCI as benefitting childhood
cancer research, is not actually dedicated to childhood cancer research
projects. As far as I can determine by looking at the public
information, the $200 million is made up of percentages of grant
projects that estimate impact on childhood cancer. For example, an
Alzheimer grant for $100 thousand might say that 5 percent of the
projected benefit might be for childhood cancer, so NCI indicates
$5,000 goes towards childhood cancer research. Even though Congress has
suggested that NCI increase this funding level over the past few years,
NCI has chosen to mostly ignore this ``suggestion.'' In his testimony,
Dr. Varmus has offered that they could do more only if Congress
provides more funding. It is unclear to me how decision-makers at NIH/
NCI can ignore the fact that only Congress has the authority to decide
what programs are funded and the funding levels. It would be
interesting to see how much of the NIH funding over the past decade has
been dedicated to childhood cancer research, their goals, objectives
when it comes to childhood cancer research and results achieved.
As reported by The Atlantic in a January 2013 article, ``there is
not enough funding for childhood cancer, specifically. The National
Cancer Institute, a government organization, provides funding for
researchers, but only 10 percent of them can move forward with their
findings due to budget cuts. Most of the financial support researchers
receive is from philanthropists. In the meantime, research that could
benefit children on an individual level stays in the lab, and doctors
prescribe the same regimens that can be successful, but can also hurt
the patient in several ways. Researchers say they are working hard to
discover new theories and treatments, but they feel they are being held
back.'' The article goes on to quote, Dr. William Carroll, researcher
and director of the cancer institute at New York University saying,
``Ninety-six percent of grants (sic childhood cancer) don't get funded
. . . There's no doubt there's less funding available, and it's driving
people out of the field.''
NIH has requested a billion dollar increase for 2016. Their
documents indicate that key investments are for Alzheimer's research,
Precision Medicine Initiative, Antimicrobial Resistance, AIDS, the
Brain initiative, etc. Changes from the 2015 enacted budget to the 2016
President's Budget request indicates this billion dollar investment
provides on average a 3 percent increase for every institute/center
across NIH. I think the American public would agree childhood cancer
research deserves to be a priority in the budget. I would love to see
Congress provide that $1 billion to NIH but legislate that these
dollars would go to childhood cancer research. Even a negligible trim
to every line item in the NIH budget with that amount going to
childhood cancer research, could make significant funds available for
childhood cancer research. This is not really about more money, this is
about making childhood cancer research a priority.
With all due respect to the wonderful work that NIH does, the
Director of NIH has spoken about the budget stressor put on scientific
opportunities, the throwing away of ``innovative, talented research
proposals'' and the ``serious risk of losing the most important
resource we have, which is this brain trust, the talent and creative
energies of this generation of scientists.'' I would counter that many
childhood cancer research proposals are thrown away due to the lack of
Federal research funding and that we have no idea about the potential
brain trust of the thousands of children lost and maimed each year
because of the decision that childhood cancer research is not a
priority. No parent should have to hear the words, there has been no
research, there are no cures, treatments or protocols, take your child
home, make him comfortable and in a few weeks your child will be dead.
This happens every day. The diagnosis for AT/RT and other deadly
pediatric cancers has not changed much in the past 30 years because
this childhood cancer is not worthy of research. Our children deserve
better.
I'm nobody special, just a mother and grandmother. I understand
that I don't know much compared to the wonderful scientists at NIH. I
understand that the budget process is hard work for the committees, and
resources are limited. But my experience over the past 5 years compels
me to fight for kids. I can't do anything to change what happened to
our sweet Declan, but I believe research will result in more funding
for those deadly childhood cancers. Much like the prognosis has changed
for ALL over the past decades, I believe research could provide
pediatric treatments and protocols that will offer cures to children
like Declan in the future. We can't keep condemning these kids to death
year after year and do nothing because of money.
I hope you will agree that at least some of what I'm saying has
merit and consider there is a huge need to fund childhood cancer
research. Making childhood cancer research a priority in the Federal
budget process would be a tremendous legacy for Congress and has great
potential to give children the cures and hope they deserve.
Thank you for the opportunity to offer my thoughts.
______
Prepared Statement of the Centers for Disease Control and Prevention
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 the
individual programs that it funds. Given the challenges and burdens of
chronic disease and disability, public health emergencies, new and
reemerging infectious diseases and other unmet public health needs, we
urge a funding level of $7.8 billion for CDC's programs in the Senate's
fiscal year 2016 Labor, Health and Human Services, Education and
Related Agencies Appropriations bill. We are pleased President Obama's
fiscal year 2016 budget request would increase CDC's program level by
$141 million over fiscal year 2015. The president's budget provides
additional funding for several important new and existing programs and
initiatives such as combating antibiotic resistance, preventing
prescription drug overdose, viral hepatitis, the National Healthcare
Safety Network, domestic HIV/AIDS, global disease prevention, violence
prevention and surveillance, climate change and other important
programs. Unfortunately, the president's budget also cuts or completely
eliminates other important programs such as the REACH program, the
Preventive Health and Health Services Block Grant, cancer prevention
and control, immunizations, environmental health tracking and others.
These cuts will reduce the ability of CDC and its State and local
grantees to investigate and respond to public health emergencies,
ensure adequate immunization rates and track environmental hazards. We
are pleased that the president's budget would fully allocate the
Prevention and Public Health Fund for public health and prevention
activities. In fiscal years 2014 and 2015, Congress fully allocated the
fund in both omnibus spending bills and we urge you to once again
ensure the fund is fully allocated for public health programs to reduce
chronic diseases and help restrain the rate of growth in private and
public healthcare costs.
CDC is a key source of funding and technical assistance for State
and local programs that aim to improve the health of communities. CDC
funding provides the foundation for State and local public health
departments, supporting a trained workforce, laboratory capacity and
public health education communications systems.
CDC serves as the command center for the Nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the prevention and control of Ebola in West Africa and
detecting and responding to cases in the U.S., to monitoring and
investigating the ongoing multi-State measles outbreak to pandemic flu
preparedness, 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.
CDC serves as the lead agency for bioterrorism and public health
emergency preparedness and must receive sustained support for its
preparedness programs to meet future challenges. We urge you to provide
adequate funding for CDC's emergency preparedness and response
activities.
The development of antimicrobial resistance is occurring at an
alarming rate and far outpacing the struggling research and development
of new antibiotics. We urge you to support the president's request for
the CDC Antibiotic Resistance Initiative which would build prevention
programs in all 50 States and 10 large cities, utilizing evidence-based
approaches to stop the spread of drug-resistant bacteria and preserve
the effectiveness of existing antibiotics. The initiative also supports
a new network of regional labs to improve tracking of and response to
outbreaks of serious and potentially deadly bacteria.
Heart disease is the Nation's No. 1 killer. In 2013, over 611,000
people in the U.S. died from heart disease, accounting for nearly 25
percent of all U.S. deaths. More males than females died of heart
disease in 2013, 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 2013, nearly 129,000 people died of stroke,
accounting for about one of every 20 deaths. CDC's Heart Disease and
Stroke Prevention Program, WISEWOMAN, and Million Hearts work to
improve cardiovascular health.
Cancer is the second most common cause of death in the U.S. More
than1.6 million new cancer cases and 589,430 deaths from cancer are
expected in 2015. In 2011 the direct medical costs of cancer in the
U.S. were $88.7 billion. CDC's 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. CDC also funds grants to all 50 States to develop
comprehensive cancer control plans, bringing together a broad
partnership of public and private stakeholders to set joint priorities
and implement specific cancer prevention and control activities
customized to address each State's particular needs. Unfortunately, the
president's budget would cut or eliminate several important cancer
prevention and control programs and we urge you to restore this
critical funding.
An estimated 443,000 people die prematurely every year due to
tobacco use. CDC's Office of Smoking and Health funds important
programs and education campaigns such as the Tips From Former Smokers
campaign that help to prevent tobacco addiction and provide resources
to encourage smokers to quit. We must continue to support these vital
programs to reduce the enormous health and economic costs of tobacco
use in the U.S.
Of the 29.1 million Americans who have diabetes, more than 8
million cases are undiagnosed. In 2012, about 1.7 million people aged
20 years or older were newly diagnosed with diabetes. Diabetes is the
leading cause of kidney failure, nontraumatic lower-limb amputations,
and new cases of blindness among adults in the U.S. The total direct
and indirect costs associated with diabetes were $245 billion in 2012.
The Division of Diabetes Translation funds critical diabetes
prevention, surveillance and control programs.
Obesity prevalence in the U.S. remains high. While the obesity
rates among children between the ages of 2-5 have significantly
decreased over the past decade, more than one-third of adults are obese
and 17 percent of children are obese. Obesity, diet and inactivity are
cross-cutting risk factors that contribute significantly to heart
disease, cancer, stroke and diabetes. CDC funds programs to encourage
the consumption of fruits and vegetables, encourage sufficient exercise
and develop other habits of healthy nutrition and physical activity.
Arthritis is the most common cause of disability in the U.S.,
striking more than 52 million Americans of all ages, races and
ethnicities. CDC's Arthritis Program plays a critical role in
addressing this growing public health crisis and working 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 1.1 million Americans are living
with HIV, including 14 percent who are undiagnosed. The number of
people living with HIV is increasing as new drug therapies are keeping
HIV-infected persons healthy longer and dramatically reducing the death
rate. Prevention of HIV transmission is the best defense against the
AIDS epidemic that has already killed an estimated 658,507 in the U.S.
and is devastating populations around the globe.
Sexually transmitted diseases continue to be a significant public
health problem in the U.S. Nearly 20 million new infections occur each
year. CDC estimates that STDs, including HIV, cost the U.S. healthcare
system almost $16 billion annually. An adequate investment in CDC's STD
prevention programs could save millions in annual healthcare costs in
the future.
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 are an
essential part of the Nation's statistical and public health
infrastructure and must be adequately funded.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. Influenza vaccination levels remain low for adults.
Levels are substantially lower for pneumococcal vaccination among
adults as well, with significant racial and ethnic disparities in
vaccination levels persisting among the elderly. 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, $10.20 is saved in direct and indirect
costs. An estimated 20 million cases of disease and 42,000 deaths are
prevented each year through timely immunization. We urge you to restore
the president's proposed cuts to the Section 317 immunization program.
Injuries are the leading causes of death for people ages 1-44.
Unintentional injuries and violence, such as older adult falls, motor
vehicle traffic accidents, prescription drug overdose, child
maltreatment and sexual violence account for approximately 31 million
emergency department visits each year. Annually, injury and violence
cost the U.S. approximately $406 billion in direct and indirect medical
costs. The National Center for Injury Prevention and Control works to
prevent injuries and minimize their consequences by researching the
problem, identifying the risk and protective factors, developing and
testing interventions and ensuring widespread adoption of proven
prevention strategies. We urge you to support the president's request
for increased funding for initiatives that work to reduce injury and
violence-related injury and death such as the National Violent Death
Reporting System and gun violence prevention research.
Prescription drug overdose is an ongoing problem in the U.S.
killing more than 145,000 over the past decade. We urge you to support
the president's request for drug overdose prevention funding that would
allow all 50 States to participate in CDC's PDO Prevention for States
program to undertake efforts to prevent and reduce prescription drug
and heroin overdose deaths.
Birth defects affect one in 33 babies and are a leading cause of
infant death in the U.S. Children with birth defects who survive often
experience lifelong physical and mental disabilities. Over 500,000
children are diagnosed with a developmental disability and it is
estimated that up to 57 million people in the U.S. currently live with
a disability. The National Center on Birth Defects and Developmental
Disabilities conducts important programs to prevent birth defects and
developmental disabilities and promote the health of people living with
disabilities and blood disorders and we urge you to fund the center at
the president's requested level.
The National Center for Environmental Health works to protect
public health by helping to control asthma, protecting from threats
associated with natural disasters and climate change and reducing
exposure to lead and other environmental hazards. To ensure it can
carry out these vital programs, we ask you to support adequate funding
for NCEH. We urge you to support the president's request for increased
funding for the Climate and Health Program and to restore the proposed
cuts to the Environmental and Health Outcome Tracking Network.
We also urge you to restore the proposed elimination of the
Preventive Health and Health Services Block Grant and the Racial and
Ethnic Approaches to Community Health program in the president's
budget. The REACH program plays a critical role in achieving health
equity by closing the existing racial and ethnic gaps in health status.
The PHHS Block Grant provides flexible resources to States to allow
them to invest in public health and prevention activities that meet the
unique needs of their communities.
In order to meet the many ongoing public health challenges outlined
above, we urge you to support our fiscal year 2016 request of $7.8
billion for CDC's programs.
[This statement was submitted by Donald Hoppert, Director,
Government Relations, American Public Health Association.]
______
Prepared Statement of the Chalkey Family
Good day Committee Members!
We are submitting this written testimony urging the Subcommittee to
include language in its Labor, HHS, and Education and Related Agencies
bill that expressly prohibits the use of appropriations for any HHS
program in support of activities which attempt to downsize or close a
Medicaid-licensed Intermediate Care Facility for Individuals with
Intellectual Disabilities (ICF/IID) or any other Medicaid-licensed
settings serving people with intellectual disabilities, unless the
purpose of the action is to remedy systemic abuse.
We are the Chalkey family: Gary (father), Christine (mother) and
three boys Cody, 24; Jacob, 20; and Blake 17. We reside in Streator,
IL. What the few committee members are deciding today will have a dire
consequence, impacting and affecting the lives of millions of American
families. The American families affected will not only be those who are
struggling to care for a family member with special needs but also the
millions of tax payers who believe their hard-earned tax money is being
spent justly and fairly to care for the most vulnerable and frail of
all our society; those with Developmental and Physical Disabilities.
Our son, and brother, Jacob, has a very rare developmental
disability. He is one of 18 in the world with what is called bi-lateral
periventricular nodular heterotopias, hippocampal malformation and
cerebellar hypoplasia syndrome.
Because of Jacob's severe brain malformation and life-threatening
seizure disorder, which was diagnosed at 8 months, medical
professionals predicted he may never walk, talk or live past age two.
Well, long story short, and 20 years later, Jacob did walk, talk,
learn to read and write, and is now participating in high school track,
bowling, cross country, singing in the school choir and continuing to
amaze us all with what he accomplishes.
Jake is the oldest living survivor, and according to his research
neurologist, Dr. William Dobyns from Seattle Children's Hospital,
Washington, `` Jacob is doing remarkably well and better than the
others'' with his rare disorder.
As you can see Jacob and others with DD have differing abilities,
situations and circumstances that are all unique. An individual
approach should be applied, and all residential choices preserved and
offered, because even the best of medical professionals can never
accurately predict an outcome or future.
Currently, Jacob lives at home with his family and actively
participates in his community. But realistically, because of the
severity of his epilepsy, each seizure can cause permanent damage or
death. Each day, and each seizure, leaves us living in uncertainty, and
not knowing what today or tomorrow may bring. We are living a real life
limbo.
Although we are uncertain of Jacob medical condition and our
future, we are certain of this--denying all choices out lined under the
Olmstead Decision is creating a hell on earth for the many who need,
these real-life options, and individualized level of medical and
personal care provided in a state operated developmental center or
(ICF-IID).
Additionally, IL, and many other states, holds a last place ranking
for providing community services and supports for those with DD. In IL
alone, we have over 24,000 children and adults on a state registry list
waiting to get necessary services and help. Over 6,000 are classified
in emergency situations in need of basics, like shelter, food and
medical care.
What civilized society, and truly understanding and compassionate
legislator or professional, would attempt to close state operated homes
for the disabled and place them on a list or into the over-burdened,
under-served community supports system? Realistically, we should not
close one more SODC until we fix the problems and shortages of services
and supports provided in these community programs.
To deny the reality my family faces, and those currently residing
and needing the care provided in SODCs, is one of the greatest
injustices, discriminations and sins against humanity.
We are asking you to uphold and support all the choices outlined in
the Olmstead Decision. The fact is that no two people with DD are the
same and an individualized approach to residency needs to be followed;
whether it is 24-hour institutionalized nursing care (SODC, ICFs) or
community residency and supports. And, more importantly those with DD,
and their families and care takers, need be included in making the best
and most appropriate of these life decisions.
We support VOR's testimony, and any other groups, upholding and
preserving the Olmstead Decision and civil right to offer ALL
residential choice it clearly defines, including SODC's.
To deny the fact that all people with DD are unique, and require an
individualized and common-sense approach to living, is inhumane and
committing an injustice against society.
We would like to close with a quote from great American Civil
Rights leader Martin Luther King Jr. who eloquently stated that an
``INJUSTICE TO MANKIND, ANYWHERE IS A THREAT TO JUSTICE EVERYWHERE.''
So please remember that funding all residential choices outlined under
the Olmstead Decision is the only right, civil, moral and just way to
serve all, especially the truly vulnerable and their family and
caretakers.
Please feel free to contact us with any questions, concerns or
feedback.
Respectfully submitted.
[This statement was submitted by the Chalkey Family, Christine,
Gary, Cody, Jacob and Blake.]
______
Prepared Statement of the Coalition for Clinical and Translational
Science
Chairman Blunt and distinguished members of the Subcommittee, thank
you for your time and your consideration of the priorities of the
clinical and translational research community as you work to craft the
fiscal year 2016 L-HHS Appropriations Bill. The community would like to
thank you for your past support of the full spectrum of medical
research.
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.
The Clinical Research Forum (CRF)
CRF 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, CRF has grown to sixty
members from academia, industry, and volunteer health organizations.
CRF 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, CRF 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.
sequestration
Thank you for providing sequestration relief in fiscal year 2014
and fiscal year 2015.
Federal medical research programs form the cornerstone of our
Nation's biotech sector. In addition to undermining active and emerging
research projects, across the board funding cuts create widespread
disruption. Due to a number of factors, this disruption compounds
significant challenges facing the clinical and translational research
training and career development pipeline.
Recent years of near-level funding have curtailed NIH's ability to
issue funding opportunities. As a result, the pay line at NIH has
decreased substantially while the average age of an investigator
receiving their first award has increased significantly. This dynamic
creates a strong disincentive for young people to pursue a career in
this field. Prior to sequestration, NIH would often discuss the decline
in young investigators entering the research training and career
development pipeline.
Beyond public health, our country needs to ensure that we are
adequately preparing the next generation of medical investigators for
reasons related to both the economy and national security. Recently,
China announced a $300 billion 5-year investment in medical research;
this amount is double the current NIH budget over the same period of
time. With strong competition from foreign countries, we run the risk
of a researcher brain-drain from the U.S. to other nations. Scientific
breakthroughs and innovation will continue, but our loss in this area
will mean gains for other nations. Foreign economies will benefit from
the significant return-on-investment that occurs through robust support
of research.
Sequestration has the potential to severely exacerbate an already
difficult task of recruiting and training the next generation of
scientific investigators. In order to ensure that the U.S. maintains a
strong research training and career development pipeline, please
eliminate the threat of sequestration and further support key
activities.
national institutes of health
This Nation has a proud history as a global leader in medical
research and biotechnology. This leadership has provided our country
with cutting-edge patient care, high-quality jobs, and meaningful
economic growth. The Milliken Institute recently calculated that every
dollar invested in NIH returns about a $1.70 in economic output in the
short term and as much as $3.20 long-term. Crucially, through a robust
external research program, NIH resources flow out to the States where
the benefit of the funding infusion is felt on the local level.
NIH's impact on public health has been profound. Conditions once
considered a death-sentence can now be managed, survival rates for
patients with life-threatening diseases have increased dramatically,
and additional innovative therapies and diagnostic tools come to market
each year. NIH has been successful, but much more can be done. Please
provide NIH with at least $32 billion in fiscal year 2016 so ongoing
research projects can be adequately supported and new research
activities can be initiated.
Clinical and Translational Science Awards (CTSAs)
NIH's CTSA Program, which is housed within the National Center for
Advancing Translational Sciences (NCATS), is transforming the
efficiency and effectiveness of clinical and translational research.
Since its establishment with 12 centers in 2006, the CTSA program has
expanded to 62 of the leading medical research institutions located
across the country. These centers are linked together and work in
concert to improve human health by energizing the research and training
environment to innovate and enhance the quality of clinical and
translational research.
Recently, based on a recommendation by your Committee, the
Institute of Medicine (IOM) released a review of the CTSA program. The
report entitled, The CTSA Program at NIH: Opportunities for Advancing
Clinical and Translational Research, spoke favorably of the CTSA effort
and made the following recommendations to improve the program:
(1) Strengthen NCATS leadership of the CTSA program, (2)
reconfigure and streamline the CTSA Consortium, (3) build on
the strengths of individual CTSAs across the spectrum of
clinical and translational research, (4) formalize and
standardize evaluation processes for individual CTSAs and the
CTSA Program, (5) advance innovation in education and training
programs, (6) ensure community engagement in all phases of
research, (7) strengthen clinical and translational research
relevant to child health.
CCTS supports the recommendations of the IOM report and the
organization is hopeful these changes will continue to be implemented
quickly. Another emerging opportunity is to promote collaboration
between CTSAs and all NIH Institutes and Centers. Further, when the
CTSA program was authorized, Congress indicated that the consortium
would be considered fully-funded when it received an annual
appropriation of $750 million. For fiscal year 2016, as part of an
overall funding increase for NIH, please provide CTSAs with at least
$500 million to ensure the program can continue to grow and advance.
Additionally, we hope you will continue working over the coming years
to provide CTSAs with $750 million to fully fund the program and
establish a robust home for clinical and translational research.
Institutional Development Awards Program (IDeA)
The IDeA program broadens the geographic distribution of NIH
funding for biomedical research. The program fosters health-related
research and enhances the competitiveness of investigators at
institutions located in States in which the aggregate success rate for
applications to NIH has historically been low. The program also serves
unique populations--such as rural and medically underserved
communities--in these States. The IDeA program increases the
competitiveness of investigators by supporting faculty development and
research infrastructure enhancement at institutions in 23 States and
Puerto Rico. Through Centers of Biomedical Research Excellence and IDeA
Networks for Biomedical Research Excellence, the IDeA program builds
important infrastructure and works to advance the field of clinical and
translational research.
In fiscal year 2016, please provide the IDeA program with a 5
percent increase to bring the total funding level up to around $250
million. Such an increase would facilitate important growth in the
program.
federal research training and career development programs
As we discussed previously, the future of our Nation's biomedical
research enterprise relies heavily on the maintenance and continued
recruitment of promising young investigators. The ``T'' and ``K''
series awards at NIH and AHRQ provide much-needed support for the
career development of young investigators. As clinical and
translational medicine takes on increasing importance, there is a great
need to grow these programs. Career development grants are crucial to
the recruitment of promising young investigators, as well as to the
continuing education of established investigators. Reduced commitment
to the K and T awards would have a devastating impact on our pool of
highly trained clinical researchers. CCTS urges you to support the
ongoing commitment to research training through adequate funding for T
and K series awards and a meaningful fiscal year 2016 funding increase
for AHRQ.
Additionally, we are supportive of the overall effort being
undertaken by the 21st Century Cures Initiative, but we find some of
the recommendations and the lack of funding authorizations within the
current discussion draft to be worrisome. In future proposals, we hope
to see additional funding authorized to support any and all new
activities.
Thank you for the opportunity to present the views and
recommendations of the clinical and translational research and research
training and career development community.
______
Prepared Statement of the Coalition of Northeastern Governors
The Coalition of Northeastern Governors (CONEG) is pleased to share
with the Subcommittee on Labor, Health and Human Services, Education
and Related agencies its views regarding the fiscal year 2016
appropriations for the Low-Income Home Energy Assistance Program
(LIHEAP).
The CONEG Governors appreciate the Subcommittee's long-standing
support for this vital program, and recognize the difficult budgetary
decisions that face the Subcommittee. In these challenging economic
times, the Nation's low-income households also face difficult budget
choices as they struggle to afford the basic necessity of home energy.
The Governors urge the Subcommittee to fund the LIHEAP program in
fiscal year 2016 at no less than $4.7 billion provided as block grants
to the States. Adequate, predictable and timely Federal funding is
essential for LIHEAP to provide a vital lifeline to those households
faced with unaffordable home energy bills. The governors also urge the
Subcommittee to provide these funds in a manner consistent with the
LIHEAP statutory objective of addressing the energy burden: ``assist
low-income households, particularly those with the lowest incomes that
pay a high proportion of household income for home energy, primarily in
meeting their immediate home energy needs.''
In the Northeast and across the Nation, LIHEAP assistance is
targeted to households with the lowest income and high energy burden.
The majority of LIHEAP recipients have incomes far below the
eligibility criteria of 150 percent of the Federal poverty level
($23,595 for a two-person household in 2015). More than ninety percent
of LIHEAP households have at least one vulnerable member--the elderly
or disabled and young children--for whom temperature extremes could
have serious health and safety consequences. These low-income
households, particularly low-income senior households, spend a
disproportionate amount of their income on home energy, often over
three times more than non-low-income households. The American
Association for Retired Persons (AARP) estimates that twenty-seven
percent of older households have family incomes of less than $20,000.
The energy burden of keeping warm and safe is particularly
challenging for low-income households in the Northeast which has some
of the country's oldest homes and coldest climate. More than any other
region of the country, Northeast households are dependent upon
delivered fuels--heating oil, propane and kerosene. In the winter
heating season that is just now coming to an end, senior households
with incomes of less than $10,000 heating with fuel oil will spend 14
percent of their income on heating costs. Those heating with other
fuels (natural gas, electricity, and propane) can expect to spend
between six and 9 percent of household income on heating costs.
Although the price of many home heating fuels has remained
relatively stable or declined this winter from recent peak prices, the
need for the program remains strong. For example, due to this winter's
brutal deadly temperatures, low-income families still incurred
increased home energy bills. At the end of the heating season, home
heating oil prices in the Northeast averaged $3.00 per gallon according
to the Energy Information Administration (EIA). While the need remains
great, average LIHEAP benefit levels nationwide have been reduced by
almost $100 since 2010, and the number of households served has
declined from 8.1 million in fiscal year 2010 to 6.6 million in fiscal
year 2014.
Reducing home energy costs presents unique challenges to northeast
States. Thirty percent of Northeast households rely upon delivered
fuels which are also the most expensive and volatile in price. In
addition, compared to homes heating with natural gas or electricity,
these ``delivered fuel'' households are less likely to have the option
of payment plans, access to utility assistance programs, and the
protection of utility service shut-off moratoria during the heating
season. If LIHEAP funds are not available to these households, the fuel
delivery truck simply does not come.
State LIHEAP programs continue to seek innovative and efficient
ways to ``do more with less'' and stretch scarce LIHEAP dollars to
ensure that meaningful assistance can be provided to those households
with the greatest needs, and as such, benefit from flexibility in the
use of block grant funds. State LIHEAP programs, often working with
their Weatherization Assistance Programs, help low-income households
take steps to reduce their energy use and lower their energy bills.
Programs to provide repair or replace inefficient, unsafe and non-
working home heating systems improve the safety and reduce the energy
use of low-income households. LIHEAP funds are frequently leveraged by
utility assistance programs for low-income households. States in the
Northeast have worked with utilities to develop payment plans to reduce
arrearages and lessen the prospect of utility shut-offs after the
heating season ends. They have negotiated with fuel dealers to receive
discounts on deliverable fuels, and have entered into agreements to
purchase fuel in the summer when prices are lowest. States working to
meet the heating and cooling needs of low income households need
continued flexibility so that they may allocate limited LIHEAP funding
in a manner that best suits their needs.
Even with these programs, many of the lowest income families that
benefit from LIHEAP have limited options to reduce their energy bills.
There is simply no room in their household budget for energy upgrades.
Some older homes and many manufactured homes have structural issues
that make them ineligible for weatherization assistance. Low-income
families are more likely to rent than to own a home and therefore have
less ability or incentive to make significant energy efficiency
upgrades to their homes. For many of these households, switching to
less expensive heating fuels is simply not possible. Homes in rural and
metropolitan areas throughout the Northeast are not served by natural
gas infrastructure. In addition, the New England Fuel Institute
estimates that converting a complete home heating system from oil to
natural gas can cost as much as $10,000.
In summary, LIHEAP is targeted to meet the immediate home heating
needs of some of the Nation's most vulnerable households who face a
high energy burden. It is one of the most efficiently run programs with
low overhead costs. Even with significant cost-cutting steps, States
have had to take actions such as tightening program eligibility,
closing the program early, and reducing benefit levels.
Therefore, the CONEG Governors appreciate the Subcommittee's
continued support for LIHEAP, and urge you to fund the core block grant
at the level of no less than $4.7 billion in fiscal year 2016.
______
Prepared Statement of the College of Pharmacy and Pharmaceutical
Sciences, Florida Agricultural and Mechanical University
summary of fiscal year 2016 recommendations
_______________________________________________________________________
Title VII Health Professions Training Programs:
--$25 Million for the Minority Centers of Excellence.
--$14 Million for the Health Careers Opportunity Program.
--$285 Million for the National Institutes of Health's National
Institute on
Minority Health and Health Disparities.
--$100 Million for the Research Centers at Minority Institutions
Program at NIMHD
--$65 Million for the Department of Health and Human Services' Office
of
Minority Health.
--$65 Million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Michael
Thompson, dean of the College of Pharmacy and Pharmaceutical Sciences
at Florida Agricultural and Mechanical University (FAMU). The primary
mission of the College of Pharmacy and Pharmaceutical Sciences, in
concert with Florida A&M University, is to prepare students for life-
long learning and careers in an evolving profession of pharmacy. The
College reinforces its mission through an active role and
responsibility in the delivery, outcome, and study of pharmaceutical
care services it shares with other healthcare providers. The College is
committed to the advancement of pharmaceutical knowledge through
teaching, research, and service in a supportive and caring environment
that enhances the attainment of educational excellence and the highest
standards in professional and ethical practice. The College inculcates
cultural sensitivity and diversity through its faculty, student body,
and patient care.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help Tuskegee continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well-established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush Administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: (1) serve in rural
and urban medically underserved areas, (2) provide care for minorities
and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2016, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2016, I recommend a
funding level of $25 million for COEs. Additionally, I encourage the
Committee direct HRSA to re-evaluate the funding mechanism for the
original four COEs, as it does not always lead to funding based on the
merit of an institution's proposal.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2016, I recommend a funding level
of $14 million for HCOPs.
national institutes of health
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2016, I recommend funded increases
proportional with the funding of the overall NIH, with increased FTEs.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to the National
Institute on Minority Health and Health Disparities has a long and
distinguished record of helping our institutions develop the research
infrastructure necessary to be leaders in the area of health
disparities research. Although NIH has received unprecedented budget
increases in recent years, funding for the RCMI program has not
increased by the same rate. Therefore, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2016.
department of health and human services
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in healthcareers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities, but that role is only possible if this agency
continues to keep its grant-making authority. For fiscal year 2016, I
recommend a funding level of $65 million for the OMH.
department of education
Strengthening Historically Black Graduate Institutions: The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to FAMU. The funding from this program is used to
enhance educational capabilities, establish and strengthen program
development offices, initiate endowment campaigns, and support numerous
other institutional development activities. In fiscal year 2016, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
FAMU , Title VII Health Professions Training programs and the
historically black health professions schools can help this country to
overcome health disparities. Congress must be careful not to eliminate,
paralyze or stifle the institutions and programs that have been proven
to work. FAMU seeks to close the ever widening health disparity gap. If
this subcommittee will give us the tools, we will continue to work
towards the goal of eliminating that disparity everyday.
Thank you, Mr. Chairman, and I welcome every opportunity to answer
questions for your records.
[This statement was submitted by Michael Thompson, Pharm.D., Dean,
College of Pharmacy and Pharmaceutical Sciences, Florida Agricultural
and Mechanical University.]
______
Prepared Statement of the College of Veterinary Medicine, Nursing &
Allied Health
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--Title VII Health Professions Training Programs:
--$25 Million for the Minority Centers of Excellence.
--$14 Million for the Health Careers Opportunity Program.
--Increased Support for the National Institutes of Health's National
Institute on Minority Health and Health Disparities.
--$32 Billion for the National Institutes of Health.
--$285 Million for the National Institute on Minority Health and
Health Disparities.
--$100 Million for Research Centers for Minority Institutions
--$65 Million for the Department of Health and Human Services' Office
of Minority Health.
--$65 Million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Ruby Perry,
dean of the College of Veterinary Medicine, Nursing, and Allied Health
at Tuskegee University. The mission (purpose) of Research and Advanced
Studies at the College of Veterinary Medicine, Nursing & Allied Health
(CVMNAH) is to transform trainees into ambassadors of the Tuskegee
tradition to benefit Man and animals. Such a tradition is honed in the
``one medicine-one health'' concept that for decades has guided our
academic mission, to expand biosciences and create bridges between
veterinary medicine, agricultural and food sciences on one side and
human health and welfare on the other.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help Tuskegee continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush Administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: (1) serve in rural
and urban medically underserved areas, (2) provide care for minorities
and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2016, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2016, I recommend a
funding level of $25 million for COEs. Additionally, I encourage the
Committee direct HRSA to re-evaluate the funding mechanism for the
original four COEs, as it does not always lead to funding based on the
merit of an institution's proposal.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2016, I recommend a funding level
of $14 million for HCOPs.
national institutes of health
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2016, I recommend $285 million for NIMHD.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to the National
Institute on Minority Health and Health Disparities has a long and
distinguished record of helping our institutions develop the research
infrastructure necessary to be leaders in the area of health
disparities research. Although NIH has received unprecedented budget
increases in recent years, funding for the RCMI program has not
increased by the same rate. Therefore, for fiscal year 2016 I recommend
$100 million for the RCMI program.
department of health and human services
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in healthcareers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities, but that role is only possible if this agency
continues to keep its grant-making authority. For fiscal year 2016, I
recommend a funding level of $65 million for the OMH, and a
continuation of their grant making authority.
department of education
Strengthening Historically Black Graduate Institutions: The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to TU CVMNAH. The funding from this program is used
to enhance educational capabilities, establish and strengthen program
development offices, initiate endowment campaigns, and support numerous
other institutional development activities. In fiscal year 2016, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Tuskegee University's College of Veterinary Medicine, Nursing, and
Allied Health , Title VII Health Professions Training programs and the
historically black health professions schools can help this country to
overcome health disparities. Congress must be careful not to eliminate,
paralyze or stifle the institutions and programs that have been proven
to work. CVMNAH seeks to close the ever widening health disparity gap.
If this subcommittee will give us the tools, we will continue to work
towards the goal of eliminating that disparity everyday.
Thank you, Mr. Chairman, and I welcome every opportunity to answer
questions for your records.
[This statement was submitted by Ruby Perry, DVM, Dean, College of
Veterinary Medicine, Nursing & Allied Health.]
______
Prepared Statement of the College on Problems of Drug Dependence
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to submit testimony to the Subcommittee in support of the
research supported by 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 United States addressing problems of
drug dependence and abuse. The organization serves as an interface
among governmental, industrial and academic communities maintaining
liaisons with regulatory and research agencies as well as educational,
treatment, and prevention facilities in the drug abuse field. CPDD also
works in collaboration with the World Health Organization.
Recognizing that so many health research issues are inter-related,
we request that the subcommittee provide at least $32 billion for the
National Institutes of Health (NIH) and within that amount a
proportionate increase for the National Institute on Drug Abuse, in
your Fiscal 2016 Labor, Health and Human Services, Education and
Related Agencies Appropriations bill. We also respectfully request the
inclusion of the following NIDA specific report language.
Marijuana Research.--The committee recognizes that many States
either have or are considering legalizing or making marijuana available
for medical use without appropriate knowledge about its effects on
human development, structure and function of their brains. Therefore
the committee supports the Adolescent Behavioral Cognitive Development
(ABCD) Study being initiated by NIDA and other institutes of NIH. The
committee also recognizes that the study will take at least a decade to
complete since it will be a comprehensive study of the effects of
marijuana and other abused drugs throughout growth from 10 to 20 years
of age. Further the committee recognizes the cost of this comprehensive
study should not inhibit funding investigator initiated studies and a
special appropriation for this study is necessary.
Opiate Abuse and Addiction.--The Committee is concerned about the
escalating crisis of prescription drug abuse in the U.S. It is now
estimated that 120 people die each day in this country from opioid
overdose making it one of the highest causes of non-disease related
causes of deaths for adolescents and young adults. The June 2011 IOM
report on pain indicates that abuse and misuse of prescription opioid
drugs resulted in an annual estimated cost to the Nation of
$72,500,000,000. Further, the Committee is very concerned with the
concomitant rise in heroin abuse, addiction and deaths as the cost of
this illegal opioid is less than that for prescription opioids. The
Committee urges NIDA to 1) continue funding research on medications to
alleviate pain, including the development of pain medications with
reduced abuse liability; 2) as appropriate, work with private companies
to fund innovative research to enhance the development of such
medications; and 3) report on what we know regarding the transition
from prescription opiate analgesics to heroin abuse and addiction
within affected populations.
Medications Development.--The Committee recognizes that new
technologies are required for the development of next-generation
pharmaceuticals. In the context of NIDA funding, chief among these are
NIDA's current approaches to develop viable immunotherapeutic or
biologic (e.g., bioengineered enzymes) approaches for treating
addiction. The goal of this active area of research is the development
of safe and effective vaccines or antibodies that decrease the ability
of specific addictive drugs, like nicotine, cocaine, and heroin, or
drug combinations to affect the brain. The Committee is excited by this
approach--if successful, immunotherapies, alone or in combination with
other medications, behavioral treatments, or enzymatic approaches,
stand to revolutionize how we treat, and, maybe even someday, prevent
addiction. The Committee looks forward to hearing more about work in
this area.
Research to Assist Military Personnel, Veterans, and Their
Families.--The Committee recognizes the significant health challenges,
including substance abuse and addiction, faced by military personnel,
veterans, and their families. Many of these individuals need help
confronting war-related problems including traumatic brain injury,
PTSD, depression, anxiety, sleep disturbances, and substance abuse and
addiction. The Committee commends NIDA for its successful efforts to
coordinate and support research with the Department of Veterans
Affairs, Department of Defense, and other NIH Institutes focusing on
these populations, and strongly urges NIDA to continue work in this
area.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment..--The Committee is pleased with
NIDAMed, an initiative designed to reach out to physicians, physicians
in training, and other healthcare professionals to increase especially
those treating our youth to better recognize the signs that lead to
drug abuse and addiction. The Committee urges the Institute to continue
its focus on activities to provide physicians and other medical
professionals with the tools and skills needed to incorporate drug
abuse screening and treatment into their clinical practices.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a huge financial toll on our
resources. Beyond the unacceptably high rates of morbidity and
mortality, drug abuse is often implicated in family disintegration,
loss of employment, failure in school, domestic violence, child abuse,
and other crimes. Placing dollar figures on the problem; smoking,
alcohol and illegal drug use results in an exorbitant economic cost on
our Nation, estimated at over $600 billion annually. We know that many
of these problems can be prevented entirely, and that the longer we can
delay initiation of any use, the more successfully we mitigate future
morbidity, mortality and economic burdens.
Over the past three decades, NIDA-supported research has
revolutionized our understanding of addiction as a chronic, often-
relapsing brain disease --this new knowledge has helped to correctly
emphasize the fact that drug addiction as a serious public health issue
that demands strategic solutions. By supporting research that reveals
how drugs affect the brain and behavior and how multiple factors
influence drug abuse and its consequences, scholars supported by NIDA
continue to advance effective strategies to prevent people from ever
using drugs and to treat them when they cannot stop.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends--significant declines in a wide array of youth drug
use--over the past several years that we think are due, at least in
part, to NIDA's public education and awareness efforts. However, areas
of significant concern include the recent increase in lethalities due
to heroine, as well as the continued abuse of prescription opioids and
the recent increase in designer drugs availability 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. 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 2016 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction, which
according to the World Health Organization account for nearly 20
percent of disabilities among 15-44 year olds, deserves to be
prioritized accordingly. We look forward to working with you to make
this a reality. Thank you for your support for the National Institute
on Drug Abuse.
______
Prepared Statement of Community Servings
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
HIV/AIDS Program through the Appropriations process and increasing
funding for the domestic HIV/AIDS portfolio in fiscal year 2016. This
support and funding will be decisive for achieving the goals of the
National HIV/AIDS Strategy (NHAS), the AIDS Free Generation and halting
the devastating effects of the HIV Treatment Cascade.
Community Servings is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. We provide over half a million medically tailored,
home delivered meals to critically and chronically ill individuals,
their dependent families, and caregivers in twenty cities and towns in
Massachusetts annually. Collectively, the Food is Medicine Coalition is
committed to increasing awareness of the essential role that food and
nutrition services (FNS) play in successfully treating HIV/AIDS and to
expanding access to this indispensable intervention for people living
with other severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White HIV/
AIDS Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White HIV/AIDS Program complements the
needs of PLWHA at any stage of their illness. For those who are most
mobile, there are congregate meals, walk-in food pantries and voucher
programs. For those whose disease has progressed, home-delivered meals
and home-delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White HIV/AIDS Program. These services play a critical role in
ensuring that PLWHA enter and continue in primary medical care, adhere
to their medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A, Yomogida M, and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including Ryan
White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by David B. Waters, CEO, Community
Servings.]
______
Prepared Statement of the Consortium of Social Science Associations
The Consortium of Social Science Associations (COSSA) appreciates
the opportunity to comment on the fiscal year 2016 appropriations for
the agencies under the Subcommittee's jurisdiction. COSSA recommends
that the National Institutes of Health (NIH) receive at least $32
billion in fiscal year 2016 as the next step toward a multi-year
increase in our Nation's investment in medical research, and urges the
Subcommittee to appropriate $7.8 billion for the Centers for Disease
Control and Prevention (CDC), $172 million for the National Center for
Health Statistics (NCHS), $375 million for the Agency for Healthcare
Research and Quality (AHRQ), and $703.6 million for the Institute of
Education Sciences (IES).
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. It
represents the collective interests of all fields of social and
behavioral science research, including but not limited to sociology,
anthropology, political science, psychology, economics, statistics,
language and linguistics, population studies, law, communications,
educational research, criminology and criminal justice research,
geography, history, and child development. We are appreciative of the
Subcommittee's and the Congress' continued support of NIH, CDC, NCHS,
AHRQ, and IES. Strong, sustained funding for these agencies is
essential to the national priorities of better health and economic
revitalization.
National Institutes of Health (at least $32 billion), U.S. Department
of Health and Human Services
Since 2003, NIH funding has declined by 23 percent after adjusting
for biomedical inflation, despite recent budget increases provided by
the Congress the past 2 fiscal years. The agency's budget remains lower
than it was in fiscal year 2012 in actual dollars. The President's
fiscal year 2016 budget request represents a much-needed next step by
increasing NIH funding above biomedical inflation; however, there are
ongoing and emerging health challenges confronting the United States
and the world. To that end, COSSA believes that to address these
challenges the NIH requires a funding level of at least $32 billion in
fiscal year 2016.
As the Committee knows, the NIH mission is to support
scientifically rigorous, peer/merit-reviewed, investigator-initiated
research--including basic and applied behavioral and social science
research--in fulfilling its mission: ``Science 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.'' COSSA, however, remains concerned
about the recent criticism of the NIH's funding decisions and the
accompanying mischaracterization of NIH-supported research. The ongoing
targeting of specific grants produces a chilling effect across the
scientific community.
The behavioral and social sciences regularly make important
contributions to the well-being of this Nation. Due in large part to
the behavioral and social science research sponsored by the NIH, we are
now aware of the enormous role behavior plays in our health. At a time
when genetic control over disease is tantalizingly close but not yet
possible, knowledge of the behavioral influences on health is a crucial
component in the Nation's battles against the leading causes of
morbidity and mortality: 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 these disease processes, underpins our
ability to conquer devastating illnesses. Perhaps the grandest
challenge we face is to understand the brain, behavior, and society--
from responding to short-term pleasures to self-destructive behavior
such as addiction, to lifestyle factors that determine the quality of
life, infant mortality rate, and longevity. Congress' continued support
of the BRAIN (Brain Research through Advancing Innovative
Neurotechnologies) initiative is an important first step to begin to
address these challenges.
And while Americans have achieved very high levels of health over
the past century and are healthier than people in many other nations,
according to the 2013 National Academies' report, U.S. Health in
International Perspective: Shorter Lives, Poorer Health, ``a growing
body of research suggests that the health of the U.S. population is not
keeping pace with the health of people in other economically advanced,
high-income countries.'' Nearly 125 million Americans are living with
one or more chronic conditions, including heart disease, cancer,
diabetes, kidney disease, arthritis, asthma, mental illness, and
Alzheimer's disease, according to the CDC. At the same time, healthcare
spending in the United States is impacted by the aging of the U.S.
population and the rapid rise in chronic diseases, many of which are
caused or exacerbated by behavioral factors--including, obesity caused
by sedentary behavior and poor diet, and addictions resulting from
health problems caused by tobacco and other drug use, including
prescription drug abuse by women. As the NAS report notes, ``the United
States is losing ground in the control of diseases, injuries, and other
sources of morbidity.''
As a result of the strong Congressional commitment to the NIH in
years past, our knowledge of the social and behavioral factors
surrounding chronic disease health outcomes is steadily increasing. The
NIH's behavioral and social science portfolio has emphasized the
development of effective and sustainable interventions and prevention
programs targeting those very illnesses that are the greatest threats
to our health, but the work is just beginning.
Among the important contributions stemming from NIH's support of
behavioral and social science are:
--Economic research, specifically, research on the linkages between
socioeconomic status and health outcomes in the elderly and
achievement and health outcomes in children;
--Economic matching theory to develop a system that dramatically
improves the ability of doctors to find compatible kidneys for
patients on transplant lists;
--The translation of basic research to lifesaving interventions such
infant massage, that enhance premature infants' weight gain and
save lives;
--Resources for enhancing Alzheimer's caregiver health (REACH)
program, which aims to help maintain the health of informal
caregivers for the millions of American Alzheimer's patients
who live at home;
--Research that led to understanding and improving ways that people
communicate about health-related issues; and
--Research that increased our understanding adolescence peer pressure
and smoking.
Finally, COSSA applauds the Administration's proposed Precision
Medicine Initiative (PMI) and the NIH's involvement of its Office of
Behavioral and Social Sciences Research (OBSSR) in the initial planning
phase of this million-person cohort, including its commitment to
including behavioral, physiological, and environmental measures. To
this end, the recent advances in mobile and wireless sensor
technologies, also known as mHealth, to assess these behavioral,
physiological, and environmental parameters are an integral aspect of
this initiative. This technology has great potential to transform
medical research. OBSSR has led the NIH's efforts in using,
understanding, and training scientists in the use of mHealth, which
allows for more rapid and accurate assessment in modifying behavior,
biological states, and contextual variables. Its support of the NIH
mHealth Training Institutes is designed to attend to scientific silos
by bringing together scientists from diverse fields to enhance the
quality of mHealth research.
Centers for Disease Control and Prevention ($7.8 billion) and National
Center for Health Care Statistics ($172 million), U.S.
Department of Health and Human Services
COSSA urges the Subcommittee to appropriate $7.8 billion for the
Centers for Disease Control and Prevention (CDC), including $172
million for the CDC's National Center for Health Statistics. As the
country's leading health protection and surveillance agency, the CDC
works with State, local, and international partners to protect
Americans from infectious diseases; prevent the leading causes of
disease, disability, and death; protect Americans from natural and
bioterrorism threats; monitor health and ensure laboratory excellence;
keep Americans safe from environmental and work-related hazard; and
ensure global disease protection.
Social and behavioral science plays a crucial role in helping the
CDC carry out its mission. Scientists from 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
using a variety of both quantitative and qualitative methods.
These scientists play a key role in the CDC's surveillance and
monitoring efforts, which collect and analyze data to better target
public health prevention efforts. For example, the Behavioral Risk
Factor Surveillance System, which collects data about Americans'
health-related risk behaviors and events, chronic health conditions,
and use of preventive services, is used to establish and track State
and local health objectives, plan health programs, implement disease
prevention and health promotion activities, and monitor trends.
Another vital contribution of the social and behavioral sciences to
CDC activities is in identifying and understanding health disparities.
Although the overall health of Americans has improved over the last
decades, differences in health based on race, ethnicity, gender,
income, geographical location, education level, disability status, and
sexual orientation persist. Rigorous, cross-disciplinary efforts are
needed to develop effective interventions to reduce these entrenched
disparities and inequities.
The social and behavioral sciences play an important role in the
evaluation of CDC programs. When programs conduct strong, practical
evaluations on a routine basis, the findings are better positioned to
inform their management and improve program effectiveness.
COSSA requests $172 million--$160 million in budget authority and
$12 million from the Prevention and Public Health Fund--for the
National Center for Health Statistics (NCHS), the Nation's principal
health statistics agency. 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 like the
National Health Interview Survey (NHIS), the National Health and
Nutrition Examination Survey (NHANES), and the National Vital
Statistics System (NVSS) are used by agencies across the Federal
Government, State and local governments, public health officials,
Federal policymakers, and demographers, epidemiologists, health
services researchers, and other scientists.
The requested increase for NCHS' budget authority would be used to
continue expansion of the electronic death registration system (EDRS)
to facilitate monitoring of data on deaths of public health importance,
including prescription drug overdose deaths. The additional funding
from the Prevention and Public Health Fund would enable NCHS to
continue with planned expansion to NHIS questions and sample size and
to the sample size of the National Ambulatory Medical Care Survey.
Without this appropriation, these expansions will be discontinued.
Agency for Healthcare Research and Quality ($375 million), U.S.
Department of Health and Human Services
COSSA urges the Subcommittee to appropriate $375 million for the
Agency for Healthcare Research and Quality (AHRQ). AHRQ funds the
science that tells us how we can make healthcare safer, higher quality,
more accessible, equitable, and affordable. It is the only Federal
agency whose sole purpose is to produce the evidence to improve
America's healthcare system and make sure that knowledge is understood
and used by healthcare providers, patients, hospitals, and public and
private payers.
The research AHRQ supports is based on the understanding that
developing new treatments is only part of the battle; we need to know
how to get those treatments to the people who need them, efficiently
and effectively. AHRQ findings arm healthcare providers with the
knowledge they need to provide the best care for their patients. The
science it supports can help us improve the safety of all healthcare
settings and provide better care more efficiently through improved
access to healthcare services and better understanding of the cost and
quality of care.
The important health services research AHRQ supports includes:
--Research on preventing healthcare-associated infections (HAIs):
AHRQ's evidence-based protocol for reducing HAIs, the
Comprehensive Unit-based Safety Program to Prevent Healthcare-
Associated Infections (CUSP), saved more than 1,500 lives and
nearly $200 million in healthcare costs--just in its first 18
months. Since its implementation in 2003, it has been expanded
to hospitals in all 50 States, the District of Columbia, and
Puerto Rico.
--Learning how to improve care for patients suffering from multiple
chronic conditions: An estimated 66 percent of the Nation's
healthcare costs go to treating people with more than one
chronic condition, a number which will only grow as the
population ages. AHRQ funds the Multiple Chronic Conditions
Research Network, which aims to conduct the foundational
research that will tell us how to best meet the needs of this
population.
--The National Quality Measurement Clearinghouse: A repository of
detailed information on measures that are proven to be
associated with better or worse care, giving physicians and
other healthcare providers, health plans, delivery systems, and
others easy access to evidence-based information to inform
their healthcare decisions.
--The congressionally-mandated National Healthcare Quality Report and
National Healthcare Disparities Report: The only comprehensive
sources of information on healthcare quality and healthcare
disparities among racial and ethnic minorities, women,
children, and low-income populations.
--The Medical Expenditure Panel Survey (MEPS): The Nation's only
national source of comprehensive annual data on the how
Americans use and pay for medical care. MEPS collects data on
the specific health services that Americans use, how frequently
they use them, the cost of these services, and how they are
paid for, as well as data on the cost, scope, and breadth of
health insurance held by and available to U.S. workers. This
data provides vital information on the impact of healthcare on
the U.S. economy.
COSSA urges the Subcommittee to ensure robust support for AHRQ's
critical health services research.
Institute of Education Sciences ($703.6 million), U.S. Department of
Education
The Institute of Education Sciences is the research arm of the
Department of Education. COSSA recommends a funding level of $703.6
million for IES, which would restore the cuts it has faced since 2009.
As this Committee knows, IES supports research and produces statistics
and data to improve our understanding of education at many levels--
early childhood, elementary and secondary education, and higher
education. Research examining special education, rural education,
teacher effectiveness, education technology, student achievement,
reading and math interventions, and many other areas is also supported
by IES. There is an increasing call for using evidence-based practices
in education. Adequate funding for IES would support studies that not
only increase knowledge of the factors that influence teaching and
learning, but also apply those findings to improve educational
outcomes. The COSSA-recommended funding level will allow IES to build
upon existing findings and to conduct much-needed new research.
Thank you for the opportunity to present this testimony on behalf
of the social and behavioral science research community. Please do not
hesitate to contact me should you require additional information.
[This statement was submitted by Angela L. Sharpe, MG, Deputy
Director, Consortium of Social Science Associations.]
______
Prepared Statement of Elizabeth Contino
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]even the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Kathryn Cook
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Corporation for Supportive Housing
The Corporation for Supportive Housing (CSH) is a nonpartisan,
nonprofit organization helping communities develop supportive housing
(SH) and reorient systems to improve resource allocation to create and
sustain evidence-based solutions. We have offices in 12 States
(California, Arizona, Texas, Illinois, Indiana, Ohio, Minnesota,
Michigan, New York, Georgia, and Connecticut) and the District of
Columbia and have a presence in several others. Supportive housing is
affordable housing combined with stabilizing services to help families
and individuals address their disabling conditions while living in safe
apartments. CSH has helped communities create and develop supportive
housing for populations with substance use addiction, mental health
illness, chronic diseases, involvement with child welfare, exiting the
criminal justice system and homeless young adults.
Supportive housing providers receive a portion of the funds
necessary to build or secure affordable housing from the Department of
Housing and Urban Development (HUD) or State housing resources. There
is also a need for the Department of Health and Human Services (HHS) to
ensure that resources are available for services such as case
management, landlord negotiation, connection to health services,
counseling and medication management. Providers often use a combination
of State, local, foundation and privately raised funds to pay for the
vital social services chronically homeless populations may need to stay
housed. Increasingly, organizations are able to access Medicaid to
provide services when the service is part of the benefit package for a
household and the provider is licensed to bill Medicaid. In order to
build the housing units needed to end homelessness, serve those leaving
institutional care, help families with children stay together and
afford homeless transition age youth, the Department of Health and
Human Services must increase its investment in services that are paired
with housing programs. To this end, CSH recommends the following:
--Allocate $100 million for services for people experiencing
homelessness within the Programs of Regional and National
Significance (PRNS) accounts of both SAMHSA's Center for Mental
Health Services and Center for Substance Abuse Treatment.
--Increase funding for the Projects for Assistance in Transition from
Homelessness (PATH) program to $75 million, the fully
authorized level.
--Increase funding for the Runaway and Homeless Youth Act Programs to
$165 million, its authorized funding level.
--Provide $1.5 billion in the discretionary Community Health Center
program and $3.6 billion in Affordable Care Act mandatory
funding, both are located within the Health Resource Services
Administration. This would result in $447.3 million for the
Health Care for the Homeless program.
--Provide $80 million for the Social Innovation Fund (SIF) program in
the Corporation for National and Community Service.
Background
While HUD has made significant housing investments, there is a need
for HHS to increase its role in providing services resources for
organizations to create supportive housing. A supportive housing
residents live with serious mental illness, substance use disorders or
chronic health conditions and to retain housing must have access
services that require HHS resources.
We know supportive housing works. Over 80 percent of residents
remain housed after the first year. In addition, work CSH has done
targeting frequent users of health, jails or prisons illustrates the
cost effectiveness of supportive housing. In California, we implemented
the Frequent Users of Health Services Initiative (FUHSI). Through this
study, we found that by placing clients into supportive housing we
reduced their emergency room costs by 59 percent, reduced their
inpatient days by an average of 62 percent and reduced average
inpatient charges by 69 percent.
Our project targeting frequent users of jails and prisons has shown
similar results. In New York, CSH's Frequent Users of Services
Enhancement (FUSE) Initiative was a joint project between the New York
City Departments of Corrections and Homeless Services with assistance
from the Department of Health and Mental Hygiene and the New York City
Housing Authority. By assisting ex-offenders and providing supportive
housing to those who need it, NYC was able to help clients reduce jail
stays by 33 percent and reduce mental health stays by 18 percent. For
the 86 people served, the FUSE initiative was able to offset over
$3,500 in either jail or mental health costs per client.
In addition, there are several other subpopulations experiencing
either homelessness or housing instability that would benefit from
increased social services oriented funding. On a small scale, SAMHSA
programs have targeted youth, veterans and families to ensure that all
people who could benefit from mental health and substance use treatment
can receive specialized support. However, without increased funding,
communities will not be able to fully implement the supportive housing
model for the hundreds of thousands of people who can benefit from it.
detailed program descriptions
SAMHSA Support Services for Supportive Housing Projects
CSH recommends allocating $100 million for services in permanent
supportive housing within SAMHSA's Center for Mental Health Services
and Center for Substance Abuse Treatment.
Years of reliable data and research demonstrate that the most
successful intervention to solve chronic homelessness is linking
housing to appropriate support services. Current SAMHSA investments in
homeless programs are highly effective and cost-efficient. However,
funding for SAMHSA homeless programs has remained flat for the past 3
years, often making it difficult for communities to increase the number
of homeless households they are serving with the service dollars. As
communities are investing additional housing resources into serving
high-need homeless populations, Congress should increase funding for
services to help those populations address their long-term health
related issues.
Projects for Assistance in Transition from Homelessness (PATH)
CSH recommends that Congress increase PATH funding to $75 million
and adjust the funding formula to increase allocations for small States
and territories.
PATH provides outreach to eligible consumers and ensures that those
consumers are connected with mainstream services, such as Supplemental
Security Income (SSI), Medicaid, and welfare programs.
PATH supported programs served over 181,537 people through outreach
in fiscal year 2013. Of those for whom a diagnosis was reported,
approximately 66 percent were receiving community mental health
services and 56 percent had co-occurring substance use disorders.
One issue that needs consideration, under the PATH formula grant,
approximately 30 States share in the program's annual appropriations
increases. The remaining States and territories receive the minimum
grant of $300,000 for States and $50,000 for territories. These amounts
have not been raised since the program was authorized in 1991. To
account for inflation, the minimum allocation should be raised to
$600,000 for States and $100,000 for territories. Amending the minimum
allocation requires a legislative change. If the authorizing committees
do not address this issue, we hope that appropriators will explore ways
to make the change through appropriations bill language.
Community Health Centers and Health Care for the Homeless (HCH)
Programs
CSH recommends $1.5 billion in the discretionary Community Health
Center program and $3.6 billion in Affordable Care Act mandatory
funding for community health centers. This would result in $447.3
million for the Health Care for the Homeless program.
Persons living on the street suffer from health problems resulting
from or exacerbated by being homeless, such as hypothermia, frostbite,
and heatstroke. In addition, they often have infections of the
respiratory and gastrointestinal systems, tuberculosis, vascular
diseases such as leg ulcers, and hypertension.\1\ Healthcare for the
homeless programs are vital to prevent these conditions from becoming
fatal. Congress allocates 8.7 percent of the Consolidated Health
Centers account for HCH projects.
---------------------------------------------------------------------------
\1\ Harris, Shirley N, Carol T. Mowbray and Andrea Solarz. Physical
Health, Mental Health and Substance Abuse Problems of Shelter Users.
Health and Social Work, Vol. 19, 1994.
---------------------------------------------------------------------------
Runaway and Homeless Youth Program
CSH recommends $165 million for the Runaway and Homeless Youth
(RHYA) Act Programs. RHYA programs are dedicated to reaching homeless
youth. RHYA funding goes towards outreach to youth living on the
street, emergency shelters and transitional housing programs. CSH
recommends including a Pay for Success Initiative in the RHYA account
to test models that serve high-need youth, such as those with disabling
conditions or those who have had multiple placements in out-of-home
care. A Pay for Success Model could braid funding from RHYA, HUD and
Title IV-E to fund supportive services for this target population.
On any given night, approximately 46,000 youth are homeless.
Homeless youth leave their current homes for many reasons, including
physical abuse, sexual abuse, extreme poverty or other trauma.
Unfortunately, less than 5,000 youth are able to access stable housing
resources each year. RHYA is the only dedicated resource that is made
available to serve this population. Increasing funding for the three
core programs is critical to reduce the number of youth living on the
streets. Further, a Pay for Success program that targets youth with
higher needs will allow providers to blend different models to achieve
positive outcomes for youth.
Child Abuse and Prevention Treatment Act (CAPTA)
CSH recommends funding the Administration request for CAPTA but
include an additional $20 million funding for services for families or
eligible youth receiving Family Unification vouchers. The
Administration requested $20 million for Family Unification vouchers
that assist families involved with child welfare or youth exiting
foster care.
The Child Abuse and Prevention Treatment grants are dedicated to
the prevention, assessment, identification and treatment of child abuse
and neglect. Currently, ACF is using discretionary grants to fund the
Partnerships to Demonstrate the Effectiveness of Supportive Housing for
Families with Child Welfare Involvement that connects housing and
services to create a program that focuses on both family preservation
and reunification, reduce out-of-home care and ultimately end cycles of
involvement with child welfare. Through this demonstration, services
and case management have played a critical role in family stability and
reducing time in out of home care for children of homeless families.
CSH recommends an additional $20 million in CAPTA discretionary grants
to allow ACF to attach services and case management to Family
Unification vouchers that serve families involved with child welfare or
youth exiting foster care.
Social Innovation Fund, CNCS
CSH recommends providing $80 million for the Social Innovation Fund
(SIF) at CNCS and 20 percent of the funding be set aside for Pay for
Success Initiatives.
CSH is actively involved with Social Innovation Fund projects and
Pay for Success projects that are geared towards reducing healthcare
costs for homeless populations that are high utilizers of emergency
healthcare systems. Through the Social Innovation Fund initiative, CSH
is working with four organizations to implement an integrated
supportive housing model that incorporates care management to help
households address behavioral and physical health conditions while
reducing costs. In addition, CSH recently received a Pay for Success
grant to help strengthen the supportive housing creation pipeline,
using the Pay for Success grant, nonprofit community-based providers
will create evidence based programs that are aimed at helping low-
income families overcome challenges and improve economic opportunities
and healthy outcomes.
Conclusion
As communities implement plans to end homelessness, work to move
people out of institutional care and seek to end the cycle of over
using public systems, they are struggling to find funding for the
services that vulnerable populations need to maintain housing. The
Federal investments in mental health services, substance abuse
treatment, primary care, youth housing, and case management discussed
above will help communities create stable housing programs and change
social systems which will prevent and end homelessness for millions of
Americans.
[This statement was submitted by Deborah DeSantis, President/CEO,
Corporation for Supportive Housing.]
______
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 for inclusion in the official Committee record. CSWE
is a nonprofit national association representing more than 2,500
individual members and more than 700 master's and baccalaureate
programs of professional social work education. I will focus my
testimony on the importance of fostering a skilled, sustainable, and
diverse social work workforce to meet the healthcare needs of the
Nation through professional education, training, and financial support
programs for social workers at the Department of Health and Human
Services (HHS) and the Department of Education (ED). CSWE requests:
------------------------------------------------------------------------
Agency Account Program Funding requested
------------------------------------------------------------------------
HHS HRSA Title VII and Title $524 million
VIII Health
ProfessionsP
Programs
HHS HRSA Title VII Mental and $10 million
Behavioral HealthP
Education and
Training Program
HHS SAMHSA-HRSA SAMHSA-HRSA $56 million
Behavioral Health
Workforce Education
and Training Grant
Program
HHS SAMHSA Minority Fellowship $10.7 million,
Program including at least
$5.4 million for MFP
core activities
ED N/A Pell Grant $5,915 for the maximum
Pell Grant
ED N/A GAANN $31 million
ED N/A Loan Repayment Support without a cap
Programs on repayment
HHS NIH Overall Funding For $32 billion
National Institutes
of Health
------------------------------------------------------------------------
Recruitment and retention in social work continues to be a serious
challenge that threatens the workforce's ability to meet societal
needs. The U.S. Bureau of Labor Statistics estimates that employment
for social workers is expected to grow faster than the average for all
occupations through 2022.\1\ While CSWE understands the difficult
funding decisions facing Congress, it is my hope that the Committee
will prioritize funding for health professions training in fiscal year
2016 to help ensure that the Nation continues to foster a sustainable,
skilled, and culturally competent workforce that will be able to keep
up with the increasing demand for social work services and meet the
unique healthcare needs of diverse communities.
---------------------------------------------------------------------------
\1\ U.S. Bureau of Labor Statistics. 2012. Occupational Outlook
Handbook: Social Workers, http://data.bls.gov/cgi-bin/print.pl/oco/
ocos060.htm. Retrieved March 21, 2014.
---------------------------------------------------------------------------
health resources and services administration
title vii and title viii health professions programs
CSWE urges the Committee to provide $524 million in fiscal year
2016 for the health professions education programs authorized under
Titles VII and VIII of the Public Health Service Act and administered
through the Health Resources and Services Administration (HRSA), which
is equal to the fiscal year 2012 enacted level. HRSA's Title VII and
Title VIII health professions programs represent Federal programs
designed to train healthcare providers in an interdisciplinary way to
meet the healthcare needs of all Americans, including the underserved
and those with special needs, and expand minority representation in the
healthcare workforce. The Title VII and Title VIII programs, for which
social workers and social work students are eligible, provide loans,
loan guarantees, and scholarships to students, as well as grants to
institutions of higher education and non-profit organizations to help
build and maintain a robust healthcare workforce.
In the 2010 reauthorization of the Title VII and Title VIII
programs, a new Title VII program was authorized in the Patient
Protection and Affordable Care Act (Public Law 111-148), which
recognized the severe shortages of mental and behavioral health
providers within the healthcare workforce. The Mental and Behavioral
Health Education and Training (MBHET) Grants Program provides grants to
institutions of higher education (schools of social work and other
mental health professions) for faculty and student recruitment, as well
as professional education and training. The program received first-time
funding of $10 million in the final fiscal year 2012 appropriations
bill. ``In Academic Year 2013-2014, the Mental and Behavioral Health
Education and Training (MBHET) grants supported more than 190 graduate-
level students participating in either a social work practicum or a
pre-degree internship in clinical psychology.'' \2\
---------------------------------------------------------------------------
\2\ Department of Health and Human Services fiscal year 2016,
Health Resources and Services Administration, Justification of
Estimates for Appropriations Committees, http://www.hrsa.gov/about/
budget/budgetjustification2016.pdf, Retrieved March 3, 2015, Pg 152.
---------------------------------------------------------------------------
Also, CSWE supports the creation of the Clinical Training in
Interprofessional Practice Program, funded in the President's fiscal
year 2016 Budget Request, as long as it would include social workers.
This program would promote the training of interprofessional teams that
can provide high quality care for patients and communities. In these
teams, CSWE encourages the explicit inclusion of social workers.
substance abuse and mental health services administration/health
resources and services administration
behavioral health workforce education and training program
The Behavioral Health Workforce Education and Training (BHWET)
Program, a partnership between HRSA and the Substance Abuse and Mental
Health Services Administration (SAMHSA), has provided critical support
to increase the number of behavioral health professionals. This program
builds on HRSA's mental and behavioral health training efforts by
providing important grant funding for mental health and substance abuse
workforce serving children, adolescents, and transitional-age youth at
risk for developing, or who have developed, a recognized behavioral
health disorder.\3\ This program is significant to CSWE and social
work. In 2015, for the first year of this program, social work programs
were awarded about $19,087,780 and we estimate about 4,196 students
will be served through this program. This makes important progress in
meeting the workforce needs for mental and behavioral health providers.
---------------------------------------------------------------------------
\3\ Http://www.integration.samhsa.gov/integrated-care-models/
safety_net_providers.
---------------------------------------------------------------------------
The President's fiscal year 2016 budget request would continue to
support the SAMHSA/HRSA program by providing $56 million. This funding
is an increase of $21 million above the fiscal year 2015 enacted level
and would expand behavioral health workforce activities and award
additional grants. CSWE urges the Committee to support $56 million for
the SAMHSA-HRSA BHWET Grant Program.
substance abuse and mental health services administration
minority fellowship program
CSWE urges the Committee to appropriate the highest level possible
for the Minority Fellowship Program (MFP) in fiscal year 2016. The goal
of the SAMHSA Minority Fellowship Program (MFP) is to achieve greater
numbers of minority doctoral students preparing for leadership roles in
the mental health and substance use fields.\4\ CSWE is one of six
grantees of this critical program and administers funds to exceptional
minority doctoral social work students. Other grantees include national
organizations representing nursing, psychology, psychiatry, marriage
and family therapy, and professional counselors. SAMHSA makes grants to
these six organizations, who in turn recruit minority doctoral students
into the program from the six distinct professions. CSWE administers
the funds to qualified doctoral students and helps facilitate mentoring
and networking throughout the duration of the fellowship as well as
facilitates an alumni group to help continue to engage former fellows
long after their formal fellowship has ended.
---------------------------------------------------------------------------
\4\ According to SAMHSA, minorities make up over one-fourth of the
population, but less than 20 percent of behavioral health providers
come from ethnic minority communities. Retrieved from SAMHSA Minority
Fellowship Program, http://www.samhsa.gov/minorityfellowship/.
---------------------------------------------------------------------------
In addition, CSWE also administers funds for the Minority
Fellowship Program-Youth (MYP-Y). The purpose of the program is to
reduce health disparities and improve behavioral healthcare outcomes
for racially and ethnically diverse populations by increasing the
number of culturally competent master's-level behavioral health
professionals serving children, adolescents, and populations in
transition to adulthood (aged 16--25).
Since its inception in 1974, the MFP has helped support doctoral-
level professional education for over 1,000 ethnic minority social
workers, psychiatrists, psychologists, psychiatric nurses, and family
and marriage therapists. Still, the program continues to struggle to
keep up with the demands facing these health professions. Severe
shortages of mental health professionals often arise in underserved
areas due to the difficulty of recruitment and retention in the public
sector. Nowhere are these shortages more prevalent than within Tribal
communities, where mental illness and substance use go largely
untreated and incidences of suicide continue to increase. Studies have
shown that ethnic minority mental health professionals practice in
underserved areas at a higher rate than non-minorities. Also, a direct
positive relationship exists between the numbers of ethnic minority
mental health professionals and the utilization of needed services by
ethnic minorities.\5\ The President's fiscal year 2016 budget request
includes $10.7 million to support six MFPs, two MFP-Y, two MFP-AC
grants, and three technical assistance and evaluation support
contracts. CSWE urges the Committee to support this request, including
at least $5.4 million for MFP core activities. The same as the fiscal
year 2015 enacted level.
---------------------------------------------------------------------------
\5\ U.S. Department of Health and Human Services, Substance Abuse
and Mental Health Services Administration, Center for Mental Health
Services. (2001). Mental Health: Culture, Race, and Ethnicity--A
Supplement to Mental Health: A Report of the Surgeon General. Retrieved
from http://www.surgeongeneral.gov/library/mentalhealth/cre/sma-01-
3613.pdf.
---------------------------------------------------------------------------
department of education: student aid programs
CSWE supports full funding to keep the maximum Pell Grant at $5,915
in fiscal year 2016. While Congress is understandably focused on
identifying a solution that will place the Pell Grant program on solid
ground with regard to its fiscal future, we urge you to remember that
these grants help to ensure that all students, regardless of their
economic situations, can achieve higher education. Moreover, as
described above with regard to the SAMHSA Minority Fellowship Program,
one goal of social work education is recruiting students from diverse
backgrounds (which includes racial, economic, religious, and other
forms of diversity) with the hope that they will return to serve
diverse communities once they have completed their education. In many
cases, this includes encouraging social workers to return to their own
communities and apply the skills they have acquired through their
social work education to individuals, groups, or families in need.
Without support such as Pell Grants, many low-income individuals would
not be able to access higher education, and in turn, would not acquire
the skills needed to best serve in the communities that would most
benefit from their service.
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 for this
program; however it was recognized by Congress as an area of national
need in the Higher Education Opportunity Act of 2008. We encourage ED
to recognize the importance of including social work in the GAANN
program in future years. Inclusion of social work would help to
significantly enhance graduate education in social work, which is
critically needed in the country's efforts to foster a sustainable
health professions workforce. CSWE urges the Subcommittee to provide
the fiscal year 2012 pre-sequester funding level of $31 million for the
GAANN Program and include social work as an area of national need.
CSWE supports efforts at ED to help students with high debt loads
serve in low paying positions. The Income-Based Repayment (IBR) program
and the Public Service Loan Forgiveness programs in particular help
students graduating from social work programs who wish to serve in
high-needs communities, often at a low salary level. CSWE urges the
Subcommittee to support loan repayment programs without a cap on
repayment support at ED.
national institutes of health: support for research
CSWE supports the community's recommendation for at least $32
billion for the National Institutes of Health (NIH) in fiscal year 2016
and advocates for continued investments in biomedical and health-
related research that incorporates the social and behavioral science
research necessary to better understand, and appropriately address, the
needs of high-risk populations including children, racial and ethnic
minority populations, and geriatric populations.
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 Mary Kay Cowen
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Paul Cozic
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mary Lou Chandler
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Patricia Crawford
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Marilynn Creech
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Floyd B. Cressey
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Michael L. Cressey
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Crohn's and Colitis Foundation of America
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--$32 billion for the National Institutes of Health (NIH). Increase
funding for the National Institute of Diabetes and Digestive
and Kidney Diseases (NIDDK).
--Continued Focus On Digestive Disease Research and Education at NIH,
and Support for the Inflammatory Bowel Disease (IBD) Portfolio
--$1,000,000 for the Centers for Disease Control and Prevention's
(CDC) IBD Epidemiology Activities.
_______________________________________________________________________
Chairman Blunt and members of the Subcommittee, thank you for the
opportunity to submit testimony on behalf of the Crohn's and Colitis
Foundation of America (CCFA). CCFA has remained committed to its
mission of finding a cure for Crohn's disease and ulcerative colitis
and improving the quality of life of children and adults affected by
these diseases for over 46 years.
Impacting an estimated 1.4 million Americans, 30 percent of whom
are diagnosed in their childhood years, Inflammatory Bowel Diseases
(IBD) are chronic disorders of the gastrointestinal tract which cause
abdominal pain, fever, and intestinal bleeding. IBD represents a major
cause of morbidity from digestive illness and has a devastating impact
on both patients and their families.
The social and economic impact of digestive disease is enormous and
difficult to grasp. Digestive disorders afflict approximately 65
million Americans. This results in 50 million visits to physicians,
over 10 million hospitalizations, collectively 230 million days of
restricted activity. The total cost associated with digestive diseases
has been conservatively estimated at $60 billion a year.
national institutes of health
The CCFA would like to thank the subcommittee for its past support
of digestive disease research and prevention programs at the National
Institutes of Health (NIH) and the Centers for Disease Control and
Prevention (CDC).
Specifically the CCFA recommends:
--$32 billion for NIH
--$2.066 billion for the National Institute of Diabetes and Digestive
and Kidney Disease (NIDDK)
We at the CCFA respectfully request that any increase for NIH does
not come at the expense of other Public Health Service agencies. With
the competing and the challenging budgetary constraints the
Subcommittee currently operates under, the CCFA would like to highlight
the research being accomplished by NIDDK which warrants the increase
for NIH.
In the United States today about 1.4 million people suffer from
Crohn's disease and ulcerative colitis, collectively known as IBD.
These are serious diseases that affect the gastrointestinal tract
causing bleeding, diarrhea, abdominal pain, and fever.
Complications arising from IBD can include anemia, ulcers of the
skin, eye disease, colon cancer, liver disease, arthritis, and
osteoporosis. The cause of IBD is still unknown, but research has led
to great breakthroughs in therapy.
In recent years researchers have made significant progress in the
fight against IBD. The CCFA encourages the subcommittee to continue its
support of IBD research at NIDDK and NIAID at a level commensurate with
the overall increase for each institute. CCFA would like to applaud the
NIDDK for its strong commitment to IBD research through the
Inflammatory Bowel Disease Genetics Research Consortium. CCFA also
commends NIDDK for hosting a conference on inflammatory bowel disease
in children which could lead to further research in this area. The
Committee urges NIDDK to continue efforts to identify the etiology of
the disease in order to inform the development of cures for
inflammatory bowel disease.
centers for disease control and prevention
CDC, in collaboration with a nationwide, geographically diverse
network of large managed healthcare delivery systems, has led an
epidemiological study of IBD to understand IBD incidence, prevalence,
demographics, and healthcare utilization. The group, comprised of
investigators at the Massachusetts General Hospital in Boston, Rhode
Island Hospital, the Crohn's and Colitis Foundation of America, and
CDC, has piloted the Ocean State Crohn's and Colitis Registry (OSCAR),
which includes both pediatric and adult patients. Since 2008, the OSCAR
investigators have recruited 22 private-practice groups and hospital
based physicians in Rhode Island and are that enrolling newly diagnosed
patients into the registry. This study found an average annual
incidence rate of 8.4 per 100,000 people for Crohn's disease and 12.4
per 100,000 for Ulcerative Colitis; published in Inflammatory Bowel
Disease Journal, April 2007.
--Over the course of the initial 3-year epidemiologic collaboration,
CDC laboratory scientists and epidemiologists worked to improve
detection tools and epidemiologic methods to study the role of
infections (infectious disease epidemiology) in pediatric IBD,
collaborating with extramural researchers who were funded by a
National Institutes of Health (NIH) research award.
--Since 2006, CDC epidemiologists have been working in conjunction
with the Crohn's and Colitis Foundation of American and a large
health maintenance organization to better understand the
natural history of IBD and factors that predict the course of
disease.
CCFA commends CDC for implementing a robust IBD epidemiology study
and communicating study results with the public. CCFA supports the
continued exploration of the disease burden of IBD, and communication
of these findings to patients and providers in an effort to improve
current interventions and inform best public health practices in
managing IBD.
CCFA encourages CDC to continue to support a nationwide IBD
surveillance and epidemiological program at $1 million in fiscal year
16 to expand current efforts to identify the etiology of the disease
and implement preventive measures.
conclusion
The CCFA understands the challenging budgetary constraints and
times we live in that this Subcommittee is operating under, yet we hope
you will carefully consider the tremendous benefits to be gained by
supporting a strong research and education program at NIH and CDC.
Millions of Americans are pinning their hopes for a better life, or
even life itself, on digestive disease research conducted through the
National Institutes of Health. Mr. Chairman, on behalf of our patients,
we appreciate your consideration of our view. We look forward to
working with you and your staff.
[This statement was submitted by Caren Heller, MD, Chief Scientific
Officer, National Scientific Advisory Council.]
______
Prepared Statement of Tami Cummings
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Cystic Fibrosis Foundation
On behalf of the Cystic Fibrosis Foundation (CFF) and the 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 2016. The
Foundation requests funding levels of at least $32 billion for the
National Institutes of Health (NIH) for the coming year. We encourage
special consideration and support for the National Center for Advancing
Translational Sciences (NCATS) and programs under its jurisdiction,
including the Cures Acceleration Network (CAN) and the Clinical and
Translational Science Awards (CTSA) as well as the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) and the National
Heart, Lung, and Blood Institute (NHLBI), which play a vital role in CF
research.
We also recommend that the Committee provide robust resources to
the Health Resources and Services Administration (HRSA) under the U.S.
Department of Health and Human Services (HHS) and the Centers for
Disease Control and Prevention (CDC), particularly their work to
support nationwide newborn screening programs. Further, we urge the
provision of ample funding for the Center for Medicare and Medicaid
Innovation (CMMI) under the Centers for Medicare and Medicaid Services
(CMS) to allow this agency the resources needed to update and
streamline payment systems from the traditional fee for service model.
longstanding cuts to funding impede american research and the economy
The National Institutes of Health is a showcase for American
ingenuity. The NIH uses appropriated funds wisely and effectively to
promote basic research and encourage collaboration across sectors to
develop the building blocks of drug development. Basic research is a
vital prerequisite for the discovery of new treatments and cures, and
the level to which NIH funding has been diminished is deeply troubling
and detrimental to efforts to develop treatments for serious and life
threatening diseases.
According to a recent article published in the Journal of the
American Medical Association, the NIH budget declined nearly 2 percent
per year after the mid 2000's, totaling in a full 13 percent decrease
in NIH purchasing power since 2004. This has had devastating and
lasting effects on the state of American research labs both at the NIH
and in collaborative programs across the country. Success rates for all
investigators continue to decline, and new investigators struggle to
obtain enough funding to remain in the field.
Cuts to funding at the NIH have been detrimental to those seeking
funding for cystic fibrosis research. Large Center Core Grants, awarded
by the NIDDK, support shared resources and facilities for use by
multiple investigators and provide much needed funding for clinical and
basic cystic fibrosis research centers. As funding dwindles,
competition for these grants has greatly increased, and large centers
are facing the realities of losing their funding. This is not only
detrimental to the individual centers, but also causes immense
interruption and uncertainty in CF research overall.
While the funding provided to the NIH has been inadequate to
fulfill the urgent need for basic research, work performed at the
agency has had large benefits for the U.S. economy, supporting more
than 402,000 jobs and $57 billion in economic output in 2012 according
to a report by United for Medical Research. Increased investment in
this agency can provide even greater economic payoff and support for
the scientific progress that makes the United States the worldwide
leader in biomedical research.
collaborative efficiency to promote cost-efficient research
As the Committee considers its funding priorities for the coming
fiscal year, we urge consideration of the critical role that NIH plays
in the development of treatments for cystic fibrosis and in bringing
together various stakeholders in order to streamline the research
process.
NIH-funded advances like the mapping of the human genome and the
development of high throughput screening were essential to the creation
of KalydecoTM, a cystic fibrosis treatment approved in 2012.
This breakthrough drug, developed by Vertex Pharmaceuticals with
significant support from the CF Foundation, is the first to treat the
underlying cause of CF in those with particular genetic mutations that
impact about 8 percent of the CF population.
More exciting advancements are in the pipeline, as successful phase
3 clinical trials have been completed on a combination of Kalydeco and
a new compound, VX-809. This combination would treat those with the
most common CF mutation, comprising about 50 percent of those with CF
in the United States. A New Drug Application (NDA) has been submitted
to the FDA for this treatment, and a decision is expected by July 6.
Research supported by the NIH takes place at thousands of
institutions across the country, and supporting funding for these
programs is a vital and efficient way to foster a rich ecosystem of
collaborative public and private stakeholders all over the Nation. The
CF Foundation works with the NIH to fund and organize a number of
initiatives. This collaborative research model allows for an efficient,
well-funded research process. For example, the OPTIMIZE study, which is
jointly funded by the NIH and the CF Foundation, has brought together
hospital systems in nearly 30 States to compare the effectiveness of
antibiotics treatments for lung infections in those with cystic
fibrosis. The Foundation urges the committee to allow cost-effective
and efficient collaboration to expand by providing funding for the NIH
to continue growing its efforts.
NIH also jointly funds a research program at the University of Iowa
to study the effects of CF in a pig model. The program, funded through
research awards from the NHLBI and the CF Foundation, bears great
promise to help make significant developments in the search for a cure.
In addition, we urge the Committee to direct support toward the
continuation and expansion of research networks, such as NIH's
Childhood Liver Disease Research Network (ChiLDReN) consortium at the
NIDDK. This successful collaboration helps researchers discover
treatments not only for CF liver disease but for other diseases that
affect thousands of children each year.
The CF Foundation also urges the Committee to support and
facilitate collaborative efforts by the Food and Drug Administration
and the National Institutes of Health, such as the Regulatory Science
Initiative and initiatives that allow for the placement of employees
who will be employed part-time at FDA and part-time at the National
Institutes of Health (NIH). Collaboration between the NIH and FDA has
the potential to help move innovative new drugs more quickly through
the development process and into the hands of patients by leveraging
the best ideas and ensuring that the NIH has the resources to support
all aspects of the research process, including updated tools and
technologies as well as adequate staff support.
the precision medicine initiative
There are more than 1900 mutations of the CF gene that can impact
those with CF, and with the advent of precision medicine, therapies
like Kalydeco are being customized to treat a patient's specific
genetic makeup. We urge the Committee to support the President's full
funding request of $215 million for the Precision Medicine Initiative
to spearhead the research and development of therapies that treat the
underlying genetic cause of different diseases.
This promising new frontier will likely necessitate changes in the
structure of research being performed at the NIH. It is yet unclear if
the Precision Medicine Initiative will ultimately extend to all
institutes housed by the agency or if it will be a supplemental focus
of several select research groups. The Foundation urges the NIH to
adopt precision medicine as a focus in a wide array of applicable
areas, but the undertaking of such a broad and powerful initiative is
concerning given the current state of funding levels at the NIH.
The agency does not have enough support to undertake this vital
initiative without drawing much needed resources from other research
areas. As such, the Foundation strongly supports robust funding for
this agency so that it can have the freedom it needs to promote the
development of personalized therapies for serious, life threatening
conditions like cystic fibrosis.
preparing cmmi for a new era of medicine
It is additionally important as the Precision Medicine Initiative
is developed and the scientific community concentrates efforts on
innovative new ways to treat disease, that we also support similar
innovation in delivery system reform. To that end, we urge the
Committee to provide adequate resources and support the work of the
Center for Medicare and Medicaid Innovation (CMMI) and their work to
change payment systems to reward greater quality and value of care,
rather than the traditional fee for service system.
prioritizing a centralized institutional review board
Trials evaluating CF therapies are multi-site trials that can be
slowed by repetitive review by local institutional review boards
(IRBs). We commend the National Institutes of Health (NIH) for
publishing and seeking comment on a policy that is intended to produce
efficiencies in the clinical trials process while still protecting
research participants by centralizing and simplifying the rigorous
clinical trial review process.
The CF Foundation sees the NIH as the logical choice to lead the
centralization of institutional review boards and requests that the
committee take special consideration of the funds needed to implement
this valuable initiative. At a time when research resources are
restrained, efforts to reduce redundancy and improve efficiency in
research are of the utmost importance.
advancing translational science at the nih
The Foundation requests increased 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 to make translational science more efficient, less
expensive, and less risky.
The specific programs housed in NCATS are integral to this mission,
including the Clinical and Translational Science Awards (CTSA), the
Cures Acceleration Network (CAN), and the Therapeutics for Rare and
Neglected Diseases (TRND) program. They are designed to transform the
way in which clinical and translational research is conducted and
funded. NIH Director Dr. Francis Collins has cited the Cystic Fibrosis
Foundation's successful Therapeutics Development Network (TDN) as a
model for TRND's innovative therapeutics development model.
clinical trial data sharing
The CF Foundation is enthusiastic about the potential for clinical
trials, clinical care, claims, and other healthcare-related data to be
utilized to improve drug discovery and development. The Foundation has
been a pioneer in the development and utilization of a robust data
repository through the CF patient registry, and our Therapeutics
Development Network (TDN) has successfully encouraged clinical partners
to share data. We ask that Congress support efforts by the NIH to
explore strategies and guidelines for clinical trial data sharing. As
drug development research advances, data sharing is vital to the
acceleration and efficiency of new discovery.
nationwide newborn screening programs
Newborn screening is critically important to the CF community
because it allows for the early detection and treatment of disease
symptoms as well as early use of CF corrector therapies, which can
significantly reduce cumulative damage caused by the disease.
The Foundation urges the Committee to provide ample funding for
HRSA, which evaluates the effectiveness of newborn screening and
follow-up programs and provides grants for programs to improve newborn
screening programs, educate parents and healthcare providers about
newborn screening, and improve follow-up care for infants with a
condition detected through newborn screening
We also encourage the Committee to provide adequate funding to the
CDC, 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 Innovative
Molecular Quality Program.
conclusion
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 and other complications. This
is a time of great hope and optimism for the cystic fibrosis community
and those with other rare diseases as more research is being done to
effectively treat these life threatening conditions. Providing at least
$32 billion for the National Institutes of Health as well as robust
funding for other relevant agencies will not only support and expand
the important work already being done in biomedical programs and
translational science, but also encourage cost-efficient and effective
collaboration of varied experts and stakeholders.
We stand ready to work with the Committee and Congressional leaders
on the challenges ahead. Thank you for your consideration.
[This statement was submitted by Robert J. Beall, Ph.D., President
and CEO, Cystic Fibrosis Foundation.]
______
Prepared Statement of Elinor Deininger
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Justin Deraway
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Digestive Disease National Coalition
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--$32 billion for the National Institutes of Health (NIH) at an
Increase of $1 billion over fiscal year 2015. Increase funding
for the National Cancer Institute (NCI), the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute of Allergy and Infectious Diseases (NIAID)
by 12 percent.
--Continue focus on Digestive Disease Research and Education at NIH,
including Inflammatory Bowel Disease (IBD), Hepatitis and other
Liver Diseases, Irritable Bowel Syndrome (IBS), Colorectal
Cancer, Endoscopic Research, Pancreatic Cancer, and Celiac
Disease.
--$62.82 million for the Centers for Disease Control and Prevention's
(CDC) Division of Viral Hepatitis.
--$50 million for the Center For Disease Control and Prevention's
(CDC) Colorectal Cancer Screening and Prevention Program.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and esteemed members of the
Subcommittee, thank you for the opportunity to again submit testimony
to the Subcommittee. Founded in 1978, the Digestive Disease National
Coalition (DDNC) is a voluntary health organization comprised of 50
professional societies and patient organizations concerned with the
many diseases of the digestive tract. The DDNC promotes a strong
Federal investment in digestive disease research, patient care, disease
prevention, and public awareness. The DDNC is a broad coalition of
groups representing disorders such as Inflammatory Bowel Disease (IBD),
Hepatitis and other liver diseases, Irritable Bowel Syndrome (IBS),
Pancreatic Cancer, Ulcers, Pediatric and Adult Gastroesophageal Reflux
Disease, Colorectal Cancer, and Celiac Disease.
The social and economic impact of digestive disease is enormous and
difficult to grasp. Digestive disorders afflict approximately 65
million Americans. This results in 50 million visits to physicians,
over 10 million hospitalizations, collectively 230 million days of
restricted activity. The total cost associated with digestive diseases
has been conservatively estimated at $60 billion a year.
The DDNC would like to thank the Subcommittee for its past support
of digestive disease research and prevention programs at the National
Institutes of Health (NIH) and the Centers for Disease Control and
Prevention (CDC).
Specifically the DDNC recommends:
--32 billion for the NIH.
--$2.066 billion for the National Institute of Diabetes and Digestive
and Kidney Disease (NIDDK).
We at the DDNC respectfully request that any increase for NIH does
not come at the expense of other Public Health Service agencies. With
the competing and the challenging budgetary constraints the
Subcommittee currently operates under, the DDNC would like to highlight
the research being accomplished by NIDDK which warrants the increase
for NIH.
inflammatory bowel disease
In the United States today about 1.4 million people suffer from
Crohn's disease and ulcerative colitis, collectively known as
Inflammatory Bowel Disease (IBD). These are serious diseases that
affect the gastrointestinal tract causing bleeding, diarrhea, abdominal
pain, and fever. Complications arising from IBD can include anemia,
ulcers of the skin, eye disease, colon cancer, liver disease,
arthritis, and osteoporosis. The cause of IBD is still unknown, but
research has led to great breakthroughs in therapy.
In recent years researchers have made significant progress in the
fight against IBD.
The DDNC encourages the subcommittee to continue its support of IBD
research at NIDDK and NIAID at a level commensurate with the overall
increase for each institute. The DDNC would like to applaud the NIDDK
for its strong commitment to IBD research through the Inflammatory
Bowel Disease Genetics Research Consortium. The DDNC urges the
Consortium to continue its work in IBD research. Therefore the DDNC and
its member organization the Crohn's and Colitis Foundation of America
encourage the CDC to continue to support a nationwide IBD surveillance
and epidemiological program in fiscal year 2016.
viral hepatitis: a looming threat to health
The DDNC applauds all the work NIH and CDC have accomplished over
the past year in the areas of hepatitis and liver disease. The DDNC
urges that funding be focused on expanding the capability of State
health departments, particularly to enhance resources available to the
hepatitis State coordinators. The DDNC also urges that CDC increase the
number of cooperative agreements with coalition partners to develop and
distribute health education, communication, and training materials
about prevention, diagnosis and medical management for viral hepatitis.
The DDNC supports $62.82 million for the CDC's Hepatitis Prevention
and Control activities. The hepatitis division at CDC supports the
hepatitis C prevention strategy and other cooperative nationwide
activities aimed at prevention and awareness of hepatitis A, B, and C.
The DDNC also urges the CDC's leadership and support for the National
Viral Hepatitis Roundtable to establish a comprehensive approach among
all stakeholders for viral hepatitis prevention, education, strategic
coordination, and advocacy.
colorectal cancer prevention
Colorectal cancer is the third most commonly diagnosed cancer for
both men and woman in the United States and the second leading cause of
cancer-related deaths. Colorectal cancer affects men and women equally.
The DDNC recommends a funding level of $50 million for the CDC's
Colorectal Cancer Screening and Prevention Program. This important
program supports enhanced colorectal screening and public awareness
activities throughout the United States. The DDNC also supports the
continued development of the CDC-supported National Colorectal Cancer
Roundtable, which provides a forum among organizations concerned with
colorectal cancer to develop and implement consistent prevention,
screening, and awareness strategies.
pancreatic cancer
In 2013, an estimated 33,730 people in the United States will be
found to have pancreatic cancer and approximately 32,300 died from the
disease. Pancreatic cancer is the fifth leading cause of cancer death
in men and women. Only lout of 4 patients will live 1 year after the
cancer is found and only l out of 25 will survive 5 or more years. The
National Cancer Institute (NCI) has established a Pancreatic Cancer
Progress Review Group charged with developing a detailed research
agenda for the disease. The DDNC encourages the Subcommittee to provide
an increase for pancreatic cancer research at a level commensurate with
the overall percentage increase for NCI and NIDDK.
irritable bowel syndrome (ibs)
IBS is a disorder that affects an estimated 35 million Americans.
The medical community has been slow in recognizing IBS as a legitimate
disease and the burden of illness associated with it. Patients often
see several doctors before they are given an accurate diagnosis. Once a
diagnosis of IBS is made, medical treatment is limited because the
medical community still does not understand the pathophysiology of the
underlying conditions.
Living with IBS is a challenge, patients face a life of learning to
manage a chronic illness that is accompanied by pain and unrelenting
gastrointestinal symptoms. Trying to learn how to manage the symptoms
is not easy. There is a loss of spontaneity when symptoms may intrude
at any time. IBS is an unpredictable disease. A patient can wake up in
the morning feeling fine and within a short time encounter abdominal
cramping to the point of being doubled over in pain and unable to
function.
Mr. Chairman, much more can still be done to address the needs of
the nearly 35 million Americans suffering from irritable bowel syndrome
and other functional gastrointestinal disorders. The DDNC recommends
that NIDDK increase its research portfolio on Functional
Gastrointestinal Disorders and Motility Disorders.
digestive disease commission
In 1976, Congress enacted Public Law 94-562, which created a
National Commission on Digestive Diseases. The Commission was charged
with assessing the state of digestive diseases in the U.S., identifying
areas in which improvement in the management of digestive diseases can
be accomplished and to create a long-range plan to recommend resources
to effectively deal with such diseases.
The DDNC recognizes the creation of the National Commission on
Digestive Diseases, and looks forward to working with the National
Commission to address the numerous digestive disorders that remain in
today's diverse population.
conclusion
The DDNC understands the challenging budgetary constraints and
times we live in that this Subcommittee is operating under, yet we hope
you will carefully consider the tremendous benefits to be gained by
supporting a strong research and education program at NIH and CDC.
Millions of Americans are pinning their hopes for a better life, or
even life itself, on digestive disease research conducted through the
National Institutes of Health. Mr. Chairman, on behalf of the millions
of digestive disease sufferers, we appreciate your consideration of the
views of the Digestive Disease National Coalition. We look forward to
working with you and your staff.
[This statement was submitted by Costas Kefalas, MD, President,
Digestive Disease National Coalition.]
______
Prepared Statement of Mary Dimmock
My name is Mary Dimmock and I am submitting this testimony on
behalf of my son and the nearly one million people in the United States
who suffer from Myalgic Encephalomyelitis, or ME, also called chronic
fatigue syndrome (CFS) in the U.S. The Centers for Disease Control
(CDC) and the National Institutes of Health (NIH) are the two primary
agencies that are tasked with implementing the Federal response to ME.
ME is a devastating, chronic, neuroimmune disease that affects one
million Americans as young as five. It strikes without warning and is
more debilitating than congestive heart failure, multiple sclerosis,
and end-stage renal disease. The most severely ill patients never get
out of bed, are unable to feed themselves and cannot tolerate light or
sound. Many patients are unable to work and an estimated 250,0000 are
bedridden or housebound. The annual economic impact in the U.S. is $18-
24 billion. There are no treatments, recovery is rare, and patients may
die up to 25 years prematurely from cancer, cardiovascular disease, or
suicide.
But what sets this disease apart from other devastating diseases is
the response of Health and Human Services for the last 30 years, a
response that has been so flawed that it has not only failed to produce
a single meaningful outcome but worse, has turned ME into a pariah.
As documented in a recent report by the Institute of Medicine and a
separate report by NIH's Office of Disease Prevention, there are no
treatments, no diagnostics and little symptomatic relief. Many doctors
believe the disease is psychological or question whether it is real.
Medical care is nonexistent or inadequate at best and too often abusive
and harmful. Disbelief and dismissal is widespread and leaves patients
deeply stigmatized and marginalized, sometimes by their own families.
As the IOM report states, there has been a ``paucity of research
funding'' and ``remarkably little research'' into disease etiology,
pathophysiology, treatments, diagnostics or natural history. What
little research has been done is confounded by conflicting evidence
from studies that include ``CFS'' patients who have non-specific
medically unexplained fatigue but not ME. Patients too often commit
suicide because of the stigma, the knowledge that no one is doing
anything about ME and the lack of hope of ever getting better.
At a recent Senate appropriations hearing, NIH touted the future of
precision medicine. But for ME patients, precision medicine is a
pipedream because HHS has failed to provide research funding to uncover
even the most basic aspects of this disease. What ME patients
desperately need is any medicine capable of addressing their core
disease. What ME patients desperately need are doctors who believe they
are sick and researchers who study their disease so that patients can
have hope in a better future.
Our country has failed ME patients for 30 years, not because ME is
an intractable scientific problem but because of misguided HHS policies
and actions that include overly broad ``CFS'' disease definitions,
erroneous medical education, an overemphasis on psychological issues,
flawed or non-existent research strategies, paltry research funding,
NIH institutional barriers that make it difficult to access that
funding, a lack of coordination across agencies and HHS's resistance to
working in open and honest collaboration with ME patients and disease
experts to move this disease forward.
Underscoring all of these issues is the fact that ME has been
exiled outside of the NIH institutes, academic centers and medical
societies that drive research and delivery of medical care in this
country. Not a single NIH institute has been willing to take
responsibility for this disease, leaving ME outside of the
prioritization processes that decide what diseases get funding. This
lack of priority and funding along with the stigma and confusion on the
nature of the disease have driven away researchers and likely resulted
in the failure of any medical society to take ownership of this
disease.
One objective measure of HHS's failure to respond appropriately to
ME is NIH's paltry research funding; at $5 million, ME funding ranks at
226 out of 234 diseases funded, below hay fever. Spending on ME is $5
per patient while spending on multiple sclerosis, a disease with
similar morbidity and lower prevalence, is $255 per patient, and
spending on AIDS is $2,482 per patient, even though AIDS is now a
livable disease. Dr. Nancy Klimas, an immunologist who treats both HIV/
AIDS patients and ME patients emphasized this point, saying that her
HIV/AIDS patients are ``hale and hearty'' due to decades of research
while her ME patients remain ``terribly ill and unable to work or
participate in the care of their families.`` What is the political
calculus that has consigned ME patients to the medical waste heap?
My son is one of the victims of HHS's failures. Five years ago, he
was a recent honors college graduate looking forward to graduate school
when he suddenly became ill with ME. Since then, he has been unable to
work or go to school, can no longer read or write more than simple
paragraphs, cannot tolerate noise, and is largely homebound and often
bedbound. Not only are there no treatments but doctors have told him he
is just depressed; is on the ``wrong life path;'' and that he just
``wants'' to get onto disability, as though that is preferable to the
vibrant life he lost. The painful fact is that as things stand today,
he will likely spend the rest of his life in terrible debility until he
dies prematurely. A promising life crushed by the neglect and disdain
of his own government.
For years, ME patients, experts and HHS' own advisory committee
(CFS Advisory Committee) has made repeated recommendations for more
money, specific types of research, changes to CDC's medical education,
an overall strategy, and an appropriate disease definition. Congress
has conducted a GAO investigation, has provided guidance through its
appropriations process back to at least 1995 and has written letters to
HHS with targeted requests. All of these have been largely ignored,
with HHS stating that there ``remains a lack of definitive evidence
regarding the etiology, diagnosis, and treatment'' and there are too
few interested researchers to warrant more money. This is ironic given
that it is HHS that has created this situation and also rings as untrue
in the face of the exciting findings from research that is privately
funded, largely by wealthy patients. HHS has also said that ``the [HHS]
agencies have the responsibility for determining funding for all
diseases and conditions, unless directed by Congress'' but HHS's agency
prioritization and budget stewardship processes have utterly failed to
provide for ME because it is exiled outside of those processes.
It is scientifically inexcusable and morally wrong that one million
terribly disabled Americans have been mistreated and discarded in this
way for so many years. This must stop now and for that to happen,
Congress must act. Congress must address the government's failure to
confront the disease of ME by directing HHS to provide:
--A fair share of funding for biomedical research commensurate with
the burden of this disease and aggressively applied to validate
existing findings and study the known gaps in etiology,
pathophysiology, diagnostics and treatments. Based on the level
of funding provided to similarly disabling but lower prevalence
diseases, a fair share would be roughly $250 million a year. If
the President's budget is passed, a portion of the $1 billion
in new funding for NIH should be directed to meet this
critical, unmet need. Otherwise, NIH's current prioritization
processes must be revised to address the unmet needs of
diseases that fall outside of its institutes. There are no
excuses for not providing a fair share of research funding.
--Regional centers of excellence to address the critical need for
multi-disciplinary research and the critical gaps in effective,
accessible medical care for patients.
--A definitive, time-bound plan to reverse the organizational and
institutional barriers resulting from ME being exiled outside
of NIH's segmented Institute structure.
--A disease definition such as the Canadian Consensus Criteria for
both clinical care and research that accurately describes ME
and differentiates it from the overly broad and non-specific
``CFS'' disease definitions and the ``CFS'' label.
--A plan to replenish the aging population of researchers and
clinicians before it is too late for the next generation to
learn from them.
--Disease appropriate clinical guidance and medical education that
teaches doctors about the true nature of ME and the best
practices to diagnose and treat it.
--A proactive medical education campaign to counter the false beliefs
about ME that have been perpetuated for decades.
--A community-driven comprehensive, fully funded, cross-agency
strategy, with well defined objectives, timelines and
measurable benchmarks and infused with the sense of urgency
warranted by the debility of this disease. Such a plan must
aggressively foster the academic and drug industry investment
that will be required to help these patients.
--A new model for engaging the key stakeholders--the ME patients and
disease experts--that is characterized by listening, openness,
transparency and collaboration.
I appreciate the Subcommittee's consideration of these requests an
am available to answer any questions or provide additional background.
______
Prepared Statement of Donna J. Dorgan
Dear Senators: Thank you for the opportunity to address your
Committee.
Currently, the Department of Labor does not account for all the
money and time spent defending Senior Executive Service managers and
senior management officials who engage in discrimination and other
inappropriate activities.
The DOL paid out $820,000 to settle the Whitmore whistleblower
retaliation case. Whitmore worked for OSHA and OSHA is charged with
protecting whistleblowers. The $820,000 does not account for the
hundreds of hours spent by Department of Labor and Department of
Justice employees trying to justify and defend the Department.
The situation is more egregious in the Employee Benefit Security
Administration. For example, the DOL paid out $1.5 million to settle
three discrimination lawsuits to former EBSA employees Janet Schmidt,
Ekatrina Uzylan and Karin Weng. The DOL and DOJ expended hundreds of
hours defending management through a scorched earth policy of
litigation. Meanwhile the discriminating officials continued to work
for the Department, receive bonuses and promotions. The same officials
were involved in all three cases. These are but a few examples.
The problems are not limited to discrimination. For example, one
EBSA manager viewed pornography on the government computer. When an
employee complained, she was transferred, not the manger. It is
analogous to the response of the Catholic Church to priest sex abuse.
Another SES manager, Jonathan Kay, has served on the board of the
Working Theater while serving as the Regional Director of the New York
Regional Office of EBSA. At the same time, his wife, Patricia
Rodenhausen Kay, was the Regional Solicitor of Labor in New York.
Mr. and Mrs. Kay engaged in fundraising activities and made
donations to the Working Theater. Neither he nor his wife recused
themselves from Department of Labor investigations or cases involving
board members, their organizations or donors to the Working Theater.
Many of the members were associated with Taft-Hartley benefit plans and
labor unions.
Since EEO payments and litigation costs are not allocated to
specific agencies, they do not account for these funds; it is buried in
the budget.
It is respectfully submitted that the DOL account for the all
funds, including hours and time spent by employees, that it expends
defending managers who engage in inappropriate activities. Managers who
are found to have committed the acts, should be terminated, not
promoted.
Respectfully yours,
Donna Dorgan
______
Prepared Statement of Martha M. Dwyer
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
My brother Thomas Dwyer, who is 58, has resided at Southbury
Training School (``STS''), a congregate facility in Southbury, CT,
since 1973. He is profoundly what was called ``retarded'' and is
severely autistic and bi-polar and has Parkinsons and PICA. Tommy is
receiving excellent care from a trained and experienced staff many
members of which have known and cared for him for years. STS is his
home and its staff is the part of his family that he sees regularly. In
addition, it is on a beautiful campus, has a care unit that minimizes
his hospital stays, nurses and doctors who know him on staff, a dental
clinic, specialists who visit who are familiar with his conditions and
a level of care that cannot be matched in the community.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
Please protect my brother and others like him and include the
requested language in your Labor, HHS, and Education and Related
Agencies bill.
Thank you for your attention, Martha M. Dwyer
______
Prepared Statement of the Dystonia Medical Research Foundation
summary of recommendations for fiscal year 2016
_______________________________________________________________________
--Provide $32 billion for the National Institutes of Health (NIH) and
proportional increases across its Institutes and Centers
--Continue to support natural history studies on dystonia, like the
Dystonia Coalition within the Rare Disease Clinical Research
Network (RDCRN) coordinated by the Office of Rare Diseases
Research (ORDR) in the National Center for Advancing
Translational Sciences (NCATS)
--Expand 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), the National Eye Institute (NEI), and NCATS
_______________________________________________________________________
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 (nih)
The DAN 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, Congress should support NINDS, NCATS, 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), the
National Eye Institute (NEI), and the Office of Rare Diseases Research
(ORDR) within the National Center for Advancing Translational Sciences
(NCATS).
ORDR coordinates the Rare Disease Clinical Research Network (RDCRN)
which provides support for studies on the natural history,
epidemiology, diagnosis, and treatment of rare diseases. RDCRN includes
the Dystonia Coalition, a partnership between researchers, patients,
and patient advocacy groups to advance the pace of clinical research on
cervical dystonia, blepharospasm, spasmodic dysphonia, craniofacial
dystonia, and limb dystonia. The Dystonia Coalition has made tremendous
progress in preparing the patient community for clinical trials as well
as funding promising studies that hold great hope for advancing our
understanding and capacity to treat primary focal dystonias. Studies
like the Coalition remain a priority for the community and Congress
should continue to support these initiatives.
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.
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.
In summary, the DAN recommends the following for fiscal year 2016:
--Provide $32 billion for NIH and a proportional increase for its
Institutes and Centers
--Support natural history studies on dystonia like the Dystonia
Coalition, part of the Rare Diseases Clinical Research Network
coordinated by ORDR within NCATS
--Expand the dystonia research portfolio at NIH through NINDS, NIDCD,
NEI, and NCATS
the dystonia advocacy network
The Dystonia Medical Research Foundation submits these comments on
behalf of the Dystonia Advocacy Network (DAN), a collaborative network
of five patient organizations: the Benign Essential Blepharospasm
Research Foundation, the Dystonia Medical Research Foundation, the
National Spasmodic Dysphonia Association, the National Spasmodic
Torticollis Association, and ST/Dystonia, Inc. The DAN advocates for
all persons affected by dystonia and supports a legislative agenda that
meets the needs of the dystonia community.
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 well being of affected individuals
and their families.
Thank you for the opportunity to present the views of the dystonia
community, we look forward to providing any additional information.
[This statement was submitted by Janet Hieshetter, Executive
Director, Dystonia Medical Research Foundation.]
______
Prepared Statement of Jaymie Easterling
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Elder Justice Coalition
Chairman Blunt, Ranking Member Murray: On behalf of the bipartisan
Elder Justice Coalition and its 3,000 members, we thank you for the
opportunity to offer testimony in support of the Department of Health
and Human Services' proposed $25 million funding for the Elder Justice
Act.
Our topic has been and must always be a bipartisan issue:
preventing elder abuse, neglect and exploitation. We ask this
Subcommittee to provide this funding in a bipartisan fashion as part of
the solution to the national disgrace of elder abuse.
Elder abuse is a large and growing problem in our society.
According to Department of Justice figures, there are more than six
million victims of elder abuse per year; roughly one of every ten
persons over 60 will end up a victim of elder abuse. However, a New
York State study found for every elder abuse case known to agencies,
twenty-four were unreported. Victims of elder financial abuse lose an
estimated $2.9 billion per year, which can include entire life savings.
A new study published by True Link Financial found that the problem of
financial exploitation may be as great as $36 billion per year. One-
half of those with dementia will fall victim to elder abuse, neglect
and/or exploitation. In short, the situation is dire.
The Elder Justice Act, passed in 2010, would address these
problems. The Act, if funded, would strengthen the State Long-Term Care
Ombudsmen Program. It would provide for the development of forensic
centers to study the problem of abuse and how we can better detect
abuse and potential abusers. It would also enhance and train long-term
care staffing in facilities.
Funding for the Elder Justice Act has not been made in order to
fulfill the provisions of the Act. We are very grateful for the first-
time funding this Committee made last year for the Act in the amount of
$4 million, but the Act needs more of an investment in order to fulfill
its potential. This is why we support funding for the Act at the
proposed $25 million level.
The funding request includes:
--$15 million for additional demonstration grants to expand
participation in the National Adult Maltreatment Reporting
System (NAMRS, a national APS data collection system) to up to
15 additional States, bringing approximately 45 percent of the
56 APS jurisdictions online in the second year of
implementation. (The fiscal year 2015 funding is being
distributed through competitive grants to approximately ten
States.)
--$3 million to operate, maintain, and provide technical assistance
to the NAMRS system.
--$3.25 million to analyze and evaluate APS services nationwide for
effectiveness, evidence-based and best practices, continuing
work begun in fiscal year 2015.
--$3 million for research into screening for elder abuse, neglect and
exploitation, and foundational research.
--$0.75 million for program implementation and oversight.
Data collection is essential to understanding and preventing elder
abuse. Other forms of crime, such as child abuse, have standardized
national databases. The National Child Abuse and Neglect Data System
(NCANDS) database has been in existence since 1998. This allows States
to more easily discover trends and researchers to learn about
perpetrators and victims. Further, a lack of data has hurt the elder
justice community's efforts to call awareness to the problem of elder
abuse and to compete effectively for resources in an era where data
often drives dollars. Continuing the work started in fiscal year 2013
with the Prevention and Public Health Fund money which established
NAMRS and continued with the $4 million appropriated in fiscal year
2015 is vital for consistency in the field.
The Coalition also supports the evaluation and analysis of APS
programs using an evidence-based approach and best practices. To be
effective, APS programs must have consistency and high quality
nationally. Elder abuse happens in all States and congressional
districts, and in some cases, elder abuse happens across county and
State lines. Thus, having uniform best practices is key to ensuring
that victims receive uniform services.
Research in the elder abuse field, like data collection, is
desperately needed. Money has never been specifically appropriated for
research; the limited resources the field has go straight into
assisting victims. However, victims can be more appropriately--and
cost-effectively--assisted if they are identified early via effective
screening. A great deal of trauma can be prevented with effective
screening. Thus, research into how to screen accurately is exceedingly
important.
This increased investment of $25 million would mean that current
Federal and State resources could be used more effectively while also
responding to elder abuse systematically. For these reasons as well as
the potential of lowering rates of future victimization the investment
would provide a solid return on investment.
This is an investment because, according to the National Center on
Elder Abuse, the direct medical costs associated with elder abuse now
exceed $5 billion annually. Since these victims are older adults,
Medicare and Medicaid bear the bulk of these costs. Other Federal
programs may end up paying for elder abuse victims, including income
support programs, because financial abuse victims who were once self-
supporting may lose everything in one scam. We can begin to save money
for the Federal government if we make this relatively small investment
today.
We also support maintaining, if not increasing, the amount of money
available for Social Services Block Grant programs, which in addition
to providing APS funding, also provides important funding for
supportive services available to elder abuse victims. APS is primarily
funded through optional State distributions from their Social Services
Block Grant allotment; only 37 States provide any additional Federal
funding for their Federal APS programs.
Elder abuse victims can be household names like the late Mickey
Rooney, Brooke Astor, or Casey Kasem. We offer our testimony for them
today but also for those who are not known to the public. The people
you have never heard of, the stories that don't even make the local
news, are the ones who need a voice that can be heard in this
testimony.
Since the Elder Justice Act has many more important provisions that
are not funded in this proposal, please view this $25 million as a
floor to build on, and not a ceiling. We look forward to working with
you to ensure that this elder justice appropriation provides us with
the best possible return on investment and outcomes.
Thank you for your past and future support.
[This statement was submitted by Robert Blancato, National
Coordinator, Elder Justice Coalition.]
______
Prepared Statement of the Eldercare Workforce Alliance
Mr. Chairman Alexander, Ranking Member Murray, and Members of the
Subcommittee: We are writing on behalf of the Eldercare Workforce
Alliance (EWA), which is comprised of 31 national organizations united
to address the immediate and future workforce crisis in caring for an
aging America. As the Subcommittee begins consideration of funding for
programs in fiscal year 2016, the Alliance\**\ urges you to provide
adequate funding for programs designed to increase the number of
healthcare professionals prepared to care for America's growing senior
population and to support family caregivers in the essential role they
play in this regard.
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\**\ The positions of the Eldercare Workforce Alliance reflect a
consensus of 75 percent or more of its members. This testimony reflects
the consensus of the Alliance and does not necessarily represent the
position of individual Alliance member organizations.
The Eldercare Workforce Alliance is a project of The Advocacy Fund.
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Today's healthcare workforce is inadequate to meet the special
needs of older Americans, many of whom have multiple chronic physical
and mental health conditions and cognitive impairments. It is estimated
that an additional 3.5 million trained healthcare workers will be
needed by 2030 just to maintain the current level of access and
quality. Without a national commitment to expand training and
educational opportunities, the workforce will be even more constrained
in its ability to care for the growth in the elderly population as the
baby boom generation ages. Reflecting this urgency, the Health
Resources and Services Administration (HRSA) has identified ``enhancing
geriatric/elder care training and expertise'' as one of its top five
priorities.
Of equal importance is supporting the legions of family caregivers
who annually provide billions of hours of uncompensated care that
allows older adults to remain in their homes and communities. The
estimated economic value of family caregivers' unpaid care was
approximately $450 billion in 2009.
The number of Americans over age 65 is expected to reach 70 million
by 2030, representing a 71 percent increase from today's 41 million
older adults. That is why Title VII and Title VIII geriatrics programs
and Administration for Community Living (ACL) programs that support
family caregivers, and the research efforts of the National Institute
on Aging are so critical to ensure that there is a skilled eldercare
workforce and knowledgeable, well-supported family caregivers available
to meet the complex and unique needs of older adults.
We hope you will support a total of $44.7 million for geriatrics
programs in Title VII and Title VIII of the Public Health Service Act,
$197.5 million for programs administered by ACL, $1.67 billion to
support the research efforts of the NIA, and $6.7 million for
additional workforce programs in HRSA. Specifically, we recommend the
following levels:
--$44.7 million for Title VII and Title VIII Geriatric Workforce
Enhancement Program;
--$197.5 million for Family Caregiver Support Programs; and
--$6.7 million for additional workforce programs from HRSA.
Geriatrics health profession training programs are integral to
ensuring that America's healthcare workforce is prepared to care for
the Nation's rapidly expanding population of older adults.
In light of current fiscal constraints, EWA specifically requests
$44.7 million in funding for the following programs administered
through the Health Resources and Services Administration (HRSA) under
Title VII and VIII of the Public Health Service Act. In the 2012-2013
Academic Year, these geriatrics and gerontology programs provided
training to more than 200,000 individuals.
Title VII and Title VIII Geriatric Workforce Enhancement Program:
Appropriations Request: $44.7 Million
The Geriatrics Workforce Enhancement program is the only Federal
program that increase the number of faculty with geriatrics expertise
in a variety of disciplines who provide training in clinical
geriatrics, including the training of interdisciplinary teams of health
professionals. In December 2014, the Health Resources and Services
Administration announced they will combine 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 Geriatrics Workforce Enhancement Program to provide
greater flexibility to grant awardees by allowing applicants to develop
programs that are responsive to specific interprofessional geriatrics
education and training needs of their communities. In May 2015, HRSA
plans to make 40 awards. Our modest funding request increase would
allow for 50 awards.
--Title VII Geriatrics Workforce Enhancement Program.--This program
provides health professions schools and training programs
support to provide interprofessional geriatrics education and
training responsive to specific needs of their communities. EWA
requests $34.4 million.
--Alzheimer's Disease Prevention, Education, and Outreach Program.--
These funds allow HRSA to expand efforts to provide
interprofessional continuing education to healthcare
practitioners on Alzheimer's disease and related dementias,
utilizing the newly developed Geriatric Workforce Enhancement
Programs. EWA requests $5.3 million.
--Comprehensive Geriatric Education Program.--This program provides
support to train and educate individuals in providing
geriatrics care for the elderly. Program goals are accomplished
through curriculum development and dissemination, continuing
education, and traineeships for individuals preparing for
advanced nursing education degrees in geriatric nursing, long-
term care, gero-psychiatric nursing or other nursing areas that
specialize in the care of the elderly population. EWA requests
$5 million.
Administration for Community Living Family Caregiver Support:
Appropriations Request: $197.5 million
These programs support caregivers, elders, and people with
disabilities by providing critical respite care and other support
services for family caregivers, training and recruitment of care
workers and volunteers, information and outreach, counseling, and other
supplemental services.
--Family Caregiver Support Services.--This program provides a range
of support services to approximately 700,000 family and
informal caregivers annually in States, including counseling,
respite care, training, and assistance with locating services
that help family caregivers in caring for their loved ones at
home for as long as possible. EWA requests $161 million.
--Native American Caregiver Support.--This program provides a range
of services to Native American caregivers, including
information and outreach, access assistance, individual
counseling, support groups and training, respite care and other
supplemental services. EWA requests $7 million.
--Alzheimer's Disease Support Services.--One critical focus of this
program is to support the family caregivers who provide
countless hours of unpaid care, thereby enabling their family
members with dementia to continue living in the community.
Funds go towards evidence-based interventions and expand the
dementia-capable home and community-based services, enabling
older adults to remain in the community for as long as
possible. EWA requests $9.5 million.
--Lifespan Respite Care.--This program funds grants to improve the
quality of and access to respite care for family caregivers of
children or adults of any age with special needs. EWA requests
$5 million.
--Family Support Initiative.--The new initiative will encourage use
of community assets and opportunities to help families reduce
stress, improve emotional well-being, develop support skills
and knowledge, and plan for the future. Special attention will
be given to efforts that assist families with balancing
workforce participation and caregiving responsibilities, and
those facing the dual demands of caring for older parents while
raising children and/or supporting a family member with
disabilities. EWA requests $15 million.
National Institute on Aging: Appropriations Request: $1.67 billion
The National Institute on Aging, one of the 27 Institutes and
Centers of the National Institute of Health, leads a broad scientific
effort to understand the aging process in order to promote the health
and well-being of older adults. Funding will aid in researching
training initiatives for the workforce that cares for older adults and
research on physician-family communications during end-of-life and
critical care.
Additional Workforce Programs under HRSA: Appropriations Request: $6.7
million
--National Health Care Workforce Commission.--The National Health
Care Workforce Commission, established by the ACA, plays a
central role in formulating a national strategy for bolstering
the healthcare workforce in order to meet the needs of the
burgeoning numbers of older Americans. On behalf of the members
of the Eldercare Workforce Alliance, thank you for your past
support for geriatric workforce programs. EWA requests $3
million.
--Geriatric Career Incentive Awards Program.--Congress authorized
this program through the ACA. Assuming it is extended, these
funds foster greater interest among a variety of health
professionals in entering the field of geriatrics, long-term
care, and chronic care management. EWA requests $3.3 million.
--Training Opportunities for Direct Care Workers.--In the ACA,
Congress approved a program administered by HHS that will offer
advanced training opportunities for direct care workers. While
this vital training program was left out of President Obama's
budget, EWA believes Congress must extend and fund it to create
new employment opportunities by offering new skills through
training. EWA requests $3.4 million.
On behalf of the members of the Eldercare Workforce Alliance, we
commend you on your past support for geriatrics workforce programs and
ask that you join us in supporting the eldercare workforce at this
critical time--for all older Americans deserve quality care, now and in
the future. Thank you for your consideration.
[This statement was submitted by Nancy Lundebjerg, MPA, and Michele
Saunders, DMD, MS, MPH, Alliance Co-Convener.]
______
Prepared Statement of the Emergency Nurses Association
The Emergency Nurses Association (ENA), with more than 40,000
members worldwide, is the only professional nursing association
dedicated to defining the future of emergency nursing and emergency
care through advocacy, expertise, innovation, and leadership. Founded
in 1970, ENA develops and disseminates education and practice standards
and guidelines, and affords consultation to both private and public
entities regarding emergency nurses and their practice. ENA has a great
interest in the work of the Senate Labor, Health and Human Services,
Education Subcommittee and especially its efforts to improve the
quality of emergency care for patients in the United States.
For fiscal year 2016, ENA respectfully requests $28 million for
Trauma and Emergency Care Programs (HHS; ASPR), $244 million for
Nursing Workforce Development programs (HHS; HRSA), $21.116 million for
the Emergency Medical Services for Children program (HHS; HRSA), $30.1
million to fund poison control centers (HHS; HRSA), $150 million for
the National Institute of Nursing Research (HHS; NIH), and $8.927
million for Rural Health--Access to Emergency Devices (HHS; HRSA).
trauma and emergency care programs
Trauma is the leading cause of death for persons younger than 44
and the fourth-leading cause of death for all ages. In states with an
established trauma system, patients are 20 percent more likely to
survive a traumatic injury. Further, victims of traumatic injury
treated at a Level I trauma center are 25 percent more likely to
survive than those treated at a general hospital.
Our trauma and emergency medical systems are designed to transport
seriously injured individuals to trauma centers quickly. However, due
to a lack of financial resources, 45 million Americans do not have
access to a major trauma center within the ``golden hour'' following an
injury when chances of survival are highest.
Trauma and emergency care programs, which are authorized under the
Public Health Service Act, provide much-needed money to the States to
develop and enhance of trauma systems. These programs are critical to
the efficient delivery of services through trauma centers, as well as
to the development of regionalized systems of trauma and emergency care
that ensure timely access for injured patients to appropriate
facilities. This modest investment can yield substantial returns in
terms of cost efficiencies and, most importantly, saved lives.
Therefore, ENA respectfully requests $28 million in fiscal year
2016 for trauma and emergency care programs.
nursing workforce development programs
The nursing profession faces significant challenges to ensure that
there will be an adequate number of qualified nurses to meet the
growing healthcare needs of Americans.
A growing elderly population will seek healthcare services in a
multitude of settings and the care they depend upon will require a
highly educated and skilled nursing workforce. In addition, demand for
nurses will grow because of the increased emphasis on preventative care
and the growing number of Americans with health insurance. A 2014
projection from the U.S. Bureau of Labor Statistics' 2014 Occupational
Outlook Handbook anticipates that the number of practicing RNs will
grow 26 percent by 2020 and the employment of Advanced Practice
Registered Nurses will grow even more rapidly.
At the same time, the aging of the Baby Boom generation will
deplete the nursing ranks as well. During the next 10 to 15 years,
approximately one-third of the current nurse workforce will reach
retirement age. The retirement of these experienced nurses has the
potential to create a serious deficit in the nursing pipeline. At the
same time, our colleges cannot keep up with the demand for new nurses.
According to a 2013-2014 survey by the American Association of Colleges
of Nursing, 78,089 qualified applications were turned away from nursing
schools in 2013 alone.
Title VIII Nursing Workforce Development programs address these
factors and help support the training of qualified nurses. They not
only enhance nursing education at all levels, from entry-level to
graduate study, but they also support nursing schools that educate
nurses for practice in rural and medically underserved communities.
Another important part of Title VIII is the Faculty Loan Program which
is critical to alleviating the large shortage in nursing faculty.
Overall, more than 65,000 nurses and nursing students were trained and
educated last year with the help of Title VIII nursing workforce
development programs.
Therefore, ENA respectfully requests $244 million in fiscal year
2016 for the Nursing Workforce Development programs authorized under
Title VIII of the Public Health Service Act.
emergency medical services for children
The Emergency Medical Services for Children (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 state-of-the-art emergency medical care for ill and
injured children or adolescents; that 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 Federal investment in the EMSC program produces a wide array of
benefits to children's health through EMSC State Partnership Grants,
EMSC Targeted Issue Grants, the Pediatric Emergency Care Applied
Research Network, and the National EMSC Data Analysis Resource Center.
Therefore, ENA respectfully requests $21.116 million in fiscal year
2016 for the EMSC program.
poison control centers
Poisoning is the second most common form of unintentional death in
the United States. In 2009, 31,768 deaths nationwide were attributed to
unintentional poisoning. Children are especially vulnerable to injury
by poisoning and each day 300 children are treated for poisoning in
emergency departments across the country and two die.
The Nation's 55 poison control centers handle 3.4 million calls
each year, including approximately 680,000 calls from nurses and
doctors who rely on poison centers for an immediate assessment and
expert advice on poisoning cases.
Not only are America's network of poison centers invaluable for
treating victims of poisonings, but the work of the centers also
results in substantial savings to our healthcare system. About 90
percent of people who call with poison emergencies are treated at home
and do not have to visit an emergency department. In more severe
poisoning cases, the expertise provided by poison control centers can
decrease the length of hospital stays. It has been estimated that every
dollar spent on America's poison control centers saves $13.39 in
healthcare costs and lost productivity. The positive impact to the
Federal budget is also significant. A 2012 study by the Lewin Group
found that poison control centers resulted in $313.5 million in savings
to Medicare and $390.2 million in savings to Medicaid.
Therefore, ENA respectfully requests $30.1 million in fiscal year
2016 for poison control centers.
the national institute of nursing research (ninr)
As one of the 27 Institutes and Centers at the NIH, NINR funds
research that lays the groundwork for evidence-based nursing practice.
NINR's mission is to promote and improve the health of individuals,
families, communities, and populations. The Institute supports and
conducts clinical and basic research on health and illness to build the
scientific foundation for clinical practice, prevent disease and
disability, manage and eliminate symptoms caused by illness, and
improve palliative and end-of-life care.
NINR nurse-scientists examine ways to improve care models to
deliver safe, high-quality, and cost-effective health services to the
Nation. Our country must look toward prevention as a way of reducing
healthcare expenditures and improving outcomes. The work of NINR is an
important part of this effort.
Moreover, NINR helps to provide needed faculty to support the
education of future generations of nurses. Training programs at NINR
develop future nurse-researchers, many of whom also serve as faculty in
our Nation's nursing schools.
Therefore, ENA respectfully requests $150 million in fiscal year
2016 for the NINR.
rural and community access to emergency devices program
Fewer than 10 percent of people who suffer a cardiac arrest outside
of a hospital setting survive. According to a 2011 study published in
the New England Journal of Medicine, immediate CPR and prompt
defibrillation using an automated external defibrillator (AED) can more
than double a patient's chance of survival.
The Health Resources and Services Administration (HRSA)'s Rural and
Community Access to Emergency Devices Program saves lives of patients
with cardiac arrest. Between August 1, 2008, and July 31, 2010, nearly
800 cardiac arrest victims were reportedly saved through this program.
Funding for this initiative is used to buy AEDs, locate them in public
places where cardiac arrests are more likely to happen, and instruct
lay rescuers and first responders in their use. Between March 1, 2010,
and Feb. 28, 2011, 3,928 AEDs were placed and 28,776 people were
trained in their use.
Therefore, ENA respectfully requests $8.927 million in fiscal year
2016 for the Rural and Community Access to Emergency Devices Program.
______
Prepared Statement of The Endocrine Society
The Endocrine Society thanks the Subcommittee for the opportunity
to submit the following testimony regarding fiscal year 2016 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 thousands of basic
and clinical scientists who receive Federal support from the NIH to
fund endocrine-related research including diabetes, cancer, fertility,
aging, obesity and bone disease. The Society's membership also includes
clinicians who depend on new scientific advances to better treat and
cure their patients' diseases.
Funding for Endocrine-Related Research: An Investment in the Nation's
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 spawned entire new industries.
Endocrinologists are a vital component of our Nation's biomedical
research enterprise and integral to the healthcare infrastructure in
the United States. Endocrine researchers 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.\1\ Consequently,
endocrinologists have a unique approach and understanding of how the
various systems of the human body communicate and interact to create a
comprehensive picture of health. The areas governed by the endocrine
system are broad and essential to overall well-being; 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 study glands such as the
adrenal glands, pancreas, thyroid, and specific glands of the brain
including the hypothalamus. Endocrinologists also study interrelated
systems, for example how the skin, liver, and kidneys work together to
produce and metabolize Vitamin D.
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\1\ Http://www.hormone.org/hormones-and-health/the-endocrine-system
Accessed March 19, 2015.
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Endocrinologists study and treat some of the most complex disease
areas, such as diabetes, obesity, bone disease, thyroid disorders, and
reproductive health. Many of these conditions represent growing areas
of disease burden for the United States population. NIH-funded
endocrine scientists continue to make remarkable contributions in areas
of critical national interest, for example:
--Endocrine scientists found a direct correlation between low vitamin
D levels and impaired glucose metabolism. This study helps
clarify the connection between vitamin D, obesity, and diabetes
and suggests that outdoor activity may also affect the risk of
developing diabetes.\2\
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\2\ Clemente-Postigo et al., ``Serum 25-Hydroxyvitamin D and
Adipose Tissue Vitamin D Receptor Gene Expression: Relationship With
Obesity and Type 2 Diabetes.'' J Clin Endocrinol Metab. 2015 Feb 23.
Electronic publication ahead of print.
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--Endocrine scientists discovered how the microbes living in our
intestines change as people develop diabetes. This finding
suggests that one's gut bacteria can help predict the risk of
developing diabetes and can inform healthy eating habits.\3\
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\3\ Https://www.endocrine.org/news-room/current-press-releases/gut-
microbial-mix-relates-to-stages-of-blood-sugar-control Accessed March
19, 2015.
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--Endocrine scientists study of obesity helped develop prevention and
treatments resulting in a 43 percent decrease in the obesity
rate for children age 2 to 5 years.\4, 5\
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\4\ Casagrande et al., ``The Prevalence of Meeting A1C, Blood
Pressure, and LDL Goals Among People With Diabetes, 1988-2010.''
Diabetes Care, Aug 36;8 (2013) 2271-9.
\5\ Sabrina Tavernise, ``Obesity Rate for Young Children Plummets
43 percent in a Decade.'' The New York Times. Feb 25, 2014.
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The Future of Endocrine Research
We are rapidly entering a new era of precision medicine. Insights
into 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. Translating these new
discoveries and technologies into personalized patient care offers the
possibility of more effective treatments, less toxicity, increased
disease prevention, improved quality of life, and lower healthcare
costs. Several endocrine-specific conditions are on the cusp of a
breakthrough in diagnostic testing. The ability to test for specific
genetic mutations that cause the syndrome of resistance to thyroid
hormone can dramatically alter potential treatment options.
Additionally, rare adrenal tumors called pheochromocytomas and
paragangliomas are notoriously challenging to diagnose. Genetic tests
can reduce delays in diagnosis, help determine whether a tumor is
likely to be malignant, and provide doctors with critical data to help
monitor family members who might also carry a problematic mutation.\6\
More NIH-funded basic and clinical research to help us understand how
genetics can predispose us to, or protect us from disease is critical
to develop and refine genetic testing strategies so that they are more
reliable and more widely available.
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\6\ Eric Seaborg, ``Family History.'' Endocrine News, Feb. 2015.
15-17.
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Sequestration Threatens Scientific Momentum
The Endocrine Society is particularly concerned about the impact of
cuts on biomedical research supported by the NIH. At a time when we
should be investing more in research to save more lives, research
funding is in serious jeopardy. Since 2004, the number of NIH research
grants to scientists in the United States has been declining.
Consequently, the likelihood of a scientist with a highly-regarded
grant application successfully being awarded a new research grant has
dropped from 31.5 percent in 2000 to 18.1 percent in 2014.\7\ This
means that experienced scientists are increasingly spending time
writing grant applications instead of applying their expertise to
productive research. Additionally, younger scientists struggle to find
jobs that make use of the unique skills developed during graduate
training.
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\7\ Http://report.nih.gov/success_rates/Success_ByIC.cfm Accessed
March 19, 2015.
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The lack of sustained government support compounded by austerity
measures such as sequestration has created an environment that is
leading to a ``brain drain'' as brilliant scientists pursue other
careers or leave the United States to develop impactful research
products elsewhere. In 2013, the number of NIH supported scientists
declined significantly, with nearly 1,000 NIH scientists dropping out
of the workforce.\8\ NIH scientists run labs that support high-quality
jobs and education while generating breakthrough innovations. In 2011,
the NIH directly or indirectly supported over 432,000 jobs across the
country.\9\ For example, as a result of sequestration, Missouri and
Washington lost an estimated $24 million and $46 million respectively
in fiscal year 2012.\10\
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\8\ Jeremy Berg ``The impact of the sequester: 1,000 fewer funded
investigators.'' ASBMB Today. March (2014). https://www.asbmb.org/
asbmbtoday/201403/PresidentsMessage/Accessed March 20, 2014.
\9\ Everett Ehrlich ``Engine Stalled: Sequestration's Impact on NIH
and the Biomedical Research Enterprise.'' United for Medical Research.
(2012).
\10\ ``NIH Sequestration Factsheet.'' http://www.faseb.org/portals/
2/PDFs/opa/Sequestration%20
factsheet.pdf Federation of American Societies for Experimental
Biology. Accessed March 19, 2015.
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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.\11\ '' 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.\12\
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\11\ Teresa K. Woodruff ``Budget Woes and Research.'' The New York
Times. September 10, 2013.
\12\ 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 2016 NIH Funding Request
The Endocrine Society recommends that the Subcommittee provide at
least $32 billion in funding for NIH in the fiscal year 2016 Labor-HHS-
Education Appropriations bill. This funding recommendation represents
the minimum investment necessary to avoid further loss of promising
research and at the same time allows the NIH's budget to keep pace with
biomedical inflation.
It is critical that we continue to invest in biomedical research to
improve the Nation's future financial situation. Rising healthcare
costs threaten to consume an increasing percentage of the United
States' GDP and also the individual budgets of workers and
businesses.\13\ The cost of diabetes, in particular, represents a
staggering $245 billion in 2012 alone.\14\
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\13\ Dan Mangan ``Job health insurance costs rising faster than
wages.'' CNBC. 9 Dec. 2014. http://www.cnbc.com/id/102249938#. Accessed
March 19, 2015.
\14\ Http://www.diabetes.org/advocacy/news-events/cost-of-
diabetes.html Accessed March 19, 2015.
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Federal investment in the NIH and in programs such as the National
Diabetes Prevention Program (NDPP) provides opportunities for
substantial returns to the Nation. The NDPP is based on the NIH-funded
Diabetes Prevention Program clinical research study which found that
even modest weight loss (5-10 percent) could prevent or delay the onset
of type 2 diabetes by 58 percent. As a result of these findings, the
Centers for Disease Control and Prevention (CDC) implemented the NDPP,
which has now been expanded to over 794 sites in 39 States; it has been
estimated that the program could save the country as much as $191
billion if fully implemented. Moreover, 75 percent of these savings
would benefit Federal healthcare programs that provide services for
seniors and the poor--individuals who share a disproportionate risk of
being diagnosed with diabetes.
We live during an age of tremendous scientific opportunity that can
only be realized through Federal funding of biomedical research.
Researchers are just beginning to harness the power of big data to
solve complicated problems. Innovative new experiments and clinical
research hold promise to solve some of the United States' greatest
medical challenges and discover new ways to improve our quality of
life. Government support is critical to these opportunities, and we
encourage the Appropriations Committee to actively support promising
and innovative research. We fully understand that the Appropriations
Committee faces challenging decisions in fiscal year 2016, however we
assert that additional cuts to the NIH and other non-defense
discretionary programs is not the way to solve the budgetary issues
facing the United States.
The Endocrine Society remains deeply concerned about the future of
biomedical research in the United States without sustained support from
the Federal Government. Flat funding in recent years, combined with the
impact of sequestration, threaten the Nation's scientific enterprise
and make adequate fiscal year 2016 appropriations for the NIH
increasingly important. The Society strongly supports increased Federal
funding for biomedical research in order to provide the additional
resources needed to enable American scientists to address scientific
opportunities and maintain the country's status as the preeminent
research engine. The Endocrine Society therefore asks that the NIH
receive at least $32 billion in fiscal year 2016.
[This statement was submitted by Lisa Fish, MD, President, The
Endocrine Society.]
______
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
insect-borne disease research at the U.S. Department of Health and
Human Services (HHS). ESA requests a robust fiscal year 2016
appropriation for the National Institutes of Health (NIH), including
the President's proposed increase in funding for insect-borne disease
research at the National Institute of Allergy and Infectious Diseases
(NIAID). The Society also supports the President's increased investment
in the core infectious diseases budget and the global health budget
within the Centers for Disease Control and Prevention (CDC) in order to
fund scientific activities related to vector-borne diseases.
Advances in the biological sciences, including the field of
entomology, help to address some of our most pressing societal needs
related to environmental and human health. Certain species of insects
carry, spread, and transmit an array of infectious diseases that
threaten populations across the globe, including those in the United
States as well as U.S. military personnel undertaking missions abroad.
Insect-borne diseases can present an especially challenging health
problem; few vaccines have been developed against them, and insects are
often difficult to control and can develop resistance to insecticides.
The risk of emerging infectious diseases grows as global travel becomes
easier and environmental factors continue to change. For example, West
Nile virus, which is transmitted by mosquitoes and was not present in
the U.S. before 1999, infected 5,674 Americans in 2012.\1\
Entomological research to understand the biological relationship
between insect vectors and the infectious diseases they carry--such as
dengue, malaria, West Nile virus, and Lyme disease--can significantly
contribute to our ability to monitor and predict outbreaks, prevent
disease spread and transmission, and more reliably diagnose and treat
infection. Given the important role that insect vectors play in
impacting 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.
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\1\ CDC's Division of Vector-Borne Diseases Factsheet, http://
www.cdc.gov/ncezid/dvbd/pdf/dvbd_factsheet.pdf.
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NIH, the Nation's premier medical research agency, advances human
health by funding research on basic human biology and disease and the
development of 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. One example of NIAID-funded
research on infectious diseases is a study examining the mechanism by
which certain species of mosquitoes known to transmit dengue and
malaria are attracted to humans. The scientists discovered that
specific types of nerve cells in the insects act as sensitive detectors
of human odors. With this knowledge, the researchers were able to
identify safe and natural chemical compounds with the potential to
neutralize or overwhelm the specific insect nerve cells, a discovery
that could have implications for the control of mosquitoes and their
associated diseases.\2\ In another recent study supported by NIAID,
researchers determined that live, disease-free ticks can be used as a
safe tool for testing for the presence of Lyme disease bacteria in
patients who have completed antibiotic therapy.\3\ Lastly, the
President's fiscal year 2016 budget request also spotlights
advancements made in chikungunya research. Specifically, research
supported by NIAID developed ``a genetically engineered, live-
attenuated chikungunya vaccine that protected non-human primates with a
single dose and may also interrupt viral transmission in mosquitoes.''
\4\ To ensure funding for future groundbreaking projects like these,
ESA supports increased funding for NIAID and encourages the committee
to support insect-borne disease research at NIH. In particular, ESA
supports the President's requested increase of $94.508 million above
the fiscal year 2015 enacted level for Biodefense and Emerging
Infectious Diseases.
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\2\ Tauxe, GM, et al. Targeting a dual detector of skin and CO2 to
modify mosquito host seeking. Cell (2013).
\3\ Marques, A, et al. Xenodiagnosis to detect Borrelia burgdorferi
infection: A first-in-human. Clinical Infectious Diseases (2014).
\4\ NIAID Budget Justification, fiscal year 2016, http://
www.niaid.nih.gov/about/Documents/fiscal year 2016CJ.pdf.
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CDC, serving as the Nation's health protection agency, conducts
science and provides health information to prevent and respond to
infectious diseases and other global health threats, whether naturally
arising or related to bioterrorism. Within the core infectious diseases
budget of CDC, the Division of Vector-Borne Diseases (DVBD) seeks to
protect our 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. For example, among the activities supported by DVBD are the
ArboNET surveillance system for mosquito-borne diseases, the TickNET
system for tick-borne diseases, and Puerto Rico's new SaludBoricua
self-reporting system that was recently expanded to include the public.
ArboNET is a nationwide network that monitors West Nile virus and other
diseases through activities such as the collection and testing of
mosquitoes, and TickNET is a partnership between 16 States to track
tick-borne-diseases like Lyme disease and test preventions. The new
SaludBoricua system will help to monitor vector-borne diseases like
dengue, influenza, and chikungunya in Puerto Rico. Furthermore, a
component of CDC's global health budget supports activities on
parasitic diseases and malaria; this includes the maintenance of a
global reference insectary that houses colonies of mosquitoes from
around the world to be used by the agency for studies on malaria
transmission.
Specifically within the President's CDC Budget Request for fiscal
year 2016, there was a proposed increase of $275.562 million for Core
Infectious Diseases over the fiscal year 2015 enacted level, which
includes the vector-borne diseases program. The CDC fiscal year 2016
budget justification also highlights the chikungunya virus, along with
several other vector-borne diseases like dengue, West Nile virus, and
Lyme disease, as vector-borne diseases program priorities. Regarding
chikungunya, the justification stated, ``By December 2014, a million
suspect and confirmed cases had been reported from 42 countries
throughout the Caribbean and South, Central, and North Americas. In
addition, almost 2,000 cases have been reported in Puerto Rico, the
U.S. Virgin Islands, and American Samoa. Eleven locally-acquired cases
of chikungunya have been detected in Florida and over 2,000 travel-
associated cases have been identified from 46 States.'' \5\ ESA is
pleased to see that chikungunya and other insect-borne diseases are an
upcoming fiscal year 2016 priority for CDC and encourages the inclusion
of entomological sciences in future research addressing these diseases.
Given the important contributions of CDC, ESA requests that the
committee provide the President's requested increased support for CDC
programs addressing vector-borne diseases and malaria.
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\5\ Center for Disease Control and Prevention Justification of
Estimates for Appropriation Committees, fiscal year 2016, http://
www.cdc.gov/fmo/topic/Budget%20Information/
appropriations_budget_form_pdf/fiscal year 2016_CDC_CJ_FINAL.pdf.
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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. Founded in
1889, ESA has nearly 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 Phil Mulder, Ph.D., President,
Entomological Society of America.]
______
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 $32 billion in fiscal year
2016 for the National Institutes of Health (NIH) within the Department
of Health and Human Services. We estimate that with a budget of $32
billion (an increase of $1.69 billion), NIH could support 522 new
research project grants at current funding levels with commensurate
growth for other vital agency programs.
FASEB, a federation of 27 scientific societies, represents more
than 120,000 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.
NIH has produced an outstanding legacy of discoveries that have
improved health, saved lives, and generated new knowledge. Many of
these advances arose from scientists investigating questions designed
to explain fundamental molecular, cellular, and biological mechanisms.
Research supported by NIH has also expanded our understanding of the
molecular roots of various cancers and led to important insights into
how microbial communities affect a range of chronic diseases including
obesity and diabetes. In addition, research supported by NIH led to the
development of innovative technologies and created entirely new global
industries that are a critical component of our Nation's economic
growth.
Investment in biomedical research funded by NIH has supported
discoveries that lowered death and disability from polio, heart
disease, and cancer, prolonging life and reducing suffering. New
scientific breakthroughs have given us the opportunity to dramatically
accelerate desperately needed progress on therapies for thousands of
diseases and conditions. A study published by the National Academy of
Sciences found that the key enabling discovery that led to the
development of 16 out of 21 drugs with the highest therapeutic impacts
was made as a result of federally supported research.
NIH-funded research is continuing to produce the insights that are
needed for tomorrow's improvements in health and clinical care. Recent
discoveries include:
--Engineering Immune Cells to Improve Cancer Treatment Options:
Researchers funded by NIH continue to make progress on
immunotherapy which uses the human immune system to fight
cancer. Promising results have been reported from several small
clinical trials testing adoptive cell transfer (ACT) on
patients with acute lymphoblastic leukemia. ACT is a technique
that engineers an individual's immune cells to identify and
kill tumors. Another form of ACT involves the addition of
special receptors, chimeric antigen receptors, to T cells in
order to change or improve their specificity.
--Creating Organs on a Chip: A new experimental technology supported
through investigator-initiated research uses a series of micro-
chambers, fluids, and human cells to simulate a person's
internal organs. One example, lung-on-a-chip, mimics the site
of oxygen exchange in the lungs, and is being developed to
study lung inflammation and infection. Other organs-on-a-chip
such as kidney, liver, and heart are also in development. An
artery-on-a-chip was created that effectively imitates the
molecular and flow conditions of early plaque development in
coronary arteries. This chip was used to gauge the disease risk
of individuals with high blood lipids and coronary artery
plaque, and proved to be an accurate predictor of the extent of
disease.
--Developing an Artificial Pancreas: NIH-funded researchers have
developed an artificial pancreas that is capable of monitoring
blood sugar and delivering appropriate amounts of hormones to
control fluctuations in levels. A sensor implanted under an
individual's skin measures his or her blood sugar and transmits
the information to a smartphone application that determines the
amount of insulin necessary. An implantable pump provides the
insulin. This device is a critical tool for individuals with
type-1 diabetes who must constantly monitor their blood sugar
levels to prevent hypoglycemia and other life-threatening
complications.
--Editing the Human Genome: A new transformative technology that is
revolutionizing biomedical research emerged from investigations
of a primitive immune-like system in bacteria. Like humans,
bacteria can be infected with harmful viruses. To fight off
these infections, bacteria evolved a system in which they
incorporate parts of the invading viral deoxyribonucleic acid
(DNA) into their own genomes. This DNA serves as both a memory
of prior infection (similar to human antibodies) and the basis
for directing specific and selective degradation of the viral
DNA. NIH-funded investigators reasoned that this system, known
as Clustered Regularly Interspaced Short Palindromic Repeats
(CRISPR), might be repurposed to edit genes in humans and
mammals. CRISPR has already been used to modify genes in
bacteria and eliminate Human Immunodeficiency Virus from
infected cells in culture. It has also been effective in
altering stem cells, which could potentially help treat a wide
range of diseases.
--Identifying Compounds That May Lead to Blood Tests for Alzheimer's:
As many as five million Americans over age 65 may have
Alzheimer's disease today, and that number is projected to
triple within the next 35 years. There is no definitive method
of diagnosing Alzheimer's in individuals before symptoms
appear. Using advanced technologies, a group of NIH-supported
researchers analyzed the blood of individuals who had either
impaired memory or Alzheimer's to search for biomarkers for
early stages of the disease. They found a series of ten
compounds in blood that might be able to determine which older
adults are at risk for developing cognitive impairment or
Alzheimer's. Further evaluation of blood samples from patients
produced a preliminary test that was 90 percent accurate in
differentiating healthy individuals with no cognitive
impairment from those who developed memory problems within 2 or
3 years.
Stable, Predictable Funding Is Critical to Sustain Discovery
Stable and predictable increases in Federal funding for research
supported by NIH are necessary to take advantage of unprecedented
opportunities to improve quality of life, address the rising costs of
caring for our aging population, and protect us from new and emerging
diseases. As NIH Director Francis S. Collins, MD, PhD, wrote in a
recent viewpoint for the Journal of the American Medical Association,
``The 21st century is the century of biology. The nation that invests
in biomedical research will reap untold rewards in its economy and the
health of its people.'' \1\
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\1\ Collins, F. (2015, January 13). Exceptional Opportunities in
Medical Science: A View From the National Institutes of Health. Journal
of the American Medical Association.
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Appropriations for NIH have failed to keep up with inflation since
2003, reducing the agency's capacity to support research by nearly 23
percent. The fact that the NIH budget has not kept pace with rising
costs also led to a 34 percent decrease in the number of R01-equivalent
awards--the primary mechanism for supporting investigator-initiated
research--between 2003 and 2013. In addition, the number of
investigators with NIH funding for six consecutive years declined from
10,030 in the fiscal year 2000-2005 period to 9,127 in fiscal year
2008-2013, a reduction of 11 percent.\2\
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\2\ Data Hound (Berg J). Minding the Gap. Data Hound Blog,
Sciencetopia. May 15, 2014.
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Basic research discoveries and their subsequent translation to
clinical applications can take multiple years of collaboration. Budgets
that are uncertain and vary in grant support from year to year make
such planning difficult. The loss of personnel and scientific expertise
may have long-term consequences as highly trained researchers seek
employment in other fields.
Congress took an important step in the right direction by providing
desperately needed increases for NIH in the fiscal year 2014 and fiscal
year 2015 omnibus appropriations bills. However, the additional funding
did not restore the lost purchasing power or fully replace money that
was cut in 2013 due to sequestration.
To prevent further erosion of the Nation's capacity for biomedical
research, and as a first installment of a multi-year program of
sustainable increases, FASEB recommends an appropriation of at least
$32.0 billion for NIH in fiscal year 2016.
Thank you for the opportunity to offer FASEB's support and funding
recommendation for NIH.
[The graphic follows:]
______
Prepared Statement of Paul Ferrario
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
After Deinstitutionalization: Medical Crises at Thirty Days and Dead by
6 Months
My loved one resides at Sonoma Developmental Center (SDC) in
Eldridge, CA. In an act of co-mingling its duties, the state Dept. of
Developmental Services sponsored a bill through the ``Trailer Bill''
mechanism that halted new admissions to California's Developmental
Centers and increased the rate of depopulating the Developmental
Centers. Recently I was told by a Developmental Center employee that
the medically fragile are being removed from SDC. The new law in
question provides for follow up at thirty days and at 6 months after
deinstitutionalization. The employee reported that the individuals are
suffering medically at the thirty day period, often a result of serious
medication errors, yet they are prohibited from returning to SDC; and
by the six month follow-up many have died.
Senator Feinstein Tells It Like It Is
At her weekly Washington D.C constituent breakfast, on June 14,
2001, two parents of individuals residing in California's Developmental
Centers spoke up in favor of maintaining the centers in the face of
Assembly bill 896 (Dione Aroner--D--Berkeley) that would close them all
and sell off the land.
The Senator voiced her concern and said it reminded her of when
Governors Reagan and Jerry Brown were closing state hospitals just as
they were beginning to improve.
She added that much of today's homeless population is made up of
former state hospital clients.
A member of the audience then spoke up in favor of AB 896, citing
the sensational $1.5 Billion consultant's estimate to restructure the
remaining Developmental Centers.
The Senator took the microphone and said: ``Ma'am I'd like to tell
you something.'' She then proceeded to recount the following:
--While Mayor of S.F. She learned that there were over 700 board and
care homes in the city.
--Unannounced, she visited 25 care homes.
--She found many that were unlicensed.
--She believes in ``management by walking around'' so she looked
everywhere, in the refrigerators, in the bathroom, in the
bedrooms.
--She found very little food but a lot of drugs in the refrigerators.
--She found terrible staffing problems.
``And I'll spare you the horror stories'' she added. The Senator
made it loud and clear that aggressive deinstitutionalization is a
failure.
Partial List of Investigative Journalism:
--L.A. officials receive video of men sexually assaulting disabled
women; (Jan. 6, 2011) www.cnn.com/2011/crime/01/06/
california.rape.disabled/index.html?hpt=T2
--Safety Measures Not Required in Thousands of Homes for Elderly,
Disabled; June 4, 2013 Investigative Unit NBCBayArea.com; a
midnight fire in Nov. 2011 Marina, CA care home killed 5 of the
6 mentally disabled and handicapped adults who lived there.
--California Regional Centers spend without public scrutiny;
Sacramento Bee; Nov. 21, 2010; Jack Chang.
--Lawmaker claims quotas for moving disabled exist; State officials
who oversee agencies deny charges. Alameda Newspaper Group; By
Michele R. Marcucci, Staff writer; Article Last Updated:10/26/
2006 05:17:03 AM PDT.
--The nonprofit agencies charged with overseeing the care of the
developmentally disabled have illegal quotas for moving
them from the state institutions--homes many have known for
decades-into community care, a state legislator has
charged.
--San Francisco Chronicle, February, 1997--August, 1998
--Fifty-six articles were released detailing the abuse, neglect and
death that plagued California's system of community-based
care for people with mental retardation following the
aggressive deinstitutionalization of over 2,000 people. The
articles include reference to University peer-reviewed
research that finds risk of mortality to be higher in
California community-based programs than in the state
institutions serving people with mental retardation.
--The California mortality studies can be accessed on the Internet
at http://www.LifeExpectancy.com, link: articles
(comparative mortality studies).
--[Internet Access: http://www.psych-health.com (``developmental
disabilities'' link, then years 1997 and 1998) or http://
www.sfgate.com/chronicle (search link--key words Lempinen
and disability).
--Fatal flaws in care net for disabled-SAFETY: Gaps in group-home
supervision--and abuse-endanger Californians with developmental
disabilities; Orange County Register; August 24, 1997; by Kim
Christensen.
--Homes' licenses hard to revoke-SOCIAL ISSUES: Even the most
troublesome facilities can be difficult to shut down; Orange
County Register; August 25, 1997; by Kim Christensen.
--Putting more care into community care-SOCIAL ISSUES: Programs for
the developmentally disabled are fixable experts say; Orange
County Register; August 26, 1997; by Kim Christensen.
--Growing Concern; Private Care for the Retarded--A Gamble; Los
Angeles Times; Jan. 8, 1989; by John Hurst, Times Staff Writer.
First of three articles. Next: Jenny's story.
--Retarded Woman's Story; Move Out of State Home Left Her Gaunt,
Incoherent Los Angeles Times; Jan. 9, 1989; by John Hurst,
Times Staff Writer. Second of three articles. Next: A group
home operator.
--$1.6 Million in Real Estate; Pair Prosper By Providing Homes, Care
For Retarded; Los Angeles Times; Jan. 10, 1989; by John Hurst,
Times Staff Writer. Last of three articles.
______
Prepared Statement of Sybil Finken
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Food & Friends
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Food & Friends is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In our service area, we provide over 1million
medically tailored, home delivered meals annually. Collectively, the
Food is Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Craig Shniderman, Executive
Director, Food & Friends.]
______
Prepared Statement of the Food Bank of Contra Costa and Solano
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
The Food Bank of Contra Costa and Solano is part of a nationwide
coalition, the Food is Medicine Coalition, of over 80 food and
nutrition services providers, affiliates and their supporters across
the country that provide food and nutrition services to people living
with HIV/AIDS (PLWHA) and other chronic illnesses. In our service area,
we provide enough food for over 155,000 nutritious meals annually.
Collectively, the Food is Medicine Coalition is committed to increasing
awareness of the essential role that food and nutrition services (FNS)
play in successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Joel McClurg, CalFresh Outreach
Manager, Food Bank of Contra Costa and Solano.]
______
Prepared Statement of Food Outreach, Inc.
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Food Outreach, Inc. is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. We have 1,800 HIV/AIDS clients who receive over half
a million medically tailored meals annually. Our service area
encompasses 189 zip codes in Missouri and Illinois. Collectively, the
Food is Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Greg Lukeman, Executive Director,
Food Outreach, Inc.]
______
Prepared Statement of Shelly Ford
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Jan Fortney
I am a parent of an adult daughter with intellectual and
developmental disabilities (I/DD). My daughter receives specialized
care and services in an Arkansas ICF/IID. I am writing to urge that the
Subcommittee include language in its Labor, HHS, and Education and
Related Agencies bill that expressly prohibits the use of
appropriations for any HHS program in support of activities which
attempt to downsize or close a Medicaid-licensed Intermediate Care
Facility for Individuals with Intellectual Disabilities (ICF/IID) or
any other Medicaid-licensed settings serving people with intellectual
disabilities, unless the purpose of the action is to remedy systemic
abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies.
Medicaid law and regulation requires that ICF/IID residents be
``Given the choice of either institutional or home and community-based
services.''
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Friends of the Health Resources and Services
Administration
Friends of HRSA is a non-partisan coalition of 170 national
organizations representing millions of public health and healthcare
professionals, academicians and consumers invested in HRSA's mission to
improve health and achieve health equity. For fiscal year 2016, we
recommend restoring HRSA's discretionary budget authority to the fiscal
year 2010 level of $7.48 billion. We are concerned that since fiscal
year 2010, HRSA's discretionary budget authority has been cut by 18
percent in nominal dollars and 24 percent when adjusted for inflation.
Funding for HRSA is too low to address the Nation's current health
needs, let alone keep pace with the growing health demands.
Research has shown that access to high-quality primary care
improves health and reduces costs. As health coverage increases
nationally and we experience a growing, aging and more diverse
population, alongside health professionals nearing retirement age, it
is ever more critical to make investments that improve access and
support a high-performing workforce capable of meeting the changes and
expected increases in healthcare demands. Not only are there current
and projected shortages in the health professional workforce
nationwide, many communities, both urban and rural, experience
persistent shortages and lack access to care due to a geographic
maldistribution of providers. Restoring funding to HRSA will allow the
agency to more effectively fill the preventive and primary care gaps
for people living outside of the medical and economic mainstream where
the need has been demonstrated and is reflected by suboptimal health
outcomes.
HRSA operates programs in every State and U.S. territory and is a
national leader in improving the health of Americans by supporting a
workforce of sufficient size and skill, and providing high-quality
health services. HRSA programs work synergistically and 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 create a complete mechanism to provide primary
care providers for health centers and other direct providers of
healthcare services for underserved areas and populations. AHECs serve
as an integral part of the mechanism that recruits providers into
primary healthcareers, diversifies the workforce and develops a passion
for service to the underserved in these future providers.
In addition to internal coordination, HRSA is also working to
increase coordination across the Federal Government to enhance the
collective impact of improved health outcomes. Through maternal and
child health programs, HRSA has contributed to the decrease in infant
mortality rate, a widely used indicator of the Nation's health. HRSA
programs have helped reduce AIDS-related deaths through providing drug
treatment regimens for people living with HIV and have the potential to
prevent the spread of HIV by 96 percent by ensuring that people living
with HIV have access to regular care and adhere to their antiretroviral
medications. The Title X Family Planning Program, the only Federal
grant program dedicated to providing people with comprehensive family
planning and related preventive health services, has greatly
contributed to decreasing unintended pregnancy--helping to prevent an
estimated 870,000 unintended pregnancies in 2013.
Now is the time to make a strong investment in a robust workforce
and to improve access to care to continue achieving the health
improvements HRSA has made and to pave the way for new achievements.
The Nation only stands to benefit from a healthier population which can
translate into a stronger and better functioning Nation, a thriving and
productive workforce, and reduced healthcare costs. Our recommendation
is based on the need to continue improving the health of Americans by
supporting critical HRSA programs including:
--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 a focus 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 distribution and
diversity of the workforce so health professionals are well-
equipped to care for the Nation's changing demographics. For
example, HRSA provides interdisciplinary education and training
to health professionals to improve care for special populations
such as older adults.
--Primary care programs support more than 9,000 health center sites
in every State and territory, improving access to preventive
and primary care for more than 21 million patients in
geographically isolated and economically distressed
communities. For nearly 50 years health centers have provided
quality services. Health centers coordinate a full spectrum of
health services including medical, dental, behavioral and
social services--often delivering the range of services in one
location. Close to half of all health centers serve rural
populations. In addition, health centers target populations
with special needs, including agricultural workers, homeless
individuals and families and those living in public housing. As
health insurance expands, health centers and other programs
administered by HRSA will continue to play a critical role in
the healthcare system serving as vital source of care for newly
insured patients, and remaining an important source of care for
those who cannot gain access to coverage.
--Maternal and child health programs, including the 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 for 42
million women and children. 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 a community-
based system of family centered services is available for
coordinated long-term follow up for babies with a positive
screen and for all children with special healthcare needs such
as children with 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 for more than half a million low-income people
impacted by HIV/AIDS, which accounts for about half of the
total population living with the disease in the U.S.
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.
--Family planning Title X services ensure access to a broad range of
reproductive, sexual and related preventive healthcare for over
4.5 million women, men and adolescents. Healthcare services
include patient education and counseling, cervical and breast
cancer screening, sexually transmitted disease prevention
education, testing and referral, as well as pregnancy diagnosis
and counseling. This program helps improve maternal and child
health outcomes and promotes healthy families. Title X service
sites provide the only continuing source of healthcare and
education for four out of ten women, and six out of ten women
consider it their main source of care.
--Rural health programs improve access to care for the nearly 50
million people living in rural areas that experience a
persistent shortage of healthcare services. The Office of Rural
Health Policy serves as the Nation's primary voice for programs
and research on rural health issues. Rural Health Outreach and
Network Development Grants, Rural Health Research Centers,
Rural and Community Access to Emergency Devices Program and
other 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 addition
to improving the health of rural residents, a recent analysis
completed in 2013 showed that for every dollar HRSA invested,
about $1.63 in additional revenue was generated in the
community--the cumulative impact added up to $19.4 million in
new local economic activity over a 3-year project period of an
original investment of $11.9 million.
--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. For every dollar spent on the
poison center system, $13.39 is saved in medical costs and lost
productivity, totaling more than $1.8 billion every year in
savings.
Strong and sustained investments in public health and prevention
programs are essential to meeting the health challenges facing our
Nation. Unfortunately, the current austerity measures in place pose a
threat to the agency's ability to adequately and effectively respond to
the evolving healthcare needs of patients and families, and as a result
may compromise public health and lead to increased costs to our
healthcare system. We urge you to consider HRSA's central role in
strengthening the Nation's health and advise you to adopt our fiscal
year 2016 request of $7.48 billion for HRSA's discretionary budget
authority. Thank you for the opportunity to submit our recommendation
to the subcommittee.
______
Prepared Statement of the Friends of the National Institute on Aging
Chairman Blunt, Ranking Member Murray, and members of the
Committee, this testimony is being submitted on behalf of the Friends
of the National Institute on Aging (FoNIA), www.friendsofnia.org, a
coalition of more than 50 academic, patient-centered and non-profit
organizations that supports the research and training missions of the
National Institute on Aging (NIA) by promoting and advocating for the
NIA and its initiatives as public policies in health and research take
shape. We appreciate the opportunity to provide testimony in support of
the NIA and to comment on the need for sustained, long-term growth in
aging research funding. Considering the resources the Federal
Government spends on the healthcare costs associated with age-related
diseases, we feel it makes sound economic sense to increase Federal
resources for aging research. Specifically, given the unique funding
challenges facing the NIA, and the range of promising scientific
opportunities in the field of aging research, the FoNIA recommends an
additional $500 million in the fiscal year 2016 National Institutes of
Health (NIH) budget to support biomedical, behavioral, and social
sciences aging research efforts at the NIH. We believe that this
funding is the minimum essential to sustain research needed to make
progress in attacking the chronic diseases that are driving significant
increases in our national healthcare costs. In addition, to ensure that
overall NIH research progress continues, the Coalition endorses the Ad
Hoc Group for Medical Research in supporting at least $32 billion for
NIH in fiscal year 2016.
NIA's mission is urgent. The number of Americans aged 65 and older
is growing at an unprecedented rate. By 2030, there will be 72 million
Americans in this age group; more than double the number from 2000. The
number of ``oldest old''--people age 85 or older--is expected to more
than triple between 2010 and 2050. Age is a primary risk factor for
many disabling diseases and conditions--most notably, Alzheimer's
disease (AD). The NIA is the primary Federal agency responsible for AD
research and receives nearly 70 percent of the NIH Alzheimer's disease
research funding. We know that as many as 5 million Americans aged 65
years and older may have AD with a predicted increase to 13.2 million
by 2050. NIA's comprehensive AD research program spans the spectrum of
discovery, from basic neuroscience through translational research and
clinical application. The National Alzheimer's Plan, 2012 and 2015
Research Summits, and allocation of additional funds from the NIH
Director in 2012 and 2013 have accelerated momentum in this field. In
2016, several exciting trials incorporating biomarkers of disease will
be active). NIA will also continue to support treatment trials to slow
the disease or alleviate its symptoms, such as the recent study in
which NIA-supported researchers found that the anti-depressant
citalopram may be a safer and more effective treatment for disruptive
agitation in AD than the treatments currently in use.
Efforts in AD research have been bolstered by the advent of new
technologies to generate and analyze enormous data sets. These new
technologies have been particularly effective in identifying risk and
protective genes for AD. Researchers can now access the first batch of
genome sequence data from the Alzheimer's Disease Sequencing Project
(ADSP), a collaboration between the NIA and the National Human Genome
Research Institute to facilitate identification of risk and protective
genes. NIH recently awarded grants to eight academic medical centers
around the Nation for using innovative new technologies and
computational methods to analyze the genome sequencing data generated
during the ADSP's first phase. The investigators will use ADSP data to
identify rare genetic variants that protect against or contribute to
Alzheimer's; explore differences in data from different racial/ethnic
groups; and examine how brain images and other biomarkers are
associated with genome sequences.
Because aging is the single biggest risk factor for the development
of many chronic diseases, a better understanding of the basic biology
of aging may open up new avenues for prevention and cures. The
establishment of the trans-NIH GeroScience Interest Group (GSIG) to
facilitate discovery on the common risks and mechanisms behind age-
related diseases and conditions has invigorated the field of basic
geroscience, as have groundbreaking recent findings such as the
discovery that the protein GDF-11 can reverse aging-related cardiac
hypertrophy (a dangerous thickening of the heart muscle) in mice--the
first time a circulating factor has been shown to reverse age-related
damage in a mammal. Recommendations from the 2013 GSIG Summit entitled
``Advances in Geroscience: Impact on Healthspan and Chronic Disease''
continue to energize researchers in this field.
NIA maintains an ongoing commitment to supporting basic behavioral
and social research in aging. The NIA-supported Health and Retirement
Study remains the world's premier multidisciplinary source of data on
the health and well-being of older Americans, linking objective and
subjective measures of health with information about retirement,
economic status, family structure, personality, as well as health
behaviors and service utilization. Funds from ARRA facilitated
expansion of the study, including genotyping DNA samples from
participants. In fiscal year 2016, research will be ongoing to take
advantage of the newly available genetic data to advance understanding
of how genetic, behavioral, and psychosocial factors affect health and
well-being. NIA remains an active participant in the trans-NIH Science
of Behavior Change initiative and the Basic Behavioral and Social
Science Opportunity Network. NIA has also established an initiative to
elucidate why the United States lags behind most other industrialized
countries in health at older ages and longevity.
The Institute continues to place a strong emphasis on translating
scientific discovery into health. For example, researchers with the
Lifestyle Interventions and Independence for Elders study found that a
carefully structured, moderate physical activity program can reduce the
risk of losing the ability to walk without assistance, perhaps the
single most important factor in whether vulnerable older people can
maintain their independence. This is the first specific intervention
proven in a randomized trial to prevent mobility disability. Other NIA-
supported investigators have recently proposed the first diagnostic
criteria for age-related sarcopenia, a loss of muscle mass that is
often associated with weakness and is a frequent contributor to frailty
in older age. NIA is also partnering with the Patient-Centered Outcomes
Research Institute on a major intervention study to prevent injurious
falls, a key cause of disability in older people.
NIA also supports several innovative programs dedicated to training
the next generation of aging researchers. The Advancing Diversity in
Aging Research through Undergraduate Education Program, which supports
creative and innovative undergraduate-level research education programs
to diversify the workforce in aging; the Grants for Early Medical/
Surgical Specialists Transition to Aging Research program to encourage
specialists to consider geriatrics research careers; a new initiative
combining medical school with a Ph.D. in behavioral or social science;
and the Paul Beeson Career Development Awards in Aging Research for
outstanding clinician-scientists, all exemplify NIA's commitment to
excellence and diversity in aging research.
Unfortunately, NIA's current budget does not reflect the tremendous
responsibility it has to meet the health research needs of a growing
U.S. aging population. While the current dollars appropriated to NIA
seem to have risen significantly since fiscal year 2003, when adjusted
for inflation, they have decreased more than 20 percent in the last 10
years. According to the NIH Almanac, out of each dollar appropriated to
NIH, only 3.6 cents goes toward supporting the work of the NIA-compared
to 16.5 cents to the National Cancer Institute, 14.6 cents to the
National Institute of Allergy and Infectious Diseases, 10 cents to the
National Heart, Lung and Blood Institute, and 6.3 cents to the National
Institute of Diabetes and Digestive and Kidney Diseases. With an
infusion of much needed support in fiscal year 2016, NIA can achieve
greater parity with its NIH counterparts and expand promising, recent
research activities, such as:
--Implement new prevention and treatment clinical trials, research
training initiatives, care interventions, and genetic research
studies developed to meet the goals of the National Plan to
Address Alzheimer's disease;
--bolster trans-NIH initiatives developed by the NIH GeroScience
Interest Group to understand basic cellular and molecular
underpinnings of aging as a principal risk factor for chronic
disease and to explore common mechanisms governing
relationships between aging and chronic disease;
--understand the impact of economic concerns on older adults by
examining work and retirement behavior, health and functional
ability, and policies that influence individual well-being; and
--support family caregivers by enhancing physician-family
communication during end-of-life and critical care
NIA is poised to accelerate the scientific discoveries that we as a
Nation are counting on. With millions of Americans facing the loss of
their functional abilities, their independence, and their lives to
chronic diseases of aging, there is a pressing need for robust and
sustained investment in the work of the NIA. In every community in
America, healthcare providers depend upon NIA-funded discoveries to
help their patients and caregivers lead healthier and more independent
lives. In these same communities, parents are hoping NIA-funded
discoveries will ensure that their children have a brighter future,
free from the diseases and conditions of aging that plague our Nation
today.
We do not yet have the knowledge needed to predict, preempt, and
prevent the broad spectrum of diseases and conditions associated with
aging. We do not yet have sufficient knowledge about disease processes
to fully understand how best to prevent, diagnose, and treat diseases
and conditions of aging, nor do we have the knowledge needed about the
complex relationships among biology, genetics, and behavioral and
social factors related to aging. Bold, visionary, and sustainable
investments in the NIA will make it possible to achieve substantial and
measurable gains in these areas sooner rather than later, and perhaps
too late.
We recognize the tremendous fiscal challenges facing our Nation and
that there are many worthy, pressing priorities to support. However, we
believe a commitment to the Nation's aging population by making bold,
wise investments in programs will benefit them and future generations.
Investing in NIA is one of the smartest investments Congress can make.
[This statement was submitted by Susan Peschin, MHS, Chair, Friends
of the National Institute on Aging and President and CEO, Alliance for
Aging Research.]
______
Prepared Statement of the Friends of the National Institute on Drug
Abuse
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to submit testimony to the Subcommittee in support of the
National Institute on Drug Abuse (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 the National
Institute on Drug Abuse (NIDA).
Recognizing that so many health research issues are inter-related,
we request that the subcommittee provide at least $32 billion for the
National Institutes of Health (NIH) and within that amount a
proportionate increase for the National Institute on Drug Abuse, in
your Fiscal 2016 Labor, Health and Human Services, Education and
Related Agencies Appropriations bill. We also respectfully request the
inclusion of the following NIDA specific report language.
Marijuana Research.--The committee recognizes that many States
either have or are considering legalizing or making marijuana available
for medical use without appropriate knowledge about its effects on
human development, structure and function of their brains. Therefore
the committee supports the Adolescent Behavioral Cognitive Development
(ABCD) Study being initiated by NIDA and other institutes of NIH. The
committee also recognizes that the study will take at least a decade to
complete since it will be a comprehensive study of the effects of
marijuana and other abused drugs throughout growth from 10 to 20 years
of age. Further the committee recognizes the cost of this comprehensive
study should not inhibit funding investigator initiated studies and a
special appropriation for this study is necessary.
Opiate Abuse and Addiction.--The Committee is concerned about the
escalating crisis of prescription drug abuse in the U.S. It is now
estimated that 120 people die each day in this country from opioid
overdose making it one of the highest causes of non-disease related
causes of deaths for adolescents and young adults. The June 2011 IOM
report on pain indicates that abuse and misuse of prescription opioid
drugs resulted in an annual estimated cost to the Nation of
$72,500,000,000. Further, the Committee is very concerned with the
concomitant rise in heroin abuse, addiction and deaths as the cost of
this illegal opioid is less than that for prescription opioids. The
Committee urges NIDA to 1) continue funding research on medications to
alleviate pain, including the development of pain medications with
reduced abuse liability; 2) as appropriate, work with private companies
to fund innovative research to enhance the development of such
medications; and 3) report on what we know regarding the transition
from prescription opiate analgesics to heroin abuse and addiction
within affected populations.
Medications Development.--The Committee recognizes that new
technologies are required for the development of next-generation
pharmaceuticals. In the context of NIDA funding, chief among these are
NIDA's current approaches to develop viable immunotherapeutic or
biologic (e.g., bioengineered enzymes) approaches for treating
addiction. The goal of this active area of research is the development
of safe and effective vaccines or antibodies that decrease the ability
of specific addictive drugs, like nicotine, cocaine, and heroin, or
drug combinations to affect the brain. The Committee is excited by this
approach--if successful, immunotherapies, alone or in combination with
other medications, behavioral treatments, or enzymatic approaches,
stand to revolutionize how we treat, and, maybe even someday, prevent
addiction. The Committee looks forward to hearing more about work in
this area.
Research to Assist Military Personnel, Veterans, and Their
Families.--The Committee recognizes the significant health challenges,
including substance abuse and addiction, faced by military personnel,
veterans, and their families. Many of these individuals need help
confronting war-related problems including traumatic brain injury,
PTSD, depression, anxiety, sleep disturbances, and substance abuse and
addiction. The Committee commends NIDA for its successful efforts to
coordinate and support research with the Department of Veterans
Affairs, Department of Defense, and other NIH Institutes focusing on
these populations, and strongly urges NIDA to continue work in this
area.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment..--The Committee is pleased with
NIDAMed, an initiative designed to reach out to physicians, physicians
in training, and other healthcare professionals to increase especially
those treating our youth to better recognize the signs that lead to
drug abuse and addiction. The Committee urges the Institute to continue
its focus on activities to provide physicians and other medical
professionals with the tools and skills needed to incorporate drug
abuse screening and treatment into their clinical practices.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a huge financial toll on our
resources. Beyond the unacceptably high rates of morbidity and
mortality, drug abuse is often implicated in family disintegration,
loss of employment, failure in school, domestic violence, child abuse,
and other crimes. Placing dollar figures on the problem; smoking,
alcohol and illegal drug use results in an exorbitant economic cost on
our Nation, estimated at over $600 billion annually. We know that many
of these problems can be prevented entirely, and that the longer we can
delay initiation of any use, the more successfully we mitigate future
morbidity, mortality and economic burdens.
Over the past three decades, NIDA-supported research has
revolutionized our understanding of addiction as a chronic, often-
relapsing brain disease --this new knowledge has helped to correctly
emphasize the fact that drug addiction as a serious public health issue
that demands strategic solutions. By supporting research that reveals
how drugs affect the brain and behavior and how multiple factors
influence drug abuse and its consequences, scholars supported by NIDA
continue to advance effective strategies to prevent people from ever
using drugs and to treat them when they cannot stop.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends--significant declines in a wide array of youth drug
use--over the past several years that we think are due, at least in
part, to NIDA's public education and awareness efforts. However, areas
of significant concern include the recent increase in lethalities due
to heroine, as well as the continued abuse of prescription opioids and
the recent increase in designer drugs availability 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. 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 2016 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction, which
according to the World Health Organization account for nearly 20
percent of disabilities among 15-44 year olds, deserves to be
prioritized accordingly. We look forward to working with you to make
this a reality. Thank you for your support for the National Institute
on Drug Abuse.
______
Prepared Statement of the FSH Society, Inc.
Honorable Chairman Blunt and Ranking Member Murray, thank you for
the opportunity to submit this testimony. Facioscapulohumeral muscular
dystrophy (FSHD), is one of the most common adult muscular dystrophies
with a prevalence of 1:8,000.\1\ FSHD is a rare disease or an orphan
disease (according to U.S. criteria it affects fewer than 200,000
people). For approximately 870,000 men, women, and children worldwide
the major consequence of inheriting this genetic form of muscular
dystrophy is a lifelong progressive loss of all skeletal muscles. FSHD
predominantly initially affects muscles in the face, trunk and upper
extremities. FSHD is a crippling and life shortening disease. It can
affect multiple generations and entire families.
---------------------------------------------------------------------------
\1\ Deenen JC, et al, Population-based incidence and prevalence of
facioscapulohumeral dystrophy. Neurology. 2014 Sep 16;83(12):1056-9.
Epub 2014 Aug 13.
---------------------------------------------------------------------------
With FSHD there is a loss of muscle strength that ranges between
one and 4 percent a year during a lifetime. In terms of functional
impairment, 20 percent of FSHD-affected individuals over age fifty will
require the use of a wheelchair. FSHD also has very specific non-
muscular manifestations; hearing-loss, respiratory, cardiac
(arrhythmias) and vision. 95 percent of individuals with FSHD have the
FSHD1 (OMIM: 158900) genetic variation--caused by the contraction of
DNA macrosatellite repeat units, termed D4Z4 repeats, on chromosome 4,
leading to the release of transcriptional repression of a retrogene
(DUX4) believed to be associated with the cause of disease. Of the 5
percent of FSHD individuals remaining, 80 percent of those are the
FSHD2 (OMIM: 158901) genetic variation--caused by mutation in the
structural maintenance of chromosomes hinge domain 1 (SMCHD1) gene on
chromosome 18p that helps to maintain the repressed-State structure of
the D4Z4 repeats on the long arm of chromosome 4; which when mutated
cause unwanted toxic and inappropriate DUX4 gene/protein expression.
The National Institutes of Health (NIH) is the principal source of
funding of research on FSHD currently at the $7 million level. For
nearly two decades, this Committee has supported the incremental growth
in funding for FSHD research. I am pleased to report that this modest
investment has produced remarkable scientific returns.
Congress has Made a Major Difference.--I have testified many times
before Congress, approximately fifty. When I first testified, we did
not know the genetic mechanism of this disease. Now we do. Now we can
target it. When I first testified, we assumed that FSHD was a rare. Now
we understand it to be the most prevalent forms of muscle disease,
based on new ways of evaluating the disease clinically within families.
Congress is responsible for this success, through its sustaining
support of the NIH and the enactment of the Muscular Dystrophy CARE
Act. We are aware that MD Care Act does not set the amount of spending
on FSHD or the other dystrophies at the NIH and we recognize that
funding levels are determined in the appropriations process and the
numbers of grant applications received and funded by the NIH on FSHD.
Even though it is a technically separate legislative process, the
reauthorization of the MD Care Act does raise the visibility of all the
muscular dystrophies which can be of help in the appropriations
process--and we thank you for your support of the MD Care Act
amendments 2014. Given these requisites there are additional efforts
and pathways that Congress can request and the NIH can enact to
increase the amount of research funding on FSHD in the NIH portfolio
that neither increases the NIH budget required nor takes money from
another area of research and achieves more efficiency out of a non-
growing research budget.
Quantum leaps in our understanding of FSHD.--The past four and a
half years have seen remarkable contributions made by a very small but
dedicated tribe of researchers funded by NIH and non-profits.
--On August 19, 2010, American and Dutch researchers published a
paper which dramatically expanded our understanding of the
mechanism of FSHD.\2\ A front page story in the New York Times
quoted the NIH Director Dr. Francis Collins saying, ``If we
were thinking of a collection of the genome's greatest hits,
this would go on the list.'' \3\ ``FSHD patients carry specific
single-nucleotide polymorphisms in the chromosomal region
distal to the last D4Z4 repeat. This FSHD-predisposing
configuration creates a canonical polyadenylation signal for
transcripts derived from DUX4, a double homeobox gene of
unknown function that straddles the last repeat unit and the
adjacent sequence. Transfection studies revealed that DUX4
transcripts are efficiently polyadenylated and are more stable
when expressed from permissive chromosomes. These findings
suggest that FSHD arises through a toxic gain of function
attributable to the stabilized distal DUX4 transcript.'' \2\
---------------------------------------------------------------------------
\2\ Lemmers, RJ, et al, A Unifying Genetic Model for
Facioscapulohumeral Muscular Dystrophy Science 24 September 2010: Vol.
329 no. 5999 pp. 1650-1653.
\3\ Kolata, G., Reanimated `Junk' DNA Is Found to Cause Disease.
New York Times, Science. Published online: August 19, 2010 http://
www.nytimes.com/2010/08/20/science/20gene.html.
---------------------------------------------------------------------------
--Two months later, another paper was published that made a second
critical advance in determining the cause of FSHD. The research
shows that FSHD is caused by the inefficient suppression of a
gene that may be normally expressed only in early
development.\4\ ``The contraction of the D4Z4 repeat in FSHD
results in a less efficient suppression of the full-length DUX4
mRNA [DUX4-fl] in skeletal muscle cells. Therefore, FSHD
represents the first human disease to be associated with the
incomplete developmental silencing of a retrogene array
normally expressed early in development.'' \4\
---------------------------------------------------------------------------
\4\ Snider, L., Geng, L.N., Lemmers, R.J., Kyba, M., Ware, C.B.,
Nelson, A.M., Tawil, R., Filippova, G.N., van der Maarel, S.M.,
Tapscott, S.J., and Miller, D.G. (2010). Facioscapulohumeral dystrophy:
incomplete suppression of a retrotransposed gene. PLoS Genet. 6,
e1001181.
---------------------------------------------------------------------------
--On January 17, 2012, an international team of researchers based out
of Seattle discovered a stabilized form of a normally
suppressed gene called DUX4 affects many different germline
genes, retroelements, and immune mediators; all potential
targets.\5\ ``We identify genes associated with germline and
early stem cell development as targets of the DUX4
transcription factor, a leading candidate gene for FSHD. The
genes regulated by DUX4 are reliably detected in FSHD muscle
but not in controls, providing direct support for the model
that misexpression of DUX4 is a causal factor for FSHD.'' \5\
---------------------------------------------------------------------------
\5\ Geng et al., DUX4 Activates Germline Genes, Retroelements, and
Immune Mediators: Implications for Facioscapulohumeral Dystrophy,
Developmental Cell (2012), doi:10.1016/j.devcel.2011.11.013.
---------------------------------------------------------------------------
--Six months later, another high profile paper produced by a Senator
Paul A. Wellstone Cooperative Research Center of the NIH
(mandated by MD CARE Act), used sufficiently ``powered'' large
collections of genetically matched FSHD cell lines generated by
the NIH center that are both unique in scope and shared with
all researchers worldwide, to improve on the Seattle group's
finding by postulating that DUX4-fl expression is necessary but
not sufficient by itself for FSHD muscle pathology.\6\ ``We
confirmed that stable DUX4-fl mRNA and protein were expressed
in myogenic cells and muscle tissues derived from FSHD affected
subjects, including several genetically diagnosed adult FSHD
subjects yet to show clinical manifestations of the disease in
the assayed muscles. In addition, we report DUX4-fl mRNA and
protein expression in muscle biopsies and myogenic cells from
genetically unaffected relatives of the FSHD subjects, although
at a significantly lower frequency. These results establish
that DUX4-fl expression per se is not sufficient for FSHD
muscle pathology and indicate that quantitative modifiers of
DUX4-fl expression and/or function and family genetic
background are determinants of FSHD muscle disease
progression.'' \6\
---------------------------------------------------------------------------
\6\ Jones TI, et al, Facioscapulohumeral muscular dystrophy family
studies of DUX4 expression: evidence for disease modifiers and a
quantitative model of pathogenesis. Hum Mol Genet. 2012 Oct
15;21(20):4419-30. Epub 2012 Jul 13.
---------------------------------------------------------------------------
--On July 13, 2012, a team of researchers from the United States,
Netherlands and France identified mutations in a gene causing
80 percent of another form of FSHD called FSHD1B or FSHD2. This
paper furthers our understanding of the molecular
pathophysiology of FSHD. This work too was supported in part by
a program project grant from NIH.\7\ ``FSHD2 occurs in
individuals who inherited both the SMCHD1 mutation and a
normal-sized D4Z4 array on a chromosome 4 haplotype permissive
for DUX4 expression. Reducing SMCHD1 levels in skeletal muscle
results in D4Z4 contraction-independent DUX4 expression. Our
study identifies SMCHD1 as an epigenetic modifier of the D4Z4
metastable epiallele and as a causal genetic determinant of
FSHD2 and possibly other human diseases subject to epigenetic
regulation.'' \7\
---------------------------------------------------------------------------
\7\ Lemmers, RJ, et al, Digenic inheritance of an SMCHD1 mutation
and an FSHD-permissive D4Z4 allele causes facioscapulohumeral muscular
dystrophy type 2. Nat Genet. 2012 Dec;44(12):1370-4. Epub 2012 Nov 11.
---------------------------------------------------------------------------
--On September 25, 2014, researchers from United States, France,
Spain, Netherlands and United Kingdom narrow the focus
mechanistically opening the possibility of all types of FSHD
having an epigenetic basis.\8\ ``In FSHD1, for individuals with
D4Z4 repeat arrays of 1-6 units, the clinical severity mainly
depends on the size of the D4Z4 repeat. However, in individuals
with arrays of 7-10 units, the clinical severity also depends
on other factors that regulate D4Z4 methylation because
affected individuals, but not non-penetrant mutation carriers,
have a greater reduction of D4Z4 CpG methylation than can be
expected based on the size of the pathogenic D4Z4 repeat array.
In FSHD2, this epigenetic susceptibility depends on the nature
of the SMCHD1 mutation in combination with D4Z4 repeat array
size with dominant negative mutations being more deleterious
than haploinsufficiency mutations. Our study thus identifies an
epigenetic basis for the striking variability in onset and
disease progression that is considered a clinical hallmark of
FSHD.'' \8\
---------------------------------------------------------------------------
\8\ Lemmers RJ, et al. Inter-individual differences in CpG
methylation at D4Z4 correlate with clinical variability in FSHD1 and
FSHD2. Hum Mol Genet. 2015 Feb 1;24(3):659-69. doi: 10.1093/hmg/ddu486.
Epub 2014 Sep 25.
---------------------------------------------------------------------------
--On March 29, 2015, different researchers involved with the NIH
Senator Paul A. Wellstone Cooperative Research Center using its
large collection of different FSHD patient samples and
different techniques arrive at the same answer that there is an
underlying principle of epigenetics defining asymptomatic or
non-manifesting and playing a role in disease severity.\9\
``The epigenetic status of the distal 4qA D4Z4 repeat
correlates with FSHD disease; FSHD-affected subjects have
hypomethylation, healthy unaffected subjects have
hypermethylation, and non-manifesting subjects have
characteristically intermediate methylation. Thus, analysis of
DNA methylation at the distal D4Z4 repeat could be used as a
diagnostic indicator of developing clinical FSHD. In addition,
the stability of epigenetic repression upstream of DUX4
expression is a key regulator of disease and a viable
therapeutic target.'' \9\
---------------------------------------------------------------------------
\9\ Jones, TI, et al. Individual epigenetic status of the
pathogenic D4Z4 macrosatellite correlates with disease in
facioscapulohumeral muscular dystrophy. Clinical Epigenetics 2015, 72-
6, 29 March 2015.
---------------------------------------------------------------------------
Many of these researchers have started their efforts in FSHD with
seed funding from the FSH Society and have received continued support
from the FSH Society, the NIH, and the Muscular Dystrophy Association
and other partners. In simpler terms, the above research shows that our
own genes within us are being inappropriately expressed in tissue at a
time and place where they do not normally reside or function by a
confluence of events in a variety of ways giving rise to the decay and
destruction of skeletal muscle; and we begin to focus on the very
narrow stretch of DNA down to the nucleotide level in an area adjacent
to the toxic gene inappropriately turned on so-named DUX4-fl. You might
think of it as the opposite of cancer rather than runaway genes causing
unbridled cell division; runaway genes are causing unbridled cell
death. What is fascinating is, though one has all the requisites to
have FSHD (e.g. the presence of a chromosome 4qA containing a DUX4
polyadenylation signal; and either a truncation of D4Z4; or a SMCHD1
mutation with D4Z4 repeat array with array sizes at the lower end of
the normal repeat size spectrum) there are modifiers that allow a
person to have a severe course of disease whilst other genetically
tested positive relatives are spared of disease symptoms e.g.
methylation. We can see clearly now that the stability of epigenetic
repression by the region just upstream of DUX4 gene on the very last
distal D4Z4 repeat, regardless of which route DUX-fl was stabilized and
presented FSHD1, FSHD2, FSHD3, etc., is a key regulator that can be
modified perhaps via its methylation level/status. We can see clearly
that FSHD2 modifies FSHD1 in individuals who carry both mutations
presenting even more severe disease. Even more remarkably, we know of
and we have compounds and techniques to modify and target modifiers and
expression of DUX-fl, and still the FSHD research and clinical
enterprise is starved for Federal funding from NIH! In 2014, the FSH
Society funded projects to silence the DUX4 gene using leading-edge
genome-editing technologies (CRSPR/Cas9, TALEN), helped support efforts
in development efforts and models to test anti-sense oligonucleotide
(ASO) and morpholino and we aided the development of animal models and
a novel method that we believe will revolutionize FSHD diagnostics. We
are thrilled that our grantees and colleagues have data that proves
that DUX4-fl and cascading events can be turned off.
We Must Keep Moving Forward.--In October the FSH Society held its
annual FSHD International Research Consortium meeting in San Diego,
California. The meeting was funded in part by the NIH NICHD University
of Massachusetts Medical School Wellstone center for FSHD. Nearly 80
researchers from around the world gathered to present latest data and
discuss research strategies. There was considerable progress achieved
when comparing to the 2013 agenda. The discussion agenda focused on
being prepared for intervention development and clinical readiness. To
keep the discussion focused, we followed the path: Genetics >
Mechanisms and targets > Models > Patients. For each area, an expert
moderator was nominated. The priorities stated for 2015, at the October
18, 2014, FSH Society FSHD IRC meetings can be found at: http://
www.fshsociety.org/international-research-consortium/.
Additionally, on March 17th, 2015, the FSH Society presented to the
Federal advisory committee mandated by the MD CARE Act called the
Muscular Dystrophy Coordinating Committee (MDCC) its concern about the
small number of NIH grants and that much greater funding is required to
address the most pressing challenges for FSHD research, including
research on the following topics:
--Mechanisms of DUX4 toxicity
--More molecular, imaging and functional markers of disease
progression
--Modifiers of disease: genetic, chemical, and lifestyle
--Preclinical models validated to represent aspects of FSHD
pathophysiology
--Better animal models based on low expression of DUX4 as seen in
patients
--Mechanisms of pathology in patients' muscles
--Normal functions of DUX4 in tissues other than muscle
--Methods of administering anti-DUX4 agents to muscle
--Muscle regeneration capacity in FSHD muscles
--Large animal models (monkey, marmoset)
--Biomarkers that can indicate impact of therapeutic agents.
We need to be prepared for this new era in the science of FSHD.
Many leading experts are now turning to work on FSHD because it
represents the potential for great discoveries, insights into stem
cells, transcriptional processes, new ways of thinking about disease of
epigenetic etiology, and for treating diseases with epigenetic origin.
NIH Funding for Muscular Dystrophy.--Mr. Chairman, these major
advances in scientific understanding and epidemiological surveillance
are not free. They come at a cost. Since Congress passed the MD CARE
Act in 2001, research funding at NIH for muscular dystrophy has
increased 4-fold (from $21 million). While FSHD research funding has
increased 14-fold (from $0.5M) during this period, the level of funding
is still anemic and, for FSHD, has been astonishingly flat for the past
7 years.
FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH MUSCULAR DYSTROPHY FUNDING
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year
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2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015e 2016e
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All MD ($ millions)..................................... 38.7 39.5 39.9 47.2 56 83 86 75 75 76 78 79 81
FSHD ($ millions)....................................... 2.2 2.0 1.7 3 3 5 6 6 5 5 7 7 7
FSHD ( percent total MD)................................ 6 5 4 5 5 6 7 8 7 7 9 9 9
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (e = estimate)
Despite the great success of the past four and a half years in the
science of FSHD brought about by Congress we are concerned that under
the current funding environment that new research projects will not be
funded or existing programs will not be renewed. We are already seeing
this play out with some of the larger program projects in FSHD. We have
conveyed to the NIH leadership at the Office of the Director, NIAMS,
NINDS, NICHD, NHLBI and the Executive Secretary of the MDCC our grave
concern that FSHD research is way too under-represented in the NIH
portfolio and needs a proactive effort on the part of NIH. At the March
17, 2015, MDCC meeting we re-iterated to Alan E. Guttmacher, MD.,
Director, NICHD and Chair of the MDCC and all MDCC members that we are
fully supportive of his efforts and the Action Plan for Muscular
Dystrophy; while at the same time we requested that NIH redress the
imbalance of funding in the muscular dystrophy portfolio by fostering
opportunities for multidisciplinary research on FSHD commensurate with
its prevalence and disease burden. The future action plan and NIH
activity should address this issue head-on. We are stunned if not
baffled that while on one hand, 5 years ago, NIH Director Dr. Francis
Collins said ``If we were thinking of a collection of the genome's
greatest hits, this [FSHD] would go on the list''3 that--on the other
hand, the National Human Genome Research Institute (NHGRI) has only one
R01 on FSHD!
In the last year alone, incredible opportunities for public,
private and non-profit entities engaged in FSHD research and clinical
research have emerged. Oddly these discoveries clearly belonging to the
leading edge of human genetics and our understanding the epigenome and
treating epigenetic diseases are sitting idle at NIH. NIH needs to see
through the thick fog of flat funding and austerity and maximize
research funding by capitalizing on the low hanging fruit that FSHD
presents as a gateway to treating human epigenetic disease. There are
26 active projects NIH-wide as of March 12, 2015, according to the NIH
Research Portfolio Online Reporting Tools (RePORT) http://
report.nih.gov within these 26 are: one F32 training grant, 6 R21, 12
R01, 1 P01, 2 U01, and 2 U54. NHGRI has only one R01. NHLBI has none.
NICHD has no R21, no R01. In last 25 years, NIH has funded 76 grants in
FSHD including only three training grants, 18 R21, and 25 R01.
Remarkably, no grants ever on FSHD from key institutes studying heart,
lung, blood, hearing, and vision.
While all muscular dystrophy research funding at NIH increased from
$39.9 million in 2006 to $81 million; FSHD increased from $1.7 million
to $7 million. The economy of scale is so vastly different in
particular for FSHD, being equally devastating and burdensome as the
disease receiving the most funding in this category called muscular
dystrophy, and though it functions in the exact same U.S. Federal
research infrastructure. We request for fiscal year 2016, a tripling of
the NIH FSHD research portfolio to $21 million or a level of
approximately 25 percent of the total estimated muscular dystrophy
funding at NIH. This will allow an expansion of basic research awards,
expansion of post-doctoral and clinical training fellowships, dedicated
centers to design and conduct clinical trials on FSHD and more U.S.
DHHS NIH Senator Paul D. Wellstone Muscular Dystrophy Cooperative
Research Centers.
We are aware of the great pressures on the Federal budget, but NIH
can easily help increase its portfolio on FSHD given the breakneck
speed of discovery in FSHD. These are easy ways for NIH to convey to
researchers that it has a revised plan and an interest in funding
research in FSHD. There are no quotas on peer-reviewed research above
pay line at the NIH, and NIH can help by issuing written announcements
that efforts invested in writing FSHD grant applications will be met
with interest. This is the time to fully and expeditiously exploit the
advances in the best scientific opportunities for which the American
taxpayer has paid. Thank you for this opportunity to testify before
your committee.
[This statement was submitted by Daniel Paul Perez, President &
CEO, FSH Society, Inc.]
______
Prepared Statement of the 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 2016 appropriations funding for the National Institutes of
Health (NIH) and the Centers for Disease Control and Prevention (CDC).
We appreciate your leadership in promoting the importance of
international development, in particular global health. I am submitting
this testimony on behalf of the Global Health Technologies Coalition
(GHTC), a group of 25 nonprofit organizations working together to
promote policies that advance research and development (R&D) of new
global health innovations--including new vaccines, drugs, diagnostics,
microbicides, and other tools--to combat global health diseases. The
GHTC's members strongly believe that to meet the global health needs of
tomorrow, it is critical to invest in research today so that the most
effective health solutions are available when we need them. This need
has never been more evident than now, as the world is facing a
persistent Ebola outbreak, and many other health areas are seeing
resurgences of disease. My testimony reflects the needs expressed by
our member organizations, which work with a wide variety of partners to
develop new and more effective lifesaving technologies, for the world's
most pressing health issues. We strongly urge the Committee to continue
its established support for global health R&D by (1) sustaining and
supporting U.S. investment in global health research and product
development and fully funding the NIH at a level of at least $32
billion, and providing robust funding for the CDC, with $469 million
for the CDC Center for Global Health, and $669 million for the CDC
Center for Emerging Zoonotic and Infectious Diseases (NCEZID); (2)
requiring leaders at the NIH, CDC, the Food and Drug Administration
(FDA), and the Secretariat of the U.S. Department of Health and Human
Services (HHS) to join leaders of other U.S. agencies to develop a
cross-U.S. Government global health R&D strategy to ensure that U.S.
investments in global health research are efficient, coordinated, and
streamlined; and (3) ensuring that contributions from the National
Center for Advancing Translational Science (NCATS) are included in the
joint CDC, FDA, and NIH global health strategy describing coordination
and prioritization of global health research activities within the
three agencies.
Critical Need For New Global Health Tools
Our Nation's investments have made historic strides in promoting
better health around the world: nearly ten million people living with
HIV/AIDS now have access to lifesaving medicines; new, cost-effective
tools help us diagnose diseases quicker and more efficiently than ever
before; and innovative new vaccines are making significant dents in
childhood mortality. While we must increase access to these and other
proven, existing health tools to tackle global health problems, it is
just as critical that we continue to invest in developing the next
generation of tools to stamp out disease and address current and
emerging threats. For instance, newer, more robust, and easier to use
antiretroviral drugs--particularly for infants and young children--are
needed to treat and prevent HIV, and even an AIDS vaccine that is 50
percent effective has the potential to prevent one million HIV
infections every year. Drug-resistant tuberculosis (TB) is on the rise
globally, including in the United States, however the only vaccine on
the market is insufficient at 90 years old, offers little protection
when given to adolescents and adults, and most therapies available
today are more than 50 years old, extremely toxic, and too expensive.
New tools are also urgently needed to address fatal neglected tropical
diseases such as sleeping sickness, for which diagnostic tools are
inadequate and the few drugs available are toxic or difficult to use.
There are many very promising technology candidates in the R&D pipeline
to address these and other health issues; however, these tools will
never be available if R&D is not supported and sustained.
Research and U.S. Global Health Efforts
The United States is at the forefront of innovation in global
health technologies. The U.S. Government is involved in 200 of the 365
global health products currently in the pipeline, with the NIH and CDC
involved in much of this research.
NIH
The NIH has helped make the United States a leader in research
globally. Dr. Francis Collins, director of the NIH, has named global
health as one of the agency's five top priorities, and recent NIH
global health research activities have led to the development of new
tools to combat neglected diseases, including vaccines for dengue fever
and trachoma, new drugs to treat malaria and TB, and multiple projects
to develop diagnostics, vaccines and treatments for Ebola, including
the development of ZMapp and the development and testing of Ebola
vaccine candidates. While we are pleased with recent increases to the
NIH budget, spending growth still lags behind the expenses necessary
for biomedical research which include maintaining and equipping
laboratories. Dr. Collins recently noted that the Bureau of Economic
Analysis has calculated that because of rising costs of biomedical
research expenses, the NIH has had a 23 percent drop in purchasing
power since 2003. As the world's largest supporter of global health
R&D, maintaining steady support for the NIH is critical in working to
ensure that new global health tools are available to address current
and future health challenges.
Under the purview of the NIH, NCATS was established to accelerate
new treatments and cures for diseases. NCATS has the potential to play
a much needed role in global health research, and in the past has
contributed to the development of early stage compounds to treat
diseases including Chagas disease, schistosomiasis, giardia and HIV.
Currently, through the Center's Therapeutics for Rare and Neglected
Diseases (TRND) program, NCATS is working on treatments for some
infectious diseases including malaria and Lassa fever. NCATS
contributions towards accelerating translational research for global
health is critical, and improving coordination and prioritization
throughout HHS should improve efficiencies, leverage limited resources,
and ensure critical gaps are realized and filled. Additionally, we
remain concerned about the legislative mandate currently limiting NCATS
in their clinical trial work. NCATS is the only NIH center to be
limited by a legislative mandate in its clinical trial work. There is
no risk of NCATS duplicating the global health activities of private
industry as this sector does not typically target neglected diseases
due to small commercial markets. We hope you will consider removing
this statutory barrier. We must not lose traction on the investments
made in global health at NIH.
CDC
The CDC also makes significant contributions to global health
research. The CDC's ability to respond to disease outbreaks, such as
the 2014 Ebola Virus Disease outbreak in West Africa, is essential to
protecting citizens both at home and abroad. The work of its scientists
has led to major advancements against devastating diseases, including
the eradication of smallpox and early identification of the disease
that became known as AIDS.
Within the CDC, the efforts of the Center for Global Health and
NCEZID are critical to protecting lives and must be continued. Ongoing
investments in the development of new vaccines, drugs, microbicides and
other tools have the potential to greatly accelerate efforts to combat
HIV/AIDS, TB, malaria, diarrheal disease, pneumonia, and other less
well known diseases such as leishmaniasis, dengue fever,
schistosomiasis, hookworm, sleeping sickness, and Chagas disease. This
request also takes into account the increase necessary for the CDC's
role in the National Strategy for Combating Antibiotic Resistant
Bacteria, which could have tremendous lifesaving potential in fighting
infectious diseases like drug-resistant tuberculosis, as well as
increases for the CDC's Global Health Security Agenda, which will
prioritize global capacity building for responding to future outbreaks
and global health risks.
Leveraging the Private Sector for Innovation
The NIH, CDC, and other U.S. agencies involved in global health R&D
regularly collaborate with the private sector in developing,
manufacturing, and introducing important technologies such as those
described above through public-private partnerships, including product
development partnerships. These partnerships leverage public-sector
expertise in developing new tools, partnering with academia, large
pharmaceutical companies, the biotechnology industry, and governments
in developing countries to drive greater development of products for
neglected diseases in which private industries have not historically
invested. This unique model has generated dozens of new global health
products and has enormous potential for continued success if robustly
supported. NIH Director Dr. Francis Collins has stated that such
partnerships are key to the development of therapies and health tools
based on NIH-funded research.
Innovation as a Smart Economic Choice
Global health R&D brings lifesaving tools to those who need them
most. However, the benefits these efforts bring are much broader than
preventing and treating disease. Global health R&D is also a smart
economic investment in the United States, where it drives job creation,
spurs business activity, and benefits academic institutions. Biomedical
research, including global health, is a $100 billion enterprise in the
United States. Sixty-four cents out of every U.S. dollar invested in
global health R&D goes directly to U.S.-based researchers. In a time of
global financial uncertainty, it is important that the United States
support industries, such as global health R&D, which build the economy
at home and abroad.
An investment made today can help save significant money in the
future. The meningitis A vaccine, MenAfriVac, is projected to save
nearly $570 million in healthcare costs over the next decade. In
addition, new therapies to treat drug-resistant TB have the potential
to reduce the price of TB treatment by 90 percent and cut health system
costs significantly. The United States has made smart investments in
research in the past that have resulted in lifesaving breakthroughs for
global health diseases, as well as important advances in diseases
endemic to the United States. We must now build on those investments to
turn those discoveries into new vaccines, drugs, tests, and other
tools.
Recommendations
In this time of fiscal constraint, support for global health
research that improves the lives of people around the world--while at
the same time creating jobs and spurring economic growth at home--
should unquestionably be among the Nation's highest priorities. In
keeping with this value, the GHTC respectfully requests that the
Committee do the following:
--Sustain and support U.S. investments in global health research and
product development and fully fund the NIH at a level of at
least $32 billion, and provide robust funding for the CDC, with
$469 million for the CDC Center for Global Health and $669
million for the NCEZID.
--Require leaders at the NIH, CDC, the FDA, and the Office of Global
Affairs to collaborate with the U.S. Agency for International
Development, the State Department, the Department of Defense,
and Office of the U.S. Global AIDS Coordinator to develop a
cross-U.S. Government global health R&D strategy to ensure that
U.S. investments in global health research are efficient,
coordinated, and streamlined.
--Ensure that contributions from NCATS are included in the joint CDC,
FDA, and NIH global health strategy describing coordination and
prioritization of global health research activities within the
three agencies and remove the current statutory and legislative
barriers limiting NCATS' clinical trial mandate.
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 Erin Will Morton, Coalition
Director, Global Health Technologies Coalition.]
______
Prepared Statement of God's Love We Deliver
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
God's Love We Deliver is the leader of a nationwide coalition, the
Food is Medicine Coalition, of over 80 food and nutrition services
providers, affiliates and their supporters across the country that
provide food and nutrition services to people living with HIV/AIDS
(PLWHA) and other chronic illnesses. In our service area, we provide
1.3 million medically tailored, home delivered meals annually.
Collectively, the Food is Medicine Coalition is committed to increasing
awareness of the essential role that food and nutrition services (FNS)
play in successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, U.S.A.
J Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, U.S.A.
J Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Karen Pearl, President & CEO,
God's Love We Deliver.]
______
Prepared Statement of Doug Gracey
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mr./Mrs. Robert and Evelyn Greene
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
To Committee Members: Our daughter, 53 years of age, has been
``institutionalized'' (on the campus of a large congregate facility
caring for the developmentally disabled) for 50 years. She is
profoundly disabled and receives excellent loving care. She needs to be
tended to 24/7. We know from past experience that many in her condition
do not survive the transfer to community homes and certainly do not
receive the same level of care. For too many it means a very
uncomfortable death. We plead with you to act according to the Olmstead
Decision.
Thank you for listening to the very concerned and loving parents.
Robert and Evelyn Greene
______
Prepared Statement of the Guillain-Barre Syndrome and Chronic
Inflammatory Demyelinating Polyneuropathy Foundation International
Chairman Blunt 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), variants and
related conditions as you work to craft the fiscal year 16 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 percent 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), 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.
jim's story
I had GBS in 1973. This is important because the subject matter,
IVIG treatments, were not available in 1973 and I believe that because
it was not available, my experience with GBS was many times worse than
it needed to be. I was totally paralyzed and only my head was able to
move side to side. When the disease hit me, I was a college student in
St. John's University in NYC in my fourth year and a newlywed of 3
months and I was also working thirty hours a week as a night manager in
a busy Tire and Auto repair business. My wife and I were just beginning
our lives together when GBS struck us down like a lightning bolt. My
wife was also working full time and now the care of her totally
paralyzed husband was in the hands of a 19 year woman who was asked to
do things and make decisions that no 19 year old women should have to
make. I never finished college due to the amount of medical bills the
accumulated and this affected my working life for decades. Keeping in
mind the year, 1973, ICU care was very different then it is now. She
was only allowed to visit me in the ICU for five minutes every hour.
The rest of the time, she spent in a tiny waiting room with other ICU
patient's families. She was at the hospital before work, at lunchtime
and in the evening totaling about forty minutes a day. Imagine the
stress on this young lady. I spent five weeks in the ICU, totally
paralyzed with a tracheotomy and with no movement and no ability to
communicate in anyway at all. Any need that I had had to be guessed by
the four person nursing staff who also had a dozen other very ill
patients who were in the open room that held all of these patients.
Nights were a nightmare. They were long mostly because I was not
sleeping well, day or night. Minutes seemed like hours, and hours
seemed like weeks. I was aware all of the time and it was like I was in
a glass shell, unable to get out. The hospital staff tried, but no one
could understand what it was like to be in that bed. One memorable
evening, the tube that was connected to the MA-1 ventilator popped out
of my neck and I was not getting any oxygen. Nobody saw that the
bellows of the ventilator had dropped down. Someone had to see the
situation or I was in big trouble. I had passed out from lack of air.
Someone finally saw that it was not breathing for me. The ``crash
cart'' finally got to me and I began to get some air. People started
yelling ``why didn't the alarm sound'' There was an alarm that sounds
if the machine failed for any reason. Two D cells powered the alarm and
they were dead. Two D cells almost did me in.
I firmly believe that if IVIG was available for me in 1973, I would
have never been so paralyzed and in need of a ventilator. My life was
in the hands of a hospital staff and machinery and humans who make
mistakes. Time and time again, IVIG has arrested the progress of GBS
patients and prevented a patient from needing a vent and putting their
life in danger. GBS in and of itself generally does not cause a patient
to die, it is poor care or a late diagnosis or preexisting conditions.
IVIG is a lifesaver and huge factor in reducing the level of paralysis
and the amount of time that a patient is in hospital and rehab. I wish
that IVIG was available when I had GBS. Its availability would have a
huge difference in my case.
sequestration
We have heard from the medical research community that
sequestration and deficit reduction activities have created serious
issues for Federal funding opportunities and the career development
pipeline. In order to ensure that research into GBS, CIDP, and related
disorders can continue to move forward, and, more importantly, to
ensure that our country is adequately preparing the next generation of
young investigators, we urge you to avert, mitigate, or otherwise
eliminate the specter of sequestration. While the Foundation has
anecdotal accounts of the harms of sequestration, the Federated
American Societies for Experimental Biology has reported:
--In constant dollars (adjusted for inflation), the NIH budget in
fiscal year 2013 was $6 billion (22.4 percent) less than it was
in fiscal year 2003.
--The number of competing research project grants (RPGs) awarded by
NIH has also fallen sharply since fiscal year 2003. In fiscal
year 2013, NIH made 8,283 RPG awards, which is 2,110 (20.3
percent) less than in fiscal year 2003.
--Awards for R01-equivalent grants, the primary mechanism for
supporting investigator-initiated research, suffered even
greater losses. The number awarded fell by 2,528 (34 percent)
between fiscal year 2003 and fiscal year 2013.
The pay line for some NIH funding mechanisms has fallen from 18
percent to 10 percent while the average age for a researcher to receive
their first NIH-funded grant has climbed to 42. These are strong
disincentives to choosing a career as a medical researcher. Our
scaling-back is occurring at a time when many foreign countries are
investing heavily in their biotechnology sectors. China alone plans to
dedicate $300 million to medical research over the next 5 years; this
amount is double the current NIH budget over the same period of time.
Scientific breakthroughs will continue, but America may not benefit
from the return-on-investment of a robust biotechnology sector. For the
purposes of economic and national security, as well as public health,
the Foundation asks that you work with your colleagues to eliminate
sequestration and recommit to supporting this Nation's biomedical
research enterprise.
centers for disease control and prevention
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.
CDC and 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.
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. In fact, NINDS,
NIAID, and the Office of Rare Diseases Research (ORDR) housed within
NCATS have expressed interest in hosting a State-of-the-Science
Conference on autoimmune peripheral neuropathies. This conference would
allow intramural and extramural researchers to develop a roadmap that
would lead research into these conditions into the next decade. 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.
Thank you for your time and your consideration of the community's
requests.
______
Prepared Statement of David Hart
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Jerra Letrich Hardy
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
I act as co-conservator for my 52 year old autistic sister who was
recently evicted from her home of over 40 years, Lanterman
Developmental Center in California, upon its recent closure.
The general community is simply not equipped or prepared to provide
humane treatment for the profoundly developmentally disabled. She has
lost services, a sense of community and independence as a result of her
displacement. We have recently been refused funding to support her
adequately in her new home and are forced to represent her in court at
great personal expense. Our Nation is failing our developmentally
disabled. One Size Does Not Fit All!
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request.
I support VOR's testimony.
______
Prepared Statement of the Harm Reduction Coalition
On behalf of the Harm Reduction Coalition, we thank you for the
opportunity to submit testimony on fiscal year 2016 Appropriations
priorities for the Department of Health and Human Services. The
Appropriations process provides a critical opportunity to review the
Nation's strategies and commitments to addressing the Nation's public
health challenges. One of our greatest challenges is the current opioid
crisis, claiming a growing number of lives through drug overdose along
with health consequences ranging from addiction to hepatitis C to
neonatal abstinence syndrome. Harm Reduction Coalition believes that
many of these consequences are preventable or treatable through
targeted investments in sound, evidence-based interventions. Therefore,
we support HHS Secretary Burwell's Opioid Initiative, which calls for
$99 million in additional funds to increase efforts on opioid
prescribing, naloxone access, and medication-assisted treatment. Harm
Reduction Coalition firmly believes in a comprehensive approach to the
opioid crisis that strengthens all three of the Secretary's priority
areas in tandem. We specifically ask for the Subcommittee's
consideration and support of three key public health strategies: (1)
Preventing overdose deaths through expanded access to naloxone; (2)
Strengthening prevention of hepatitis C; and (3) removing the Federal
funding ban on syringe exchange.
(1)--Preventing Overdose Deaths Through Expanded Access to Naloxone
Opioid overdose fatality is a leading cause of accidental death in
the United States and has been declared an epidemic by the Centers for
Disease Control and Prevention (CDC). According to CDC data, overdose
deaths involving opioids--prescription painkillers or heroin--claimed
more than 24,000 lives in 2013. Overdose prevention education and
training programs that distribute the FDA-approved, opioid rescue
medication naloxone have been proven to lower incidence of overdose as
well as significantly reduce mortality. When administered in a timely
fashion, naloxone can reverse an opioid overdose; however, tragically
it is not yet neither utilized broadly nor widely available in many
parts of the country. If naloxone was more accessible and overdose
education and awareness efforts were expanded, countless lives could be
saved.
Harm Reduction Coalition commends Congress for including, in the
final fiscal year 2015 Labor-Health and Human Services-Education (LHHS)
Appropriations measure, funding and language that help advance overdose
prevention efforts, particularly those that focus on overdose education
and naloxone distribution. Specifically, for the first time, Congress
importantly recognized the need to provide Federal funding to the
Office of Rural Health within the Health Resources and Services
Administration (HRSA) to support the purchase of ``emergency devices
used to rapidly reverse the effects of opioid overdoses, as well as
training licensed healthcare professionals and emergency responders on
their use.''[i]
In response to the opioid overdose epidemic, numerous communities
and States have taken action to make naloxone available within their
jurisdictions but resources to support overdose education and naloxone
distribution are still scarce. Moreover, many efforts are focused
solely on traditional first responders while non-healthcare
professionals are more likely to be the first on the scene of an
overdose. As such, Harm Reduction Coalition urges Federal policymakers
to support and expand initiatives to prevent and reduce opioid overdose
fatalities, particularly those with a focus on family members and other
laypersons likely to encounter someone who has overdosed.
The fiscal year 2016 HHS Budget Request includes a range of
proposals to address the opioid epidemic under the auspices of the
Secretary's Opioid Initiative, totaling over $99 million in new funding
requested. Harm Reduction Coalition supports this request and
encourages Congress to invest additional resources in tackling the
multiple dimensions of the opioid epidemic. At a minimum, Harm
Reduction Coalition asks that Congress support the SAMHSA request for
$12 million in fiscal year 2016 for Grants to Prevent Prescription
Drug/Opioid Overdose Related Deaths.
Specifically, Harm Reduction Coalition calls upon Congress and the
Administration to build upon the progress being made at the community
and State levels and the initial investment made in the final fiscal
year 2015 funding measure, by:
--Providing $12 million to SAMHSA to provide grants to States to
support community-based opioid overdose fatality prevention
efforts and purchase of naloxone, with a focus on those
initiatives that provide overdose recognition and intervention
training and education alongside access to rescue medications
to family members and other laypersons, and facilitate linkage
to treatment and recovery services.
(2)-- Strengthening Prevention of Hepatitis C
According to CDC, new hepatitis C infections increased by 75
percent between 2010 and 2012. This increase is largely attributable to
the increase in injection of prescription opioids and heroin. At least
30 States have reported substantial increases in new hepatitis C
infections. The typical profile of a person newly infected with
hepatitis C is a young person in their 20s living in a rural or
suburban area. Considering the significant costs of hepatitis C
treatment, there is a compelling financial case to increase investments
in prevent in order to avert both liver disease and mortality as well
as substantial economic burdens of medical and treatment costs.
In their fiscal year 2016 Budget Justification, CDC requests an
addition $31 million to the Division of Viral Hepatitis to expand
testing and linkage to care, strengthen health department capacity,
reduce perinatal hepatitis B transmission, and prevent new hepatitis C
infections. Harm Reduction Coalition supports the requested increase,
and asks that at a minimum CDC should receive an additional $8 million
for hepatitis C prevention to halt the burgeoning hepatitis C epidemic
associated with prescription opioid and heroin use.
--Providing $8 million to CDC's Division of Viral Hepatitis for the
prevention of new hepatitis C infections through grants to
State and local health departments and community-based
organizations to strengthen hepatitis C prevention efforts
among people who inject drugs, with priority to high-burden
jurisdictions and organizations with demonstrated experience
and expertise in engaging this population.
(3)--Removing the Federal Funding Ban on Syringe Exchange
The Federal funding ban on syringe exchange, maintained through
LHHS Appropriations language, hampers the ability of States and
communities to deploy all available and appropriate tools for early
intervention in local opioid epidemics and prevent HIV and hepatitis C
outbreaks. Those States on the frontlines of the opioid epidemic must
have the flexibility to direct their Federal funds to effective and
evidence-based programs capable of reaching people who inject drugs and
linking them to healthcare, treatment and recovery services. Syringe
exchange programs accomplish these goals without increasing nor
encouraging drug use.
--Remove the ban on use of Federal funds for syringe exchange
programs
We thank you for your consideration of these requests. For further
information on any of these areas, please contact Harm Reduction
Coalition's Policy Director, Daniel Raymond.
______
Prepared Statement of the Health Professions and Nursing Education
Coalition
The members of the Health Professions and Nursing Education
Coalition (HPNEC) are pleased to submit this statement for the record
recommending $524 million in fiscal year 2016 for the health
professions education and training programs authorized under Titles VII
and VIII of the Public Health Service Act and administered through the
Health Resources and Services Administration (HRSA).
HPNEC is an alliance of national organizations dedicated to
ensuring the healthcare workforce is trained to meet the needs of the
country's growing, aging, and diverse population. Titles VII and VIII
are the only federally-funded programs that seek to improve the supply,
distribution, and diversity of the health professions workforce, with a
focus on primary care and interdisciplinary training. By providing
educational and training opportunities to aspiring and practicing
health professionals, the programs also play a critical role in helping
the workforce adapt to meet the Nation's changing healthcare needs.
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, Titles VII and VIII
are well positioned to fill gaps in the workforce and increase access
to care for all populations. Further, the programs emphasize
interprofessional education and training, bringing together knowledge
and skills across disciplines to provide effective, efficient and
coordinated care.
While HPNEC recognizes the Subcommittee faces difficult decisions
in a constrained budget environment, a continued commitment to programs
supporting healthcare workforce development should remain a high
priority. The Nation faces a shortage of health professionals, which
will be exacerbated by increasing demand for healthcare services.
Failure to fully fund the Title VII and Title VIII programs would
jeopardize activities to fill these vacancies and to prepare the next
generation of health professionals.
The Title VII and Title VIII programs can be considered in seven
general categories:
--The Primary Care Medicine and Oral Health Training programs support
education and training of primary care professionals to improve
access and quality of healthcare in underserved areas.
According to HRSA, approximately 20 percent of Americans live
in rural or urban areas designated as health professional
shortage areas (HPSA). The primary care medical and oral health
training grants are also used to develop curricula and test
training methods to transform healthcare practice and delivery,
including innovations in the primary care team's management of
chronic disease, patient-centered models of care, and
transitioning across healthcare settings. The General
Pediatrics, General Internal Medicine, and Family Medicine
programs provide critical funding for primary care physician
training in community-based settings and support a range of
initiatives, including medical student and residency training,
faculty development, and the development of academic
administrative units. The Rural Physician Training Grants focus
on increasing the number of medical school graduates practicing
in rural communities. The primary care cluster also provides
grants for Physician Assistant programs to encourage and
prepare students for primary care practice in rural and urban
Health Professional Shortage Areas. The General Dentistry,
Pediatric Dentistry, Dental Public Health, and Dental Hygiene
programs provide grants to dental schools, dental hygiene
schools, and hospitals to create or expand primary care dental
training.
--Because much of the Nation's healthcare is delivered in remote
areas, the Interdisciplinary, Community-Based Linkages cluster
supports community-based training of health professionals.
These programs are designed to encourage health professionals
to return to such settings after completing their training and
to encourage collaboration between two or more disciplines. The
Clinical Training in Interprofessional Practice program
supports interdisciplinary training opportunities that prepare
providers to deliver coordinated, efficient, and high-quality
care. The Area Health Education Centers (AHECs) offer clinical
training opportunities to health professions and nursing
students in rural and other underserved communities by
extending the resources of academic health centers to these
areas. AHECs improve health by leading the Nation in the
recruitment, training, and retention of a diverse health
workforce for underserved communities. By leveraging State and
local matching funds to form networks of health-related
institutions, AHECs also provide education services to
students, faculty, and practitioners. The Geriatric Health
Professions programs, including the Geriatric Academic Career
Award program and Geriatric Education Centers, are all designed
to bolster the number and quality of healthcare providers
caring for the rapidly growing number of older adults and to
expand geriatrics training to all healthcare professionals. For
example, the programs provide interprofessional education and
training on Alzheimer's disease and related dementias. The
Graduate Psychology Education (GPE) program is the Nation's
only Federal program dedicated solely to the education and
training of doctoral-level psychologists. GPE supports the
interprofessional training of doctoral-level psychology
students in providing supervised mental and behavioral health
services to underserved populations (i.e. older adults,
children, chronically ill, and victims of abuse and trauma,
including returning military personnel and their families) in
rural and urban communities. The Mental and Behavioral Health
Education and Training Grant Program supports the training of
psychologists, social workers, and child and adolescent
professionals. These programs together work to close the gap in
access to quality mental and behavioral healthcare services by
increasing the number of qualified mental health clinicians.
--The Minority and Disadvantaged Health Professionals Training
cluster helps improve healthcare access in underserved areas
and the representation of minority and disadvantaged
individuals in the health professions. Diversifying the
healthcare workforce is a central focus of the programs, making
them a key player in mitigating racial, ethnic, and socio-
economic health disparities. Further, the programs emphasize
cultural competency for all health professionals, an important
role as the Nation's population is growing and becoming
increasingly diverse. Minority Centers of Excellence support
increased research on minority health, establish educational
pipelines, and provide clinical experiences in community-based
health facilities. The Health Careers Opportunity Program helps
to improve the development of a competitive applicant pool
through partnerships with local educational and community
organizations and extends the healthcareers pipeline to the K-
12 level. The Faculty Loan Repayment and Faculty Fellowship
programs provide incentives for schools to recruit
underrepresented minority faculty. The Scholarships for
Disadvantaged Students supports students from disadvantaged
backgrounds who are eligible and enrolled as full-time health
professions students.
--The Health Professions Workforce Information and Analysis program
provides grants to institutions to collect and analyze data to
advise future decisionmaking on the health professions and
nursing programs. The Health Professions Research and Health
Professions Data programs have developed valuable, policy-
relevant studies on the distribution and training of health
professionals. The National Center for Workforce Analysis
performs research and analysis on health workforce issues,
including supply and demand, to help inform both public and
private decisionmaking.
--The Public Health Workforce Development programs help increase the
number of individuals trained in public health, identify the
causes of health problems, and respond to such issues as
managed care, new disease strains, food supply, and
bioterrorism. The Public Health Traineeships and Public Health
Training Centers seek to alleviate the critical shortage of
public health professionals by providing up-to-date training
for current and future public health workers, particularly in
underserved areas. Preventive Medicine Residencies, which do
not receive funding through Medicare GME, provide training in
the only medical specialty that teaches both clinical and
population medicine to improve community health. This cluster
also includes a focus on loan repayment as an incentive for
health professionals to practice in disciplines and settings
experiencing shortages. The Pediatric Subspecialty Loan
Repayment Program offers loan repayment for pediatric medical
subspecialists, pediatric surgical specialists, and child and
adolescent mental and behavioral health specialists, in
exchange for service in underserved areas.
--The Nursing Workforce Development programs under Title VIII provide
support for nurses and nursing students across the entire
education spectrum improve the access to, and quality of,
healthcare in underserved areas. These programs provide the
largest source of Federal funding for nursing education,
providing loans, scholarships, traineeships, and programmatic
support that, between fiscal year 2006 and 2013 alone,
supported over 520,000 nurses and nursing students as well as
numerous academic nursing institutions and healthcare
facilities. At the same time, the need for high-quality nursing
services is expected to grow, particularly in rural and
underserved areas. The Advanced Nursing Education program
awards grants to train a variety of nurses with advanced
education, including clinical nurse specialists, nurse
practitioners, certified nurse-midwives, certified registered
nurse anesthetists, public health nurses, nurse educators, and
nurse administrators. Nursing Workforce Diversity grants help
to recruit and retain students from minority and disadvantaged
backgrounds to the nursing profession through scholarships,
stipends, and other retention activities. Graduate nursing
students are provided reimbursement for tuition and program
costs through the Advanced Education Nursing Traineeships and
Nurse Anesthetist Traineeships. The Nurse Education, Practice,
Quality, and Retention program helps schools of nursing,
academic health centers, nurse-managed health centers, State
and local governments, and other healthcare facilities to
develop programs that provide nursing education, promote best
practices, and enhance nurse retention. The Loan Repayment and
Scholarship Program repays up to 85 percent of nursing student
loans and offers full-time and part-time nursing students the
opportunity to apply for scholarship funds in exchange for 2
years of practice in a designated critical shortage facility.
The Comprehensive Geriatric Education grants support the
education of registered nurses and nursing professionals who
will provide direct care to older Americans, develop and
disseminate geriatric curricula, train faculty members, and
provide continuing education. The Nurse Faculty Loan program
supports graduate students pursing the opportunity to become
nursing faculty members through loan repayment in exchange for
service as nursing faculty.
--The loan programs under Student Financial Assistance support
financially disadvantaged health professions students. The
NURSE Corps supports undergraduate and graduate nursing
students with a preference for those with the greatest
financial need. The Primary Care Loan (PCL) program provides
loans in return for dedicated service in primary care. The
Health Professional Student Loan (HPSL) program provides loans
for financially needy health professions students based on
institutional determination. These programs are funded out of
each institution's revolving fund and do not receive Federal
appropriations. The Loans for Disadvantaged Students program
provides grants to institutions to make loans to disadvantaged
students.
Title VII and Title VIII programs guide individuals to high-demand
health professions jobs, helping individuals reach their goals and
communities fill their health needs. Further, numerous studies
demonstrate that the Title VII and Title VIII 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).
The multi-year nature of health professions education and training,
coupled with provider shortages across many disciplines and in many
communities, necessitate a strong, continued, and reliable commitment
to the Title VII and Title VIII programs.
While HPNEC members understand the budget limitations facing the
Subcommittee, we respectfully urge support for $524 million for the
Title VII and VIII programs. We look forward to working with the
Subcommittee to prioritize the health professions programs in fiscal
year 2016 and into the future.
______
Prepared Statement of the Heartland Health Outreach, Inc.
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Heartland Health Outreach, Inc. is part of a nationwide coalition,
the Food is Medicine Coalition, of over 80 food and nutrition services
providers, affiliates and their supporters across the country that
provide food and nutrition services to people living with HIV/AIDS
(PLWHA) and other chronic illnesses. In our service area, metropolitan
Chicago, our organization provides nutritious food for more than
420,000 million meals annually through distribution at grocery centers,
home delivered food boxes and home delivered meals. In all cases,
participants choose the food or meals they want, and dietitians tailor
the menus to address each participant's health issues and dietary
requirements. Collectively, the Food is Medicine Coalition is committed
to increasing awareness of the essential role that food and nutrition
services (FNS) play in successfully treating HIV/AIDS and to expanding
access to this indispensable intervention for people living with other
severe and chronic illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy. \6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, U.S.A.
J Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, U.S.A.
J Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Deborah Hinde, Chief Development
Officer, Heartland Health Outreach, Inc.]
______
Prepared Statement of the Hepatitis Appropriations Partnership
The Hepatitis Appropriations Partnership (HAP) is a national
coalition based in Washington, DC. The coalition includes community-
based organizations, public health and provider associations, national
hepatitis and HIV organizations, and diagnostic, pharmaceutical and
biotechnology companies. HAP works with policy makers and public health
officials to increase Federal support for hepatitis prevention,
testing, education, research and treatment. On behalf of HAP, we urge
your support for increased funding for Federal hepatitis programs in
the fiscal year 2016 Labor-Health-Education Appropriations bill, and
thank you for your consideration of the following critical funding
needs for hepatitis programs in fiscal year 2016:
------------------------------------------------------------------------
Agency Program HAP Funding request
-----------------------------------------------------------------------
Centers for Disease Division of Viral $62.8 million
Control and Hepatitis
Prevention
------------------------------------------------------------------------
The Centers for Disease Control and Prevention (CDC) has estimated
that up to 5.3 million people are living with chronic hepatitis B (HBV)
and/or hepatitis C (HCV) in the United States and as many as 75 percent
are not aware of their infection. However, these figures are based on
National Health and Nutrition Examination Survey (NHANES) data, which
does not include homeless and unstably housed individuals, those living
in nursing homes, the incarcerated, the military, or many immigrant and
migrant populations--populations disproportionately affected by viral
hepatitis. Without a confirmed diagnosis and linkage to and retention
in care, 15-40 percent of those living with viral hepatitis will
eventually develop liver cirrhosis and/or liver cancer. In 2012 alone,
40,599 cases of HBV and 145,762 cases of HCV were reported to the CDC.
Unfortunately, due to the lack of an adequate surveillance system,
these estimates are likely only the tip of the iceberg. Without the
necessary access to care and/or treatment, viral hepatitis can lead to
chronic liver disease, cirrhosis, liver cancer and liver failure and
complications from these chronic infections claim between 15,000 and
50,000 lives annually. Analyses of viral hepatitis-related morbidity
and mortality have found that the mortality rate attributed to viral
hepatitis has increased over the last several years.
Viral hepatitis disproportionately impacts several communities,
particularly people who inject drugs (PWID), men who have sex with men
(MSM), persons living with HIV, Native Americans, African Americans,
Asian Americans, Latinos and residents of rural and remote areas with
limited access to medical treatment and culturally and linguistically-
appropriate services. ``Baby Boomers,'' persons born between 1945 and
1965, have the greatest risk for HCV-related morbidity and mortality--1
in 33 people born in this time period are hepatitis C positive. Both
CDC and the United States Preventive Services Task Force (USPSTF) have
released HBV and HCV screening guidelines recommending that providers
offer a one-time HCV screening to anyone in this birth cohort, and that
anyone at high-risk for HBV and HCV should be screened. Additionally,
recent alarming epidemiologic reports indicate a rise in HCV infection
among young people throughout the country. Some jurisdictions have
noted that the number of people ages 15 to 29 being diagnosed with HCV
infection now exceeds the number of people diagnosed in all other age
groups combined, representing 75 percent of new HCV cases. In fact, 35
States reported increases in persons newly infected with HCV from 2010
to 2012.
Even with these challenges, the availability of effective new
curative treatments for HCV, and an effective vaccine and treatments to
control HBV, brings the elimination of HCV and HBV in the United States
within our reach, setting the stage for an enormous new public health
victory. The elimination of HCV and HBV in the United States is
possible--but not without increased investments in comprehensive,
national viral hepatitis prevention, screening, linkage to care,
education and surveillance programs.
cdc division of viral hepatitis
HAP encourages funding of $62.8 million for the CDC Division of
Viral Hepatitis (DVH) to more effectively combat the epidemics. In
fiscal year 2012, Congress demonstrated a commitment to increasing the
Federal response to the viral hepatitis epidemics with the creation of
the first-ever viral hepatitis screening initiative through the
Prevention and Public Health Fund (PPHF). This brought the total
funding at DVH to $29.7 million. The viral hepatitis community is
appreciative that Congress recognized the importance of the
identification and linkage to care of people living with viral
hepatitis who are unaware of their status. While past funding increases
have been helpful, these have only been small steps toward building a
more comprehensive response to viral hepatitis. The CDC's 2010
professional judgment (PJ) budget recommended $90.8 million each year
from fiscal year 2011-fiscal year 2013, $170.3 million annually from
fiscal year 2014-fiscal year 2017, and $306.3 million annually from
fiscal year 2018-fiscal year 2020 for DVH to comprehensively address
the hepatitis B and hepatitis C epidemics. HAP's requested increase of
$31.5 million, to $62.8 million, is in line with the needs determined
by that PJ and with the goals of the Action Plan for the Prevention,
Care, & Treatment of Viral Hepatitis (Viral Hepatitis Action Plan). HAP
recommends that these funds be used on the following priority areas,
allocated in proportion to HBV and HCV burden, using available
epidemiological data.
screening and linkage to care
At present, only 25-35 percent of people living with chronic viral
hepatitis are aware of their infection. The Viral Hepatitis Action Plan
established a goal of increasing the proportion of persons who are
aware of their hepatitis infection to 66 percent for both HBV and HCV.
In addition to identifying youth who are living with hepatitis C who
are unaware of their status, DVH must also increase the percentage of
Baby Boomers who are aware of their HCV status, and foreign-born and
2nd generation immigrants from Asian or African countries that have HBV
infection rates of 10 percent or higher. This is why full
implementation of the CDC and USPSTF recommendations for HBV and HCV
testing and linkage to care by State Medicaid programs, Medicare, and
private health systems and providers are so necessary. Of course, these
systems do not capture all of the populations at risk. Although health
departments receive no categorical funding for testing, they were able
to leverage other resources to test over 125,000 people in 2013. This
leveraged funding is not consistent from year to year, nor is it enough
to reach those populations at highest risk for hepatitis. In the
absence of a Federal commitment to a nationwide awareness, testing and
linkage to care initiative, we remain concerned about the ability of
the Federal Government to meet the goals of the Viral Hepatitis Action
Plan.
surveillance
As testing and linkage to care activities increase and improve,
strengthening local and State capacity to execute viral hepatitis
monitoring and surveillance activities takes on an even greater
importance. The CDC currently funds only 5 State health departments and
2 local health departments to conduct minimal surveillance in their
jurisdictions. CDC also provides funds to State and local health
departments, the cornerstone implementers of national public health
policies, to coordinate prevention efforts via the Viral Hepatitis
Prevention Coordinator Program (VHPC). The VHPC program is the only
national program dedicated to the prevention and control of the viral
hepatitis epidemics. This program provides funding to support a
coordinator position in each jurisdiction, but provides no money for
the provision of public health services, such as surveillance, public
education and access to prevention services like testing and hepatitis
A and B vaccinations, which must be cobbled together from other sources
year-to-year. With increased investments in nationally coordinated
surveillance activities, key stakeholders (States, health departments,
policy makers, and providers) would be equipped with information that
is critical to understanding the burden and impact of the hepatitis
epidemics, identify and avert outbreaks, and that will allow for
improved targeting of resources to the most impacted communities.
addressing the emerging hepatitis c epidemic among young persons at
risk
HCV prevalence among PWIDs is as high as 70 percent, and between
20-30 percent of uninfected people who inject drugs acquire HCV each
year. In recent years, State health departments have reported an
alarming increase in new HCV cases among people under the age of 30 in
many States, including but not limited to: Alabama, Colorado,
Connecticut, Georgia, Indiana, Kentucky, Maine, Maryland,
Massachusetts, Montana, New Mexico, North Carolina, Oregon, Tennessee,
Washington and West Virginia. Unlike historical trends of HCV
infections (i.e., concentration in larger, urban city centers), new HCV
infections are increasingly found in suburban and rural settings,
especially in Appalachia. This trend is largely due to the prescription
opiate epidemic and the transition many young people have made from
using opiate pills to injecting heroin. This increase makes the need to
enhance and expand these prevention efforts all the more urgent and
underscores the need to prioritize immediate support in the field,
strengthening health department and community responses that target
youth and young adults, specifically persons who inject drugs, persons
under 30 years old, and persons living in rural areas.
elimination of mother-to-child transmission of hepatitis b
Although we have made great strides in reducing the burden of HBV
among newborns and young people, due in part to the success of the
Perinatal Hepatitis B Coordinator program at CDC's National Center for
Immunization and Respiratory Diseases (NCIRD), between 800 to 1,000
perinatal HBV transmissions occur each year. Further, one of the
greatest remaining challenges for hepatitis A and B prevention is the
vaccination of high-risk adults. Additional funding at NCIRD for an
Adult HBV Vaccination Initiative is necessary to prevent the
transmission of HBV, and especially perinatal HBV. High-risk adults
account for more than 75 percent of all new cases of HBV infection each
year and annually result in an estimated $658 million in medical costs
and lost wages, despite the fact that HBV is preventable.
As you contemplate the fiscal year 2016 Labor, Health and Human
Services, Education and Related Agencies appropriations bill, we ask
that you consider these critical funding needs. We thank the Chairman,
Ranking Member and members of the Subcommittee, for their thoughtful
consideration of our recommendations. Our response to the viral
hepatitis epidemics in the United States defines us as a society, as
public health agencies, and as individuals living in this country.
There is no time to waste in our Nation's fight against these
epidemics.
[This statement was submitted by Mariah Johnson, Coordinator,
Hepatitis Appropriations Partnership.]
______
Prepared Statement of Joy Higgins
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the HIV Medicine Association
The HIV Medicine Association (HIVMA) of the Infectious Diseases
Society of America (IDSA) represents more than 5,000 physicians,
scientists and other healthcare professionals who practice on the
frontline of the HIV/AIDS pandemic. Our members provide medical care
and treatment to people with HIV/AIDS 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 2016 appropriations process, we urge you to
invest in the medical research supported by the National Institutes of
Health (NIH) and sustain robust funding for the Ryan White Program at
the Health Resources and Services and Administration (HRSA) as well as
the Centers for Disease Control and Prevention's (CDC) HIV and STD
prevention programs.
Early access to effective HIV treatment helps patients with HIV
live healthy and productive lives and is cost effective.\1\ Treatment
not only saves the lives of individuals with HIV but directly benefits
public health by reducing HIV transmission risk to near zero.\2\
However, despite our remarkable progress in HIV prevention, diagnosis
and treatment, HIV/AIDS remains a serious epidemic in the United States
with a record 1.1 million people living with HIV and an estimated
50,000 new infections occurring annually. In our country, HIV infection
disproportionately impacts racial and ethnic minority communities and
low income people who depend on public services for their life-saving
healthcare and treatment. The rate of new HIV infection in African
Americans is 8 times that of whites based on population size.\3\
Globally there are more than 35.3 million people living with HIV, the
great majority of them in Sub-Saharan Africa. We are beginning to see
improvements thanks in large part to U.S. investments in programs like
PEPFAR, and the CDC Global AIDS Program is a critical partner in
country level efforts to achieve epidemic control. We call for a
funding level of at least $132 million to sustain CDC this vital
lifesaving role.
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\1\ Kitahata, Gange, Abraham, et al. Effect of early versus
deferred antiretroviral therapy for HIV on survival. New Engl J Med
2009;360:1815-26.
\2\ Cohen, Myron S., et al. Prevention of HIV-1 Infection with
Early Antiretroviral Therapy. 2011 New England Journal of Medicine 493-
505: V365, no 6, http://www.nejm.org/doi/full/10.1056/NEJMoa11052.
\3\ CDC Fact Sheet, February, 2014, accessed online at: http://
www.cdc.gov/hiv/risk/racialethnic/aa/facts/index.html.
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The funding requests in our testimony largely reflect the consensus
of the Federal AIDS Policy Partnership (FAPP), a coalition of HIV
organizations from across the country, and are estimated to be the
amounts necessary to mount an effective response to the domestic HIV
epidemic and meet the need in communities across the country.
NIH--Office of AIDS Research (OAR).--HIVMA strongly supports an
fiscal year 2016 funding level of at least $32 billion for the NIH,
including at least $3.2 billion for the NIH Office of AIDS Research.
This level of funding is vital to sustain the pace of research that
will improve the health and quality of life for millions of men, women
and children in the U.S. and in the developing world. Years of flat
funding for biomedical research has eroded our capacity to sustain our
Nation's historic worldwide leadership in HIV/AIDS research and
innovation, and is discouraging cultivation of the next generation of
scientists.
Our past investment in comprehensive HIV/AIDS research paid off
enormously in dramatic gains that resulted in reductions in mortality
from AIDS of nearly 80 percent in the U.S. and in other countries where
treatment is available. This research also helped reduce the mother to
child HIV transmission rate from 25 percent to less than 1 percent in
the U.S. and to very low levels in other countries where treatment is
available.
Strong, sustained NIH funding is a critical national priority that
will foster better health, economic revitalization and game-changing
new discoveries that hold promise for an HIV vaccine and ultimately a
cure. Sustained increases in funding are also essential to train the
next generation of scientists and prepare them to make tomorrow's HIV
discoveries. Congress should ensure our Nation does not delay vital
HIV/AIDS research progress.
HRSA--HIV/AIDS Bureau (HAB).--It is critical to maintain level
funding for the Ryan White Program, which annually serves more than
half a million individuals living with HIV. The Ryan White Program
provides expert, comprehensive HIV care and treatment that helps most
patients achieve viral suppression, allowing them to live for close to
a normal lifespan and reducing their infectiousness to others to almost
zero. Estimated authorization levels for the program in fiscal year
2016 would call for an increase of at least $136 million to the Ryan
White program. For Ryan White Part C program, that supports HIV medical
clinics, HIVMA requests $225.1 million, or a $24 million increase.
These additional funds would help to support the ever increasing need
for these lifesaving services. Part C HIV medical clinics currently
struggle to meet the demand of increasing patient caseloads. The
expert, comprehensive HIV care model or ``medical home'' that is
supported by the Ryan White Program has been highly successful at
achieving positive clinical outcomes with a complex patient population.
Patients with HIV who receive Ryan White services are more likely to be
prescribed HIV treatment and to be virally suppressed.\4\ We also know
that the annual healthcare costs for HIV patients who are not able to
achieve viral suppression (often due to delayed diagnosis and care) are
nearly 2.5 times that of healthier HIV patients.\5\
---------------------------------------------------------------------------
\4\ Bradley, H., et al. Ryan White HIV/AIDS Program Assistance and
HIV Treatment Outcomes in the United States. CROI 2015. Abstract: 1064.
Accessed online at: http://www.croiconference.org/sessions/ryan-white-
hivaids-program-assistance-and-hiv-treatment-outcomes-united-states.
\5\ Based on data from Gilman BH, Green, JC. Understanding the
variation in costs among HIV primary care providers. AIDS
Care.2008:20;1050--6.
---------------------------------------------------------------------------
Additionally, while HIVMA welcomes the proposed increase for Part C
programs in the President's fiscal year 2016 budget, we do not support
the proposal to consolidate Ryan White Part D funding into Part C. Ryan
White Part C and D programs both provide comprehensive, effective care
and treatment for women, infants, children and youth living with HIV/
AIDS. However, Part D programs have cultivated special expertise for
engaging and retaining women, including pregnant women, HIV-exposed
infants, and young people in care. The programs provide services
tailored to women and young people and in some communities, Part D-
funded programs are the main providers of HIV care and treatment.
While the Affordable Care Act (ACA) provides important new
healthcare coverage options for many patients, most health insurers
fail to support the comprehensive care and treatment necessary for many
patients to manage HIV infection. High cost sharing, benefit gaps and
limited state uptake of the Medicaid expansion, especially in the
South, necessitate an essential and ongoing role for the Ryan White
Program to avoid life-threatening and costly disruptions in care.
CDC--National Center for HIV/AIDS, Viral Hepatitis, STD, and TB
Prevention (NCHHSTP).--HIVMA strongly supports the much needed increase
of $44 million proposed in the President's fiscal year 2016 budget for
the CDC's NCHHSTP, especially the proposed $31.5 million for viral
hepatitis, as well as increases of $6.3 million for HIV prevention and
surveillance, and $6.3 million for the Division of Adolescent School
Health (DASH). We are also especially concerned about flat funding of
CDC's global HIV programs, and request an increase of at least $3.3
million to that line item for a total of $132 million, which includes
resources for the agency's essential role in implementing PEPFAR
programs in developing nations.
Policy Riders--Remove the Harmful Ban on Federal Funding for
Syringe Exchange Programs.--HIVMA strongly urges the Committee to lift
the ban on Federal funding for syringe exchange programs (SEPs). HIVMA
is committed to evidence-based public health interventions that both
increase access to healthcare and decrease transmission of HIV, viral
hepatitis, and other blood-borne pathogens. Injection drug use is a
major route of transmission for these infectious agents. Because
transmission occurs through the sharing or re-use of infected
paraphernalia, access to uninfected injection equipment is a key part
of infection prevention programs--and is especially critical at this
time, given the recent resurgence of injection drug use in many parts
of the Nation. The current HIV outbreak in Indiana, which is related to
injection drug use, underscores the salience of this issue.
SEPs also help improve individual and community public health by
engaging individuals in medical care. SEPs are associated with
decreases in HIV and viral hepatitis incidence, and provide an
important point of healthcare access, including initiation of HIV and
viral hepatitis education, counseling and testing, and entry into
substance use treatment. SEPs also benefit community safety by reducing
the number of improperly disposed syringes as well as reducing needle
stick injuries to law enforcement officers and other first responders.
conclusion
We are at serious risk of losing ground against the HIV pandemic if
we fail to prioritize public health and research programs. HIV remains
the leading infectious killer worldwide, and we must fully leverage and
invest in HIV prevention, care and treatment and research to save the
lives of millions who are infected or at risk of infection here in the
U.S. and around the globe.
[This statement was submitted by Dr. Adaora Adimora, MD, MPH,
FIDSA, HIV Medicine Association.]
______
Prepared Statement of Elaine Hopkins
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Reverend Nancy S. Hull
Let me preface my stance on this issue by making you aware that I
work in the field of intellectual/developmental disabilities and as
President/CEO of a church related agency that has a ministry to over
100 clients/residents and their families. We believe in choice, and
offer both a community home option and an intermediate care facility
(ICF) option to families. The families we serve whose children or
family member resides in the ICF have made a conscious choice that this
is the setting that best serves their family member's needs. I cannot
understand why no one is listening to them. Recently we presented to
the Ohio House of Representatives petitions signed by 18,500 persons
who are urging you to stop the Disability Rights of Ohio group, the
Department of Justice, and others who are misusing government dollars
by attempting to make decisions for families which are the right of the
family member or individual served.
I would invite any of you to come to Flat Rock Care Center in
Seneca County, Ohio to see a model of facility where individuals served
live in houses of 6 persons, all of which are individual units with
living rooms, dining rooms, activity rooms, kitchens, and bedrooms that
have individual space designed for two persons but giving each privacy.
Each bedroom has a handicapped bathroom attached. Our gym area and
campus are used by community children and adults on a weekly basis.
This facility is not isolating, it is integrating.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Infectious Diseases Society of America
On behalf of the Infectious Diseases Society of America (IDSA),
thank you for the opportunity to provide testimony in support of the
U.S. Department of Health and Human Services (HHS) agencies and
programs that contribute to the prevention, detection and treatment of
infectious diseases (ID). IDSA represents more than 10,000 ID
physicians and scientists devoted to patient care, prevention, public
health, education, and research. IDSA recommends increased fiscal year
2016 Federal investments in public health and biomedical research to
save lives, contain healthcare costs, and promote economic growth. More
specifically, IDSA encourages the Subcommittee to provide a program
level of $7.8 billion for the Centers for Disease Control and
Prevention (CDC) as well as at least $32 billion for the National
Institutes of Health (NIH).
IDSA is particularly supportive of initiatives contained in the
President's Budget Request (PBR) for fiscal year 2016 to address the
growing public health crisis of antibiotic resistance. These proposals
enable implementation of the recently released National Action Plan for
Combating Antibiotic-Resistant Bacteria (CARB). The Action Plan
reflects recommendations put forward by the President's Council of
Advisors on Science and Technology (PCAST) in their September 2014
Report to the President on Combating Antibiotic Resistance. In
particular, IDSA urges the Subcommittee to fund the proposed CDC
Antibiotic Resistance Solutions Initiative. We ask that the final
fiscal year 2016 Labor-HHS-Education appropriations bill also support
the role of the National Institutes of Health (NIH) and the Biomedical
Advanced Research and Development Authority (BARDA) in stimulating
research and development (R&D) for rapid ID diagnostics and
antibiotics.
centers for disease control and prevention
The recent outbreak of Ebola virus disease (EVD) in West Africa and
subsequent cases in the United States demonstrates that infectious
diseases respect no national borders and that the CDC must be
appropriately funded to maintain readiness ahead of new crises. IDSA
members are partnering with the CDC and other Federal agencies to
respond to the EVD crisis. We ask that the Subcommittee support
collaborations between government, industry, academia and other non-
governmental organizations to address the full range of infectious
diseases confronting the public. Our country requires on a fully
engaged and stably supported CDC to address public health needs such as
slowing the rise of antibiotic resistance, increasing immunization
rates and stopping the spread of HIV.
Conservative estimates indicate that more than two million
Americans suffer from antibiotic-resistant infections each year and
that approximately 23,000 will die. Additionally, there were half a
million Clostridium difficile (C. difficile) infections in the United
States in 2011, and 29,000 died within 30 days of the initial
diagnosis. C. difficile is a unique bacterial infection that, although
not significantly resistant to the drugs used to treat it, is directly
related to antibiotic use and resistance. Carbapenem-resistant
Enterobacteriaceae (CRE) has been labeled a ``nightmare bacteria.''
Nearly half of individuals who develop a bloodstream infection from CRE
will die. Each year, antibiotic resistance results in an additional 8
million hospital days and costs in excess of $20 billion to the U.S.
healthcare system. The actual human and financial costs are likely far
higher, as our surveillance and data collection capabilities cannot yet
capture the full disease burden. The death and financial tolls rise
with each day that we fail to act.
PCAST and the CDC have recommended actions in four core areas to
address the problem, including prevention, tracking, antibiotic
stewardship, and development of new antibiotics and rapid ID
diagnostics. The CDC has proposed fiscal year 2016 activities in each
of these areas for which new funding is needed.
National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)
The NCEZID leads CDC efforts to address antibiotic resistance. As
such, we ask that it be provided at least the $699 million requested by
the Administration, including at least $264 million for the Antibiotic
Resistance Solutions Initiative. This initiative would build prevention
programs in all 50 States and 10 large cities, utilizing evidence-based
approaches to stop the spread of drug-resistant bacteria and preserve
the effectiveness of existing antibiotics. The initiative also supports
a new network of regional labs to improve tracking of and response to
outbreaks of serious and potentially deadly bacteria. The CDC projects
that over 5 years, the initiative will lead to a 60 percent decline in
health-care associated CRE, 50 percent reduction in C. difficile, 50
percent decline in bloodstream methicillin-resistant Staphylococcus
aureus (MRSA), 35 percent decline in health-care associated multidrug-
resistant Pseudomonas spp., and 25 percent reduction in multidrug-
resistant Salmonella infections, more than covering the costs of
investing in these programs now.
IDSA also supports the proposed $14 million increase for the
National Healthcare Safety Network (NHSN) to expand the number of
participating healthcare facilities to 17,000 and increase the number
of sites reporting antibiotic use and antibiotic resistance data.
Information provided via NHSN is critical for evaluating the success of
interventions designed to reduce inappropriate antibiotic use and limit
the development of resistance and is therefore an integral component to
broader efforts to address resistance.
IDSA thanks Congress for funding the Advanced Molecular Detection
(AMD) initiative in fiscal year 2015 and recommends that at least $30
million be allocated for it in fiscal year 2016. AMD strengthens CDC's
molecular sequencing tools and bioinformatics capacity to more rapidly
and accurately detect infectious diseases and resistance. During the
most recent Ebola virus disease outbreak, AMD methods were utilized to
determine whether the virus was changing as it spread through different
populations, which facilitated appropriate responses.
Global Health
IDSA supports CDC efforts to expand the Global Health Security
Agenda, which would strengthen the capacity of nations to prevent,
detect and slow the spread of infectious diseases across borders,
simultaneously reducing threats to the United States. We ask that you
provide the initiative with at least the funding requested in the
fiscal year 2016 PBR.
IDSA also encourages the Subcommittee to increase research,
monitoring, and evaluation efforts for malaria and neglected tropical
diseases. Chikungunya, as well as Chagas disease and dengue fever have
been reported in the United States. At least 40 percent of the world's
population is at risk of serious illness and death from mosquito-borne
viral diseases.
National Center for Immunization and Respiratory Diseases
Immunizations are among the most cost-effective clinical
preventative services. However, according to the CDC February 2015
Morbidity and Mortality Weekly Report, national adult immunization
rates remain low for most routinely recommended vaccines. Each year in
the United States, tens of thousands of adults die from illnesses that
are preventable through vaccination. Additionally, vaccine-preventable
diseases and related complications result in billions of dollars
annually in direct and indirect healthcare costs. During the last year,
measles outbreaks and a sub-optimal influenza vaccine have reminded us
of the importance of immunizations to public health.
IDSA opposes the $50 million reduction to the CDC Immunization
Grant Program (Section 317) contained in the PBR. Although the
Affordable Care Act requires insurers to cover immunizations, this
alone will not guarantee access or utilization. Section 317 funds are
critical to help providers obtain and store vaccines; establish and
maintain vaccine registries; as well as to educate providers and the
public about vaccine recommendations, effectiveness and safety; and
promote universal vaccination of healthcare workers.
IDSA recommends that the Subcommittee provide at least the $188
million proposed in the PBR for CDC efforts to control influenza. CDC
plays a critical role in seasonal and pandemic influenza preparedness
and response, including conducting surveillance activities that inform
response efforts and providing public communications regarding
influenza prevention and treatment. Insufficient funding for these
efforts could lead to increased incidence and severity of influenza, as
well as increased hospitalization costs and mortality rates. Sustained
support for these efforts is more cost-effective than periodic
emergency supplemental funding.
national institutes of health
National Institute of Allergy and Infectious Diseases (NIAID)
Within NIH, we believe that the National Institute of Allergy and
Infectious Diseases should be funded at least at $4.62 billion as
requested by the Administration in the fiscal year 2016 PBR. Decreases
in the purchasing power of NIAID have limited investment in new
research and provided a disincentive for the pursuit of ID research
careers so critical to the discovery of new vaccines, antimicrobials,
diagnostics, and prevention strategies.
The NIAID is central to pursuits of new rapid ID diagnostics and
antibiotics. A recent IDSA report, Better Tests, Better Care: The
Promise of Next Generation Diagnostics explains that advances in
biomedical research over the last few decades create the potential for
increasingly simple, fast and reliable diagnostic tests for infectious
diseases. By allowing physicians to quickly distinguish between
bacterial and viral infections, better diagnostics can lead to faster
and more appropriate treatments for patients, help preserve the utility
of our existing drugs, and aid in identifying individuals to
participate in clinical trials. Last year, NIAID stated its intention
to place special emphasis on rapid diagnostics. Several initiatives
have been announced, such as funding for diagnostics to quickly detect
bacteria responsible for drug-resistant infections acquired in hospital
settings and tests to identify reservoirs of latent HIV infection.
While increased funding is urgently needed, IDSA also recommends
that the Subcommittee promote necessary and appropriate collaboration
between academic researchers who receive NIH funding and industry by
urging HHS to clarify its conflict of interest (COI) rules. Diagnostic
test developers often require expert input or independent validation of
a potential test during development from individuals at academic
institutions. Institutional COI policies are often much more strict
than the HHS COI regulatory framework, which was intended to provide
guidance to institutions on how to manage COI. These COI policies vary
widely between institutions and are sometimes misinterpreted. This
results in an unnecessary stifling of needed collaboration between
academic researchers and industry when appropriate, which in turn
forces developers to forgo expert input or use laboratories lacking the
expertise for independent validation.
The NIAID supports the Antibacterial Resistance Leadership Group
(ARLG), led by researchers at Duke University and the University of
California San Francisco. With sufficient funding, the research
network/infrastructure will continue studies to address antibiotic
resistance. Severe economic disincentives continue to cause private
companies to leave the antibiotics market, making federally funded
research in this area more critical than ever.
The ARLG has supported early clinical research on diagnostics that
rapidly identify resistant bacteria. The research group has created a
virtual biorepository, which is a web-based portal that provides
researchers with unique access to clinically well-characterized
bacteria for the development of diagnostic tests and other research.
Diagnostics research is often hampered by lack of clinical samples for
testing. IDSA urges the Subcommittee to support NIAID exploration of
opportunities to develop virtual biorepositories for viruses, fungi,
and other pathogens already collected through its existing funded
research.
assistant secretary for preparedness and response (aspr)
Biomedical Advanced Research and Development Authority (BARDA)
BARDA is a critical initiator of public-private collaborations for
antibiotic, diagnostic and vaccine R&D. PCAST has identified BARDA as
best positioned to elicit private investments necessary to address
antibiotic resistance. However, the BARDA budget has been flat-funded
for several years, with inflation leading to loss of purchasing power.
Increased funding would allow BARDA to work with industry as a counter
to current market failures. IDSA recommends that the Subcommittee
provide at least the $522 million requested for BARDA in the
president's budget for fiscal year 2016. Such funding is necessary to
allow BARDA to pursue additional work on antibiotic development while
maintaining its strong focus on other medical countermeasures to
address biothreats.
Once again, thank you for the opportunity to submit this statement
on behalf of the Nation's ID physicians and scientists. We rely on
strong Federal partnerships to keep Americans healthy and urge you to
support these efforts. Please forward any questions to Jonathan Nurse.
[This statement was submitted by Stephen B. Calderwood, MD, FIDSA,
IDSA, President, Infectious Diseases Society of America.]
______
Prepared Statement of the Institute of Makers of Explosives
interest of ime
IME is a nonprofit association founded in 1913 to provide accurate
information and comprehensive recommendations concerning the safety and
security of commercial explosive materials. Our mission is to promote
safety and the protection of employees, users, the public and the
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 U.S. manufacturers and distributors of commercial
explosive materials and oxidizers as well as other companies 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 produce over 98 percent 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.
Commercial explosives are pervasively regulated by a myriad of
Federal and State agencies. Explosives manufacturing, storage and
transportation facilities are subject to OSHA's Explosives and Blasting
Agents standard. In addition, all explosives facilities and AN
manufacturing facilities comply with the Process Safety Management
(PSM) standard.\1\ OSHA participates in the Chemical Facility Safety
and Security Working Group, or Interagency Working Group (``IWG''),
which is engaged in satisfying the requirements of Executive Order
(``EO'') 13650, Improving Chemical Facility Safety and Security. The
IWG's June 6, 2014 status report, Actions to Improve Chemical Facility
Safety and Security--A Shared Commitment, includes actions that have
the potential to significantly impact the commercial explosives
industry.
---------------------------------------------------------------------------
\1\ AN manufacturing facilities are covered by PSM because they use
anhydrous ammonia in the manufacturing process.
---------------------------------------------------------------------------
We offer the following comments on OSHA's request for funds to
address chemical facility safety including ammonium nitrate (AN)
facilities, and the concurrent need to ensure that the agency's actions
complement the regulatory requirements of other Federal agencies while
avoiding unnecessary regulation and/or redundancy within and between
agency programs.
background
AN is an indispensable ingredient in blasting agents used in
mining, construction, and other industries critical to the U.S.
economy. Currently, upwards of 75 percent of the billions of pounds of
AN consumed annually is manufactured for the explosives industry. AN-
based blasting agents have become the most widely used explosive
materials in the world since their introduction in the 1950s. There is
no viable alternative.
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 self-reactive and does not pose a threat of
an accidental release of energy or fumes unless subjected to
substantial and sustained heat (e.g., fire) or shock from high
explosives.
osha's psm budget request
OSHA is requesting $23,306,000 to fund Safety and Health Standards
activity.\2\ This includes an increase in funding to support EO 13650.
In connection with that effort, OSHA states that it will use the
appropriation to modernize PSM as well as other standards impacting the
commercial explosives industry (e.g., ammonium nitrate storage updates
and clarifications in the Explosives and Blasting Agents standard), and
to develop several related guidance documents in consultation with
other Federal agencies.\3\ In pursuing the requirements of the EO,
OSHA, in December 2013, published a Request for Information (RFI) on
PSM. Among other things, OSHA inquired whether AN should be included on
an expanded list of substances covered by PSM. We do not believe that
any resources appropriated to support OSHA's programs should be used to
fund an expansion of the PSM program to include AN. Rather, should OSHA
choose to address AN safety, its resources should be allocated to the
enhancement of existing OSHA regulations governing this material.
---------------------------------------------------------------------------
\2\ fiscal year 2016 OSHA Congressional Budget Justification, p.
24.
\3\ Id.
---------------------------------------------------------------------------
Since 1971, the storage and handling of AN has been regulated under
OSHA rules that specifically address the properties of this material.
These rules at 29 CFR 1910.109(i) are part of the Explosives and
Blasting Agents standard and are based on NFPA safety codes.\4\ There
is no known accidental detonation of AN where a facility has been
compliant with this OSHA standard.\5\ In fact, the safe management of
AN is not complicated and is easily achieved by following very basic,
well-understood safety practices. When handled in accordance with these
simple tenets, AN is a stable, relatively inert material; it is not the
type of highly hazardous chemical that Congress intended to cover under
the PSM program. While efforts to include AN under PSM are not
necessary or appropriate, we do support the appropriation of sufficient
funds to allow OSHA to update 29 CFR 1910.109(i) to comport with the
most recent edition of NFPA's code addressing AN and with modern
industry best practices and standards.
---------------------------------------------------------------------------
\4\ NFPA 400, Hazardous Materials Code. The 2016 edition of the
code is scheduled for publication in December 2015.
\5\ In addition, AN is subject to various ATF, EPA, DHS, and DOT
safety and security regulations.
---------------------------------------------------------------------------
In support of this recommendation, we urge the Subcommittee to
include the following language submitted by Senator John Barrasso in
the Subcommittee's fiscal year 2016 appropriations bill:
(X) None of the funds made available by this Act may be used
imposed new regulations on the storage of solid ammonium nitrate unless
those funds are used to update section 1910.109(i), title 29, Code of
Federal Regulations, to be consistent with the safety standards for the
storage of solid ammonium nitrate issued by the National Fire
Protection Association in publication NFPA 400 Hazardous Materials Code
and such other voluntary standard-setting organization as the Secretary
determines appropriate.
We believe that this allocation of available resources will prevent
redundant and unnecessary Federal regulation while ensuring the safety
of commercial explosives and AN facilities and their host communities.
conclusion
Given the decades-long safety record of OSHA's 1910.109(i) standard
on AN, imposing a complex regulatory program like PSM would impose a
significant administrative and economic burden on impacted small
businesses without any commensurate improvement in safety. While we
support the modernization of the 1910.109(i) standard, we believe the
inclusion of AN in the PSM standard would amount to over-regulation,
would prove exceedingly costly, and would do nothing to enhance the
safety of workers or the public. Any funding provided to OSHA should
include a prohibition on the expansion of PSM to include AN.
[This statement was submitted by Cynthia Hilton, Executive Vice
President, Institute of Makers of Explosives.]
______
Prepared Statement of the International Foundation for Functional
Gastrointestinal Disorders
_______________________________________________________________________
--$32 billion for the National Institutes of Health (NIH) at an
increase of $1 billion over fiscal year 2012. Increase funding
for the National Cancer Institute (NCI), the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute of Allergy and Infectious Diseases (NIAID)
by 12 percent.
--Continue focus on Digestive Disease Research and Education at NIH,
including), Irritable Bowel Syndrome (IBS), Fecal Incontinence
Gastroesophageal Reflux Disease (GERD) Gastroparesis, and
Cyclic Vomiting Syndrome (CVS).
_______________________________________________________________________
Thank you for the opportunity to present the views of the
International Foundation for Functional Gastrointestinal Disorders
(IFFGD) regarding the importance of functional gastrointestinal and
motility disorders (FGIMD) research. Established in 1991, IFFGD is a
patient-driven nonprofit organization dedicated to assisting
individuals affected by FGMIDs, and providing education and support for
patients, healthcare providers, and the public. IFFGD also works to
advance critical research on FGIMDs in order to develop better
treatment options and to eventually find cures. IFFGD has worked
closely with the National Institutes of Health (NIH) on many
priorities, and I served on the National Commission on Digestive
Diseases (NCDD), which released a long-range plan in 2009, entitled
Opportunities and Challenges in Digestive Diseases Research:
Recommendations of the National Commission on Digestive Diseases.
The need for increased research, more effective and efficient
treatments, and the hope for discovering a cure for FGIMDs are close to
my heart. My own experiences of suffering from FGIMDs motivated me to
establish IFFGD, and I was shocked to discover that despite the high
prevalence of FGIMDs among all demographic groups, such a lack of
research existed. This translates into a dearth of diagnostic tools,
treatments, and patient supports. Even more shocking is the lack of
awareness among the medical community and the public, leading to
significant delays in diagnosis, frequent misdiagnosis, and
inappropriate treatments including unnecessary surgery. Most FGIMDs
have no cure and limited treatment options, so patients 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.
irritable bowel syndrome (ibs)
IBS affects 30 to 45 million Americans, conservatively at least 1
out of every 10 people. It is a chronic disease that causes abdominal
pain and discomfort associated with a change in bowel pattern, such as
diarrhea and/or constipation. As a ``functional disorder,'' IBS affects
the way the muscles and nerves work, but the bowel does not appear to
be damaged on medical tests. Without a diagnostic test, IBS often goes
undiagnosed or misdiagnosed for years. Even after IBS is identified,
treatment options are limited and vary from patient to patient. Due to
persistent pain and bowel unpredictability, individuals may distance
themselves from social events and work. Stigma surrounding bowel habits
may act as barrier to treatment, as patients are not comfortable
discussing their symptoms with doctors. Many people also dismiss their
symptoms or attempt to self-medicate with over-the-counter medications.
Outreach to physicians and the general public remain critical to
overcome these barriers to treatment and assist patients.
fecal incontinence
At least 12 million Americans suffer from fecal incontinence.
Incontinence crosses all age groups, but is more common among women and
the elderly of both sexes. Often it is associated with neurological
diseases, cancer treatments, spinal cord injuries, multiple sclerosis,
diabetes, prostate cancer, colon cancer, and uterine cancer. Causes of
fecal incontinence include: damage to the anal sphincter muscles,
damage to the nerves of the anal sphincter muscles or the rectum, loss
of storage capacity in the rectum, diarrhea, or pelvic floor
dysfunction. People may feel ashamed or humiliated, and most attempt to
hide the problem for as long as possible. Some don't want to leave the
house in fear they might have an accident in public; they withdraw from
friends and family, and often limit work or education efforts.
Incontinence in the elderly is the primary reason for nursing home
admissions, an already significant social and economic burden in our
aging population. In 2002, IFFGD sponsored a consensus conference
entitled, Advancing the Treatment of Fecal and Urinary Incontinence
Through Research: Trial Design, Outcome Measures, and Research
Priorities. IFFGD also collaborated with NIH on the NIH State-of-the-
Science Conference on the Prevention of Fecal and Urinary Incontinence
in Adults in 2007.
NIDDK recently launched a Bowel Control Awareness Campaign (BCAC)
that provides resources for healthcare providers, information about
clinical trials, and advice for individuals suffering from bowel
control issues. The BCAC is an important step in reaching out to
patients, and we encourage continued support for this campaign. Further
research on fecal incontinence is critical to improve patient quality
of life and implement the research goals of the NCDD.
gastroesophageal reflux disease (gerd)
GERD is a common disorder which results from the back-flow of
stomach contents into the esophagus. GERD is often accompanied by
chronic heartburn and acid regurgitation, but sometimes the presence of
GERD is only revealed when dangerous complications become evident.
There are treatment options available, but they are not always
effective and may lead to serious side effects. Gastroesophageal reflux
(GER) affects as many as one-third of all full term infants born in
America each year and even more premature infants. GER results from
immature upper gastrointestinal motor development. Up to 8 percent of
children and adolescents will have GER or GERD due to lower esophageal
sphincter dysfunction and may require long-term treatment.
gastroparesis
Gastroparesis, or delayed gastric emptying, refers to a stomach
that empties slowly. Gastroparesis is characterized by symptoms from
the delayed emptying of food, namely: bloating, nausea, vomiting, or
feeling full after eating only a small amount of food. Gastroparesis
can occur as a result of several conditions, and is present in 30
percent to 50 percent of patients with diabetes mellitus. A person with
diabetic gastroparesis may have episodes of high and low blood sugar
levels due to the unpredictable emptying of food from the stomach,
leading to diabetic complications. Other causes of gastroparesis
include Parkinson's disease and some medications. In many patients the
cause cannot be found and the disorder is termed idiopathic
gastroparesis.
cyclic vomiting syndrome (cvs)
CVS is a disorder with recurrent episodes of severe nausea and
vomiting interspersed with symptom free periods. The periods of
intense, persistent nausea and vomiting, accompanied by abdominal pain,
prostration, and lethargy, last hours to days. Previously thought to
occur primarily in pediatric populations, it is increasingly understood
that this crippling syndrome can occur in many age groups, including
adults. CVS patients often go for years without correct diagnosis. CVS
leads to significant time lost from school and from work, as well as
substantial medical morbidity. The cause of CVS is not known. Research
is needed to help identify at-risk individuals and develop more
effective treatment strategies.
support for critical research
IFFGD urges Congress to fund the NIH at level of $32 billion for
fiscal year 2016. Strengthening and preserving our Nation's biomedical
research enterprise fosters economic growth and supports innovations
that enhance the health and well-being of the Nation. Concurrent with
overall NIH funding, IFFGD supports the growth of research activities
on FGIMDs to strengthen the medical knowledge base and improve
treatment, particularly through the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) with a level of funding at $2.066
billion for fiscal year 2016. Such support would expedite the
implementation of recommendations from the NCDD. It is also vital for
NIDDK to work with the National Institute of Child Health and Human
Development (NICHD) to expand its research on the impact FGIMDs have on
pediatric populations. Following years of near level-funding, research
has been negatively impacted across all NIH Institutes and Centers.
Without additional funding, medical researchers run the risk of losing
promising research opportunities that could benefit patients.
We applaud the recent establishment of the National Center for
Advancing Translational Sciences (NCATS) at NIH. Initiatives like the
Cures Acceleration Network are critical to overhauling the
translational research process and overcoming the challenges that
plague treatment development. In addition, new efforts like taking the
lead on drug repurposement hold the potential to speed new treatment to
patients. We ask that you support NCATS and provide adequate resources
for the Center in fiscal year 2016.
Thank you for the opportunity to present these views on behalf of
the FGIMD community.
[This statement was submitted by Tegan Gaetano, Program Specialist,
International Foundation for Functional Gastrointestinal Disorders.]
______
Prepared Statement of the Interstate Mining Compact Commission
We are writing in support of the fiscal year 2016 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. MSHA's budget request for
State assistance grants is $8,441,000. While the proposed amount goes a
long way in helping the States provide important safety training and is
appreciated by the States, it is approximately the same amount that has
been appropriated for State assistance grants by Congress over the past
several fiscal years and, as such, does not fully consider inflationary
and programmatic increases being experienced by the States. We urge the
subcommittee to restore funding to the 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 Mining Health and Safety Act of 1969, 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
1977 Amendments to the Mine Safety and Health Act 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 new 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. MSHA estimates in its budget justification document for
Educational Policy and Development (EPD) that the States will train
approximately 180,000 miners in fiscal year 2016. The most recent
accounting of the number of miners trained by a sampling of the States
based on fiscal year 2014 reporting for coal and metal/nonmetal is as
follows:
--Kentucky: Trained or tested over 17,758.
--Alaska: 1,119 miners trained.
--New Mexico: 1,942 miners trained.
--Illinois: 13,227 miners and contractors trained (including
Aggregate Part 46, Coal Mine Accident Prevention, certification
and EMT training).
--Indiana: 3,247 miners and contractors trained.
--Oklahoma: 4,180 miners trained.
--Pennsylvania: 6,535 miners trained.
--Ohio: 7,000 miners trained.
--Colorado: 4,731 miners trained.
--Arkansas: 2,573 miners and contractors trained.
--Nevada: 2,329 miners trained.
--North Carolina: 8,515 miners trained.
--Maryland: 452 miners trained (fiscal year 2013).
--Arizona: 2,612 miners trained.
--Virginia: 4,940 miners trained and 2,422 certifications issued.
--Mississippi: 175 miners and contractors trained.
Note that the numbers of miners trained has decreased over the past
few years due to the reductions and/or delays in State grant funding.
This continues to be a serious challenge for State training programs in
fiscal year 2015 with States still awaiting the allocation of grant
awards as of March 20, 2015--six months into the fiscal year. Given
MSHA's reluctance to date to utilize interim grant allocations during
the fiscal year (as other Federal agencies do), these delays in
authorizing grant allocations are unduly disrupting the States' ability
to run effective training programs that rely on certain, consistent and
timely funding. Another complicating factor is MSHA's intention to
utilize a new formula for distributing grant moneys among the States
based on production and employment figures over a 5 year period of
time. While we have yet to see the details of this new approach, the
States are concerned about its appropriateness, fairness and overall
effectiveness in meeting the respective needs of the States, to say
nothing of the certainty and reliability of grant amounts into the
future.
As you consider our request to increase MSHA's budget for State
training grants, please keep in mind that the States play a
particularly critical role in providing special assistance to small
mine operators (those coal mine operators who employ 50 or fewer miners
or 20 or fewer miners in the metal/nonmetal area) and the Spanish-
speaking community in meeting their required training needs.
We also want to bring another matter to your attention because of
the implications it may have for mine safety and health programs, as
well as related programs under the Surface Mining Control and
Reclamation Act of 1977 (SMCRA). Recently, MSHA attempted to assert
jurisdiction over an abandoned mine land (AML) project site being
reclaimed by the Commonwealth of Pennsylvania as part of its approved
AML program under Title IV of SMCRA. Because the project involves the
incidental extraction of coal that will be removed from the site and
sold (with the proceeds being reinvested in the project), MSHA believes
this triggers its jurisdiction under the Mine Act. The project is being
undertaken pursuant to a duly promulgated rule by the Office of Surface
Mining (OSM) under SMCRA authorizing these types of ``AML enhancement
projects''. Since these types of projects began in 1999, MSHA has
seldom, if ever, exercised jurisdiction over them.
In an attempt to seek resolution regarding the appropriateness of
MSHA jurisdiction over this class of AML projects, the States, through
IMCC, met recently with both MSHA and OSM officials to discuss the
matter. We learned during the meeting that MSHA is not only seeking to
exercise jurisdiction over AML enhancement projects, but over any and
all AML projects that involve ``reclamation'', arguing that courts have
held that ``reclamation'' of extraction sites is covered under the Mine
Act Section 3(h) definition of ``mine'' because it restores lands, etc.
whose condition is caused by (``resulting from'') the work of
extraction.
Since the inception of SMCRA in 1977 and the States' implementation
of AML programs beginning in 1979, we are unaware of any circumstances
where MSHA has asserted jurisdiction over these types of projects
involving coal or noncoal reclamation except in those rare
circumstances where an AML contractor inadvertently requested an MSHA
ID number. Even in those very limited situations, MSHA has seldom
pursued inspection and enforcement once it realized an AML project was
underway. We are therefore at a loss for MSHA's newfound interest in
AML projects, which are already regulated by the States, with Federal
oversight by OSM, and which are generally subject to OSHA jurisdiction.
While we are still pursuing this matter with MSHA and OSM, the
consequences of a decision rendering these sites subject to MSHA
jurisdiction could have debilitating consequences for the AML program
under SMCRA and significant budgetary implications for MSHA. We
therefore urge the Subcommittee to include language in its report on
MSHA's budget prohibiting the agency from exercising jurisdiction over
AML projects under Title IV of SMCRA.
We appreciate the opportunity to submit our views on the MSHA
fiscal year 2016 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 Gregory E. Conrad, Executive
Director, Interstate Mining Compact Commission.]
______
Prepared Statement of the Interstitial Cystitis Association
summary of recommendations for fiscal year 2016
_______________________________________________________________________
--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 $7.8 billion for CDC
--Provide $32 billion for the National Institutes of Heatlh (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
_______________________________________________________________________
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 2016 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.
In December 2014, CDC switched the focus of the IC program from
education and awareness to an epidemiology study. The IC community is
concerned that eliminating 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 2016.
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, Web sites, 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 $32 billion for NIH in fiscal
year 2016. 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
expanded in its second phase to include cross-cutting researchers and
researchers 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).
Additionally, the NIH investigator-initiated research portfolio
continues to be an important mechanism for IC researchers to create new
avenues for interdisciplinary research.
Thank you for the opportunity to present the views of the
interstitial cystitis community.
[This statement was submitted by Lee Claassen, Executive Director,
Interstitial Cystitis Association.]
______
Prepared Statement of the Jamestown S'Klallam Tribe
On behalf of the Jamestown S'Klallam Tribe, I am pleased to submit
this written testimony on our funding priorities and requests for the
fiscal year 2016 Department of Labor (DOL), Department of Health and
Human Services (HHS) and Department of Education (DOE) budgets. Funding
for Indian country is appropriated in the non-defense discretionary
portion of the Federal budget. We, therefore, renew our request that
Congress work together to achieve a balanced approach to the budget
deficit that includes raising new revenue sources and that doesn't rely
solely on cuts to discretionary spending.
We strongly support the Administration's fiscal year 2016 Budget
Proposal as it reflects an improved commitment on behalf of the Federal
Government to uphold treaty and trust obligations with an investment in
Indian programs. These proposed increases are extremely important to
Tribes because we rely on this funding to support our core governmental
programs and critical services that promote the safety and well-being
of our Tribal citizens and Indian community. We also advocate for the
expansion of Self-Governance so that Tribes can continue to have the
flexibility to redesign programs and services throughout the Federal
Government to better address their community needs.
In addition to the items detailed below, our Tribe would like to
reiterate that we are a direct beneficiary of the collective and
continuing efforts of the National Congress of American Indians, the
National Indian Education Association, the Affiliated Tribes of
Northwest Indians, the Northwest Portland Area Indian Health Board, and
the Northwest Indian Fisheries Commission.
tribal specific budget priorities
Department of Labor, Department of Health and Human Services &
Department of Education
--Administration on Aging, Title VI--provide $30 million (HHS)
--Head Start--provide $9.6 billion (HHS)
--Title VII Indian Education--provide $198 million (DOE)
--Employment and Training Administration, Indian and Native American
Program (INAP)--provide $65 million (DOL)
national budget priorities
--Exempt Tribes from Sequestration and Rescissions and Restore 2013
Sequestration Cuts
Department of Health & Human Services
--Special Diabetes Program for Indians--provide $200 million a year
for 5 years
--Full Funding for Streamlined Implementation of the Patient
Protection and Affordable Care Act and the Indian Health Care
Improvement Act--provide Full Funding
--Restore Funding for Child Welfare Services (Social Security Act
Title IV-B, Subpart 1)--provide $280 million
--Substance Abuse and Mental Health Services Administration--American
Indian and Alaska Natives Suicide Prevention--restore funding
to $2.97 million
--Tribal Prevention Grants Program--provide $45 million over fiscal
year 2015 request
Department of Education
--Title I, Part A, Local Education Agency Grants provide $25 million
--Impact Aid Title VIII funding provide $2 billion
tribal specific budget request justification
Administration on Aging Older Americans Act--Title VI provide $30
million
The care of elders is a culturally inherent responsibility that
provides an important part of maintaining our cultural knowledge and
wisdom to strengthen our families and communities. The Administration
on Aging Older Americans Act funds a majority of Jamestown's Elder
Programs. We use these funds to provide nutrition, health education and
to reduce isolation through community and cultural activities which
directly impact the health and well-being of our Tribal elders.
Title VII Indian Education--provide $198 million
Over 160 American Indians and Alaska Native children have been
identified in the Sequim School District. Title VII Indian Education
funds allow our staff to provide a culturally sensitive voice to the
local school program which has resulted in increased proficiency scores
and an increase in the graduation rate of our American Indian and
Alaska Native students.
Employment and Training Administration, Indian and Native American
Program (INAP)--$65 million
The Western Washington Indian Employment and Training Program
(WWIETP) consist of a consortium of 25 Western Washington Tribes,
including Jamestown. WWIETP is fully funded by the Federal Workforce
Investment Act, which was enacted to provide training, education and
employment for adults, displaced workers and youth. WWIETP's directive
is to provide work experience and education assistance necessary for
self-sufficiency exclusively to qualifying American Indians and Alaska
Natives. The program allows us the opportunity to serve Tribal
Descendants and individuals with other Tribal affiliations residing in
our service area.
Head Start provide $9.6 Billion
Head start provides early educational services to over 24,000
Native children. Many of Jamestown's children partake in the Head Start
program. This program provides Federal dollars to support comprehensive
services (education, health and family services) that model traditional
Native learning and prepare our Tribal youth for Kindergarten by
improving conditions necessary for success in education. Quality early
childhood education plays a critical role in the health and educational
success of our Native students.
national budget requests
Exempt Tribes from Sequestration and Further Rescissions and Restore
2013 Sequestration Cuts (BIA and IHS)
Budgetary reductions undermine Indian Treaty Rights and Federal
obligations. The Federal trust obligation must be honored and vital
programs and services for Tribes must be sustained despite the budget
deficit. Sequestration and rescissions further exacerbates an already
precarious budgetary situation undermining the Tribes abilities to
maximize their underfunded operations and provide basic services to our
Tribal citizens. We urge Congress to exempt Tribes from any further
reductions imposed by the Budget Control Act and to restore funding
cuts due to the 2013 sequestration and rescissions.
Department of Health and Human Services
Special Diabetes Program for Indians--$200 million a year for 5 years
(Special Appropriations administered by IHS)
Recently extended until October 1, 2017 at the current rate of $150
million, Special Diabetes Program for Indians (SDPI) has been flat-line
since 2004. Continuing support of the SDPI will maintain critical
momentum in diabetes research and care to help bring diabetes-related
costs under control. The permanency of SDPI would be a great asset to
promoting stability for this important health program and for reversing
the trend of Type 2 diabetes in Indian Country. In addition it will
provide for staff retention, programmatic long-term planning which
increases and improves patient care, and more stable outside contracts
with vendors and suppliers. American Indian/Alaska Natives (AI/AN) are
two to four times as likely to develop diabetes compared to other
races. The SDPI program has proven effective in combatting diabetes and
enhancing care and education in AI/AN communities. As a result, the
program has successfully reduced costly health complications and the
incidence of the disease itself.
Full Funding for the ACA/IHCIA--Full Funding to implement twenty-five
unfunded provisions in the IHCIA
The Indian Health Care Improvement Act (IHCIA) permanently
authorizes healthcare to approximately two million American Indians/
Alaska Natives served by the Indian Health Service. The law was
intended to improve the healthcare conditions in Indian country;
however, there are more than twenty-five unfunded provisions in the
IHCIA. Implementation of the new authorities and the improvement of the
health status of Native health hinges upon the provision of full
funding.
Restore Funding for Child Welfare Services (Social Security Act Title
IV-B Subpart 1)--provide--provide $280 million
Tribal Child Welfare Program Funds are administered at the Tribal
community level with a culturally appropriate philosophy that results
in better outcomes for American Indian/Alaska Native families. The
Child Welfare Services Program allows for flexibility enabling Tribes
to provide culturally appropriate services to families along a
continuum and is utilized by Tribes to address in-home services,
support services for Native children in foster care, case management,
training and professional development. Tribes share in the State
allocation but the median Tribal grant is a little over $13,000 a year,
preventing many Tribes from participating in the program due to the
cost of implementation. An increase in program dollars is necessary to
ensure that all Tribes are able to address the child welfare needs
within their communities.
Substance Abuse and Mental Health Services Administration--American
Indian and Alaska Native Suicide Prevention--restore funding to
$2.97 million
The inability to deal with the root cause of mental health issues
has led to an increase in drug and alcohol abuse/misuse among American
Indian/Alaska Natives. Alcohol and drug use is at epidemic levels as
many individuals use it as a means to self-medicate and the impacts
extend beyond the individual to our Tribal families and community. The
Substance Abuse and Mental Health Services Administration program
provides funding to support technical assistance and training to Tribes
on how to leverage existing resources to implement prevention plans to
address bullying, violence and suicide in Tribal communities.
Tribal Prevention Grants Program--provide $45 million over fiscal year
2015 request
The inaugural funding for the program was in fiscal year 2014 for
$5 million which, startling as it may be, was the same level
appropriated for fiscal year 2015. Only 20 Tribes received $.02 million
annually for 5 years to help them develop the comprehensive plan. We
request $45 million over the 2015 enacted amount to expand these
activities throughout Tribal communities where behavioral health
problems have a powerful negative impact on our citizens and economy.
Department of Education
Title 1, Part A, Local Education Agency Grants--provide $25 million
Approximately 600,000 American Indian/Alaska Native youth attend
the public school system in the United States. Title I of the
Elementary and Secondary Education Act (ESEA) provides essential
financial assistance to schools with high levels of low-income families
to ensure that all children meet the required educational standards
established by the State. Inflation and sequestration have impacted the
ability of States to administer this critical program and a drastic
increase in funding is essential.
Impact Aid Title VIII Funding--provide $2 billion
Impact Aid provides essential funding to public schools serving
American Indian/Alaska Native students. The program provides payments
in lieu of taxes to public school districts for loss of property taxes
that support their educational programs. In order to ensure that Native
students have equal access to quality education, impact aid must be
funded.
Thank you on behalf of the Jamestown S'Klallam Tribe. I
respectfully request that these recommendations be included in the
fiscal year 2016 budget in order to honor the trust responsibility and
support Tribal prosperity and well-being.
[This statement was submitted by Honorable W. Ron Allen, Tribal
Chairman/CEO, Jamestown S'Klallam Tribe.]
______
Prepared Statement of Colonel Stanley A. Jendresak, Jr.
I am writing to urge the Subcommittee to include language in its
Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse. WHY!--because as morale, responsible
citizens, we need to continue to factor the needs and desires of
patients, their families, caregivers, and other stakeholders, into the
enforcement of the Americans with Disabilities Act. as well as the need
to provide proper settings for care. Several HHS agencies use some of
their Federal funding supporting forced deinstitutionalization causing
human harm which is cruel and an absurd use of Federal funding.
In particular, AIDD programs routinely ignore the DD Act, Olmstead
and Medicaid law by pursuing lawsuits and lobbying in support of the
elimination of specialized care settings, including ICFs/IID, other
specialized facilities, sheltered workshops, and day programs. The
recently released 300-page policy paper by NCD and related toolkit is
another Federal insult to those that cannot speak for themselves. The
new narrow Federal definition defined by CMS' for ``Home and Community-
Based Services'' makes me want to vomit.
Over the last 33 years I have had legal guardianship of a brother 7
years younger and have found that often decision makers have no idea of
the abilities/challenges that individuals who live in residential
settings require. I would like to attempt to put a face to one of these
severely challenged individuals who happens to be my brother.
I was able to place a 30-year old brother, Paul, into the Shapiro
Developmental Center in August 1985. This placement permitted me to
continue to have a Marine Reserve career for the next 16 years. Without
this placement, I would have had to retire after 15 years of service.
Please note that as a reservist, I worked a total of 11.5 years in
uniform over a 31-year period of time that required me to spend periods
of service in 21 foreign countries, the last 11 years serving in
positions requiring a Top Secret level clearance at the TK level. I
also held many other positions that benefited society in my local
community only because I had the freedom of time to devote to these
causes since my brother did not require my 24-hour supervision. Some of
these activities are listed at the end of this document.
The Shapiro Developmental Center has been a blessing in my
brother's life and I could easily write a dozen pages describing those
positive changes. The purpose of this example, however, is just to
highlight a few issues so that people with no personal experience have,
can more easily understand the needs of this population. Some
individuals could be totally uninformed regarding the services provided
by State developmental centers through no fault of their own.
Paul was born normal, crawling at 9 months, walking at 1 year,
talking around 18 months, but at 29 months he developed encephalitis,
measles, mumps and measles again, all within six weeks which prevented
brain growth. Paul has an IQ of 11 and lived with my parents for over
30 years. Parental love kept Paul living at the family residence
despite their lack of education and training. My parents had no
assistance in ``parenting'' a child with severe brain damage. They were
also petrified of how he would be cared for by an institution.
Fear of the unknown and a lack of social services created an
unhealthy, stagnant family environment, which seemed to worsen as Paul
grew in age. After my mother's death, my father regretfully admitted
that he could no longer care for Paul on his own. I, as Paul's
guardian, was fortunate to have my brother admitted to the Shapiro
Developmental Center after eleven other State and private facilities
rejected his admission.
During the last 2 years living in my parent's residence Paul, at
the height of 6'1'', grew to a weight of 347 lbs. One might conclude
that stress eating was his response to a lack of stimulation and
routine; regardless this weight gain was unhealthy and seemed
uncontrollable. Additionally, Paul did not seem to have an internal
clock and would sleep and wake at all hours of the day and/or night.
This would in turn require supervision; since he could not be trusted
to leave things or individuals alone. Paul sometimes used the restroom
and sometimes did not, requiring major cleanup jobs on a regular basis.
Paul normally was no trouble, but occasionally, without warning,
would have a violent tantrum. These outbursts involved physical
aggression and property destruction which included a door being torn
off the hinges, a chair being used to break a television screen and a
kitchen table being put through a window. As Paul grew older, there
were less and less visits for Paul outside of the home and fewer
visitors came to the house.
Within 7 months of admission to Shapiro, Paul was at his ideal body
weight and has been within 5 percent of this ideal for over 29 years.
More importantly Shapiro has been an environment in which Paul very
rarely has these violent aggressive outbursts but instead has a quality
of life whereby each week he spends some of his time meaningfully
putting string through beads to make necklaces and bracelets. Paul has
supervision that is programmed to be progressive to his optimal
potential. I can now take him anywhere without the fear of him hurting
himself or someone else. Shapiro has provided him safety, health,
opportunity for socialization and growth as a citizen. Shapiro has also
provided a sense of hope for my family; knowing that care for Paul is
being rendered in a professional and unfailing manner.
Although there are some challenged individuals that can move from
specialized care and work settings to smaller, ``community-based''
settings, Paul cannot. One would not have to be astute, clairvoyant or
intuitive to form that judgement. To think otherwise would be
ludicrous. This is another reason why, again, I am praying that the
language is improved to prohibit the use of HHS funding for forced
deinstitutionalization. Paul with an IQ of 11 cannot speak for his
needs; he has me to do that for him and other professionals.
While I read about all of the recent unexpected deaths (> 1,000) in
community settings, I know that my brother will live out his natural
life in a safe, caring, and productive environment. Tragedies are
widespread and predictable when fragile citizens are removed from
specialized care. In closing, the Labor, HHS, and Education and Related
Agencies appropriations bill must include language prohibiting the use
of HHS funding for forced deinstitutionalization which separates
individuals with I/DD from the specialized care and settings they
require without regard to individual choice and need, contrary to
Federal law and causing human harm.
I have supported the mission and philosophy of nonprofit
organizations like the Kankakee Association for Mentally Retarded
(KAMR), the Illinois Advocates (ILL-AD) and the Voice of the Retarded
(VOR) for decades. These special people have advocated for high quality
care and human rights for all people with Intellectual and
Developmental Disabilities for over 32 years. In particular, I admire
and respect the consistent written testimony of VOR, an organization
that quickly exhausts any list of superlatives.
Character is doing the right thing when no one is looking. At this
moment there are over 700,000 people looking to see if our elected
legislators will stop funding deinstitutionalization and support
choice. My prayers are that they do the right thing.
Respectfully Submitted,
Stanley A. Jendresak, Jr.
______
Prepared Statement of Johnson & Johnson
On behalf of Johnson & Johnson's approximately 127,000 global
employees, I am pleased to present this written testimony to the Senate
Appropriations Subcommittee on Labor, Health and Human Services,
Education and Related Agencies in support of the National Institutes of
Health (NIH) fiscal year 2016 budget. We recommend a fiscal year 2016
NIH budget of at least $32 billion. This level of funding is necessary
to ensure the agency's ability to fuel the innovation in medical
research that advances healthcare here in the United States and around
the world and to fortify America's position at the forefront of
research. The funding request also represents what is needed to remain
competitive in addressing the ongoing and emerging health challenges
confronting the United States and the world, and to encourage pursuit
of the unparalleled scientific opportunities to address these
challenges.
As a physician and researcher, I have dedicated much of my life to
translating basic scientific research into medical advances. In my
current role as head of R&D at Janssen Pharmaceutical Companies and as
a board member of Research!America, the Nation's largest not-for-profit
public education and advocacy alliance working to make research to
improve health a higher national priority, I am acutely aware of the
value of our country's investment in basic research. In our country,
the majority of basic research into the root causes of disease is
publicly funded by the NIH through research grants to more than 2,300
institutions across the U.S. It is this research that leads to drug
discovery. It underpins the life sciences economy and enables
healthcare companies to transform scientific discoveries of today into
the breakthrough healthcare products of tomorrow. Furthermore, the
basic 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 impact positively human
health through innovation. In 2014, $8.5 billion was invested in
research and development across our pharmaceutical, consumer and
medical devices companies. As part of our external R&D engine, we help
entrepreneurs and scientists realize their dreams of creating
healthcare solutions that improve lives. Internally, our team of
scientists works 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.
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.
The pace of medical research must keep up with the aging of our
population. Baby boomers who are now in their 60s and early 70s are
likely to spend years or even decades of their lives in declining or
poor health. 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
and heart disease threaten to overwhelm our healthcare system in just a
matter of years with enormous costs of care if we don't find ways to
prevent, treat--or even cure--them.
Today, we are at a crossroads in medical research. Computing and
other technologies are more powerful than ever before. 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
advancements, vast new datasets, and increasingly sophisticated areas
of scientific research.
There has never been a more critical and promising time to work in
medical research. The NIH is working on projects in areas like
precision medicine, gene therapy and vaccines to prevent infectious
diseases like the flu and HIV, as well as non-communicable diseases
like asthma and Alzheimer's. At Johnson & Johnson, our internal
incubator program identifies and nurtures highly innovative ideas
arising from our scientific community in areas of potentially
disruptive, cutting-edge research, which may lead to novel platforms,
products or technologies. These are advancements that the scientific
community could only imagine several years ago, yet they are becoming a
reality now. Sustainable, robust investment is needed to strengthen
this crucial research and to realize its healthcare benefits for
improving people's lives and reducing the burden and associated costs
of today's major diseases all over the world.
Enormous potential exists, yet, these technologies remain
underleveraged. In the U.S., the decrease in financial support for
federally-funded medical research organizations including the NIH has
persisted for more than a decade. In real terms, NIH has experienced a
23 percent decrease in inflation-adjusted funding since 2003,
undermining our ability to respond effectively to disease threats. NIH
is losing ground in its ability to collaborate to make societal
progress. The scientific advancements over the past two decades that
have engendered new ways to address infection, cancer, cardiovascular
disease and brain disorders will stall without adequate funding. It is
imperative that our government continue to value--and fund --that work,
and the innovators who want nothing more than to engage in it.
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 parents and children by advancing
science to match medical need, to our current and future generations of
scientists by stimulating the life sciences economy and to the
prosperity of our Nation as a worldwide leader in medical research.
Sustained investment in the NIH is critical to medical innovation. We
cannot afford to jeopardize innovation. There is simply too much at
stake.
[This statement was submitted by William N. Hait, MD, Ph.D., Global
Head, Research and Development, Janssen Pharmaceutical Companies of
Johnson & Johnson.]
______
Prepared Statement of Carlene Jones
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Douglas M. Jones
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Thomas and Margaret Kashatus
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Paul Keipert
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Joan Kelley
On behalf of those individuals most in need of our protection,
thank you for the opportunity to provide outside witness testimony to
the Sub-Committee on Labor, Health & Human Services, Education and
Related Agencies. I respectfully and urgently request the Subcommittee
to include language in its Labor, HHS, and Education and Related
Agencies bill, to expressly prohibit the use of appropriations for any
HHS program that supports activities attempting to downsize or close a
Medicaid-licensed Intermediate Care Facility serving Individuals with
Intellectual Disabilities (ICF/IID), unless the purpose of such action
is to remedy proven, systemic abuse.
ICF/IID facilities (``institutions''), currently care for a
majority of individuals with the most extreme, challenging behaviors,
and profound disabilities. Such facilities, caring for our most
vulnerable, operate under stricter Federal regulation than settings
provided in the community. Our Supreme Court Justices recognized in the
1999 Olmstead ruling, the need for diverse settings and care levels, to
honorably serve the full spectrum of the disability population.
Mounting tragedies resulting from forced facility closure are
routinely disregarded by a number of federally funded entities. These
entities include but are not limited to, AAIDD and its programs,
National Council on Disability (NCD), CMS, and state-based Protection
and Advocacy (P&A). Closure activities conducted by HHS funded entities
include advocacy, lobbying, and class action lawsuits, which often
result in putting defenseless individuals into harm's way. While AAIDD
and others paint a picture of ``Community for all'', the weakest
members of our society are often forced into ill-prepared community
settings, and in many cases, with little or no oversight. Such HHS
activities not only dishonor the Court's holding in Olmstead, they are
an absurd misuse of Federal funding.
The 1999 Supreme Court Olmstead ruling is often misconstrued as a
``mandate'' for community placement only, leading to civil rights
violations of this often, marginalized portion of the disability
community. Premature and preventable deaths are routinely overlooked,
and extensive abuse of those with no self-preservation skills is being
ignored.
In his request for a Federal probe in to this mounting, appalling
problem, your colleague, U.S. Senator Chris Murphy, described some of
these tragic outcomes in a letter to OIG Inspector Daniel Levinson. To
my knowledge, after 2 years, Senator Murphy has yet to receive a
response from the Health and Human Services Office of Inspector
General.
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), while authorizing funding for AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced facility closure. Additionally, the DD Act
clearly states that individuals and their families are the ``primary
decision-makers'' regarding services, supports and policies (42 U.S.C.
15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
Alarmingly, AAIDD programs routinely ignore the above provisions in
law, by pursuing lawsuits and lobbying to eliminate specialized care
settings. These settings include ICFs/IID, sheltered workshops, and day
programs, yet in a general, marginalizing tone, are such settings are
declared as ``segregated.''
Having raised a profoundly disabled grandson, my husband can
testify first hand, that segregation is certainly not the case. Our
grandson affected with profound autism, is now 24 years old. Yet due to
a number of community system failures, he was placed at the Kansas
Neurological Institute in 2008. Although KNI is a facility unfairly
denigrated by AAIDD and other entities as ``segregated'', our loved one
is not only well-cared for, he is provided more opportunities to
interact in the community than many defenseless individuals, living in
scattered, understaffed homes across the State. KNI retains dedicated
staff, providing adequate, professional oversight on a centralized
campus. This environment, necessary for the safety and care of those
with the most medically involved and behaviorally dangerous conditions,
is an environment not often secured, or easily secured, in the
community.
NCD.--The biased and harmful tool kit ``Deinstitutionalization:
Unfinished Business'' discriminately encourages the larger advocacy
community to engage in efforts to evict people with I/DD from their
homes. Such homes, caring for a majority of non-verbal, most
challenging individuals, operate within a proven model of centralized
care. The integrity of NCD is suspect, as they use Federal tax dollars
to falsely describe ``Willowbrook institutions'', when most facilities
have no such resemblance of institutions of decades long past.
CMS.--The new Community Settings Final Rule, while supporting
higher functioning individuals, is unfortunately, discriminatory in
nature for those with the most profound disabilities. It marginalizes
those who most need oversight and protection, violating the civil
rights of the weakest among us. The Rule ignores the unique needs for
supervision, safety, and other provisions clarified by Supreme Court
Justices in the Olmstead ruling.
P&A.--Disability Rights Center (DRC) is designated as the official
Protection and Advocacy System for Kansas. While DRC claims that it
``advocates for the rights of Kansans with disabilities under State or
Federal laws (ADA, the Rehabilitation Act, Federal Medicaid Act, Kansas
Act Against Discrimination, etc.)'', in actuality, DRC violates Federal
law and the Supreme Court Olmstead ruling by ignoring provisions within
the Court's holding: ``We emphasize that nothing in the ADA or its
implementing regulations condones termination of institutional settings
for persons unable to handle or benefit from community settings...Nor
is there any Federal requirement that community-based treatment be
imposed on patients who do not desire it.''
While claiming to address ``disability rights needs . . . . to
conduct abuse, neglect, and exploitation investigations, etc.'' DRC has
not addressed systemic gaps in our abuse and neglect reporting system.
In effect, DRC allows the continued harm to those they claim to
protect. Additionally, DRC's misleading claims made before State
legislators, regarding costs to serve our highest risk, highest need
individuals, discriminates against those unable to speak or defend
themselves.
When our most fragile citizens are removed from specialized care,
tragedies are predictable. It is most disturbing that legal, protected
rights of families and guardians, serving as primary decision-makers,
are routinely ignored by the above mentioned entities, while they
engage in unsound, facility closure policy-making.
The Labor, HHS, and Education and Related Agencies appropriations
bill must include language prohibiting the use of HHS funding for
forced deinstitutionalization. The current trend by HHS funded
agencies, in effect, not only disregards individual choice and need,
jeopardizing the safety of those most in need of protection, it is
contrary to Federal law.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony, and urge the Committee to take action, honoring requests
therein.
______
Prepared Statement of Dr. Karen Kelly
Good day, Committee Members: I am submitting this written testimony
urging the Subcommittee to include language in its Labor, HHS, and
Education and Related Agencies bill that expressly prohibits the use of
appropriations for any HHS program in support of activities which
attempt to downsize or close a Medicaid-licensed Intermediate Care
Facility for Individuals with Intellectual Disabilities (ICF/IID) or
any other Medicaid-licensed settings serving people with intellectual
disabilities, unless the purpose of the action is to remedy systemic
abuse. I will use my own son as an example of the need for ICF/IID
services on behalf of the Murray Parents Association, which represents
the guardians of severely disabled residents at Murray Center, a State
operated developmental center in Centralia, Illinois.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law, causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs. Such HHS
v. HHS deinstitutionalization activities are a cruel and absurd use of
Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
Members of the Murray Parents Association and others who are part
of the Murray Center Community are calling on the Subcommittee to
PROHIBIT HHS agencies from using appropriations to limit individual and
family/guardian choice. We argue that forced ``deinstitutionalization''
activities are contrary to Federal law and cause human harm. These
deinstitutionalization activities, including advocacy, lobbying, class
action lawsuits, and other tactics by some HHS-funded agencies that
result in the downsizing and closure of HHS-licensed ICF/IID homes,
some specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
I am both the mother of a severely autistic adult, Eric (age 41)
and an experienced registered nurse with expertise in behavioral
healthcare, healthcare administration, and autism. This effort to limit
choice regarding care of developmentally disabled individuals is short-
sighted and misguided, at best. The changes in the mental health system
that began in the 1960s resulted in the closure/reduction of State
psychiatric hospitals was supposed to provide support, treatment, and
housing ``in the community.'' Such services never evolved, leaving
community hospitals swimming in debt for episodic care of the
chronically mentally ill and cities trying to cope with the homeless,
chronically mentally ill. Now so-called advocates for the
developmentally disabled are using Federal funds to try to push
vulnerable, severely disabled people into inadequate, small group homes
that are understaffed with undertrained and underpaid nonprofessionals.
They seek the support of Congress and State legislatures to achieve
their misguided goals. Those who fail to learn from history are doomed
to repeat its mistakes. Wholesale elimination of ICF/IID services would
put thousands of severely disabled persons at risk in communities, not
unlike populations of homeless chronically mentally ill individuals in
nearly every city in the country.
My son Eric is severely impaired by autism and has lived at Murray
Center since June 1999. He lived in a community-based ICF/IID for 4
years, but it could not meet his needs because of the severity of his
disability. The State of Illinois recommended admission to Murray
Center because there were not appropriate services for my son in the
Metro East (an Illinois region just east of St. Louis, MO). There are
still not appropriate community opportunities for him in the area.
Eric stopped talking around 30 months of age. He can feed and
clothe himself, but needs help with basic hygiene: bathing, tooth-
brushing, and toileting. He cannot use a knife or tie his shoes. He is
6'5'' and weighs 250 pounds, a toddler in a linebacker's body. He
communicates with a limited vocabulary in signed speech and gestures.
His IQ measures around 38-40. He needs around the clock care to ensure
his well-being, including nursing care, which community group homes do
not provide.
Eric entered residential care a few months before his eighteenth
birthday in 1991. The search for residential care began shortly after
he turned 16. Applications went out to 80 agencies. Two responded: one
in Texas that was caught up in an abuse scandal and the Hope School in
Springfield, IL. Eric spent 4 years there; before he ``aged out'' of
Hope School about 30 applications were sent out. Only one agency near
our home indicated interest in him. This was his community-based ICF/
IID residence for 4 years, until his placement failed and he moved to
Murray Center because no other agency near the Metro-East would
consider my 6'5'' son.
Not long after he came to Murray Center, Eric had a bowel
obstruction. He could not tell anyone he was in pain, but he took the
hand of the nurse who gave him his morning medicines and put it on his
abdomen. The RN assessed Eric, notified his physician, and sent him to
the local hospital where he had surgery a few hour later once he was
stable. If an RN had not been present, as in small community group
homes, he would have suffered a rupture of the bowel with massive
infection (sepsis) that could have been fatal.
Eric can be loving to family and friends, but has the potential to
become easily frustrated with outbursts of aggression; this is
characteristic of autism and is called a ``meltdown.'' Unlike the
temper tantrums of young children, autistic meltdowns have no apparent
causative factor. Sometimes meltdowns can be thwarted through
behavioral interventions; sometimes there is no way to mitigate such
meltdowns, except to protect the autistic person from harm until the
meltdown runs its course.
Because of his size, Eric can easily injure another person,
especially with inadequate numbers of staff to supervise him. What will
a community home do if he becomes aggressive? Call the police? In
January 2012 a teen with autism was shot and killed by police in
Calumet City IL in his parents' home when police, who had been trained
to work with him, shot and killed him. National stories have reported
the use of Tasers on autistic persons in the community. In my
professional opinion as an experienced behavioral health nurse, moving
a low functioning autistic person into a minimally staffed group home
is akin placing toddlers in an understaffed day care center. Safety of
both the residents and the staff are threatened when low functioning
autistic persons are placed in programs that are inadequate to meet
their unique needs.
Eric's stepdad and I visit with Eric in Centralia about every 2
weeks, taking him out for lunch or dinner, shopping, and other social
experiences. Every 4 to 6 weeks, we bring him home to O'Fallon, about
an hour east of Murray Center, for a weekend visit where we try to
engage him in family activities in the St. Louis community. For Eric,
Murray Center is an appropriate and least-restrictive environment. He
has matured and become more social at Murray.
Eric regressed with each transfer to a new living setting. He
became more aggressive when he first moved to Hope School just before
his 18th birthday. He was aggressive and tried to elope from Clinton
Manor in New Baden for his first year there. He had many episodes of
aggression that resulted in Eric being placed in restraints during his
first couple of years at Murray Center. His aggressive behaviors have
become almost nonexistent over the last decade. If he regresses and
becomes aggressive when living in the community-based residence, what
will happen? Will a single staff person be able to handle his
outbursts? Will that staff person call the police for help? Will the
police treat him like a ``normal'' adult or will they treat him like a
toddler trapped in a large man's body?
What will happen to Eric if he is placed in a community-based
facility that cannot meet his needs and there is no Murray Center for
him? Would the State try to place in a facility far from his home,
making it impossible for his family to see him every two weeks as we
now do? What if the lack of a 24/7 presence of nurses results in
another life-threatening health problem?
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. Along with the
members of the Murray Parents Association and the Murray community, I
support VOR's testimony.
Respectfully.
[This statement was submitted by Dr. Karen Kelly and the Murray
Parents Association.]
______
Prepared Statement of Megan Kennedy
My name is Megan Kennedy and I'm from the State of Missouri. As
Founder of The Megan Foundation, and Board Member of the Usher Syndrome
Coalition, I write on behalf of the Usher syndrome community to
respectfully request this committee prioritize research into the causes
of Usher syndrome and into treatment options at the National Institutes
of Health (NIH). As you prepare the fiscal year 2016 Labor, Health and
Human Services, Education bill, we respectfully request that you
include the following report language:
The Committee commends NIH for including Usher syndrome on the
Estimates of Funding for Various Research, Condition, and
Disease Categories (RCDC) list in order to track the annual
support level of this rare disease. The Committee urges NIH to
prioritize Usher syndrome research at the National Institute on
Deafness and Other Communication Disorders (NIDCD) and the
National Eye Institute (NEI) and develop a multidisciplinary
research strategy among multiple NIH institutes, including the
National Center for Advancing Translational Sciences (NCATS),
the National Human Genome Research Institute (NHGRI), and the
National Institute of Mental Health (NIMH). Because Usher
syndrome is a rare genetic condition, the Committee urges NCATS
to support fundamental basic science research on Usher syndrome
and NHGRI to support research on the underlying genetic causes
of Usher syndrome. Since children and adults with Usher
syndrome are at risk for the development of mental and
behavioral disorders, the Committee urges NIMH to support
research to elucidate genomic risk factors that underlie mental
disorders. The Committee urges additional focus from NIDCD,
given Usher syndrome's involvement with vestibular dysfunction.
The Committee requests an update in the fiscal year 2017 CJ on
the planned and on-going activities related to this syndrome,
including the manner in which various ICs coordinate on common
goals and objectives.
Usher syndrome is the most common cause of combined deafness and
blindness. In the United States, it is estimated that nearly 50,000
people have this rare genetic disorder. I am one of these people. Born
with a hearing impairment of approximately 80 percent, it wasn't until
I was 22 years old that I learned I had Usher syndrome Type 2a, and
that I was already considered legally blind. Today, at age 30, I have a
field of vision of only 10 degrees.
Hearing aids are incredible tools that I have used since I was 3
years old, but they cannot perfectly mimic normal hearing. Biology has
developed a sophisticated system of hearing between the cochlea and the
brain. The cochlea, a sound-transmitting device within our ears, works
so seamlessly with our brains in interpreting signals that it can
actually distinguish which sounds to focus on, and which sounds to
ignore as background noise. This system has the ability to hone in on a
conversation with a friend in a loud restaurant, for example, while
minimizing the distracting noises of clattering plates and nearby
conversations. Think of it as auto-adjusting. Hearing aids, while
having come a long way, do not have the capability to separate
foreground noise from background noise as naturally as this biological
system, making the brain work much harder to distinguish between the
two.
I have never experienced the luxury of normal hearing. The machines
in my ears interrupt the seamless flow of hearing between the cochlea
and brain by delaying the transmission of vibrations to be interpreted.
All of my life, being a fluid part of conversations has been a
laborious task. Not only do I have to manually distinguish between
foreground and background noises, I also have to give my undivided
attention to the direction a conversation is heading, as my brain
catches up to interpret the delayed signals from my hearing aids. I
cannot count the number of times I've received confused looks from
others after saying something that was a topic of discussion five
minutes earlier, or was never even a topic of discussion at all.
By the end of the day, I'm weary with fatigue as I take out my
hearing aids to rest from my chaotic world of noises.
Normal vision is about 180 degrees in a peripheral field of vision.
With only 10 degrees of vision, I see about 5 percent of what the rest
of the world sees. When I open my eyes in the morning to look at my
husband, I only see a small portion of his handsome face. I scan his
facial features in sections: his eyes, his forehead, his mouth, his
chin. Then I put together the pieces to make a picture of what he looks
like at that moment. Sometimes it takes a minute before I realize his
eyes are open, looking back at me, and he's greeting me with his
beautiful smile.
I'm lucky that I'm still able to see the people and things I love,
but soon even that will be gone. In the meantime, it is the constant
scanning and putting together the pieces that make seeing an exhausting
task to perform every day. Imagine a life where seeing is a draining
action, rather than a liberating one. So many tasks in our daily lives
become effortless with vision, such as reading the numbers on a
measuring cup, walking up and down stairs, finding an app on the
iPhone, or determining whether it's safe to cross the street. When
vision is compromised, everything in life becomes compromised.
My vision loss is now to the point where my career has been
compromised, and pursuing a life-long dream in architecture is no
longer feasible.
I deserve to have a long and satisfying career, and I deserve to
enjoy the simple pleasures of life without an exorbitant amount of
effort to do so. I've worked harder than most people I know to be
successful in the things I set out to achieve. I aspire to be an active
part of this society, because the society we live in is full of
opportunities to create the life we choose to live. Usher syndrome,
however, doesn't allow me to create the life I choose to live.
People with Usher syndrome share the same range of intelligence and
work ethic as any other slice of America. Yet they suffer from an 82
percent unemployment rate. People with Usher syndrome are born with the
same emotional strength as any other American. Yet they have a suicide
rate that is 2 = times greater than the general population. People with
Usher syndrome not only have the capacity to contribute to America's
future, they thirst for it. They want to be active members of society.
Yet our country spends an estimated $139 billion annually in direct and
indirect costs for people with eye disorders and vision loss. That
doesn't even include the costs associated with hearing impairment.
In my role on the Usher Syndrome Coalition's Board of Directors and
as founder of The Megan Foundation, a Coalition member organization, I
have spoken with and have met hundreds of people who are determined,
focused, and working everyday to help themselves, their loved one, or
in some cases complete strangers, figure out how to treat this
syndrome. Usher genes are complex, long protein cells, which require
significant investment in research if we are ever to find a cure or
treatment. We can't do it alone.
Through the Usher Syndrome Coalition, we have brought the Usher
community and researchers together by:
--Establishing an international registry of individuals with Usher
syndrome, which is available for research or clinical trials at
no cost. Our registry currently has individuals from each of
the 50 States and 44 countries.
--Sponsoring an International Symposium on Usher Syndrome at Harvard
Medical School in July 2014 to develop a roadmap for future
research projects to bring us closer to viable clinical
treatments.
--Sponsoring annual family conferences, webinars and monthly
conferences that provide information and support to all of
those living with Usher syndrome.
With this in place, we are bridging the gap between families in
need and researchers who are working on developing treatments every
day. Researchers like those in Oregon and Pennsylvania who are working
on gene therapy treatments, one of which began clinical trials in 2013.
Researchers in Louisiana, who have been able to rescue the hearing in
mice with Usher syndrome using a drug therapy that holds promise for
rescuing vision as well. Researchers in Iowa, California, Nebraska,
Massachusetts, Florida, Texas, and many other States, who are
collaborating with each other and with families through the Coalition
to advance all kinds of Usher syndrome research.
But still this is not enough. We cannot help any of the tens of
thousands who have Usher, or countless others that will be born in the
future with this devastating genetic disorder without Federal support.
There are dozens of different mutations that cause Usher syndrome, and
the pace of research is slowed dramatically by the lack of researchers
and funding. The infrastructure is there to find treatments, but the
significant financial support is not. We are asking you to supply this
last critical resource to help us find a cure.
Until very recently, there was no way of knowing how much money the
National Institutes of Health (NIH) invested in Usher syndrome
research. Through the efforts of the Usher Syndrome Coalition, this
rare disease has been added as a new category in the NIH Categorical
Spending list, the Estimates of Funding for Various Research,
Condition, and Disease Categories (RCDC). Through the RCDC system, we
now have visibility into the total dollars spent on Usher syndrome, as
well as the specific grants that were funded. Usher syndrome research
still needs a lot more investment, but this is a great start.
We do not ask that the committee throw dollars at the problem. Only
that they ensure the appropriate funding is available. The researchers
are there, waiting to discover what now is just a dream. All we are
asking for is a chance; a chance for deaf children and adults who are
going blind, a chance to see. With your help, those with Usher
syndrome, including myself, can once again dare to dream.
[This statement was submitted by Megan Kennedy, Founder of The
Megan Foundation, and Board Member of the Usher Syndrome Coalition.]
______
Prepared Statement of Ralph M. Kennedy
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Thomas W. Kidd
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Monica Kovacs
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Terry Lafleur
My wife and I are parents of our 36 year daughter living in a
public facility, Pinecrest Supports & Services Center in Pineville, La.
We tried a community home where there way of dealing with her behavior
was with psychotropic drugs. She aspirated and spent 2 weeks in Rapides
General Hospital ICU. After she was released from the hospital, the
owners of the community home called to let us know we could not bring
her back there because of their liability. After a few months home
Pinecrest called to let us know they could help. Since she moved there
in 2000 she was taken off drugs and her behavior has greatly improved,
she is doing very good at Pinecrest. Without this wonderful facility we
feel our daughter would not have survived in any other community home.
Not everyone can function in a community, all we and any parent want is
the best choice for our children.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Caroline A. Lahrmann
I am writing to urge the Subcommittee to include language in its
Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs. Let me
give you a taste of the fear and destruction this ``advocacy'' work has
caused in Ohio in the past 6 month:
Ohio families and guardians of loved ones with intellectual and
developmental disabilities are outraged by the actions of Ohio's
protection and advocacy agency, Disability Rights Ohio (DRO). DRO has
threatened to sue the State over its ICF/IID program and its facility-
based day services and workshops. Additionally CMS has implemented rule
changes which harm these programs and leave their future in question.
Parents, guardians and family members have passionately urged
government officials to not fall prey to DRO's fear-mongering. Elderly
parents who know they do not have many years left have made tearful
pleas to officials asking, ``Who will care for my child if you close
their ICF home?'' Siblings have asked, ``What will happen to my
brother? My mother cannot care for him anymore. Do I have to give up my
dreams too?'' There have been sleepless nights, hand- wringing and days
spent calling and meeting with government officials. Regular life has
been put on hold for the Developmental Disabilities community in Ohio
until some sanity is restored where the people drive the services and
supports--not a ``protection and advocacy'' agency no one trusts.
As a parent with twins who are intellectually and developmentally
disabled, these de- institutionalization activities are a direct threat
to the health, safety and welfare of my children. My children rely on
an ICF/IID home for life-sustaining nursing and behavioral support as
well as daily integration into our community through an abundance of
community-centered programs provided by their ICF home.
According to Olmstead and the ADA, DRO has no grounds on which to
threaten the existence of the ICF program in Ohio and it is absurd for
a federally funded agency to use its funding and what appears to be
limitless power to strike fear in the hearts of intellectually and
developmentally disabled citizens and their loving parents and
guardians.
Parents of children who attend facility-based day services and
workshops are equally concerned over DRO's actions. And CMS rule
changes will deny funding to these much-loved programs.
DRO's threats of litigation have been the catalyst for Ohio's
Governor to put forth budget proposals that will fulfill DRO's
objectives by eliminating beds and forcing the closures of many ICF/IID
homes and closing facility-based day services and workshops. Ohio
families have fought back strongly against the Kasich administration's
proposals which we perceive to be a direct attack on our loved ones.
Families organized a petition campaign which attracted nearly 19,000
signatures in just 5 weeks. And we testified strongly to our State
Assembly making sure legislators know, ``DRO DOES NOT SPEAK FOR US.''
DRO has used Olmstead and the ADA as a weapon against the Ohio
citizens it was entrusted to serve. But, individuals with intellectual
and developmental disabilities should not fear this law. This law was
not put in place to harm our disabled citizens. Olmstead and the ADA
expand opportunities and preserve choices for individuals with
disabilities. This law DOES NOT drive people from so-called
``institutional'' settings. The U.S. Supreme Court stated,
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
I urge the Senate Appropriations Subcommittee on Labor, Health and
Humans Services and Education and Related Agencies to live up to the
true meaning of Olmstead and the ADA and refuse to fund programs such
as Ohio's protection and advocacy agency that work in direct opposition
to the best interests, health and welfare of our most fragile citizens.
Please do not send anymore federally-funded attack dogs to Ohio.
______
Prepared Statement of the Latino Commission on AIDS
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Latino Commission on AIDS is part of a nationwide coalition, the
Food is Medicine Coalition, of over 80 food and nutrition services
providers, affiliates and their supporters across the country that
provide food and nutrition services to people living with HIV/AIDS
(PLWHA) and other chronic illnesses. In our service area we provide
national capacity building and technical assistance to HIV service
providers and other health and human service providers throughout the
U.S., Puerto Rico and U.S. Virgin Islands. Collectively, the Food is
Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by state in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Guillermo Chacon, President, and
Luis Scaccabarrozzi, MPH, Director of Health Policy & Advocacy, Latino
Commission on AIDS.]
______
Prepared Statement of Lifelong
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Lifelong is part of a nationwide coalition, the Food is Medicine
Coalition, of over 80 food and nutrition services providers, affiliates
and their supporters across the country that provide food and nutrition
services to people living with HIV/AIDS (PLWHA) and other chronic
illnesses. Chicken Soup Brigade, Lifelong's Food & Nutrition provides
over 50,000 prepared meals and 15,000 bags of groceries to PLWHA in
Western Washington State annually. Collectively, the Food is Medicine
Coalition is committed to increasing awareness of the essential role
that food and nutrition services (FNS) play in successfully treating
HIV/AIDS and to expanding access to this indispensable intervention for
people living with other severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by state in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Paul Getzel, Director, Chicken
Soup Brigade--Lifelong's Food & Nutrition Program.]
______
Prepared Statement of Sandra J. Maistros
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs,NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCDreleased a 300-page policy paper and related tool kit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mama's Kitchen
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Mama's Kitchen is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In our service area, we provide over 350,000
medically tailored, home delivered meals annually. Collectively, the
Food is Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Alberto Cortes, Executive
Director, Mama's Kitchen.]
______
Prepared Statement of MANNA
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
MANNA (Metropolitan Area Neighborhood Nutrition Alliance) is the
only organization in the greater Philadelphia that provides medically
appropriate meals for people battling serious illnesses, and the only
organization of its kind in the country that offers 21 meals a week--3
meals a day, 7 days a week--to all clients. In our service area, we
provide 750,000 medically tailored, home delivered meals annually.
Founded in 1990 to serve people living with HIV/AIDS, nearly 15,000
people have benefited from the 11 million meals that MANNA has
delivered over our 25 year history.
MANNA is part of a nationwide coalition, the Food is Medicine
Coalition, of over 80 food and nutrition services providers, affiliates
and their supporters across the country that provide food and nutrition
services to people living with HIV/AIDS (PLWHA) and other chronic
illnesses. Collectively, the Food is Medicine Coalition is committed to
increasing awareness of the essential role that food and nutrition
services (FNS) play in successfully treating HIV/AIDS and to expanding
access to this indispensable intervention for people living with other
severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections\2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. MANNA spearheaded a groundbreaking study
comparing participants in our comprehensive medically-tailored FNS
program vs. a control group within a local managed care organization.
This study found that average monthly healthcare costs for PLWHA fell
80 percent (more than $30,000) for first 3 months after receiving
FNS.\7\ If hospitalized, FNS clients' costs were 30 percent lower,
their hospital length of stay was cut by 37 percent and they were 20
percent more likely to be able to be discharged to their homes rather
than a more expensive institution.\8\ Furthermore, FNS are a very
inexpensive intervention. For each day in a hospital saved, you can
feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
MANNA clients overwhelmingly report that our services help them live
more independently, eat more nutritiously and manage their medical
treatment more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, is vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Sue Daugherty, RD, LDN, Chief
Executive Officer, Metropolitan Area Neighborhood Nutrition Alliance.]
______
Prepared Statement of MEadvocacy.org
Dear Ladies and Gentlemen of the Committee: The Department of
Health and Human Services is the U.S. Government's principal agency for
protecting the health of all Americans and providing essential human
services, especially for those who are least able to help themselves.
Yet, in the past three decades, HHS, NIH and CDC have neglected and
mistreated over a million severely disabled patients suffering from the
disabling chronic disease myalgic encephalomyelitis (ME).
Thirty years of malfeasance, misfeasance, neglect, and incompetence
by HHS has rendered ME patients frustrated and disgruntled. They remain
invisible, misunderstood and extremely sick. Advances in the science of
the disease have been mostly squashed by the gross lack of funding by
NIH for this severely disabling disease. In addition, misinformation
and badly outdated information published by the CDC, along with the
lack of education about the disease in medical schools, have caused a
dearth of palliative care for patients nationwide. Most importantly,
after 30 years, we still are not any closer to finding a possible
treatment or cure to help the millions of ME patients.
MEadvocacy.org is a growing grassroots movement of advocates and
patients who are rising up and saying we have had enough of empty
promises and lies. We want the right to life, liberty, and the pursuit
of happiness that is afforded to us by the Declaration of Independence.
We want the same chance at life and health as patients who suffer from
other similarly burdened diseases. We are lawyers, laborers, teachers,
students, fathers, mothers, and children. Our productive lives have
been cut short by this debilitating disease and we have no hope of
treatment or cure. We have had enough and are saying, ``No More!''
ME Incidence and Prevalence
Myalgic encephalomyelitis, also known in the U.S. as chronic
fatigue syndrome (CFS) and myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS), is a seriously disabling neuro-immune disease. It
sickens an estimated 850,000 to 2.5 million in the U.S. and 17 million
worldwide. A majority of patients are disabled, unable to work, attend
school or participate in activities of daily life. A quarter are so
severely affected as to render them bedbound, unable to care for
themselves.
ME History, Criteria and Name
ME has a long history, appearing worldwide in epidemic and endemic
forms. A 1955 outbreak in London resulted in Dr. A. Melvin Ramsay (1)
describing it as an infectious neuromuscular illness and coining the
term ``myalgic encephalomyelitis.'' Disregarding this, the CDC broadly
redefined the disease and renamed it chronic fatigue syndrome (CFS) in
response to 1985 cluster outbreaks of the disease in Incline Village,
Nevada and Lyndonville, New York. This redefinition resulted in three
decades of confused research findings rather than answers to the cause
and treatment of this disease. In addition, the undignified name and
poor criteria caused stigmatization and marginalization of patients.
HHS had been aware of these problems for years, yet stubbornly
refused to act. It disregarded almost all advice from its own Chronic
Fatigue Syndrome Advisory Committee (CFSAC)(2). It ignored specific
requests by CFSAC, medical experts, patient advocates, patients and
their families to adopt ME expert-authored, well-defined criteria for
the disease. In direct opposition, HHS announced on September 23, 2013
a secretly negotiated contract with the Institute of Medicine (IOM) to
redefine and re-brand this disease despite Dr. Nancy Lee, Director of
the Office of Women's Health, stating earlier that year that Secretary
Sebelius had specifically told her that the government was ``not in the
business of setting criteria for diseases.'' HHS disregarded the fact
that historically it is the expert medical community, not the
government, who delineate criteria for diseases. Case definitions are a
clinical decision that should come from the clinical community.
The IOM report was published on February 10, 2015, and outlined new
criteria that are again overly broad and unrestricted. They omit
exclusionary criteria and even differential diagnostic suggestions to
guide clinicians in making accurate diagnoses. Some experts believe the
new definition will capture people with major depression, autoimmune
diseases and cardiopulmonary disease. At the clinical level, the result
will be tragic for patients who receive inappropriate advice and, as
our history has already proven, it will be disastrous for the clarity
of findings if this overly inclusive criteria is used for research. The
new recommended name, ``Systemic Exertion Intolerance Disease (SEID)'',
repeats the same error that the CDC made 30 years ago, which was
attempting to describe the disease by one of its many symptoms.
Disease Burden and Funding
Some ME patients have died prematurely from complications of ME.
Others have died at their own hands due to the severity and length of
their suffering without proper palliative care, as well as dismissal
and stigmatization by the medical community. If we do not act on behalf
of these severely affected patients, we are complicit in their
suffering and untimely deaths. The patients will not carry this burden
quietly any longer and we are looking at Congress to require HHS to
properly fulfill their duty to ME sufferers.
In 2009, Dr. Nancy Klimas, the director of AIDS research at the
Miami Veterans Affairs Medical Center stated:
My H.I.V patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of
dollars invested. Many of my CFS patients, on the other hand,
are terribly ill and unable to work or participate in the care
of their families. I split my clinical time between the two
illnesses, and I can tell you if I had to choose between the
two illnesses, (in 2009) I would rather have HIV. But CFS,
which impacts a million people in the United States alone, has
had a small fraction of the research dollars directed towards
it. (http://consults.blogs.nytimes.com/2009/10/15)
In the intervening 6 years, nothing has changed. It is very clear
that real change at HHS regarding this disease will not come about
naturally. We have come to you, the Appropriation Committee, for help
in addressing this dire need for oversight and investigation.
It is estimated that the burden to the economy for ME is between
$17 to 24 billion, yet NIH funding for research has stagnated at a mere
$5 million a year, less than funding for hay fever. HHS has placed
funding for ME at the rock bottom of their funding budget list(3). The
yearly allocation for ME/CFS is a fraction of what other similarly
burdened diseases receive.
------------------------------------------------------------------------
U.S.
HHS/NIH funding data for 2014 patient Funding per
population patient ($)
------------------------------------------------------------------------
HIV/AIDS--$2 billion 978 million.............. 1,200,000 2,481
M.S.--$102 million............................ 400,000 255
Parkinson's--$139 million..................... 1,000,000 139
Alzheimer's $564 million...................... 5,300,000 106
ME/CFS--$5 million............................ 1,000,000 5
------------------------------------------------------------------------
The great divide between NIH funding for ME and other diseases
cannot be explained away. Simply advising and recommending that NIH
increase funding for ME, has not worked. The Secretaries of Health and
Human Services have not responded to most of the 77 recommendations
made by the Chronic Fatigue Syndrome Advisory Committee during the past
10 years. The department did not heed the call by President Obama as a
result of a call out at a townhall meeting by the wife of a patient. It
has not listened to the many recommendations by this Appropriation
Committee over the past 20 years. In order to fund ME on par with MS, a
similarly serious disease, ME would need $250 million a year. Perhaps a
sliding scale of allocation from other diseases related to immune,
cognitive and nervous system dysfunctions could be utilized by this
committee to find the additional funding needed for ME.
We cannot continue with the same path and expect a different
result; that would be insanity. We need a different approach and a
complete overhaul at all agency levels. We need an investigation by
Congress into the mishandling and neglect of Myalgic Encephalomyelitis
by HHS, NIH and CDC and active, ongoing Congressional oversight until
HHS' negative bias is rectified.
The following are the recommendations and goals that we at
MEadvocacy.org feel the Appropriations Committee needs to require that
HHS meet, in order to bring Myalgic Encephalomyelitis back on par with
other similarly burdened diseases:
--Fund biomedical research for ME commensurate with its severity and
burden to patients and the economy. We are asking for specific
funding in the amount of $250 million, the amount we believe is
needed to bring ME on par with other similarly burdened
diseases. HHS should clearly allocate funds to study patients
from past ME cluster outbreaks as well as the study of the
epidemiology of patients with severe ME. The additional funding
needed for ME might be accomplished by means of a sliding scale
of allocation from other diseases related to immune, cognitive
and nervous system dysfunctions.
--Heed the ME stakeholders' request to adopt the diagnostic and
research criteria authored by those experienced in the disease,
namely the 2003 Canadian Consensus Criteria (CCC)(4), which has
been adopted by the International Association of Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)(5). In a
letter to the Secretary of HHS, 50 experts(6) in the disease
declared their consensus agreement to adopt the CCC. This was
endorsed by a letter signed by 171 advocates(7) as well as a
petition(8) signed by over 6,000 patients. The 2011 revision
known as the International Consensus Criteria (ICC) would be an
alternatively acceptable criteria for adoption.
--Retain the historical name for this disease, myalgic
encephalomyelitis, which has been coded since 1969 by the World
Health Organization under neurological disease with the code
G93.3. In addition, ME will appear in the 2015 U.S. ICD Codes
as U.S. ICD-10-CM with the same coding.
Additionally, we request that the Appropriation Committee
recommends HHS:
--Return ME to the National Institute of Allergy and Infectious
Disease (NIAID) or place it in the National Institute of
Neurological Disorders and Stroke (NINDS), which also manages
similar neuroimmune diseases such as MS, fibromyalgia, and Lyme
Disease. The Office of Research on Women's Health, where ME is
currently housed, is entirely inappropriate for disease, which
also strikes men and children.
--Provide opportunities for dissemination of information through the
development of a curriculum for all U.S.- based medical
schools, as well as physician continuing education, about ME as
defined solely by disease experts, in order to provide the
tools needed for physicians and other medical professionals to
appropriately recognize and treat this disease. Currently, this
would mean using either the 2003 Canadian Consensus Criteria or
the 2011 International Consensus Criteria, not the overly broad
criteria developed by the non-expert IOM panel. In addition,
the CCC (9) or ICC Primer(10) should be widely distributed and
made available to clinicians, particularly primary care
physicians, nationwide in order to facilitate the best care for
their ME patients.
--Partner openly and transparently with stakeholders within 1 year to
establish a comprehensive, aggressive and fully-funded cross-
agency strategy and implementation plan, with well-defined
objectives and milestones, and to develop a plan to monitor
progress and provide for Congressional oversight.
``We've documented, as have others, that the level of functional
impairment in people who suffer from CFS is comparable to multiple
sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary
disease. The disability is equivalent to that of some well-known, very
severe medical conditions.''--Dr. William Reeves, former CDC Chief of
Viral Diseases Branch (2006 CDC Press Conference)
Links:
(1)--Http://mecfsforums.com/wiki/Articles_by_Dr.--A.--
Melvin_Ramsay.
(2)--Http://www.hhs.gov/advcomcfs/.
(3)--Http://report.nih.gov/categorical_spending.aspx.
(4)--Http://www.name-us.org/DefintionsPages/DefinitionsArticles/
ConsensusDocument%20Overview.pdf.
(5)--Http://www.iacfsme.org/OrganizationInformation/tabid/124/
Default.aspx.
(6)--Https://dl.dropboxusercontent.com/u/89158245/
Case%20Definition%20Letter%20Sept%2023%202013.pdf.
(7)--Https://thoughtsaboutme.files.wordpress.com/2013/10/
sebelius_letter_advocates2.pd.
(8)--Https://secure.avaaz.org/en/petition/
Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?pv=4.
(9)--Http://www.name-us.org/DefintionsPages/DefinitionsArticles/
ConsensusDocument%20Overview.pdf.
(10)--Http://www.name-us.org/DefintionsPages/DefinitionsArticles/
2012_ICC%20primer.pdf.
(11)--Http://www.meadvocacy.org/.
______
Prepared Statement of Meals on Wheels America
Chairman Blunt and Ranking Member Murray: Thank you for the
opportunity to present testimony to your Subcommittee concerning fiscal
year 2016 appropriations for Older Americans Act Nutrition Programs
administered by the Administration for Community Living/Administration
on Aging within the U.S. Department of Health and Human Services. We
are grateful for your past and continued support for these vital
programs and urge you to adopt the funding levels provided in the
President's fiscal year 2016 Budget Request to Congress. For the three
Older Americans Act (OAA) Nutrition Programs authorized under Title III
of the Act, that request is as follows:
--Congregate Nutrition Services (Title III, C-1)--$458 million
--Home-Delivered Nutrition Services (Title III, C-2)--$236 million
--Nutrition Services Incentive Program (Title III, NSIP)--$160
million
In addition, Meals on Wheels America supports the Administration's
request for $20 million for Nutrition Innovation Demonstrations. If
enacted, this funding would support evidence-based innovations and an
opportunity to develop a perfected and scalable nutrition services
model to optimize healthcare savings and quality of life for the
seniors served.
At this critical juncture in our Nation's history, when both the
need and demand are already substantial and will continue to climb
exponentially, we implore you to give this request your utmost
consideration due to the significant social and economic benefits that
OAA Nutrition Programs offer. The nutritious meals, friendly visits,
and safety and wellness checks these programs deliver each day are
providing an efficient, effective and critical support service for our
most vulnerable seniors, our families, our communities, and taxpayers
as a whole. OAA Nutrition Programs (both congregate and home-delivered)
enable seniors to live more nourished and independent lives longer in
their own homes, reducing unnecessary visits to the emergency room and
premature hospitalization and institutionalization. They are not only
providing more than a meal to those who are fortunate to receive their
services, but they are also an essential part of the solution to our
Nation's fiscal and demographic challenges.
serving the most vulnerable
For nearly 50 years in communities large and small, urban and
rural, OAA Nutrition Programs have been successfully serving our
country's most vulnerable, frail and isolated seniors. What started as
a demonstration project has grown into a highly effective community-
based, nationwide network of more than 5,000 local programs. While not
all Meals on Wheels programs (whether congregate or home-delivered)
receive OAA funds, the majority rely, in part, on the Federal dollars
authorized under Title III of the Act as a foundation on which to
leverage additional funding. This enables a very effective public-
private partnership model which helps raise additional State and
community-based resources to be directed toward seniors 60 years of age
and older who are at significant risk of hunger and losing their
ability to remain independent and live at home.
Data from the most recent Administration on Aging's State Program
Reports (2012) and National Survey of OAA Participants (2013)
demonstrates that the seniors receiving meals at home and in congregate
settings, such as senior centers, need these services to remain
healthier and independent. They are primarily women who are 75 and
older and living alone. Additionally, these seniors have multiple
chronic conditions, take six or more medications daily, are
functionally impaired, and the single meal provided by the OAA
Nutrition Program represents half or more of their total food intake in
a day. Significant numbers live in rural areas, are living in poverty
and belong to a minority group. In short, the individuals being served
are high risk, potentially high cost to Medicare and Medicaid, and are
in need of nutrition assistance.
Furthermore, findings from a just-released research study that
Meals on Wheels America commissioned Brown University's Center for
Gerontology and Healthcare Research to conduct found that those
receiving and/or requesting Meals on Wheels services are significantly
more vulnerable compared to a nationally representative sample of aging
Americans.\1\ Specifically, seniors on Meals on Wheels waiting lists
were significantly more likely to:
---------------------------------------------------------------------------
\1\ National Health and Aging Trends Study (NHATS), 2014.
---------------------------------------------------------------------------
--Report poorer self-rated health (71 percent vs. 26 percent)
--Screen positive for depression (28 percent vs. 14 percent) and
anxiety (31 percent vs. 16 percent)
--Report recent falls (27 percent vs. 10 percent) and fear of falling
that limited their ability to stay active (79 percent vs 42
percent)
--Require assistance with shopping for groceries (87 percent vs. 23
percent) and preparing food (69 percent vs. 20 percent)
--Have health and/or safety hazards both inside and outside the home
(i.e., higher rates of tripping hazards, 24 percent vs. 10
percent, and home construction hazards, 13 percent vs. 7
percent)
defining the magnitude of the problem
Despite the Meals on Wheels network's successes in effectively
targeting those seniors at greatest risk, leveraging additional public
and private resources, and leveraging two million volunteers
nationwide, the Federal funding authorized through the OAA is failing
to keep pace with inflation, the growth in the senior population, and
the escalating senior hunger need. According to State of Senior Hunger
in America 2012: An Annual Report, even then 9.3 million seniors
(60+)--one in six--faced the threat of hunger. In just over a decade
(2001 to 2012), the portion of seniors experiencing the threat of
hunger has increased by 44 percent, while the number of seniors
struggling increased by 98 percent (which also reflects the growing
population of seniors). In 2012, the latest year for which we have data
from the Administration on Aging, OAA funding supported the provision
of meals to fewer than 2.5 million seniors. Year after year, the gap
between those struggling with hunger and those receiving nutritious
meals through the OAA continues to widen and waiting lists are mounting
in every State. Members of our organization responding to a recent
survey indicated an average waiting list of 135 people per program.
The graphs below, even prior to the 2013 cuts imposed by
sequestration, illustrate this troubling trending decline.
[The graphics follows:]
presenting the economic case
We all know that without proper nutrition, one's health
deteriorates and inevitably fails. It is extremely costly not only in
personal terms for the individuals who struggle, but also for our
Nation in terms of increased healthcare costs. Beyond the real people
and lives that OAA Nutrition Programs impact on a daily basis, however,
there is increasing and irrefutable evidence that improving and
bolstering funding for them will substantially reduce healthcare
costs--both in the short- and long-term. On average, a program can
deliver Meals on Wheels to a senior for an entire year for the same
cost as just 1 day in the hospital or one week in a nursing home--costs
that are often incurred by Medicare and Medicaid.
The recently released More Than a Meal study found that those who
received daily-delivered meals (the traditional Meals on Wheels model
of a daily, in-home-delivered meal, friendly visit and safety check),
experienced the greatest improvements in health and quality of life
indicators over the study period, compared to the other two groups
(individuals who received frozen, weekly-delivered meals and those who
were in the control group on waiting lists).
Specifically, between baseline and follow-up, seniors receiving
daily-delivered meals were more likely to exhibit:
--Improvement in mental health (i.e., levels of anxiety)
--Improvement in self-rated health
--Reductions in the rate of falls
--Improvement in feelings of isolation and loneliness
--Decreases in worry about being able to remain in home
Those receiving daily-delivered meals reported greater benefits
from their home-delivered meal experience compared to the group
receiving frozen meals.
--Specifically, seniors receiving daily-delivered meals were more
likely to attribute their meals to making them feel safer and
report that their meals helped them to eat healthier foods than
the group receiving frozen meals.
--In addition, those receiving daily-delivered meals were more likely
to note that their meals resulted in more social contact and
less loneliness than the group receiving frozen meals.
Finally, those seniors who lived alone and received daily-delivered
meals were more likely to report decreases in worry about being able to
remain in home, and improvements in feelings of isolation and
loneliness over the study period, compared to the other two groups
(individuals living alone, who either received frozen, weekly-delivered
meals or were on waiting lists).
scaling the solution
It is clear that those who are in need of home-delivered meal
services represent our Nation's most frail and vulnerable senior
population, and a group with significant health and social support
needs. The recent More Than a Meal study supports the wealth of past
research, indicating that home-delivered meals improve the health and
well-being of older adults, particularly those who receive daily-
delivered meals and those who live alone. By lessening feelings of
isolation and loneliness and reducing the rate of falls, the research
suggests the traditional Meals on Wheels service delivery model has the
greatest potential to decrease healthcare costs. When reviewing the
reduction in falls alone, which adjusted for inflation equaled $34
billion in direct medical costs in 2013, further investments in OAA
Nutrition Programs are an untapped solution and have the potential to
produce billions of dollars in savings to the Mandatory side of the
budget.
We certainly understand the difficult decisions you and your
colleagues are tasked with in fiscal year 2016 and beyond. However, the
evidence demonstrates that these programs are not only saving lives and
taxpayer dollars every day, but they are effectively reaching our
Nation's at risk seniors and have the capacity to serve significantly
more if properly resourced. As such, we hope that you recognize the
need to invest in Discretionary programs, like OAA Nutrition Programs,
that help prevent and mitigate the effects of chronic diseases, improve
quality of life, expedite recovery after an illness, injury, surgery or
treatment, and reduce unnecessary Medicare and Medicaid expenses both
today and in the future.
As your Subcommittee crafts and considers the fiscal year 2016
Labor-HHS-Education Appropriations Bill, we ask that you provide the
funding levels included in the President's fiscal year 2016 Budget
Request to Congress for all three nutrition programs authorized under
the OAA--Congregate Nutrition Program, Home-Delivered Nutrition
Program, and the Nutrition Services Incentive Program--as well as,
support the need for Nutrition Innovation Demonstration funding. You
have the ability to shorten or even eliminate waiting lists and
increase the number of nutritious meals we can serve to seniors today.
At the same time, you will be investing in a stronger fiscal path for
our country by reducing future healthcare costs.
Again, we thank you for the opportunity to present this testimony
to you, and for your continued support. We are also pleased to offer
our assistance and expertise at any time throughout this process.
______
Prepared Statement of the Medical Library Association and Association
of Academic Health Sciences Libraries
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--Continue the commitment to the National Library of Medicine (NLM)
by supporting the President's budget proposal which requests
$394,090,000.
--Continue to support the medical library community's role in NLM's
outreach, telemedicine, disaster preparedness, health
information technology initiatives, and healthcare reform
implementation.
_______________________________________________________________________
introduction
The Medical Library Association (MLA) and Association of Academic
Health Sciences Libraries (AAHSL) thank the Subcommittee for the
opportunity to submit testimony regarding fiscal year 2016
appropriations for the National Library of Medicine (NLM), an agency of
the National Institutes of Health (NIH). 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 results
of research readily available to all who need it. As health sciences
librarians who use NLM's programs and services every day, we can attest
that these resources literally save lives making NLM an investment in
good health.
NLM Leverages NIH Investments in Biomedical Research
In today's challenging budget environment, we recognize the
difficult decisions Congress faces as it seeks to improve our Nation's
fiscal stability. We thank the Subcommittee for its long-standing
commitment to strengthening NLM's budget. NLM's budget supports
intramural services and programs that sustain the Nation's biomedical
research enterprise and more--it builds, sustains, and augments NLM's
suite of more than 200 databases which provide information access to
health professionals, researchers, educators, and the public. NLM's
budget also supports all aspects of library operations and programs,
including the acquisition, organization, preservation, and
dissemination of the world's biomedical literature, no matter the
medium.
In fiscal year 2016 and beyond, it is critical to continue
augmenting NLM's baseline budget to support expansion of its
information resources, services, and programs which collect, organize,
and make readily accessible rapidly expanding biomedical knowledge
resources and data. NLM maximizes the return on the investment in
research conducted by the NIH and other organizations. The Library
makes the results of biomedical information more 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 is a leader in Big Data and
plays a critical role in accelerating nationwide deployment of health
information technology, including electronic health records (EHRs), by
leading the development, maintenance and dissemination of key standards
for health data interchange that are now required of certified EHRs.
NLM also contributes to Congressional priorities related to drug safety
through expansion of its clinical trial registry and results database
(ClinicalTrials.gov) in response to legislative requirements, and to
the Nation's ability to prepare for and respond to disasters.
Growing Demand for NLM's Basic Services
NLM delivers more than a 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 services to assist clinicians, students,
researchers, and the public in accessing information they need to save
lives and improve health. Without NLM, our Nation's medical libraries
would be unable to provide the quality information services that our
Nation's health professionals, educators, researchers and patients
increasingly need.
NLM's data repositories and online integrated services such as
GenBank, PubMed, and PubMed Central are revolutionizing medicine and
ushering in an era of personalized medicine in which care is based on
an individual's unique genetic profile. GenBank is the definitive
source of gene sequence information. PubMed, with more than 24 million
citations to the biomedical literature, is the world's most heavily
used source of bibliographic information. Approximately 765,000 new
citations were added in fiscal year 2015, and the database provided
high quality medical information to about 2 million users each day.
PubMed Central is NLM's digital archive which provides public access to
the full-text versions of more than 3.3 million biomedical journal
articles, including those produced by NIH-funded researchers. On a
typical weekday more than one million users download 1.65 million full-
text articles, including those submitted in compliance with the NIH
Public Access Policy.
As the world's largest and most comprehensive medical library,
NLM's traditional print and electronic collections continue to steadily
increase each year, standing at more than 21 million items--books,
journals, technical reports, manuscripts, microfilms, photographs and
images. By selecting, organizing and ensuring permanent access to
health sciences information in all formats, NLM 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 MLA and AAHSL membership
and to the profession. Through the National Network of Libraries of
Medicine (NN/LM), with over 6,300 members in communities nationwide,
these activities educate medical librarians, health professionals and
the general public about NLM's services and train them in the most
effective use of these services. The NN/LM promotes educational
outreach for public libraries, secondary schools, senior centers and
other consumer-based settings, and its emphasis on outreach to
underserved populations helps reduce health disparities among large
sections of the American public. NLM's ``Partners in Information
Access'' program improves access by local public health officials to
information which prevents, identifies and responds to public health
threats and ensures every public worker has electronic health
information services that protect the public's health.
NLM's MedlinePlus provides consumers with trusted, reliable health
information on more than 900 topics in English and Spanish. It has
become a top destination for those seeking information on the Internet,
attracting more than 1.6 million visitors daily. NLM has continued to
make enhancements to MedlinePlus, with selected materials now available
in forty other languages. New versions of MedlinePlus and MedlinePlus
en espanol have been released and have been optimized for easier use on
mobile phones and tablets; they also have all the content that is found
on the MedlinePlus and MedlinePlus en espanol websites. Other products
and services that benefit public health and wellness include the NIH
MedlinePlus Magazine and NIH MedlinePlus Salud, available in doctors'
offices nationwide, and NLM's MedlinePlus Connect--a utility which
enables clinical care organizations to implement links from their
electronic health records systems to relevant patient education
materials in MedlinePlus.
MLA and AAHSL applaud the success of NLM's outreach initiatives,
and we look forward to continuing to work with NLM on these programs.
Emergency Preparedness and Response
Through its Disaster Information Management Research Center, NLM
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 information on
bioterrorism, chemical emergencies, fires and wildfires, earthquakes,
tornadoes, and pandemic disease outbreaks. MLA and NLM continue to
develop the Disaster Information Specialization (DIS) program to build
the capacity of librarians and other interested professionals to
provide disaster-related health information outreach. Working with
libraries and publishers, NLM's Emergency Access Initiative makes
available free full-text articles from hundreds of biomedical journals
and reference books for use by medical teams responding to disasters.
MLA and AAHSL ask the Subcommittee to support NLM's role in this
crucial area which ensures continuous access to health information and
use of libraries and librarians when disasters occur. In 2014, NLM
released a new version of Chemical Hazards Emergency Medical Management
(CHEMM) that provide first responders with tools to quickly make a
series of complex decisions to minimize the risk of injury to their
patients and themselves. CHEMM enables first responders and other
healthcare providers to plan for, respond to, recover from, and
mitigate the effects of mass-casualty incidents involving accidental or
terrorist chemical releases.
Health Information Technology and Bioinformatics
For more than 40 years, NLM has supported informatics research,
training and the application of advanced computing and informatics to
biomedical research and healthcare delivery including telemedicine
projects. 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.
The importance of NLM's work in health information technology
continues to grow as the Nation moves toward more interoperable health
information technology systems. A leader in supporting the development,
maintenance, and dissemination of standard clinical terminologies for
free nationwide use (e.g., SNOMED), NLM works closely with the Office
of the National Coordinator for Health Information Technology to
promote the adoption of interoperable electronic records, and has
developed tools to make it easier for EHR developers and users to
implement accepted health data standards in their systems and link to
relevant patient education materials.
Dissemination of Clinical Trial Information
As health sciences librarians who fulfill requests for information
from clinicians, scientists, and patients, we applaud the NIH and NLM
for their efforts to expand and clarify the regulations for clinical
trials registration and results submission, and for work to apply the
ClinicalTrials.gov requirements to all NIH clinical trials. These
efforts will enhance the transparency of clinical trial results, and
provide patients with more information to make necessary healthcare
decisions, including critical information about the safety of products
and treatment options. Clinicians will have access to results
information about efficacy, adverse effects, and safety; and biomedical
researchers will have information on research design, safety, and
scientific results that can inform future protocols and discoveries. We
also support timely, easily understood, and accurate reporting of all
clinical trials, especially those supported by Federal funding,
regardless of agency and phase of the clinical trial, and information
about studies that have been terminated due to adverse events,
difficulties in research design making accrual difficult, or simply
feasibility problems. Ultimately, expanding the requirements will
create an incredible and vastly important database of clinical data and
knowledge for clinicians, scientists, and patients who need access to
cutting-edge information.
In addition to these efforts, beginning this spring, PubMed
Health's curated collection of systematic reviews now enables PubMed
users to go straight from a clinical trial to systematic reviews that
have considered it. This allows users to see how a particular trial
fits into the bigger picture of effectiveness research by helping them
to look at evidence in context.
Improving Public Access to Funded Research Results
Earlier this year, the Department of Health and Human Services
(DHHS) announced it plans and common policy approach to expanding
public access to the results of scientific research funded by HHS
agencies. Its operating divisions (Agency for Healthcare Research and
Quality, Centers for Disease Control, Food and Drug Administration, and
NIH) as well as the Assistant Secretary for Preparedness and Response
will utilize NLM's PubMed Central as the common repository for its
peer-reviewed publications and PubMed, a repository of citations, for
the sharing of metadata. NLM's experience in developing these systems
and related tools and engaging the health sciences library community in
outreach will be essential to effective implementation of HSS-wide
policies and improving compliance.
Thank you again for the opportunity to present our views. As health
sciences librarians who use NLM's products and services and as
intermediaries who provide services to researchers, clinicians, and the
public, we value and rely upon the high quality invaluable support and
leadership that NLM provides in support of our Nation's health
professionals, educators, researchers, and the public. As the needs of
these audiences continue to evolve, we are confident that NLM's vision
and understanding of the role of information, data, and technology will
continue to fuel the development of just-in-time resources and tools
that will keep our Nation's health, biomedical, and scientific
professionals at the forefront of healthcare, discovery, and
innovation.
We look forward to continuing this dialogue and supporting the
Subcommittee's efforts to secure the highest possible funding level for
NLM in fiscal year 2016 and the years beyond to support the Library's
mission and growing responsibilities. Information about NLM and its
programs can be found at http://www.nlm.nih.gov.
Organizational Bios
The Medical Library Association (MLA) is a nonprofit, educational
organization with 3,700 health sciences information individual and
institutional members. Founded in 1898, MLA provides lifelong
educational opportunities, supports a knowledge base of health
information research, and works with a network of partners to promote
the importance of quality information for improved health to the
healthcare community and the public.
The Association of Academic Health Sciences Libraries (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. AAHSL membership is composed of 166 academic health
sciences libraries whose medical schools hold member or associate
member status in the Association of American Medical Colleges.
______
Prepared Statement of Meharry Medical College
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--Funding for the Title VII Health Professions Training Programs,
including:
--$25 million for the Minority Centers of Excellence
--$14 million for the Health Careers Opportunity Program
--$32 Billion for the National Institutes of Health and a
Proportional Increase for the National Institute on Minority
Health and Health Disparities.
--$100 million for Research Centers for Minority Institutions.
--$65 million for the Department of Health and Human Services' Office
of Minority Health.
--$65 million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you. I am Dr. Anna Cherie Epps,
President and CEO of Meharry Medical College in Nashville, Tennessee. I
have seen firsthand the importance of minority health professions
institutions and the Title VII Health Professions Training programs.
Mr. Chairman, time and time again, you have encouraged your
colleagues and the rest of us to take a look at our Nation and evaluate
our needs over the next 10 years. First, I want to say that it is clear
that health disparities among various populations and across economic
status are rampant and overwhelming. Over the next 10 years, we will
need to be able to deliver more culturally relevant and culturally
competent healthcare services. Bringing healthcare delivery up to this
higher standard can serve as our Nation's own preventive healthcare
agenda keeping us well positioned for the future.
Minority health professional institutions and the Title VII Health
Professions Training programs address this critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities. Our
Nation's health professions workforce does not accurately reflect the
racial composition of our population. For example, African Americans
represent approximately 15 percent of the U.S. population while only 2-
3 percent of the Nation's healthcare workforce is African American.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: (1)
serve in rural and urban medically underserved areas, (2) provide care
for minorities and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Institutions that cultivate minority health professionals have been
particularly hard-hit as a result of the cuts to the Title VII Health
Profession Training programs in fiscal year 2006 and fiscal year 2007
Funding Resolution passed earlier this Congress. Given their historic
mission to provide academic opportunities for minority and financially
disadvantaged students, and healthcare to minority and financially
disadvantaged patients, minority health professions institutions
operate on narrow margins. The cuts to the Title VII Health Professions
Training programs amount to a loss of core funding at these
institutions and have been financially devastating.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2016, I recommend a funding level of $25 million
for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2016, I recommend a funding level
of $14 million for HCOPs. Additionally, we have worked hard with the
Obama Administration for them to understand this program. They have
offered to ``rebrand'' HCOP. Until such time that the agency that
administers the program, HRSA, and community agree on a path forward,
we support the current funding of HCOP.
national institutes of health (nih)
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professional institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities. For fiscal year 2016, I recommend
$285 million for NIMHD.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI) is now housed at the National
Institute on Minority Health and Health Disparities (NIMHD). RCMI has a
long and distinguished record of helping our institutions develop the
research infrastructure necessary to be leaders in the area of health
disparities research. Although NIH has received unprecedented budget
increases in recent years, funding for the RCMI program has not
increased by the same rate. Therefore, for fiscal year 2016, I
recommend $100 million for RCMI.
department of health and human services
Office of Minority Health.--Specific programs at OMH include:
--Assisting medically underserved communities with the greatest need
in solving health disparities and attracting and retaining
health professionals,
--Assisting minority institutions in acquiring real property to
expand their campuses and increase their capacity to train
minorities for medical careers,
--Supporting conferences for high school and undergraduate students
to interest them in healthcareers, and
--Supporting cooperative agreements with minority institutions for
the purpose of strengthening their capacity to train more
minorities in the health professions.
The OMH has the potential to play a critical role in addressing
health disparities, but this role can only be fulfilled if this agency
continues it grant making authority. For fiscal year 2016, I recommend
a funding level of $65 million for the OMH.
department of education
Strengthening Historically Black Graduate Institutions Program.--
The Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to MMC and other minority serving health professions
institutions. The funding from this program is used to enhance
educational capabilities, establish and strengthen program development
offices, initiate endowment campaigns, and support numerous other
institutional development activities. In fiscal year 2016, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Meharry Medical College along with other minority health professions
institutions and the Title VII Health Professions Training programs can
help this country to overcome health and healthcare disparities.
Congress must be careful not to eliminate, paralyze or stifle the
institutions and programs that have been proven to work. Meharry and
other minority health professions schools seek to close the ever
widening health disparity gap. If this subcommittee will give us the
tools, we will continue to work towards the goal of eliminating that
disparity as we have done for 1876.
Thank you, Mr. Chairman, for this opportunity.
[This statement was submitted by Anna Cherie Epps, Ph.D.,
President, Chief Executive Officer, Meharry Medical College.]
______
Prepared Statement of Ana Mettler
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Morehouse School of Medicine
Mr. Chairman and members of the Subcommittee, my name is Dr.
Valerie Montgomery-Rice, and I have the distinct privilege of serving
as President of Morehouse School of Medicine (MSM) in Atlanta, Georgia.
My testimony will highlight the sources of funding which allow
Morehouse School of Medicine to serve underrepresented communities and
address health disparities, workforce shortages, and chronic diseases
impacting vulnerable populations. The agencies and programs which I
will discuss include:
--Funding for Title VII Health Professions Training Programs,
including:
--$24.602 million for the Minority Centers of Excellence for Fiscal
Year 2015.
--$22.133 million for the Health Careers Opportunity Program for
Fiscal Year 2015.
--$33.345 million for the Area Health Education Centers for Fiscal
Year 2015
--$32 billion for the National Institutes of Health
--$291.778 million for the NIH's National Institute on Minority
Health and Health Disparities.
--$65 million for the Department of Health and Human Services' Office
of Minority Health.
--$65 million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
I previously served as dean of medicine at Meharry Medical College,
and in all of my roles, I have seen firsthand the importance of
minority health professions institutions and the challenges they face,
especially in respect to their funding.
I want to take a moment to highlight the Historically Black Medical
School's (HBMS) unique place in our society. An independent,
historically black, primary health mission-centered institution like
the Morehouse School of Medicine (MSM) is distinct in a world where
health professionals tend to focus on more lucrative subspecialties.
MSM ranks first among U.S. medical schools in terms of social mission,
or the production of primary care physicians, minority doctors, and
doctors practicing in underserved areas. While this conclusion might
seem elementary, it is important to note that MSM was able to achieve
this distinction with a graduating class of only 64. Since 1984, MSM
has graduated more than 1,200 students and more than 71 percent have
chosen to honor the institution's mission of serving where they are
needed most: providing primary care to our underserved communities,
both rural and urban.
Though the recent economic downturn has financially challenged all
academic institutions, MSM and other HBMS are distinctly disadvantaged
when compared to most of their peer institutions; given the societal
mission, governmental and nongovernmental support finance the core
curriculum and infrastructure of our institutions. Financially, MSM
lacks many of the revenue streams one may find at non-minority peer
institutions, including a wealthy donor base. Because MSM does so much
public good, I've taken to calling us a ``private institution with a
public mission.'' For this reason and others, it is critical that
Federal resources, along with the private, continue to invest in MSM
and the future health professionals we train.
Mr. Chairman, our mission at MSM is ``to improve the health and
well-being of individuals and communities; increase the diversity of
the health professional and scientific workforce; and address primary
healthcare needs through programs in education, research, and service,
with emphasis on people of color and the underserved urban and rural
populations in Georgia and the Nation.'' Given this, I must point out
that our Nation's health professions workforce does not accurately
reflect the racial composition of our population. For example, while
blacks represent approximately 15 percent of the U.S. population, only
2-3 percent of the Nation's health professions workforce is black. Mr.
Chairman, I would like to share with you how your subcommittee can help
us continue to carry out our mission, our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well-established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continues its
commitment to minority health profession institutions and minority
health professional training programs in order to produce the next
generation of healthcare providers committed to addressing this unmet
need.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved, are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Given the historic mission of institutions like MSM, to provide
academic opportunities for minority and financially disadvantaged
students and healthcare to minority and financially disadvantaged
patients, minority health professions institutions operate on narrow
margins. The slow reinvestment in the Title VII Health Professions
Training programs amounts to a loss of core funding at these
institutions and has been financially devastating. Here are my
recommendations for this subcommittee to make an investment, on which
there will be a return:
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of additional categories. For fiscal year
1206, I recommend $25 million for COEs.
Health Careers Opportunity Program.--HCOPs provide grants for
minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Lately, HCOPs have come under increased scrutiny for their
efforts to reach to elementary, middle, and high schools to cultivate
future health professionals. While it is true that HCOPs partner with
high schools, and even elementary schools in order to identify and
nurture promising students who demonstrate that they have the talent
and potential to become a health professional, there are programs like
the one MSM recently hosted which focused on undergraduates or the
program which Meharry hosted based in their post-bachelorette program.
Over the last three decades, HCOPs have trained approximately 30,000
health professionals including 20,000 doctors, 5,000 dentists and 3,000
public health workers. For fiscal year 2016, I recommend funding of $14
million for HCOPs.
Area Health Education Centers.--AHECs are designed to encourage the
establishment and maintenance of community based training programs in
off-campus rural and underserved areas. At MSM, the AHEC funding
focuses on exposing medical students and health professions students to
primary care and practice in rural and underserved communities, with a
special emphasis on primary care and interprofessional/
interdisciplinary training for our health professions students. For
fiscal year 2016, I recommend $35 million for AHEC.
national institutes of health (nih)
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professional institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through the Minority Centers of
Excellence program. At MSM, the Research Endowment program has been
transformed our institution because it aligns with the mission of
promoting minority health and health disparities research, while at the
same time the building capacity component has stabilized us
financially. For fiscal year 2016, I recommend $285 million for NIMHD.
Office of Minority Health.--OMH was created in 1986 and is one of
the most significant outcomes of the landmark 1985 Secretary's Task
Force Report on Black and Minority Health. The Office is dedicated to
improving the health of racial and ethnic minority populations through
the development of health policies and programs that will help
eliminate health disparities. Additionally, one of the most vital roles
of OMH has been its strategic grant making authority, including its
cooperative agreements with MSM and other HBMS. These cooperative
agreements are based on the specific needs of the communities we serve.
The requirements, which are published in the Federal Register, are the
agency's connection with institutions that most mirror its purpose.
There are those in the Administration that do not agree with the theory
that OMH should grant funding, that the agency should be solely focused
on strategies. Without these cooperative agreements, OMH loses much of
its most effective outreach to the communities that need it the most.
The OMH has the potential to play a critical role in addressing health
disparities, and with the proper funding and continued emphasis on the
cooperative agreements, this role can be enhanced. For fiscal year
2016, I recommend a funding level of $65 million for the OMH.
department of education
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to MSM and other minority serving health professions
institutions. The funding from this program is used to enhance
educational capabilities, establish and strengthen program development,
initiate endowment campaigns, and support numerous other institutional
development activities. While this program provides significant
funding, based off a competition, institutions must match fifty cents
to every dollar. In fiscal year 2016, an appropriation of $65 million
is suggested to continue the vital support that this program provides
to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Morehouse School of Medicine along with other minority health
professions institutions will help this country to overcome health and
healthcare disparities. These investments are not only important for
the health of our Nation, but the elimination of health disparities
will relieve our country of unnecessary health and economic burdens.
Congress must be careful not to eliminate, paralyze or stifle the
institutions and programs that have been proven to work. If this
subcommittee will give us the tools, we will continue to work towards
the goal of eliminating that disparity as we have since our founding
day. Thank you, Mr. Chairman. I welcome the opportunity to answer
questions for you now or in the subcommittee's record.
[This statement was submitted by Valerie Montgomery-Rice, M.D.,
President & Dean, Morehouse School of Medicine.]
______
Prepared Statement of Moveable Feast
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Moveable Feast is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In our service area, we provide 800,000 medically
tailored, home delivered meals annually. Collectively, the Food is
Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RON) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30% lower,
their hospital length of stay was cut by 37 percent and they were 20
percent more likely to be able to be discharged to their homes rather
than a more expensive institution.\8\ Furthermore, FNS are a very
inexpensive intervention. For each day in a hospital saved, you can
feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Tom Bonderenko, Executive
Director, Moveable Feast.]
______
Prepared Statement of Paul Murphy
My son currently resides in an ICF/IID facility. He lives in a home
where he is supervised by a staff of caregivers and nurses. He needs
constant professional supervision that the facility provides. My son is
physically normal but has severe autism which makes him oblivious to
possible dangers in his environment. It is crucial he has constant
alert supervision to prevent him from being harmed by everyday hazards.
He also requires multiple medications that must be administered on a
precise schedule. The staff at the ICF/IID facility is equipped to
provide these services. I searched for years to find an appropriate
setting to care for my son. All the community services in my region
were unable to care properly for him for one reason or another.
Community services may suit some individuals properly but there is a
special need for ICF/IID facilities to help supervise and support
individuals such as my son.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the National AHEC Organization
The members of the National AHEC Organization (NAO) are pleased to
submit this statement for the record recommending $35 million in fiscal
year 2016 for the Area Health Education Center (AHEC) program
authorized under Titles VII of the Public Health Service Act and
administered through the Health Resources and Services Administration
(HRSA). The NAO is the professional organization representing AHECs.
The AHEC Program is an established and effective national primary care
training network built on committed partnerships of 53 medical schools
and academic centers. Additionally, 253 AHEC centers within 48 States
and tens of thousands of community practitioners are affiliated with
the AHEC's national clinical training network.
AHEC is one of the Title VII Health Professions Training programs,
originally authorized at the same time as the National Health Service
Corps (NHSC) to create a complete mechanism to provide primary care
providers for Community Health Centers (CHCs) and other direct
providers of healthcare services for underserved areas and populations.
The plan envisioned by creators of the legislation was that the CHCs
would provide direct service. The NHSC would be the mechanism to fund
the education of providers and supply providers for underserved areas
through scholarship and loan repayment commitments. The AHEC program
would be the mechanism to recruit providers into primary health-
careers, diversify the workforce, and develop a passion for service to
the underserved in these future providers, i.e. Area Health Education
Centers are the workforce development, training and education machine
for the Nation's healthcare safety-net programs. The AHEC program is
focused on improving the quality, geographic distribution and diversity
of the primary care healthcare workforce and eliminating the
disparities in our Nation's healthcare system.
AHECs develop and support the community based training of health
professions students, particularly in rural and underserved areas. They
recruit a diverse and broad range of students into health-careers, and
provide continuing education, library and other learning resources that
improve the quality of community-based healthcare for underserved
populations and areas.
The Area Health Education Center program is effective and provides
vital services and national infrastructure. Nationwide, over 379,000
students have been introduced to health-career opportunities, and over
33,000 mostly minority and disadvantaged high school students received
more than 20 hours each of health-career exposure. Over 44,000 health
professions students received training at 17,530 community-based sites,
and furthermore; over 482,000 health professionals received continuing
education through AHECs. AHECs perform these education and training
services through collaborative partnerships with Community Health
Centers (CHCs) and the National Health Service Corps (NHSC), in
addition to Rural Health Clinics (RHCs), Critical Access Hospitals,
(CAHs), Tribal clinics and Public Health Departments.
justification for recommendations
The AHEC network is an economic engine that fuels the recruitment,
training, distribution, and retention of a national health workforce.
AHEC stands for JOBS.
--AHECs are critical in the recruitment, training, and retention of
the primary care workforce.
--Research has demonstrated that the community-training network is
the most effective recruitment tool for the health professions
and those who teach remain longer in underserved areas and
communities.
--AHECs are in almost every county in the United States.
--With the aging and growing population, the demand for primary care
workforce is far outpacing the supply.
--AHECs continue to educate and train current workforce, as well as
recruiting and preparing future workforce
--In the past year, AHEC's had 731,515 active participants training
in their programs
--299,932 students were exposed to health-careers with the intent
to pursue post-secondary education in primary healthcare
professions through AHEC's pipeline programs
--AHECs facilitated 40,591 rotations in clinical training to
improve readiness, willingness, and ability of health
professions trainees to serve in primary care, and rural
and underserved communities
--19,048 health professions students were placed in rural and
underserved locations
-- 10,643 were medical students
-- 8,405 were associated health professions students
--412,535 participants in continuing education programs learned how
to address key issues in health professional shortage areas
to improve quality of healthcare for medically underserved
and health disparities populations
--Approximately 459,272 health professions students engaged in AHEC-
supported programs between July 2013 and December 2014. Of
these students engaged in AHEC-supported structured programs,
74 percent were from disadvantaged backgrounds, 54 percent were
from rural backgrounds, and 27 percent were under-represented
minorities (URM).
--The AHEC network's outcomes are the backbone of the Nation's
community-based health professions training, with a focus on
training primary care workforce.
--Continued funding for the AHEC program is necessary as demonstrated
by (1) a growing unmet need for primary care doctors in rural
areas, and (2) the use of the national network of AHEC programs
to carry out administrative priorities.
1. The National Health Service Corps (NHSC), has been mentioned
as a program that addresses the priority of increasing
diversity in the health professions workforce in underserved
and rural areas and addresses the end of the pipeline. The AHEC
program engages in pre-pipeline, pipeline, and post-pipeline
activities that works to move individuals through a health-
careers pathway and beyond, with a special focus on primary
care doctors.
2. The national network of the AHEC program has been tasked with:
-- Training 13,000+ providers nationwide in OIF/OEF/OND
Veteran's behavioral and mental health, substance abuse,
traumatic brain injury and post-traumatic stress, for those
not utilizing the VA system
-- Working with the Food and Drug Administration to educate
healthcare professionals nationwide on proper opioid
prescribing habits to address the epidemic of prescription
drug abuse
-- HRSA has encouraged functional linkage between Bureau of
Primary Care and Bureau of Health Professions Programs.
AHECs have partnerships with over 1,000 Community Health
Centers nationally to recruit, train, and retain health
professionals who have the cultural and linguistic skills
to serve in HRSA designated underserved areas
-- Affordable Care Act activities such as increasing the
enrollment of individuals and educating providers
nationwide on health insurance exchanges
[This statement was submitted by Rob Trachtenberg, Executive
Director, National AHEC Organization.]
______
Prepared Statement of the National Alliance for Eye and Vision Research
executive summary
NAEVR requests fiscal year 2016 NIH funding of at least $32
billion, waiving it from sequester cuts and Budget Control Act caps and
improving upon the President's fiscal year 2016 funding proposal of $31
billion. This build upon actions in fiscal year 2014 and 2015 by
Congress to restore the $1.7 billion in fiscal year 2013 sequester cuts
by enabling at least a 5 percent increase in the NIH budget, reflecting
both modest growth and an inflationary increase. The latter is crucial,
as NIH has lost 22 percent of its purchasing power since fiscal year
2003, in terms of constant dollars.
--Cuts and a lack of inflationary increases have significantly
limited NIH's ability to sustain current research capacity and
encourage new areas of science. This comes at a time when past
investment in basic and clinical research has resulted in new
diagnostics, treatments, and prevention strategies that save
lives and improve quality of life.
--NIH is an economic driver. In fiscal year 2011, NIH-funded research
supported 432,000 jobs across the U.S. and generated more than
$62 billion in new economic activity. Every $1 of NIH funding
generates $2.21 in local economic growth.
--The U.S. must capitalize on previous NIH investment to drive
research progress, train the next generation of scientists,
create new jobs, promote economic growth, and maintain
leadership in the global innovation economy.
NAEVR requests National Eye Institute (NEI) funding at $730
million, which would fully restore the $36 million in fiscal year 2013
sequester cuts and enable both modest growth and an inflationary
increase, the latter being crucial as the NEI has lost 25 percent of
its purchasing power since fiscal year 2003.
--Despite Congressional actions in fiscal year 2014 and 2015 to
restore sequester cuts, the NEI's operating budget is still $25
million below the fiscal year 2012 level-the equivalent of 60
grants, any one of which could have held the promise to save
sight and restore vision. The President's fiscal year 2016
proposed NEI funding of $695 million would still be $7 million
below pre-sequester funding.
--NEI's fiscal year 2015 operating budget of $676 million is still
less than 0.5 percent of the $145 billion annual cost of vision
disorders, which will grow to a $717 billion annual cost by
year 2050, in inflation-adjusted dollars.
americans fear vision loss, which is a growing public health problem
The NEI estimates that more than 38 million Americans age 40 and
older experience blindness, low vision, or an age-related eye disease
such as age-related macular degeneration (AMD), glaucoma, diabetic
retinopathy, or cataracts. This is expected to grow to more than 50
million Americans by year 2020, driven by:
--The aging of the population-the ``Silver Tsunami'' of the 78
million baby boomers who will turn age 65 this decade and
experience increased risk for eye disease.
--The disproportionate risk/incidence of eye disease in Hispanic and
African American communities, which increasingly account for a
larger share of the U.S. population.
--Vision loss as a co-morbid condition of chronic disease, such as
diabetes, which is at epidemic levels due to the increased
incidence of obesity.
In September 2014, NAEVR's educational foundation, the Alliance for
Eye and Vision Research (AEVR), released results of a new poll entitled
The Public's Attitudes about the Health and Economic Impact of Vision
Loss and Eye Disease, which was commissioned by Research!America and
conducted by Zogby Analytics with a grant from Research to Prevent
Blindness (RPB), a private vision funding foundation which conducted
the first-ever poll of the public's attitudes about vision loss in
1965. The 2014 poll-the most rigorous conducted to-date of attitudes
about vision and vision loss among ethnic and racial groups including
non-Hispanic Whites, African Americans, Hispanics, and Asian Americans-
found, in part, that:
--A significant number of Americans across all racial lines rate
losing their eyesight as having the greatest impact on their
daily life, affecting independence, productivity, and quality
of life.
--African Americans, when asked what disease or ailment is the worst
that could happen, ranked blindness first, followed by HIV/
AIDS. Hispanics and Asians ranked cancer first and blindness
second, while non-Hispanic Whites ranked Alzheimer's disease
first, followed by blindness.
--America's minority populations are united in the view that not only
is eye and vision research very important and needs to be a
national priority, but many feel that the current annual
Federal funding of $2.10 per-person, per-year is not enough and
should be increased.
In June 2014, Prevent Blindness (PB) released a report entitled The
Future of Vision: Forecasting the Prevalence and Costs of Vision
Problems, which it commissioned from the University of Chicago's
National Opinion Research Center (NORC). This report estimates the
current annual cost (inclusive of direct and indirect costs) of vision
disorders at $145 billion, an increase of $6 billion from the $139
billion estimate in PB's 2013 study entitled Cost of Vision Problems:
The Economic Burden of Vision Loss and Eye Disorders in the United
States, which also concluded that direct medical costs associated with
vision disorders are the fifth highest-only less than heart disease,
cancers, emotional disorders, and pulmonary conditions. PB's 2014 study
projects that the total annual cost of vision disorders, which includes
government, insurance, and patient costs, will grow to $373.2 billion
in 2050 when expressed in 2014 dollars-which is $717 billion when
adjusted for inflation. Of the $373.2 billion estimated 2050 costs,
$154 billion or 41 percent will be borne by the Federal Government as
the Baby-Boom generation ages into the Medicare program.
PB's 2014 report also concludes that the prevalence of vision
disorders and costs will shift to conditions that are more common at
older ages and for minorities:
--The age 90-plus population will see the highest rates of growth in
prevalence and costs by 2050, since it will be the fastest
growing segment of the U.S. population, reflecting the aging
over the next 40 years of the Baby-Boom generation.
--The prevalence of eye diseases is going to increase by 60 to 80
percent by 2050, with cataract being most prevalent in the
growing older population and with prevalence of diabetic
retinopathy and glaucoma also increasing, driven by greater
incidence in the African American and Hispanic populations.
nei's budget is not keeping pace as the burden of eye disease and
vision impairment grows
In fiscal year 2015, NEI's operating budget is still $25 million
below the fiscal year 2012 level due to a combination of the fiscal
year 2013 sequester cut, lack of inflationary increases, and a
reduction in NEI's appropriation due to the transfer back to the NIH
Office of AIDS Research (OAR) for funding of the successfully completed
NEI-sponsored Studies of the Ocular Complications of AIDS (SOCA).
Although OAR's funding to NEI was not committed indefinitely, its
return to NIH Central in the amounts of $5.6 million (fiscal year
2013), $6.9 million (fiscal year 2014), and $7.4 million (fiscal year
2015) has essentially cut NEI's budget further, resulting in a new
baseline upon which any future funding increases are based. Even though
the President's budget would increase NEI funding to $695 million, its
budget would still be $7 million below the fiscal year 2012 pre-
sequester level.
NEI's fiscal year 2015 operating net budget of $676 million, as
well as the President's fiscal year 2016 proposed NEI budget of $695
million, are each less than 0.5 percent of the $145 billion annual
vision disorder cost burden. The U.S. is spending only $2.10 per-
person, per-year for vision research at the NEI, while the 2013 PB
report estimates that the cost of treating low vision and blindness is
at least $6,690 per-person, per-year.
The very health of the vision research community is also at stake.
The convergence of factors that have reduced NEI funding has affected
both young and seasoned investigators and threatened the continuity of
research and the retention of trained staff, while making institutions
more reliant on bridge and philanthropic funding.
In 2009, Congress spoke volumes in passing S. Res 209 and H. Res.
366, which designated 2010-2020 as The Decade of Vision and recognized
NEI's 40th anniversary as the lead institute in funding research to
save sight and restore vision. With the fiscal year 2016 LHHS spending
bill, Congress can act upon its past resolutions regarding vision and
ensure that NEI is funded at $730 million to meet these challenges.
$730 million fiscal year 2016 funding enables nei to pursue its
audacious goal of restoring vision
NEI has lost 25 percent of its purchasing power since fiscal year
2003, and the $25 million that its budget is down from the fiscal year
2012 level is the equivalent of 60 grants it cannot fund-any one of
which could have held the promise to save sight and restore vision.
Although these goals would have seemed unattainable just a few short
years ago, the NEI is pursuing vision restoration through its Audacious
Goal Initiative (AGI) which focuses on regenerating neurons and neural
connections in the eye and visual system. In February 2014, NEI
Director Dr. Paul Sieving stated the following about the AGI:
``The goals are bold but achievable. They are beyond what medicine
currently can do. We are planning for a 10-15 year effort to
reach these endpoints. Success would transform life for
millions of people with eye and vision diseases. It would have
major implications for medicine of the future, for vision
diseases, and even beyond this, for neurological diseases.''
The AGI builds upon discoveries from past investment in biomedical
research, such as gene sequencing, gene therapy, and stem cell
therapies, and combines these with new discoveries-such as imaging
technologies that enable researchers to non-invasively view in real-
time biological processes occurring in the retina at a cellular level-
to develop new therapies for degenerative retinal disorders.
These are ambitious goals that require increased-not decreased-
funding. 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, especially
those associated with the Medicare and Medicaid programs. It can also
increase productivity, help individuals to maintain their independence,
and generally improve the quality of life, especially since vision loss
is associated with increased depression and accelerated mortality.
In summary, NAEVR requests fiscal year 2016 NIH funding of at least
$32 billion and NEI funding of $730 million to maintain the momentum of
research.
about naevr
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, 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
(National Alliance) regarding fiscal year 2016 appropriations. The
National Alliance is the leading national organization committed to
advancing the quality, growth, and sustainability of public charter
schools.
In what continues to be a very tight fiscal environment, with
sequestration caps still in place and many urgent needs and priorities
competing for Federal support, the National Alliance appreciates the
work that Congress has done to help meet the needs of the burgeoning
and successful charter schools movement. We truly appreciate the
bipartisan support that public charter schools have received, including
the increase for the Charter Schools Program (CSP) in the final 2015
appropriation and the additional increase included in the President's
2016 budget request. I appreciate this opportunity to describe the
growth of the charter school movement, the successful student outcomes
achieved by charter schools, and the reasons why we believe it would be
appropriate--even urgent--for the CSP to receive a significant
appropriations increase for 2016.
the growth and performance of public charter schools
In the 2014-2015 school year, almost 2.9 million children are
attending more than 6,700 public charter schools in 42 States and the
District of Columbia. Alabama is the most recent State to authorize
charter schools, passing a law in March 2015. The growth in the charter
movement during the 23 years since the first school opened in 1992 has
been absolutely phenomenal. Public charter schools are now a
significant presence (more than 10 percent of enrollment) in some 150
communities, and enroll more than 30 percent of students in twelve
school districts. Charter schools have become a prominent component of
the public school landscape in many communities because they offer
students and parents high-quality educational options, have the
flexibility to adopt innovative curricula and practices, and are held
accountable for their performance. Charter schools often address
particular themes or instructional areas, such as science, technology,
engineering, and math (STEM), performing arts, language immersion,
project-based learning, and many others.
Charter schools have also been at the forefront of serving
disadvantaged and other special-needs populations since the movement
began. Nationally, public charter schools enroll higher percentages of
minority students and students from low-income families than do
traditional public schools (and particularly high percentages in
certain communities, such as New York City), and their enrollment of
English language learners and students with disabilities is comparable
to that of other schools.
Through their agreements with authorized public chartering
agencies, charter schools are held accountable for results, and the
penalty for repeated failure to educate students to State standards is
closure. The data show that this model--greater flexibility in exchange
for accountability for student outcomes--is working. A 2015 review of
2006-07 through 2011-12 data by the Center for Research on Outcomes in
Education at Stanford University, found that charter school students
are outperforming their peers in traditional public schools and closing
the achievement gaps between student subgroups. Nearly half (43
percent) of urban charter schools post larger learning gains than
traditional public schools in math. In reading, 38 percent of charter
schools outperform traditional school peers, while 46 percent show
equivalent learning gains. The academic gains charter students received
equated to 40 additional learning days in math and 28 additional days
in reading relative to their peers in traditional public schools.
These results are especially impressive for students from specific
demographic backgrounds: black students from low-income families
enrolled in charter schools gained 59 instructional days in math and 44
days in reading compared to their peers. Hispanic English language
learners gained 72 days in math and 79 days in reading by attending a
public charter school. Students with special needs showed learning
gains equivalent to nine additional instructional days in math and 13
in reading.
the need for additional resources
Although the number of charter schools has increased rapidly, the
movement has not been able to expand quickly enough to meet strong
parent and student demand. Last year, the National Alliance found that
there were more than a million names on charter school waiting lists
nationally in school year 2013-2014. Accounting for the fact that many
students apply to more than one school, we estimated that more than
586,000 students wanted to attend a charter school but could not do so
simply because there were not enough spaces. The number of names on the
waiting lists has grown annually: from 2008-2009 through 2013-2014 it
increased by a staggering 186 percent. The message is clear--there is a
great unmet demand for seats in charter schools, and public officials
at all levels should be doing more to meet that demand.
Toward that end, I cannot overemphasize the importance of Federal
support, through the CSP, in helping charter schools get started and in
enabling the replication and expansion of successful charter school
models. Unfortunately, while 43 States and DC now have charter school
laws, States and localities have underfunded their charter schools
(relative to traditional public schools) and have not provided the seed
money needed to plan and start new schools. It is inconceivable that
the movement would have grown as quickly as it did without the CSP,
particularly through the State Educational Agency (SEA) grants. And in
recent years, the Replication and Expansion grants have been an
essential tool for enabling our most effective models and schools to
serve additional students, often in economically distressed areas where
traditional public schools are failing.
Facilities are another area in which Federal support is critical.
State and local formulas and programs often do not provide charter
schools with the same support for capital expenses as is available to
traditional schools. In those cases, charter school operators typically
have to scramble to find acceptable facilities. The CSP State
Facilities Incentive Grants and the Credit Enhancement for Charter
Schools program help to make up the difference. We look forward to
working with the Committee on ensuring that both of these grant
programs are meeting the needs of the charter school community.
the fiscal year 2016 budget
As the Subcommittee begins its work on the appropriation for 2016,
I encourage you to make funding for the CSP a key priority. As I have
described, the Nation needs more schools that can effectively serve
diverse populations, particularly in neighborhoods that have not had
high-quality options. And we must do more to meet the needs of parents
and students who want charter schools but cannot gain access to them.
The National Alliance is pleased that the Administration's budget
request includes $375 million for the program, of which at least $100
million would go for Replication and Expansion Grants, up to $10
million for State Facilities Incentive Grants, at least $13 million for
Credit Enhancement, at least $11 million for National Activities, and
the remainder for Grants to SEAs and the ``non-SEA'' competition. We
commend the Administration for including $375 million for CSP in the
budget request and ask that Congress support these funding levels for
these important programs. In addition, we look forward to discussing
our recommendations for report language to support authorizer and
charter school quality, and other issues related to the program.
Again, thank you for the opportunity to present the views of the
National Alliance and the charter school community on the fiscal year
2016 appropriations. If my organization can be of any assistance to the
Subcommittee, please do not hesitate to contact me.
[This statement was submitted by Nina Rees, President and CEO,
National Alliance for Public Charter Schools.]
______
Prepared Statement of the National Alliance of State and Territorial
AIDS Directors
The National Alliance of State & Territorial AIDS Directors
(NASTAD) represents the Nation's chief state health agency staff who
have programmatic responsibility for administering HIV and hepatitis
healthcare, prevention, education and supportive service programs
funded by State and Federal Governments. On behalf of NASTAD, we urge
your support for increased funding for Federal HIV and hepatitis
programs in the fiscal year 2016 Labor-Health-Education Appropriations
bill, and thank you for your consideration of the following critical
funding needs for HIV and hepatitis programs in fiscal year 2016:
------------------------------------------------------------------------
NASTAD Funding
Agency Program Request ($
million)
------------------------------------------------------------------------
Health Resources and Services Ryan White Part B 437.5
Administration. Base.
Health Resources and Services Ryan White Part B 943.3
Administration. ADAP.
Centers for Disease Control and Division of HIV 832.7
Prevention. Prevention.
Centers for Disease Control and Division of Viral 62.8
Prevention. Hepatitis.
------------------------------------------------------------------------
The Affordable Care Act (ACA) is radically changing the U.S.
healthcare system. The ACA provides opportunities to increase access
for many people living with HIV and/or hepatitis to the care and
prevention services needed to help end these twin epidemics. However,
access to insurance alone does not replace the key role of State public
health programs to monitor diseases within their borders. Public health
will remain a critical player in meeting the needs of the hardest to
reach, most vulnerable populations (e.g., men who have sex with men
[MSM], youth, persons who inject drugs) from actively identifying and
locating persons at risk, to ensuring linkage to and retention in
medical care in a manner that is responsive to the needs of people
living with HIV and/or hepatitis.
Domestic prevention efforts must match the commitment to the care
and treatment of people who are living with HIV. To be successful, we
must expand traditional efforts (e.g., outreach and screening for HIV/
STDs) and scale-up proven new biomedical prevention modalities such as
pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP),
while reimaging how the compendium of effective prevention tools can
work in tandem to curb incidence in the United States. We must also
prioritize funding and efforts to the populations most
disproportionately impacted by HIV in the United States--men who have
sex with men (MSM), especially young MSM of color. Among the services
necessary to improve health outcomes are the needs for linkage to, and
retention in care, and access to medications that suppress viral load,
reducing HIV transmission, which make HIV more difficult to transmit--
ultimately leading to fewer new infections. The Centers for Disease
Control and Prevention (CDC)'s prevention programs and the Ryan White
Program are crucial to preventing new infections and improving health
outcomes.
hiv/aids care and treatment programs
The Health Resources and Services Administration (HRSA) administers
the $2.3 billion Ryan White Program that provides health and support
services to more than 500,000 people living with HIV (PLWH). NASTAD
requests a minimum increase of $65.8 million in fiscal year 2016 for
State Ryan White Part B grants, including an increase of $22.8 million
for Part B and $43 million for AIDS Drug Assistance Programs (ADAPs).
The Ryan White Part B Program funds State health departments to provide
care, treatment and support services for low-income uninsured and
underinsured individuals living with HIV. With these funds States and
territories provide access to HIV clinicians, life-saving and life-
extending therapies and a full range of vital coverage completion
services to ensure adherence to complex treatment regimens. The State
ADAPs provide medications to low-income PLWH who have limited or no
coverage from private insurance, Medicare and/or Medicaid.
Throughout and following the ACA implementation, health departments
will require capacity-building support in order to create new
infrastructure and leverage existing systems to ensure continuous, high
quality care for PLWH. The Ryan White Program will continue to serve
PLWH in order to ensure that clients do not experience gaps in coverage
or access to treatment.
hiv/aids prevention and surveillance programs
NASTAD requests an increase of $77 million in fiscal year 2016 for
CDC's Division of HIV Prevention. The flagship HIV prevention program,
HIV Prevention by Health Departments, funds State and local health
departments to provide the foundation for HIV prevention and control
nationwide. Health departments are the cornerstone implementers of
Federal public health policy and are essential to lowering HIV
infections. HIV prevention activities and services are targeted to
communities where HIV is most heavily concentrated, particularly among
racial and ethnic minorities and gay men/MSM of all races and
ethnicities.
The number of new HIV infections must decrease to address in order
to see meaningful improvements in individual and community level health
outcomes, particularly among disproportionately impacted populations.
It is increasingly clear that early detection, linkage to and retention
in care, and adherence to treatment will suppress individual and
community viral loads and reduce the incidence of HIV. Unfortunately,
only thirty percent of people living with HIV have an undetectable
viral load. Addressing interventions along the HIV care continuum is
our newest and most effective tool to get to zero new HIV infections;
however, health departments need additional support to successfully
implement these strategies.
Robust surveillance systems are essential for high-impact
prevention, including using surveillance data for program planning and
response, strategically directing resources to populations and
geographic areas and linking and retaining individuals in care.
Additional resources will allow improvements in core surveillance and
expand surveillance for HIV incidence, behavioral risk and receipt of
point of care information, including CD4 and viral load reporting. This
will, in turn, contribute to improved testing and linkage to care,
retention and re-engagement in care, and reducing risk behaviors.
NASTAD requests that the Committee allow States and localities the
discretion to use Federal funds to support cost-effective and
scientifically proven, syringe services programs (SSPs). Overwhelming
scientific evidence has shown SSPs and access to sterile syringes are
an evidenced-based and cost-effective means of lowering HIV and
hepatitis infection rates, reducing use of illegal drugs and helping
connect people to HIV and hepatitis medical treatment, including
substance abuse treatment.
viral hepatitis prevention programs
NASTAD requests an increase of $31.5 million in fiscal year 2016
for the CDC's Division of Viral Hepatitis (DVH). This increase will
better enable State and local health departments to provide the basic,
core public health services to combat hepatitis, increase surveillance,
testing and education efforts nationwide and effectively implement the
recommendations set by the IOM's Hepatitis and Liver Cancer: A National
Strategy for Prevention and Control of Hepatitis B and C, the Action
Plan for Viral Hepatitis, and the CDC and United States Preventive
Services Task Force (USPSTF) viral hepatitis testing recommendations
for populations with risk factors, including baby boomers. NASTAD
requests that CDC dedicate at least $10.5 million for the viral
hepatitis prevention coordinators (VHPC) program to support and expand
programs in all existing jurisdictions. The IOM report and the Viral
Hepatitis Action Plan, set prevention goals, established program
priorities and assigned responsibilities for actions to HHS operating
divisions, including CDC. In turn, CDC has provided funds to State and
local health departments to coordinate prevention and surveillance
efforts via the VHPC. For over a decade, the VHPC program has been and
remains the only national program dedicated to the prevention and
control of the hepatitis epidemics. The CDC has estimated that up to
5.3 million people are living with hepatitis B (HBV) and/or hepatitis C
(HCV) in the United States and as much as 75 percent are not aware of
their infection. Additionally, recent alarming epidemiologic reports
indicate a rise in HCV infection among young people throughout the
country. Some jurisdictions have noted that the number of people ages
15 to 29 being diagnosed with HCV infection now exceeds the number of
people diagnosed in all other age groups combined--a trend that is
following the prescription drug overdose epidemic and increasing use of
heroin in rural and suburban areas. NASTAD encourages the committee to
prioritize disproportionately impacted populations and increase funding
for primary prevention efforts.
As you contemplate the fiscal year 2016 Labor-Health-Education
Appropriations bill, we ask that you consider all of these critical
funding needs. We thank the Chairman, Ranking Member and members of the
Subcommittee, for their thoughtful consideration of our
recommendations. Our response to the HIV and hepatitis epidemics in the
United States defines us as a society, as public health agencies, and
as individuals living in this country. There is no time to waste in our
Nation's fight against these epidemics.
[This statement was submitted by Murray Penner, Executive Director,
National Alliance of State and Territorial AIDS Directors.]
______
Prepared Statement of the National Alliance on Mental Illness
Chairman Blunt and members of the Subcommittee, I am Mary
Giliberti, Executive Director of NAMI (the National Alliance on Mental
Illness). I am pleased today to offer NAMI's views on the
Subcommittee's upcoming fiscal year 2016 bill. NAMI is the Nation's
largest grassroots advocacy organization representing persons living
with serious mental illnesses and their families. Through our 1,100
affiliates in all 50 States, we support education, outreach, advocacy
and research on behalf of persons with mental illnesses such as
schizophrenia, manic depressive illness, major depression, severe
anxiety disorders and major mental illnesses affecting children.
An estimated 11.5 million American adults live with a seriously
disabling mental illness, such as schizophrenia, bipolar disorder, and
major depression. Based on estimates for 2010, mental disorders
accounted for 21.3 percent of all years lived with disability in the
United States. Among the top 20 causes of years lived with disability,
five were mental disorders: major depressive disorder (8.3 percent of
the total), anxiety disorders (5.1 percent), schizophrenia (2.2
percent), bipolar disorder (1.6 percent) and dysthymia (1.5 percent).
Suicide is the 10th leading cause of death for adults in the U.S. and
the third leading cause of death for adolescents, accounting for the
loss of more than 34,000 American lives each year, more than double the
number of lives lost to homicide. The social and economic costs
associated with these conditions are tremendous. A cautious estimate
places the direct and indirect financial costs associated with mental
illness in the U.S. at well over $300 billion annually, and it ranks as
the third most costly medical condition in terms of overall healthcare
expenditure, behind only heart conditions and traumatic injury.
Moreover, these costs are not only financial, but also human in
terms of lost productivity, lives lost to suicide and broken families.
Investment in mental illness research and services are--in NAMI's
view--the highest priority for our Nation and this Subcommittee.
National Institute of Mental Health (NIMH) Research Funding
As a member of the Ad Hoc Group for Medical Research Funding, NAMI
supports a $32 billion overall allocation for the National Institutes
of Health (NIH). This increase is needed to prevent the United States
from further falling behind China, India and other emerging nations in
terms of investments in scientific research. As you know, the President
is requesting a $56 million increase for the National Institute for
Mental Health (NIMH) for fiscal year 2016, boosting funding for the
agency to $1.489 billion. NAMI urges the Subcommittee to fund
investments beyond this amount with an overall higher allocation for
the entire NIH.
NAMI also supports the President's BRAIN Initiative (Brain Research
through Advancing Innovative Neurotechnologies) and the request for a
$70 million boost, up to $135 million. The BRAIN Initiative is a multi-
agency collaborative with a number of foundations designed to unleash
new technologies and undertake basic mapping of circuits and neurons in
the most complex organ in the human body.
Supporting the NIMH 2015 Strategic Plan
NAMI supports the new 5-year NIMH 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 eventually 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.
Accelerating the Pace of Psychiatric Drug Discovery
In NAMI's view, there is an urgent need for new medications to
treat serious mental illness. Existing medications can be helpful, but
they often have significant limitations; in some cases requiring weeks
to take effect; failing to relieve symptoms in a significant proportion
of patients; or, resulting in debilitating side effects. However,
developing new medications is a lengthy and expensive process. Many
promising compounds fail to prove effective in clinical testing after
years of preliminary research. To address this urgent issue, NAMI is
encouraging NIMH to accelerate the pace of drug discovery through an
`experimental medicine' approach to evaluate novel interventions for
mental illnesses. This ``fast-fail'' strategy is designed not only to
identify quickly candidates that merit more extensive testing, but also
to identify targets in the brain for the development of additional
candidate compounds. Through small trials focused on proof-of-concept
experimental medicine paradigms, we can make progress to demonstrate
target engagement, safety, and early signs of efficacy.
Advancing Services and Intervention Research
NAMI enthusiastically supports the NIMH Recovery After an Initial
Schizophrenia Episode (RAISE) Project, aimed at preventing the long-
term disability associated with schizophrenia by intervening at the
earliest stages of illness. The RAISE Early Treatment Program (RAISE
ETP) will conclude this year. The RAISE Connection Program has
successfully integrated a comprehensive early intervention program for
schizophrenia and related disorders into an existing medical care
system. This implementation study is now evaluating strategies for
reducing duration of untreated psychosis among persons with early-stage
psychotic illness. When individuals with schizophrenia and bipolar
disorder progress to later stages of their illness, they become more
likely to develop--and die prematurely--from medical problems such as
heart disease, diabetes, cancer, stroke, and pulmonary disease than
members of the general population. NIMH funded research is
demonstrating progress advancing the health of people with serious
mental illness. NIMH needs to advance this research to large-scale
clinical trials aimed at reducing premature mortality with people
living with serious mental illness.
Investing in Early Psychosis Prediction and Prevention (EP3)
As many as 100,000 young Americans experience a first episode of
psychosis (FEP) each year. The early phase of psychotic illness is a
critical opportunity to alter the downward trajectory and social,
academic, and vocational challenges associated with serious mental
illnesses such as schizophrenia. The timing of treatment is critical;
short- and long-term outcomes are better when individuals begin
treatment close to the onset of psychosis. Unfortunately, the majority
of people with mental illness experience significant delays in seeking
care--up to 2 years in some cases. Such delays result in periods of
increased risk for adverse outcomes, including suicides, incarceration,
homelessness and in a small number of cases, violence.
NIMH-funded research has focused on the prodrome, the high-risk
period preceding the onset of the first psychotic episode of
schizophrenia. Through the North American Prodrome Longitudinal Study
(NAPLS) and other studies focused on early prediction and prevention of
psychosis, NIMH has launched the Early Psychosis Prediction and
Prevention (EP3) initiative. EP3 is showing promise in detecting risk
States for psychotic disorders and reducing the duration of untreated
psychosis in adolescents that have experienced FEP.
Advancing Precision Medicine
NAMI supports efforts at NIMH to translate basic research findings
on brain function into more person-centered and multifaceted diagnoses
and treatments for mental disorders. The Research Domain Criteria
(RDoC) is showing promise toward efforts to build a classification
system based more on underlying biological and basic behavioral
mechanisms than on symptoms. Through continued development, RDoC should
begin to give us the precision currently lacking with traditional
diagnostic approaches to mental disorders.
Funding for Programs at SAMHSA's Center for Mental Health Services
(CMHS)
As noted above, the costs of untreated mental illness to our Nation
are enormous--as high as $300 billion when taking into account lost
wages and productivity and other indirect costs. These costs are
compounded by the fact that across the Nation States and localities
devote enormous resources addressing the human and financial costs of
untreated mental illness through law enforcement, corrections, homeless
shelters and emergency medical services. This phenomenon of ``spending
money in all the wrong places'' is tragic given that we have a vast
array of proven evidence-based interventions that we know work such as
assertive community treatment (ACT), supported employment, family
psycho-education and supportive housing.
NAMI supports programs at the Center for Mental Health Services
(CMHS) at SAMHSA that are focused on replication and expansion of these
evidence-based practices that serve children and adults living with
serious mental illness. The most important of these programs is the
Mental Health Block Grant (MHBG). NAMI is extremely grateful for the
increases in funding for the MHBG that this Subcommittee has made in
recent years, boosting funding from $420 million in fiscal year 2010,
up to its current level of $482.5 million in fiscal year 2015. This
increase has been important to helping States fills gaps in services
that have occurred as States cut more than $4 billion from State mental
health budgets since the recession began in 2008.
NAMI also supports the 5 percent set aside in the in the MHBG that
this Subcommittee enacted in fiscal year 2014 for early intervention in
psychosis. 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 decision-making--
which NAMI strongly supports--with the recipient of services taking an
active role in determining treatment preferences and recovery goals.
In 2014, CMHS issued guidance to the States specifying that funding
as part of the 5 percent set aside must be used for those who have
developed the symptoms of early serious mental illness, not for
``preventive intervention for those at high risk of serious mental
illness.'' NAMI supports this guidance and we recommend that the
Subcommittee continue this 5 percent set aside for FEP in fiscal year
2016 and beyond. It is critically important for Congress to continue
supporting the establishment of evidence-based FEP programs in all 50
States.
NAMI also recommends the following priorities for CMHS for fiscal
year 2016:
--Continuation of the Children's Mental Health program at $117
million,
--$10 million in new funding in the President's request for Crisis
Systems, an initiative to support States and communities in
developing mental health crisis-response systems with ongoing
outpatient services and supports,
--A $2 million increase for suicide prevention activities at CMHS,
including funding for the Garrett Lee Smith Memorial Act.
--$15 million in funding for States and localities as part of the
Assisted Outpatient Treatment (AOT) pilot program as authorized
by Congress in Section 224 of Public Law 113-93). We strongly
believe that this funding should be used to study the
effectiveness of a variety of approaches to engaging people
with serious mental illness in treatment, including voluntary
approaches for engaging people before they reach the point of
requiring court-based interventions.
Addressing Early Mortality and Serious Mental Illness, Integrating
Primary and Behavioral Health Care
The CMHS Primary Behavioral Health Care Integration (PBHCI) program
supports community behavioral health and primary care organizations
that partner to provide essential primary care services to adults with
serious mental illnesses. Because of this program, more than 33,000
people with serious mental illnesses and substance use disorders are
screened and treated at 126 grantee sites for diabetes, heart disease,
and other common and deadly illnesses in an effort to stem the alarming
early mortality rate from these health conditions in this population.
NAMI urges the Subcommittee to reject the President's proposal to cut
this program by $23 million in fiscal year 2016 and fund the PBHCI at
$50 million.
Addressing the Needs of Homeless Individuals Living with Serious Mental
Illness
On any given night, according to 2013 data, 610,042 people are
homeless, and 15 percent of these individuals are defined as long-term
or chronically homeless. Years of reliable data and research
demonstrate that, for single individuals with complex needs due to
serious mental illness, the most successful intervention for ending and
preventing homelessness is linking housing to appropriate support
services. Although there is a need for more affordable housing, funding
the supportive services is even more difficult. SAMHSA homeless
programs fill a gap created by a preference of HUD to fund housing
rental assistance and capital needs. HHS must take responsibility to
fund the critically important services that are necessary for programs
to be effective. Unfortunately, in 2014 SAMHSA was not able to award
any new community-based services grants. The current fiscal year 2015
funding level of SAMHSA homeless programs is $74 million, divided
between CMHS and CSAT. NAMI supports an increase for this joint program
up to $100 million, equally divided between CMHS and CSAT.
NAMI also supports funding for the PATH program (Projects for
Assistance in Transition from Homelessness) that allocates funds by
formula to States to serve homeless people with serious mental illness.
Eligible services include outreach, screening and diagnosis,
habilitation and rehabilitation, community mental health services,
substance abuse treatment, case management, residential supervision,
and housing. PATH supported programs reached over 192,000 people in
fiscal year 2014. Of these, 65 percent were unsheltered at the time of
engagement, 42 percent were not engaged in mental illness treatment and
53 percent had co-occurring substance use disorders. NAMI recommends at
least $75 million for the PATH program for fiscal year 2016 (the
authorized amount). In fiscal year 2015, the PATH program is funded at
$64.6 million.
Conclusion
Chairman Blunt, thank you for the opportunity to share NAMI's views
on the Labor-HHS-Education Subcommittee's fiscal year 2016 bill. NAMI's
consumer and family membership thanks you for your leadership on these
important national priorities.
[This statement was submitted by Mary Giliberti, Executive
Director, National Alliance on Mental Illness.]
______
Prepared Statement of the National Alopecia Areata Foundation
Chairman Blunt and distinguished members of the Subcommittee, thank
you for your time and your consideration of the priorities of the
community of individuals affected by alopecia areata as you work to
craft the fiscal year 2016 L-HHS Appropriations Bill.
about alopecia areata
Alopecia areata is a prevalent autoimmune skin disease resulting in
the loss of hair on the scalp and elsewhere on the body. It usually
starts with one or more small, round, smooth patches on the scalp and
can progress to total scalp hair loss (alopecia totalis) or complete
body hair loss (alopecia universalis).
Alopecia areata affects approximately 2.1 percent of the
population, including more than 6.5 million people in the United States
alone. The disease disproportionately strikes children and onset often
occurs at an early age. This common skin disease is highly
unpredictable and cyclical. Hair can grow back in or fall out again at
any time, and the disease course is different for each person. In
recent years, scientific advancements have been made, but there remains
no cure or indicated treatment options.
The true impact of alopecia areata is more easily understood
anecdotally than empirically. Affected individuals often experience
significant psychological and social challenges in addition to the
biological impact of the disease. Depression, anxiety, and suicidal
ideation are health issues that can accompany alopecia areata. The
knowledge that medical interventions are extremely limited and of minor
effectiveness in this area further exacerbates the emotional stresses
patients typically experience.
about the 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 prestigious Research
Advisory Councils. Founded in 1981, NAAF is widely regarded as the
largest, most influential, and most representative foundation
associated 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.
Recently, 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 (Award Number HHSN268200682279C);
NAAF took over responsibility 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 November 2012
Alopecia Areata Research Summit featuring presentations from the Food
and Drug Administration (FDA) and NIAMS.
deidre's story
It has been 15 years since I first found the bald patch on my head
that would completely change the course of my life. As a student at
Florida State University during my junior year I found a perfectly
round bald patch while blow-drying my very thick long hair--my pride
and joy! Little did I know then the significant effect alopecia areata
would have on my life.
I followed the typical patient profile for this disease. I started
with one patch the size of a 50 cent piece, which later evolved into
patches of varying sizes all over my head, and then to total loss of
all scalp hair, which progressed to the most severe form of the
disease: total loss of all body hair including my scalp, eyebrows,
eyelashes, etc. Recently, my hair has inexplicably started to grow back
in a very patchy and strange fashion on my head, while most of my body
still remains hairless; a perfect example of the completely
unpredictable course of this disease, which can cause significant
emotional turmoil and distress for the sufferer.
As a professional woman, this disease has had a severe impact on my
life. I have to present a confident image to the outside world. Living
in constant fear of being discovered as a bald woman, being thought to
be sick, bizarre, or worse has always been on the forefront of my mind.
The exorbitant cost for treatments such as cortisone injections,
extremely painful with questionable efficacy, has been an issue for me
along with the expensive cranial prosthetics. Over the course of the
years these have cost me thousands of dollars. If a lawyer like myself
has financial difficulty when it comes to paying for treatments and
prosthetics (which are not covered by insurance due to lack of CMS
coverage benefits for those with alopecia areata), can you imagine the
plight facing those patients that live on limited or fixed income?
The fact that there is so little known about the causes or possible
treatments/cure for this disease only adds to the pain and suffering.
This is a disease that alters the way you see yourself and the way the
outside world treats you, and also causes significant and often
debilitating emotional distress. The fact that there is little that can
currently be done adds to that pain and suffering. Patients face a
bleak outlook. For me, it has been a constant battle. I have not lived
a single moment in the 5,475 days since that I have not looked in the
mirror and wanted to scream or cry, not a single day that I haven't
thought that I am damaged, abnormal, or ugly because of my hair loss,
not a single day that I haven't worried about how a client, colleague,
friend, or love-interest might see and judge me. Many will say to me
that ``it is only hair'' or ``at least it's not cancer.'' These
comments only frustrate and upset me more. The feelings of being
ostracized as an outcast can become deafening, even for a confident,
intelligent professional. I shudder to think how others who don't
possess my strength of character handle the stresses of this disease.
It is only with additional funding for research that we might hope
to improve the lives of the millions in the U.S. living with alopecia
areata. Few have even heard of the disease. That fact alone creates
additional stresses and difficulties for those of us with the disease,
constantly having to explain what is ``wrong'' with us. Increased
research into viable treatment options and a potential cure could
significantly impact millions of lives, from small children to adults,
facing the constant battle that comes from a total loss of self image
and confidence.
I thank you on behalf of myself and of the entire alopecia areata
community for consideration of NAAF's requests.
sequestration
We have heard from the medical research community that
sequestration and deficit reduction activities have created serious
issues for Federal funding opportunities and the career development
pipeline. In order to ensure that research into alopecia areata, skin,
and autoimmune disorders can continue to move forward, and, more
importantly, to ensure that our country is adequately preparing the
next generation of young investigators, we urge you to avert, mitigate,
or otherwise eliminate the specter of sequestration. While the
Foundation has anecdotal accounts of the harms of sequestration, the
Federated American Societies for Experimental Biology has reported:
--In constant dollars (adjusted for inflation), the NIH budget in
fiscal year 2013 was $6 billion (22.4 percent) less than it was
in fiscal year 2003.
--The number of competing research project grants (RPGs) awarded by
NIH has also fallen sharply since fiscal year 2003. In fiscal
year 2013, NIH made 8,283 RPG awards, which is 2,110 (20.3
percent) less than in fiscal year 2003.
--Awards for R01-equivalent grants, the primary mechanism for
supporting investigator-initiated research, suffered even
greater losses. The number awarded fell by 2,528 (34 percent)
between fiscal year 2003 and fiscal year 2013.
The pay line for some NIH funding mechanisms has fallen from 18
percent to 10 percent while the average age for a researcher to receive
their first NIH-funded grant has climbed to 42. These are strong
disincentives to choosing a career as a medical researcher. Our
scaling-back is occurring at a time when many foreign countries are
investing heavily in their biotechnology sectors. China alone plans to
dedicate $300 million to medical research over the next 5 years; this
amount is double the current NIH budget over the same period of time.
Scientific breakthroughs will continue, but America may not benefit
from the return-on-investment of a robust biotechnology sector. For the
purposes of economic and national security, as well as public health,
the Foundation asks that you work with your colleagues to eliminate
sequestration and recommit to supporting this Nation's biomedical
research enterprise.
national institutes of health
NIH hosts a modest alopecia areata research portfolio, and the
Foundation works closely with NIH to advance critical activities. NIH
projects, in coordination with the Foundation's TDP, have the potential
to identify biomarkers and develop 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 lead to NIAMS providing a
research grant to the researchers at Columbia to continue this work. In
this regard, please provide NIH with meaningful funding increases to
facilitate growth in the alopecia areata research portfolio.
One exciting emerging opportunity is the new Accelerating Medicines
Partnership (AMP) that was recently announced by NIH. This effort is
outcomes-oriented and based on a public private-partnership model.
Industry, patient organizations, and researchers work together to
conduct research with the goals of improving treatments and diagnostic
tools. Rheumatoid arthritis is one of the diseases being examined in
the first round of study, which should generate opportunities for
alopecia areata due to the similarities between the conditions. Please
support AMP and encourage NIH to expand activities in this area,
particularly when there is research overlap between conditions
additional activities
FDA nominated alopecia areata as a potential condition for specific
review through the Patient-Focused Drug Development Initiative (PFDDI).
This is because many of the impacts of alopecia areata have to be
reported by patients and cannot be measured biologically. While we
appreciate that FDA falls under the guise of the Agriculture
Appropriations Subcommittee, we ask that you work with your colleagues
on the Appropriations Committee to support this important program.
Further, FDA should be encouraged to review all originally-nominated
conditions in a timely manner so the PFDDI can continue to move
forward.
Additionally, Congressman Jared Huffman (D-CA-2nd) is working with
the community on introducing a bill that will allow for Medicaid to
cover a significant portion of the cost of a cranial prostheses when a
doctor deems it medically necessary. The disease can be incredibly
debilitating not only physically and psychologically but financially as
well. This bill is designed to help lessen the burden placed upon those
effected by the disease. Please consider cosponsoring the bill when it
is introduced.
Thank you for your time and your consideration of the community's
requests.
______
Prepared Statement of the National Association of Clinical Nurse
Specialists
The National Association of Clinical Nurse Specialists (NACNS) is
the voice of more than 70,000 clinical nurse specialists (CNSs). CNSs
are licensed registered nurses 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 $244 million in fiscal year 2016.
According to the Bureau of Labor Statistics (BLS), the registered
nurse (RN) workforce will grow 19.4 percent from 2012 to 2022,
outpacing the 11 percent average for most other occupations. BLS also
projects that this growth will result in 1,052,600 job openings,
representing one of the largest numeric increases for all occupations.
With technological advancements driving growth in treatments,
preventive care being emphasized more, expanding demand from new health
reform enrollments, and accelerating demand from the two million Baby
Boomers aging into Medicare every year, these are the factors fueling
this projected increase in new RN jobs. A particularly alarming element
of the probable RN job openings is the anticipated loss of nursing
expertise due to the need to replace some 525,700 jobs vacated by RNs
who are expected to leave the profession and/or retire from the labor
force by 2022.
BLS notes that the healthcare sector is a critically important
industrial complex for the Nation. It is at the center of the economic
recovery with the number of jobs climbing steadily. Growing even when
the recession began in December 2007, healthcare jobs are up
nationwide. Nearly five million workers are in hospital settings, which
often are the largest employer in a State. Healthcare has been a
stimulus program generating employment and income, and nursing is the
predominant occupation in the healthcare industry with more than 4.265
million active, licensed RNs in the United States in 2015.
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.
The current Federal funding falls short of the healthcare
inequities facing our Nation today. Absent consistent support, slight
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 more than 15-year nurse and nurse faculty
shortage felt throughout the U.S. health system.
NACNS believes that the deepening health inequities, inflated
costs, and poor quality of healthcare outcomes in this country will not
be reversed until the concurrent shortages of nurses, advanced practice
registered nurses, 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, an under resourced nurse
education and its adverse effect in healthcare generally will be
difficult to avoid.
In closing, NACNS urges the subcommittee to maintain the Title VIII
Nursing Workforce Development Programs by funding them at a level of
$244 million in fiscal year 2016.
[This statement was submitted by Peggy Barksdale, MSN, RN, OCNS-C,
CNS-BC, President, National Association of Clinical Nurse Specialists.]
______
Prepared Statement of the National Association of Community Health
Centers
introduction
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee: on behalf of our Nation's health centers, we wish to
thank you for the opportunity to submit testimony for the record as the
committee begins its work on the fiscal year 2016 Labor-Health and
Human Services-Education and Related Agencies Appropriations bill.
health centers-general background
Health centers are community-owned and operated non-profit entities
providing primary medical, dental, and behavioral healthcare as well as
pharmacy and a variety of enabling and support services. This year
marks a momentous occasion in health center history as we celebrate 50
years since the first health centers opened their doors in Boston and
the Mississippi Delta. Today, what began as a small demonstration
project has evolved into the largest and most successful primary
healthcare system in the United States. Now, there are nearly 1,300
health centers operating in more than 9,000 urban and rural communities
nationwide, serving as the ``healthcare home'' for more than 22 million
patients including nearly 7 million children and more than 268,000
veterans. Health centers operate in all 50 States and nearly every
Congressional district.
By statute and mission, health centers are located in medically
underserved areas (or serve medically underserved populations) and are
governed by patient-majority boards to ensure they are responsive to
the needs of each individual community they serve. Health centers offer
comprehensive care to all residents of the community who seek their
care, regardless of ability to pay or insurance status and offer
services on a sliding fee scale. Health centers' unique model of care
has enabled us to save the entire health system approximately $24
billion annually. Health center care reduces preventable
hospitalizations and emergency department (ED) use, as well as the need
for more expensive specialty care. The services provided at health
centers save $1,263 per patient per year compared to expenditures for
non-health center users.
In addition to reducing costs, health centers also serve as small
businesses and economic drivers in their communities. Health centers
employ 156,000 individuals and generate an estimated $26.5 billion in
needed economic activity for communities that need it the most.
fiscal year 2015 funding background
In fiscal year 2015, health centers received a total of $5.1
billion in total Federal funding. This includes $1.49 billion in
discretionary funding provided by the Health Resources and Services
Administration (HRSA) and $3.6 billion in mandatory funding for health
centers through the final year of the Health Center Fund. We want to
thank the members of this Subcommittee for their strong support of
health centers within the Consolidated and Further Continuing
Appropriations Act of 2015 to ensure health center funding reaches
communities in need.
health center funding cliff and fiscal year 2016 funding request
On September 30, 2015, unless Congress acts, the Health Center Fund
will expire. We refer to this as the ``health center funding cliff.''
The Health Center Fund is one portion of the two Federal funding
streams available to health centers, and in fiscal year 2015 the fund
represents approximately 70 percent of the total funding made available
to health centers by Congress. Failure to continue this funding would
prove to be devastating to the program. A recent report issued by
NACHC, entitled Community Health Centers: Past, Present and Future:
Building on 50 Years of Success, reveals the funding cliff would cause
7.4 million patients to lose access to care at their local health
center. Nearly 57,000 clinicians and staff would also lose their jobs.
These reductions would take place in the first year alone and would be
compounded in future years. In this scenario, every health center in
more than 9,200 communities nationwide would be affected, and the
funding cut would force health centers to close sites, reduce staff, or
discontinue services. HHS Secretary Burwell emphasized these
consequences in recent testimony, where she warned that in addition to
the job losses, the cliff would lead to more than 2,000 health center
site closures.
With these potential consequences in mind, that Health Centers are
respectfully requesting Congress and this Subcommittee work to ensure
funding for the Health Centers Program remains whole and does not
sustain any funding reductions in fiscal year 2016. Continued funding
for the Health Centers Program at the fiscal year 2015 program level of
$5.1 billion will preserve and continue the high quality cost-effective
primary care offered today at health centers across the country. If the
Subcommittee chooses to keep discretionary funding level with the
fiscal year 2015 discretionary allocation of $1.49 billion for Health
Centers in fiscal year 2016, we would request you work collaboratively
with the Senate HELP and Finance Committees to avert the $3.6 billion
shortfall related to the expiration of the Health Center Fund.
There have been clear signs over the last year that Congress wants
to address the funding cliff. 250 House members and 66 Senators signed
letters to Congressional leaders highlighting the important role of
health centers and calling for a bipartisan solution to this
precipitous drop in funding. The Senate letter was led by you, Chairman
Blunt and we especially want to thank you for your leadership on this
issue. Legislatively, the House has acted to address the Health Center
Funding cliff by extending the Health Center Fund for an additional 2
years as part of H.R. 2, the Medicare and CHIP Reauthorization Act of
2015. We view H.R. 2 as one of the very few opportunities to address
the funding cliff this year without complicating or severely impacting
the discretionary appropriations process due to the budget caps. If the
Senate does not act to swiftly pass H.R. 2, access to healthcare for
millions of people--including 4.3 million women and 2.5 million
children--will be lost in a few short months. We strongly urge you to
stand with the House and vote in support of H.R. 2.
conclusion
We understand this Subcommittee must make difficult budgetary
decisions as you work within the funding limits set for the
subcommittee's bill. As the fiscal year 2016 appropriations process
moves forward, we urge you to keep the potential impact of the funding
cliff in mind. Not only is access to healthcare for current health
center patients at risk, but those 62 million Americans who still lack
regular access to primary care and may be seeking care at health
centers will certainly have no place to go. Without access to their
local health center, many individuals located in medically underserved
communities will seek care in emergency departments and hospitals,
often waiting until they are sicker get treatment. This will mean
poorer health for these patients and much higher costs to the system.
With our unique model of care, Health Centers can help address
these primary care demands in a cost effective manner. However, Health
Centers cannot continue to deliver results without a sound financial
base and continued future certainty. We are extremely grateful for your
past support and ask for the Subcommittee's continued support for the
Health Center program. We look forward to working with you and thank
you for your consideration.
[This statement was submitted by Daniel R. Hawkins, Jr., Senior
Vice President, Public Policy and Research, National Association of
Community Health Centers.]
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 2,800 local health departments across the
country. City, county, metropolitan, district, and tribal health
departments work to ensure the public's health and safety. On behalf of
local health departments, NACCHO submits the following requests:
Public Health Emergency Preparedness--Centers for Disease Control and
Prevention (CDC)
NACCHO urges the Subcommittee to provide $675 million for the
Public Health Emergency Preparedness (PHEP) cooperative agreements in
fiscal year 2016. Recently, health departments have responded to the
threat of infectious diseases like Ebola and measles and more severe
and frequent weather events. Emergency Federal funding to respond to
the unexpected threat of Ebola is much appreciated. However, sustained
funding to support local preparedness and response capacity is needed
to make sure that every community is prepared for disaster. A majority
of local health departments rely solely on Federal funding for
emergency preparedness. PHEP protects communities by providing funding
to strengthen local and State public health departments' capacity and
capability to effectively respond to public health emergencies
including terrorist threats, infectious disease outbreaks, natural
disasters, and biological, chemical, nuclear, and radiological
emergencies.
Hospital Preparedness Program--Assistant Secretary for Preparedness
and Response (ASPR)
The experience of responding to Ebola shows the importance of
seamless public health and hospital collaboration. NACCHO urges
Congress to begin restoring funding to the Hospital Preparedness
Program (HPP) by increasing it to $300 million in fiscal year 2016. HPP
is vital because this program provides grant funding to build
healthcare coalitions that enhance regional and local hospital
preparedness and improve overall surge capacity. NACCHO also urges
Congress to request information from ASPR on how State HPP funding is
distributed, including how much is allocated to local health
departments and on what basis or formula each State allocates funds.
Medical Reserve Corps--ASPR
In 2002, the Medical Reserve Corps (MRC) was created after the
terrorist attacks of 9/11 to establish a way for medical, public
health, and other volunteers to address local health and preparedness
needs. These highly skilled volunteers include doctors, dentists,
nurses, pharmacists, and other community members. The program is
comprised of 200,000 volunteers enrolled in 1,000 units in all 50
States and territories. Two-thirds of MRC units are coordinated by
local health departments. NACCHO opposes the President's proposed cut
to MRC and requests $11 million in funding in fiscal year 2016 to
restore the program's funding to that of fiscal year 2014.
Section 317 Immunization Program--CDC
Immunizations continue to be one of the most cost-effective public
health interventions. In an effort to prevent and control the spread of
infectious diseases, the promotion of vaccinations is needed more now
than ever. During the 2014 measles outbreak the United States
experienced a record number of cases, with 644 cases from 27 States,
according to CDC. The rapid spread of this disease illustrates the need
for a strong public health immunization infrastructure to prevent
disease in both children and adults. The 317 Immunization Program funds
vaccine purchase for at-need populations and immunization program
operations, including support for implementing billing systems for
immunization services at public health clinics to sustain high levels
of vaccine coverage. NACCHO opposes the President's $50 million cut in
fiscal year 2016 and supports the $8 million included in the
President's budget to build health department capacity for billing.
Foundational Capacities--CDC
Foundational capacities is a new program to strengthen public
health practice at State and local health departments and build core
capacity in alignment with national accreditation standards. As
healthcare and public health agencies become more interconnected, it is
essential that local health departments have the necessary capacity to
engage in population health improvement. Therefore, NACCHO supports the
President's request of $8 million for the Foundational Capacities
Program.
Chronic Disease--CDC
NACCHO appreciates efforts made by the Subcommittee to ensure that
chronic disease funding reaches the local level, where behavior and
environments that prevent chronic disease are implemented. NACCHO
encourages continuation of this approach.
Partnerships to Improve Community Health.--NACCHO urges the
Subcommittee to provide $80 million to support the Partnerships to
Improve Community Health program in fiscal year 2016. Grantees lead
efforts to reduce tobacco use, increase physical activity and expand
access to nutrition in order to reduce the prevalence of chronic
diseases, such as heart disease and diabetes, through collaboration
with community partners and businesses. These efforts complement the
other CDC chronic disease programs listed below.
Heart Disease and Stroke Prevention.--NACCHO urges the Subcommittee
to continue to support Heart Disease and Stroke Prevention at $130
million in fiscal year 2016. The Heart Disease and Stroke Prevention
program supports evidence-based programs to reduce disease. It requires
States to fund local health departments to target at risk populations
and promote healthy eating and exercise and reduce sodium intake, which
can lead to high blood pressure and heart disease.
Diabetes Prevention.--NACCHO urges the Subcommittee to continue
support for Diabetes Prevention at $150 million in fiscal year 2016.
Diabetes affects more than 20 million people and can cause serious
health complications including heart disease, blindness, kidney
failure, and amputations. New funding in fiscal year 2015 to 21 States
and four cities requires States to fund local health departments to
target at risk populations and implement evidence-based approaches to
support diabetes self-management education and lifestyle change.
Prevention and Public Health Fund (HHS)
In fiscal year 2016, NACCHO requests $1 billion for the Prevention
and Public Health Fund (PPHF). The PPHF supports core public health
programs such as immunization, chronic disease prevention, lead
poisoning prevention, and early and rapid detection of diseases and
injury.
In conclusion, thank you for your attention to these
recommendations for programs that protect the public's health and
safety.
______
Prepared Statement of the National Association of Foster Grandparent
Program Directors
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to submit this testimony in support of fiscal year 2016
funding for the Foster Grandparent Program (FGP), the oldest and
largest of the three programs known collectively as the National Senior
Volunteer Corps, or ``Senior Corps,'' which are authorized by Title II
of the Domestic Volunteer Service Act (DVSA) of 1973, as amended and
administered by the Corporation for National and Community Service
(CNCS). This year the Foster Grandparent Program is celebrating its 50
year anniversary. I respectfully request that the Subcommittee provide
at least $107,702,000 for FGP in fiscal year 2016. The National
Association of Foster Grandparent Program Directors (NAFGPD) is a
membership-supported professional organization who administers Foster
Grandparent Programs nationwide, as well as local sponsoring agencies
and others who value and support the work of FGP.
Mr. Chairman, I would like to begin by thanking you and the
distinguished Members of the Subcommittee for your steadfast support of
the Foster Grandparent Program. No matter what the circumstances, this
Subcommittee has always been there to protect the integrity and mission
of our program. Our volunteers and the children they serve across the
country are the beneficiaries of your commitment to FGP, and for that
we thank you. However, your help and support are still needed today.
The Administration's fiscal year 2016 Budget Request would reduce
funding for FGP by $1,550,000 million. The FGP has seen a 10 percent
reduction in funding over the past 5 years. Even with this reduced
level of funding, we continue to serve at-risk youth and seniors across
the Nation. However, if our funding continues to be cut, it will
greatly impact those individuals who we serve.
For 50 years, the Foster Grandparent Program has made efficient use
of Federal dollars to make real changes in children's lives. FGP has
thousands of supporting organizations in communities across the
country. The program has never been accused of mismanagement or waste,
and has garnered respect from both Republicans and Democrats alike.
A 2006 national performance measurement survey of the Foster
Grandparent program found that 81 percent of children served
demonstrated improved academic performance; 90 percent demonstrated
increased self-image; 56 percent improved school attendance and 59
percent were reported to have a reduction in risky behavior.
Foster Grandparent Programs represent the best in Federal
partnerships with local communities, with Federal dollars flowing
directly to local sponsoring agencies, which in turn determine how the
funds are used. Foster Grandparent Programs have forged partnerships
with thousands of community organizations that value and support the
Foster Grandparents' service. FGP serves local communities in a high
quality, efficient and cost-effective manner, saving local communities
money by helping our older volunteers stay independent and healthy and
out of expensive in-home or institutional care. The value local
communities place on FGP and its multifaceted services is evidenced by
the large amount of cash and in-kind donations contributed by
communities to support FGP.
The relationships between FGP volunteers and the children they
serve is so extremely special. FGP has been creating meaningful, life-
changing bonds between seniors and children for almost 50 years. This
has been incredibly effective for these children, and will continue to
be as long as FGP is continued to be funded at its current level.
Mr. Chairman, in closing I would like reiterate NAFGPD's opposition
to the funding cut to the Foster Grandparents Program the President
Obama included in his fiscal year 2016 budget request because it would
result in fewer hours of service given to children who have special or
exceptional needs, who are at academic, social, or financial
disadvantage. I ask your Subcommittee to maintain level funding for
this very important program. 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.
FGP: An Overview.--The Foster Grandparent Program was established
in 1965 and was the first federally funded, organized program to engage
older volunteers in significant service to others. From the 20 original
programs based totally in institutions for children with severe mental
and physical disabilities, FGP now comprises 313 programs in every
State and the District of Columbia, Puerto Rico, and the Virgin
Islands. These programs are now primarily in community-based child
caring agencies or organizations, where most special needs children can
be found today, and are administered locally through a non-profit
organization or agency and Advisory Council comprised of community
citizens dedicated to FGP and its mission.
FGP: The Volunteers.--In fiscal year 2014, 25,190 FGP volunteers,
of whom 760 were veterans, contributed 23 million hours of service.
Foster Grandparents served 189,100 children and youth with exceptional
needs, including mentoring 110,300 children. 2,700 of these children
served were from military families. The value of this service is over
$500 million and represents more than a four-fold return on the Federal
dollars invested in FGP. The program gives Americans 55 years of age or
older, who are living on incomes at or less than 200 percent of the
poverty level, the opportunity to serve 15 to 40 hours every week. FGP
provides intensive pre-service orientation and at least 48 hours of
ongoing training every year to keep volunteers current and informed on
how to work with children who have special needs. Through their
service, our FGP volunteers say they feel and stay healthier, that they
feel needed and productive. Most importantly, they leave to the next
generation a legacy of skills, perspective and knowledge that has been
learned through experience.
FGP: The Children.--FGP also provides person-to-person service to
children and youth under the age of 21 who have special or exceptional
needs, many of whom face serious, often life-threatening challenges.
With the changing dynamics in family life today, many children with
disabilities and special needs lack a consistent, stable adult role
model in their lives. The Foster Grandparent is very often the only
person in a child's life who is there every day, who accepts the child,
encourages him/her no matter how many mistakes the child makes, and
focuses on the child's successes.
[This statement was submitted by Kristen Tracy, President, National
Association of Foster Grandparent Program Directors.]
______
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 Department of
Health and Human Services' proposed increase of $59.9 million for Older
Americans Act Title III(C) senior nutrition programs.
Older Americans Act 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. As
the Administration for Community Living (ACL) Congressional
Justification States, studies have found that 50 percent of all persons
age 85 and over need help with instrumental activities of daily living,
including obtaining and preparing food. Older Americans Act nutrition
programs address these concerns. Thus, these meal recipients are able
to remain independent in their homes and communities and are not forced
into hospitals or nursing homes due to an inability to maintain a
proper diet.
In addition, for participants in the congregate program in
particular, the nutrition programs provide a daily opportunity for
socialization, preventing isolation and promoting health and wellness.
For home-delivered meals recipients, their delivery driver may be the
only person they see all day--this wellness check is also key to their
health.
In fiscal year 2014 and fiscal year 2015, Older Americans Act Title
III(C) programs received appropriations in the amount of $814.6
million. Though we are thankful that this represents an increase from
fiscal year 2013, unfortunately, this does 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 President's fiscal year 2016 funding request includes:
--$39.9 million for congregate and home-delivered meals
--$20 million for evidence-based demonstration grants
The additional $39.9 million for congregate and home-delivered
meals would allow ACL to maintain the total number of meals projected
to be provided in fiscal year 2015. This does not keep up with the
growing demand for services, but it would at least prevent further
reductions in services. As we saw in fiscal year 2013 when
sequestration was in effect, our programs had lengthy wait lists and
some sites even closed for lack of funding. One program created its
first wait list in over 90 years of operation. We cannot afford to
continue to backslide, especially as another round of sequestration
looms on the horizon.
Further, these services are designed to target those in the
``greatest social and economic need,'' according to the Older Americans
Act and to actual practice in the field. According to ACL studies,
approximately two-thirds of home-delivered meal recipients have annual
incomes of $20,000 or less. Sixty-two percent of these recipients
report that these meals represent at least half their food intake each
day. And yet, the Government Accountability Office found that only
about 9 percent of low-income older adults are even receiving meals
services. For a small investment, more at-risk older adults could
receive nutritious meals.
NANASP also supports evidence-based demonstration grants for senior
nutrition programs. It is important that programs be as modern as
possible and that all funds that these programs have are spent
effectively and wisely. Many programs are already using innovative and
cost-effective practices; they just need to be expanded and replicated
at the national level. Further, it is important to ensure that programs
are ready to meet the demands of the boomer population aging into
services as caregivers and recipients who are accustomed to different
ways of interacting with providers, such as ``apps,'' Facebook, and
websites.
Investing in these programs would be cost-effective because many
common chronic conditions such as hypertension, heart disease,
diabetes, and osteoporosis can be effectively prevented and treated
with proper nutrition. The Academy of Nutrition and Dietetics estimates
that 87 percent of older adults have hypertension, high cholesterol,
diabetes, or some combination of all of these. These seniors need
healthy meals, access to lifestyle programs, and nutrition education
and counseling to avoid serious medical care.
Data from ACL's National Survey of Older Americans Act Participants
shows that congregate and home-delivered meals recipients are
significantly less healthy than older adults in general. About 57
percent of congregate and 72 percent of home-delivered recipients have
five or more chronic conditions. About 32 percent of congregate and 51
percent of home-delivered recipients take over six medications per day
and some take as many as 30 medications.
Older adults who are not receiving proper meals can also become
malnourished and undernourished. This makes it harder for them to
recover from surgery and disease, makes it more difficult for their
wounds to heal, increases their risk for infections and falls, and
decreases their strength that they need to take care of themselves.
Malnourished older adults are more likely to have poor health outcomes
and to be readmitted to the hospital--their health costs can be 300
percent greater than those who are not malnourished on entry to the
healthcare system.
Access to Older Americans Act meals is essential to keeping these
older adults out of costly nursing facilities and hospitals. A senior
can be fed for a year for about $1,300. This $1,300 is the same as the
cost of a week in a nursing home or 1 day in the hospital. The cost
savings to Medicare and Medicaid that this creates cannot be over-
emphasized. One study estimates that for every dollar invested in the
Older Americans Act nutrition programs, Medicaid saves $50.
For over 40 years, the Older Americans Act nutrition programs have
been serving older adults who are frail, isolated, and in great need of
assistance. With more than 10,000 seniors turning 65 every day, now is
the time to provide a greater investment in these proven and cost-
effective programs.
Thank you for your past and future support.
[This statement was submitted by Ann Cooper, Chair, and Robert
Blancato, Executive Director, National Association of Nutrition and
Aging Services Programs.]
______
Prepared Statement of the National Association of RSVP Directors
I am Betty Ruth, President of the National Association of RSVP
Directors (NARSVPD). On behalf of NARSVPD, I appreciate the opportunity
to submit testimony about the funding level for the RSVP program that
is included in the Administration's fiscal year 2016 budget proposal.
RSVP is a senior volunteer program administered by the Corporation
for National and Community Service (CNCS). It provides opportunities
for people 55 and over to make a difference in their communities
through volunteer service. RSVP offers maximum flexibility and choice
to its volunteers. It matches the personal interests and skills of
older Americans 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
where 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 is not means tested and recruits volunteers without regard to
income. Most serve between 10 and 40 hours a week, but there is no set
schedule. Because they are retired, volunteers can meet needs that
occur during the 8-5 workweek, when offices are open for medical
appointments, tax aid, meal delivery and other basic human needs
categories. Who, other than RSVP volunteers are readily available to
take on those tasks?
RSVP is cost-effective. The average annual cost per volunteer is
$202. Independent Sector values an hour of volunteer service at $22.
Using this multiple, RSVP volunteers provide about $900 million 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 1, 20 percent in year 2, and 30 percent in year 3 and all
subsequent years. Grants are awarded for a period of up to 3 years.
RSVP volunteers improve the lives of their neighbors and friends
every day by meeting the needs of their communities. They help them
prepare their tax returns, provide needed transportation services,
offer respite to caregivers, deliver health and nutrition services,
support veterans and military families, volunteer in parks, participate
in disaster prevention and relief activities, and many other
activities. The key point is that RSVP is flexible and volunteers can
be recruited and deployed to meet a wide variety of community
challenges.
For example:
--At the Athens-Limestone County, Alabama RSVP, more than 350
volunteers provide transportation to veterans needing
assistance to medical visits and food shopping. RSVP volunteers
serve as school tutors assisting K--6th grade at-risk students
to improve math and reading skills during the school year.
Twenty-five IRS certified RSVP volunteers provide income tax
assistance annually to more than 2000 low income and elderly
taxpayers and 247 veterans and helped secure refunds of almost
$2.3 million. Returns are e-filed at no cost to the needy
taxpayers. Without this service many taxpayers would unable to
afford filing their tax returns. Locally this is a boost to the
economy. RSVP volunteers provide weekly respite for caregivers
of mentally and physically challenged family members. RSVP
volunteers continually provide transportation for the isolated
needy elderly and deliver meals to the homebound elderly.
--In Mississippi, the RSVP of Harrison County partners with many
nonprofit organizations including Shepherd of the Gulf to
address homelessness. Hundreds of Gulf Coast's homeless, many
of them veterans, camp out in the woods. RSVP volunteers
venture into the woods to distribute blankets, food, household
items, and other supplies to this population of homeless
campers. For many of these people, RSVP volunteers are their
only communication outside of the woods. RSVP volunteers
promote community participation and donations from Gulfport
citizens, and sponsor annual events this often-invisible
population, including Picnic in the Park, Thanksgiving in the
Woods, and Campers' Christmas. They distribute food, clothing,
and other items.
--In response to the need to address the food insecurity rate facing
the Baltimore region, Baltimore City RSVP and Baltimore County
RSVP partnered to create the Baltimore RSVP Hunger Corps. In
the Baltimore region the food insecurity rate for the region is
15.9 percent. In the Baltimore RSVP Hunger Corps volunteers are
solely dedicated to service that 1) increases the availability
of nutritious food to impoverished families; 2) increases the
capacity of organizations working to decrease food insecurity;
3) educates the public on nutrition and healthy eating
behaviors and; 4) improves access to nutritious food. Over 100
RSVP volunteers have served in the Baltimore region with
partner organizations such as the Maryland Food Bank and First
Corinthians Church. More than 5500 individuals or families
received food assistance such as food packages or emergency
food assistance in 2014. Additionally, over 39,000 seniors
received meals. These dedicated senior volunteers served nearly
10,000 hours.
RSVP expands the capacity of non-profit agencies and local and
county governments.
--RSVP of North Central Washington, a program of the Chelan Douglas
Community Action Council, serves six counties in North Central
Washington. RSVP volunteers work with local faith-based
organizations to provide weekend food to hungry school-age
students in the Wenatchee and East Wenatchee area. Starting
with two congregations matched with two local elementary
schools, the Packing Friendship program, with the support of
RSVP, has grown to 18 congregations serving 18 elementary
schools, providing food to approximately 325 students each
week. Participating congregations collect food donations from
their members and volunteers pack bags of food for needy
students in local elementary schools. RSVP has facilitated the
recruitment of congregations, matching congregations with local
elementary schools, and recruiting volunteers to participate in
the program. The program has created new sources of food for
the community, new volunteers, and new collaborations between
RSVP, local faith-based organizations, and local schools.
--The Southeast Missouri Area Agency on Aging RSVP partnered with the
Cape Girardeau Parks and Recreational Department on the 2014
Annual Friends of the Parks Day. More than 1,700 volunteers
removed three tons of debris in 12 areas of the town. They
helped clean and beautify the community by planting trees and
flowers, picking up trash, cleaning trails and creeks, removing
graffiti, recycling, and conserving natural resources. RSVP/VIC
provided 76 RSVP Volunteers to assist with this beautification
project. Cape Girardeau is one of the most highly impoverished
areas of the State of Missouri. RSVP volunteers also address
food security and hunger issues for more than 1,600
individuals.
RSVP efficiently deploys 232,000 volunteers in more 625 programs
that support the efforts of 38,000 community organizations across the
Nation. In fiscal year 2014, RSVP volunteers delivered an estimated
40.4 million hours of service in their communities. Working through
such networks as Area Agencies on Aging, city and county governments,
local United Way organizations, social service agencies, faith-based
organizations, and many others, 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; engaged 20,100
veterans who served as RSVP volunteers and leveraged an additional
18,500 volunteers to support RSVP activities such as delivering meals
to those in need and tutoring at-risk children.
RSVP helps seniors to live independently in two ways: volunteering
helps keep seniors vibrant and RSVP volunteers help meet the needs of
seniors to keep them in their homes.
--RSVP of Clay, Effingham, Moultrie, and Shelby Counties, sponsored
by CEFS Economic Opportunity Corporation in Illinois has 85,044
individuals aged 65 and above, many of whom are living alone.
Many of these individuals are disabled or have health issues
that prevent them from driving or preparing meals on their own.
RSVP partnered with 12 area organizations to provide meals and
companion services to more than 600 at- risk seniors. Five days
each week, 215 RSVP volunteers delivered meals and visited with
613 frail, elderly clients. The result of this intervention is
55 percent or 337 seniors reported that they had increase
social support due to the service of RSVP volunteers and 100
percent of the seniors said the extra meals were necessary for
them to stay independent.
Keeping seniors productively engaged and out of adult day care
saves them and their families substantial expense. The cost of a semi-
private room in a nursing home (national annual median rate) is
$75,555. The national annual median rate for a private room is $83,950.
(See Genworth Financial, Cost of Care Survey 2013). In many States, it
costs more to put one senior in a nursing home than it does to support
an entire RSVP program for a whole year. The average Federal RSVP grant
is about $75,000.
RSVP has the largest rural footprint of any CNCS program and is an
important source of disaster relief services in many communities.
--In Rhode Island, The East Bay RSVP service area runs along
Narragansett Bay and the Atlantic Ocean. It is imperative to
have trained volunteers in this service area should disaster
strike. More than 30 volunteers have been trained in disaster
preparedness in coordination with the American Red Cross. These
volunteers are ready to serve in shelters in case of a
disaster, food distribution, and donation management. They also
work to assist neighborhood crime watches, disaster
preparedness efforts and emergency response assistance.
--In the year following the 2013 tornado, more than 90 volunteers
from RSVP of Central Oklahoma have contributed 4,515 hours to
nine nonprofit and State organizations working in the recovery
effort. RSVP volunteers answered disaster hotlines, performed
follow-up calls to families affected by the disaster, served
food and provided companionship at day shelters, provided
survivors with rides to medical appointments, and collected and
distributed donated goods to disaster survivors. During the
coming year, volunteers with the RSVP of Central Oklahoma will
continue to participate in disaster recovery projects, and will
prepare and distribute disaster-ready kits to families and
elderly persons in Oklahoma's tornado-prone communities.
Believing that public/private partnerships strengthen community
impact, the Shell Company of the Americas contributed $50,000
to support the vital disaster recovery and preparedness
services being provided by the RSVP of Central Oklahoma.
RSVP programs like the one in Manhattan, Kansas also support
veterans and military families.
--It organizes volunteers into a Cookie Brigade to bake and deliver
homemade cookies to the USO twice a month with an average of
over 13,000 cookies delivered annually. Volunteers make cards
to welcome more than 200 new soldiers a month to the Fort Riley
Military Post. Volunteers knit/crochet hats, booties, and
blankets for babies delivered at the Irwin Army Community
Hospital. RSVP and the Kiwanis Club of Manhattan have teamed up
to encourage local residents to fly the American Flag on five
major holidays: Memorial Day, Flag Day, Independence Day, Labor
Day, and Veterans Day.
RSVP is a ``destination'' for retiring ``baby boomers.'' 10,000
Baby Boomers are retiring every day and will do so for the next 20
years. RSVP is the only national program able to place large numbers of
senior volunteers in high quality volunteer positions.
The National Association of RSVP Directors (NARSVPD) seeks an
fiscal year 2016 funding level of $63 million for RSVP. This is $15
million above the President's request and would restore funding for
RSVP to the level it enjoyed in fiscal year 2010 and would provide for
an additional 75,000 volunteers. NARSVPD also proposes that this
increase be allocated to strengthen existing RSVP programs.
For additional information, contact: Betty Ruth, President, NARSVPD
or Gene Sofer, Washington Representative.
______
Prepared Statement of the National Association of State Head Injury
Administrators
Dear Chairman Roy Blunt and Ranking Member Patty 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 2016 appropriations for programs authorized by the
Traumatic Brain Injury (TBI) Act within the Department of Health and
Human Services (HHS). We were pleased that Congress passed the TBI Act
Reauthorization Act of 2014 to continue the ability to fund programs to
expand capacity within States for TBI rehabilitation and community
services, as well as prevention, public education and other assistance
provided by the Centers for Disease Control and Prevention's National
Center for Injury Prevention and Control.
The legislation also removed Health Resources and Services
Administration (HRSA) language from the sections authorizing
appropriations for the State Grant and the Protection and Advocacy
(P&A) Grant programs to give the Secretary of the HHS the authority to
place these programs within the Administration as she sees fit.
NASHIA supported this language change and furthermore, recommends
transferring the HRSA TBI State Grant and P&A programs to the
Administration for Community Living (ACL) to maximize resources to
support the array of services and supports needed following a brain
injury across the lifespan for these reasons:
--To integrate TBI into the HHS long-term services initiatives, which
also rely on Aging and Disability Resource Centers (ADRCs) as
the entry point into these systems;
--To promote collaboration with the Administration on Aging (AoA) on
falls related TBIs among older adults, a major cause of TBI;
--To include TBI in the veterans initiatives between HHS and
Department of Veterans Affairs to support Home and Community-
Based Services (HCBS) for veterans and returning servicemembers
coordinated by the ACL's Office of Disability and Aging
Policy's Office of Integrated Programs;
--To coordinate and enhance services for individuals with TBI who
could benefit from the ACL's Administration on Intellectual/
Developmental Disabilities (AIDD) initiatives to improve
education, transition services, employment outcomes and self-
advocacy for children and youth;
--To include TBI in the Office of Disability and Aging Policy's
Office of Integrated Policy initiatives (i.e. Lifespan Respite
Care Program, Participant Direction Program, Evidenced-Based
Care Transitions, and Transportation Research and Demonstration
Program);
--To include families providing caregiving services to their family
members with TBI in the Lifespan Respite Care Program, and
--To further collaborate with other programs transferred to the ACL
through the Workforce Innovation and Opportunity Act including
the Assistive Technology, Independent Living and NIDRR TBI
Model Systems programs.
In keeping with the Olmstead decision, States are taking advantage
of Federal initiatives and opportunities to expand community long-term
services options. Unfortunately, most States focus on the traditional
populations of I/DD, physical disabilities, aging and mental health and
are omitting TBI in their long-term care initiatives. This leaves
individuals with TBI with little options, other than nursing facilities
or other segregated living programs, for assistance with activities of
daily living and residential or housing needs. We believe that aligning
the Federal TBI State Grant Program with these other programs will help
address these concerns.
The TBI Act programs are the only programs providing Federal
assistance to help States with developing an array of rehabilitation,
home and community-based services and other short-term and long-term
supports specific to the cognitive and behavioral needs of individuals
with TBI and their families. Since 1997, HRSA has awarded grants to 48
States, District of Columbia and one Territory, although not
concurrently, to develop and improve services and systems to address
the short-term and long-term needs. These grants have been time limited
and are relatively small. Only 20 States currently receive Federal
grant funding. Therefore, we believe is imperative to position the
program within ACL that will foster collaboration and coordination of
resources to assist all States and Territories, whether receiving grant
funding or not.
NASHIA is well aware that Federal funds are becoming increasingly
difficult to obtain, let alone being increased, therefore NASHIA is
recommending relocating the program because:
--The number of Americans who sustain a TBI is increasing, especially
among older adults and young children, and among our men and
women in uniform as a result of the wars in Iraq and
Afghanistan.
--All States have enacted legislation to develop return to play
guidelines with regard to sports-related concussions among our
youth. Through these efforts, children and youth are now being
identified and screened for potential assistance. However,
after the age of 21, few will have resources available to them
once they are no longer eligible for children's services.
--State budgets have not been able to keep up with the demand for
services.
In closing, NASHIA is a non-profit organization representing and
assisting State governmental officials who administer an array of
short-term and long-term rehabilitation and community services and
supports for individuals with TBI and their families. Over the past 30
years, States have initiated efforts to develop capacity for offering
information and referral services, service coordination,
rehabilitation, in-home support, personal care, counseling,
transportation, housing, vocational and other support services for
persons with TBI and their families. These services vary in size and
scope across the country and even within a State. Twenty-four States
have enacted legislation to assess fines or surcharges to traffic
related offenses or other criminal offenses and/or assessed additional
fees to motor vehicle registration or drivers license to generate
funding for TBI programs and services, generally referred to as trust
fund programs.
States have also implemented TBI Home and Community-Based Medicaid
Waiver Programs (27 waiver programs) with twelve States having the
advantage of administering both a trust fund and waiver program. These
programs are administered by State public health, Vocational
Rehabilitation, mental health, Medicaid, intellectual disabilities,
education or social services agencies within the States.
Thank you.
______
Prepared Statement of the National Association of State Long-Term Care
Ombudsman Programs
I am pleased to present this testimony on behalf of residents and
tenants residing in Kansas long-term care facilities in collaboration
with the National Association of State Long-Term Care Ombudsman
Programs (NASOP). Thank you for your past support of the Long-Term Care
Ombudsman Program (LTCOP) and all the vulnerable citizens that it
serves. This statement and the following funding recommendations are
submitted for the fiscal year 2016 for the Long-Term Care Ombudsman
Programs administered through the Administration for Community Living
(ACL).
First, we request $5 million to support the work of the LTCOP under
the Elder Justice Act. This appropriation would allow States to hire
additional staff and leverage that staff to recruit additional
volunteers to help support the investigation of complaints of abuse,
neglect, and exploitation of residents of nursing home and assisted
living facilities. To date, no EJC funds have been provided for the
LTCOP.
Second, we request $20 million to support 333 additional Ombudsman
(salaried staff) at an estimated $60,000 average annual salary/fringe
benefits and necessary staff training. The requests adds new ombudsman
positions specifically dedicated to providing Ombudsman services to
residents of assisted living facilities and other community-based long-
term care delivery systems, which currently suffer from a significant
lack of personnel resources around the country.
Third, we request $16.83 million authorized under Title VII of the
Older Americans Act for LTCOPs to restore funding back to the fiscal
year 2011 level. Programs in every district and State are suffering
from recent cuts. These funds would help in a partial way to restore
our reduced ability to visit residents in nursing homes.
The primary function of the LTCOP in the Federal OAA is to
identify, investigate, and resolve complaints that relate to action,
inaction or decisions that may adversely affect the health, safety,
welfare, and rights of residents of long-term care facilities.
Ombudsman representatives work with the consent and at the direction of
residents in the resolution of their problems. They visit residents
living in nursing homes and residential care homes. Ombudsman
representatives ask them about problems or concerns they have and if
they need or want our help to resolve these issues. Ombudsman
representatives act as their advocates. We strongly believe that our
work not only improves the quality of life for millions of long-term
care facility residents, but also saves Medicare and Medicaid resources
by avoiding unnecessary costs associated with poor quality care.
Nationally, in fiscal year 2013, nearly 12,000 volunteers,
including 8,290 individuals certified to investigate complaints, and
1,233 staff (full-time equivalent) served in the LTCOP. Ombudsmen
investigated and worked to resolve 190,592 complaints made by 123,666
individuals. Ombudsmen were able to resolve or partially resolve 73
percent, or almost three out of every four complaints investigated. In
addition, ombudsmen provided information or consultation on rights,
care and related services approximately 500,000 times.
Kansas's LTCOP is responsible for advocating for 35,836 residents
and tenants residing within 814 long-term care facilities. The Kansas
Office of State Long-Term Care Ombudsman consists of the State Long-
Term Care Ombudsman; 8 Local Long-Term Care Ombudsman; numerous
volunteers, and an Administrative Assistant. Since 2008, our program
has experienced a 15 percent reduction in funding resulting in the loss
of two full-time positions as well as the resources to adequately run
our program. In Federal fiscal year 2014, Kansas's LTCOP received 1,918
complaints by or on behalf of 1,594 residents and tenants; and provided
5,673 consultations, education sessions, visits, and other activities.
Our office advocates for 35,836 residents/tenants in 814 facilities and
we do this with just a few staff. We are grateful for the staffing that
we do have, but feel that our efforts are just a drop in the bucket.
According to two national studies from the Institute of Medicine and
the Bader Report, the national recommendation for States to follow is 1
long-term care ombudsman for 2,000 beds or people. With the current
number of long-term care ombudsman staff in Kansas, our ombudsmen are
serving 4,480 beds or people. Kansas would need a total of 18 local
long-term care ombudsmen to fully meet this Federal recommendation.
This would ensure that all individuals residing in long-term care would
have immediate access to an advocate who can represent their interests.
We understand that this Subcommittee faces a strained financial
situation, but a continued commitment to Ombudsman programs advocating
for the healthcare needs and safety of millions of older adults living
in nursing homes and assisted living facilities across the Nation
should remain a high priority. Since 1978, the LTCOP has been a core
program of the OAA. It is the only program in the OAA that specifically
serves residents of nursing homes and assisted living facilities. We
all appreciate and value the importance of living in one's own home.
The OAA provides critically needed home and community based services
that often delay institutionalization. However, some elders can no
longer live safely in their own homes and must move at some point in
their lives to either an assisted living facility or a nursing home.
These residents are usually frail and extremely vulnerable and rely on
the advocacy services of the LTCOP.
Demand for our services and advocacy 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. These
violations put facility residents in immediate jeopardy of harm. This
trend suggests a frightening decline in the quality of long-term care
services. Ombudsmen are needed now more than ever in nursing homes,
board and care facilities, and in assisted living communities. As well,
the demand placed on the program by the need to assist residents who
are relocating from long-term care facilities that are downsizing or
closing their doors continues to complicate ombudsman programs' daily
operations.
Administrators in many long-term care facilities have recognized
the value and benefit of having ombudsmen assist with staff training
and consultation and this form of outreach has also placed an
increasing strain on available advocacy resources. In order to improve
advocacy and services available to residents of long-term care
facilities, the Kansas Office of the State Long-Term Care Ombudsman and
NASOP supports the aforementioned funding levels.
Overall, Ombudsmen offer valuable consumer protections to residents
and provide a voice for those unable to speak for themselves. Every day
in America, 10,000 more persons reach the age of 65 years. With a
rapidly growing older population, LTCOPs can continue to enhance the
quality of life, improve the level of care, protect the individual's
rights and promote the dignity of Americans across the Nation. NASOP,
formed in 1985 as a non-profit organization, is composed of State long-
term care ombudsmen representing their State programs created by the
Older Americans Act (OAA).
Thank you for your ongoing support.
[This statement was submitted by Barbara Hickert, Kansas State
Long-Term Care Ombudsman.]
______
Prepared Statement of the National Coalition of STD Directors
CDC'S DIVISION OF STD PREVENTION FUNDING HISTORY
------------------------------------------------------------------------
Fiscal Year ($ million)
------------------------------------------------------------------------
2016 Recommendation*....................................... 212*
2016 President's Budget.................................... 157.3
Funding Level:
2015................................................... 157.3
2014................................................... 157.7
2013................................................... 154.9
2012................................................... 163
------------------------------------------------------------------------
*$54.7 million increase.
On behalf of the members of the National Coalition of STD
Directors, who represent sexually transmitted disease (STD) programs in
all 65 directly-funded project areas of the Centers for Disease Control
and Prevention (CDC)--all fifty States, eight cities and seven U.S.
territories-- I am writing to request an additional $54.7 million for
the Division of STD Prevention in fiscal year 2016 funding. The
Division of STD Prevention is part of the National Center for HIV/AIDS,
Viral Hepatitis, STD and TB Prevention at the CDC.
STDs remain major epidemics in the United States. Each year, there
are almost 20 million new cases of STDs, approximately half of which go
undiagnosed and untreated, giving the United States the highest STD
rate in the industrialized world. These new STDs cost the U.S.
healthcare system $16 billion every year--and cost individuals even
more in immediate and life-long health consequences, including
infertility, higher risk of acquiring HIV, and certain cancers.
The CDC's Division of STD Prevention (DSTDP) guides national
efforts to prevent and control STDs and invests most of its resources
in State, territorial, and large city health departments. CDC/DSTDP
needs additional Federal resources to reverse the alarming and costly
trends of STDs. In fiscal year 2016 funding, please support an increase
of $54.7 million to support the prevention of STDs and their
complications and to ensure those on the front lines of STD prevention
have funding to prepare for the immerging threat of drug-resistant
gonorrhea, respond to the rising rates of syphilis, and other
outbreaks.
The current public health infrastructure has been continually
strained by budget reductions both at the Federal and State level and
is currently unable to prepare as necessary for the arrival of
untreatable gonorrhea as well as responding to growing epidemics and
the needs of diverse populations. STD programs have been doing more
with less for years and it can no longer continue. The system cannot
respond to additional demands and threats with the same level of
funding; additional funding is desperately needed.
Gonorrhea Resistance
Gonorrhea is the second most commonly reported communicable disease
in the United States. Gonorrhea has developed resistance to every class
of antibiotics recommended for its treatment; we are now on our last
line of defense to treat this disease that is a major cause of pelvic
inflammatory disease, ectopic pregnancy, infertility and can facilitate
HIV transmission. Given the current trajectory of this disease, the
question is not if gonorrhea will develop resistance to all drugs
designed to treat it, but when.
While this issue poses grave concerns for all sexually-active
people, drug-resistant gonorrhea will hit certain populations harder
than others including men who have sex with men (MSM), blacks, and
young people:
--Men who have sex with men (MSM) already have the highest rates of
gonorrhea resistance across the country.
--The rate of gonorrhea among blacks is 14.9 times the rate of
gonorrhea among whites.
--Young people aged 24 and younger account for 58 percent of the new
gonorrhea cases every year.
Untreated gonorrhea is a disaster for public health and HIV
prevention. In 2013, the CDC released Antibiotic Resistance Threats in
the United States, 2013, its first-ever snapshot of the burden and
threats posed by the antibiotic-resistant germs having the most impact
on human health and in this report named drug-resistant gonorrhea one
of three ``urgent'' threats, the highest level in this report. If drug-
resistant gonorrhea becomes widespread not only would it dramatically
increase gonorrhea rates, the broader public health impact during a 10-
year period would be devastating. It is estimated that it would lead to
75,000 additional cases of pelvic inflammatory disease (a major cause
of infertility), 15,000 cases of epididymitis, and hundreds of
additional HIV cases.
The direct medical costs of drug-resistant gonorrhea are estimated
to be $235 million 10 years after onset of drug resistance. In reality,
however, the real costs of gonorrhea resistance are likely to be much
higher--this estimate does not account for increased susceptibility
monitoring, additional provider education, case management, and the
need for additional courses of antibiotics and follow-up.
We acknowledge the political and budgetary climate in which
Congress finds itself. But the reality is that soon we will have yet
another un-treatable STD on our hands. Investments made now can help
respond to future public health emergencies and delay a costly
untreatable gonorrhea epidemic. The best way to address growing
gonorrhea resistance now, before its arrival on our shores, is to
decrease the disease burden of gonorrhea.
Overall gonorrhea rates were stable from 2012 to 2013; however, for
the first time since 2000, the rate of reported gonorrhea cases among
men was higher than the rate among women. In fact, during 2009--2013,
the gonorrhea rate among men increased 20.3 percent while the rate
among women decreased two percent. Regional differences also exist;
during 2012--2013, the rate of reported gonorrhea cases in the Western
United States, where gonorrhea resistance has been the highest,
increased among both men (17.3 percent) and among women (11.8 percent).
The most salient example is a startling 393 percent increase in
gonorrhea cases in Utah in the last 4 years
This request outlines what State and local health departments, as
well as on-the-ground partners, need to effectively respond to the
growing resistance of gonorrhea to the last drug shown to treat it. It
outlines the needs in five distinct areas:
--Proper Diagnosis and Treatment: $11.38 million
While we may not be able to completely avoid the arrival of drug-
resistant gonorrhea, we can decrease the burden of gonorrhea
currently seen in our country, thereby reducing the response
needed when resistant strains are identified. Scaled up
screening programs are needed, as well as ensuring the
recently-updated CDC screening and treatment guidelines for
gonorrhea are being followed by private providers.
--Surveillance and Increased Lab Capacity: $6.1 million
CDC currently conducts surveillance for gonorrhea resistance
through the Gonococcal Isolate Surveillance Project (GISP), a
sentinel surveillance that collects data from a group of STD
clinics around the country. GISP has successfully detects
trends in resistance, provides prevalence data and directly
informs CDC treatment recommendations for gonorrhea. Using the
current GISP system as a model, this funding would establish
``mini-GISP'' models across the country to ensure we receive
not only more gonorrhea resistance data but also data in real
time. This funding will also increase lab capacity across the
country, a key weakness in our response to multi-drug resistant
gonorrhea.
--Disease Intervention Specialists: $19.5 million
Disease Intervention Specialists (DIS) are a workforce that is the
underpinning of all STD and HIV health department programs.
Vital to health departments across the country, DIS personnel
conduct voluntary interviews with patients to obtain the names
and contact information of their sexual partner(s) and then use
that information to contact a patient's sexual partner(s) and
inform them of their potential exposure to an STD or HIV. To
get a better handle on the gonorrhea disease burden ahead of
multi-drug resistant gonorrhea, State and local health
departments need additional DIS to identify partners of
possible exposure to gonorrhea and link them to care.
--Evidence-Based Interventions: $10 million
As treatment resistance draws closer, we need to reduce our
existing gonorrhea disease burden. Especially given the
asymptomatic nature of many gonorrhea infections, the more
gonorrhea there is in a community, the more likely it is to
spread, and that fact will only be compounded with the arrival
of treatment-resistant strains. Funded is need to scale-up
existing evidence-based interventions, particularly for
populations most at risk, as well as developing additional
interventions.
--Education and Awareness: $6.5 million
Additional funding is needed to increase STD education and
awareness efforts across the country. The public must be better
educated on the reality of the rise of multi-drug resistant
gonorrhea and what it means for the current and future
treatment of gonorrhea.
Increasing Syphilis Rates, Increasing Congenital Syphilis, and Ocular
Spyhilis
Data release by the CDC late last year showed that rates for
primary and secondary syphilis, which is the most infectious stages of
syphilis, increased by an alarming 10 percent in 2013, the year of most
recent data, on top of an 11 percent increase in 2012. This second year
of double digit increases of syphilis rates is completely also
significantly intersects with our HIV epidemic. This continues to
affect populations already disproportionally impacted by all STDs,
including HIV, most notably gay men and other men who have sex with men
(MSM).
The rate of primary and secondary syphilis in 2013 is the highest
recorded rate since 1996. In addition, the 10 percent increase in
syphilis rates in 2013 was the result of increases in men, mainly MSM;
no overall increase was seen in women in 2013. Syphilis and HIV co-
infection among MSM is very common, with 52 percent of MSM with primary
and secondary syphilis co-infected with HIV.
Congenital syphilis rates also increased 3.6 percent in 2013, the
first increase in congenital syphilis since 2008. This disease can
cause infant death, developmental delays, and seizures when a pregnant
woman has syphilis and it is not treated before delivering.
Also of concern is the fact that since December 2014, at least 15
cases of ocular syphilis from California and Washington have been
reported to the CDC. At least five other States have suspect cases
under investigation. The majority of cases have been among MSM with
HIV; and a few cases have occurred among HIV-uninfected persons
including heterosexual men and women. Several of the cases have
resulted in significant sequelae including blindness. The cause of
these cases is still developing; while the organism the causes syphilis
can affect the eye, it is not yet known if certain strains are more
likely to cause ocular infections.
What is known, however, is that syphilis of all types is on the
rise and we need new tools to fight it. This request also includes an
additional $1.2 million to invest in new approaches to address
syphilis.
Disease Intervention Specialists: Outbreak Response Workforce
The importance of DIS to controlling disease outbreaks of all kinds
cannot be overstated, as evidenced by their key role in the control of
Ebola. This workforce infrastructure is vital to responding not only to
emergencies such as this, but to contain our STD, including HIV,
epidemics across the country. These individuals are the unsung heroes
of public health; few have heard of them, but we desperately rely on
them when many types of emergencies occur.
This infrastructure is housed in State and Federal health
departments and is often funded by Federal dollars through grants from
the Division of STD Prevention at the CDC. The functions of DIS are not
going to be fulfilled by the private sector, but will need to be
continued to be funded by the discretionary funding appropriated by
this Committee.
DIS positions are often low paying and incredibly demanding. That,
coupled with reductions in investments in the public health system, has
eroded the DIS workforce over time. Additional resources are
desperately needed to bolster DIS staffing-- efforts on which NCSD has
been leading for years. Limited funds at both the State and local
levels do not allow for DIS to follow up on all of the almost two
million cases of STDs, including HIV, that are reported annually.
Additional funds are desperately needed to allow for more DIS to
perform contact tracing to stop the spread of STDs. We need to ensure
this workforce continues if we ever hope to control STDs, including
HIV, but also so we can adequately and effectively respond to public
health emergencies, including Ebola.
To allow for STD public health programs to respond to gonorrhea
resistance, increasing syphilis, and prepare for outbreaks of all
kinds, please support an increase of $54.7 million for the Division of
STD Prevention in fiscal year 2016.
For more information about this funding request or STD prevention
in general, please contact the National Coalition of STD Director's
Director of Policy and Communications, Stephanie Arnold Pang.
[This statement was submitted by William Smith, Executive Director,
National Coalition of STD Directors.]
______
Prepared Statement of the National Council for Diversity in the Health
Professions
summary of fiscal year 2016 recommendations
_______________________________________________________________________
$300 million for the Title VII Health Professions Training
Programs, including:
--$25 million for the Minority Centers of Excellence
--$14 million for the Health Careers Opportunity Program
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Wanda
Lipscomb, President of the National Council for Diversity in the Health
Professions (NCDHP) and the Director of the Center of Excellence for
Culture Diversity in Medical Education at Michigan State University.
NCDHP, established in 2006, is a consortium of our Nation's majority
and minority institutions that once house the Health Resources and
Services (HRSA) Minority Centers of Excellence (COE) and Health Careers
Opportunities Programs (HCOP) when there was more funding. These
institutions are committed to diversity in the health professions. In
my professional life, I have seen firsthand the importance of health
professions institutions promoting diversity and the Title VII Health
Professions Training programs.
Mr. Chairman, time and time again, you have encouraged your
colleagues and the rest of us to take a look at our Nation and evaluate
our needs over the next 10 years. I want to say that minority health
professional institutions and the Title VII Health Professionals
Training programs address a critical national need. Persistent and
severe staffing shortages exist in a number of the health professions,
and chronic shortages exist for all of the health professions in our
Nation's most medically underserved communities. Furthermore, our
Nation's health professions workforce does not accurately reflect the
racial composition of our population. For example while blacks
represent approximately 15 percent of the U.S. population, only 2-3
percent of the Nation's health professions workforce is black. Mr.
Chairman, I would like to share with you how your committee can help
NCDHP continue our efforts to help provide quality health professionals
and close our Nation's health disparity gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: 1)
serve in rural and urban medically underserved areas, 2) provide care
for minorities and 3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Institutions that cultivate minority health professionals, like the
NCDHP members, have been particularly hard-hit as a result of the cuts
to the Title VII Health Profession Training programs in fiscal year
2006 fiscal year 2007, and fiscal year 2008. Given their historic
mission to provide academic opportunities for minority and financially
disadvantaged students, and healthcare to minority and financially
disadvantaged patients, minority health professions institutions
operate on narrow margins. The cuts to the Title VII Health Professions
Training programs amount to a loss of core funding at these
institutions and have been financially devastating. We have been
pleased to see efforts to revitalize both COE and HCOP in recent fiscal
years, but it is important to fully fund the programs at least at the
fiscal year 2004 level so that more diversity is achieved in our health
professions.
Earlier this year with the passage of health reform, the Congress
showed the importance of the many of the Title VII programs, including
the Minority Centers of Excellence (COE) and Health Careers
Opportunities Program (HCOP), by reauthorizing the programs.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2016, I recommend a funding level of $25 million
for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional.
Collectively, the absence of HCOPs will substantially erode the
number of minority students who enter the health professions. Over the
last three decades, HCOPs have trained approximately 30,000 health
professionals including 20,000 doctors, 5,000 dentists and 3,000 public
health workers. For fiscal year 2016, I recommend a funding level of
$14 million for HCOPs.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
NCDHP member institutions and the Title VII Health Professions Training
programs can help this country to overcome health and healthcare
disparities. Congress must be careful not to eliminate, paralyze or
stifle the institutions and programs that have been proven to work.
NCDHP seeks to close the ever widening health disparity gap. If this
subcommittee will give us the tools, we will continue to work towards
the goal of eliminating that disparity everyday.
Thank you, Mr. Chairman.
[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 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 2016 Appropriation.
NCSSMA is a membership organization of approximately 3,200 SSA
managers and supervisors who provide leadership in nearly 1,250
community-based field offices and teleservice centers throughout the
country. We are the front-line service providers for SSA in communities
all over the Nation. Since the founding of our organization over 45
years ago, NCSSMA has considered a stable SSA, which delivers quality
and timely community-based service to the American public, our top
priority. We also consider it paramount to be good stewards of the
taxpayers' monies and the Social Security programs we administer.
NCSSMA respectfully requests that Congress consider full funding of
the President's fiscal year 2016 budget request, which includes $12.513
billion for SSA's Limitation on Administrative Expenses (LAE) account.
This level of funding will allow SSA to improve and modernize customer
service, enhance program integrity efforts, deter and detect fraud and
errors, and continue to address high volumes of work.
NCSSMA appreciates the fiscal year 2015 LAE account funding of
$11.806 billion provided for SSA. Increased resources, particularly in
SSA's field offices and teleservice centers, have a positive impact on
delivering vital services to the American public and in fulfilling the
agency's stewardship responsibilities. From the end of 2010 to the end
of fiscal year 2013, SSA field offices decreased by 3,452 employees and
teleservice centers lost 931 employees. SSA's fiscal year 2014
appropriation allowed the agency to undertake appreciable hiring for
the first time since fiscal year 2010. As indicated in the chart below,
the fiscal year 2014 hiring and the anticipated fiscal year 2015
replacements for staff attrition are urgently needed to help recover
from several years of staffing reductions. While we appreciate the
fiscal year 2014 and fiscal year 2015 appropriations for SSA, adequate
and sustained funding is needed to maintain staffing levels and to
ensure new employees receive the training necessary to become fully
productive, which takes on average 3 years.
SSA STAFF ATTRITION END OF FISCAL YEAR 2010-END OF FISCAL YEAR 2014
----------------------------------------------------------------------------------------------------------------
Fiscal Year Percent of
Component --------------------------------------- Net staff staff
2010 2013 2014 difference* losses* ($)
----------------------------------------------------------------------------------------------------------------
All SSA........................................ 70,202 62,199 65,102 -5,100 -7.26
Field Offices.................................. 31,331 27,879 29,682 -1,649 -5.26
TSCs........................................... 5,206 4,275 4,535 -671 -12.90
ODAR........................................... 10,055 9,510 9,266 -789 -7.85
PSCs........................................... 11,868 9,957 10,674 -1,194 -10.10
----------------------------------------------------------------------------------------------------------------
*Net Staff Difference and Percent of Staff Losses are from End of Fiscal Year 2010 to End of Fiscal Year 2014.
The dramatic growth in SSA workloads, along with the attrition in
our offices over the last several years, has emphasized how imperative
it is that the necessary resources are received to maintain service
levels vital to the nearly 65 million Social Security beneficiaries and
Supplemental Security Income (SSI) recipients. Despite agency strategic
planning, expansion of online services, significant productivity gains,
and the best efforts of management and employees, SSA still faces many
challenges providing the service the American public has earned and
deserves.
As a result of the significant staffing losses, SSA experienced a
marked deterioration in our services from fiscal year 2012 through
fiscal year 2014. The scope of the deterioration in field office and
teleservice center services is illustrated in the examples provided
below.
Availability of an Appointment with a Field Office
--Beginning of fiscal year 2012: 74 percent of customers could get an
appointment within 2 weeks. Less than 1 percent waited over a
month for an appointment.
--End of fiscal year 2014: 28 percent of customers could get an
appointment within 2 weeks. 47 percent waited over a month for
an appointment.
Waiting Times in Field Offices
--Fiscal Year 2012: 18.8 minutes; and 4.8 percent or 2.15 million
customers waited over an hour to be served.
--Fiscal Year 2014: 28.2 minutes (50 percent increase) and 13.3
percent or 5.42 million customers waited over an hour to be
served (152 percent increase).
Field Office Telephone Service (Earliest data available Fiscal Year
2012)
--Fiscal Year 2012: Busy Rate: 7.4 percent; Answer Rate: 82.9
percent*
--Fiscal Year 2014: Busy Rate: 20.1 percent; Answer Rate: 67.3
percent*
*Note--Answer rate is 100 percent minus the busy rate and rate of
caller hang up because they did not want to remain on hold any longer.
800 Number Telephone Service
--Fiscal Year 2012: Busy Rate: 4.6 percent; Time on Hold: 4 minutes,
14 seconds; Answer Rate: unavailable
--Fiscal Year 2014: Busy Rate: 13.5 percent; Time on Hold: 22
minutes, 3 seconds; Answer Rate: 53.8 percent
With the improved appropriations and new staff brought on in fiscal
year 2014 and fiscal year 2015, SSA is beginning to see substantive
progress in addressing service deteriorations.
In order to maintain this progress with service improvement, we
fully support the President's budget request of $12.513 billion for
SSA's LAE account in fiscal year 2016. While this would be a much-
appreciated increase of $707 million over the fiscal year 2015 level of
funding, it is important to note that the fiscal year 2016 budget
request includes inflationary increases of over $355 million in fixed
costs, including rent, guards, postage, and employee salaries and
benefits. NCSSMA respectfully requests that Congress consider full
funding of the President's budget request for SSA to ensure adequate
levels of service to the American public. Full funding is critical to
maintain staffing in SSA's front-line components, cover inflationary
increases, continue efforts to reduce disability backlogs, increase
deficit-reducing program integrity work, and to address the
significantly increased hearings backlog. The hearings backlog is
currently at an all-time high, with over 1 million people waiting for a
hearing.
The President's fiscal year 2016 budget request includes $1.439
billion dedicated to processing program integrity workloads, which is
consistent with the Budget Control Act of 2011. Program integrity
initiatives save taxpayer dollars and contribute to reducing the
Federal budget and deficit. To address program integrity, the
President's fiscal year 2016 SSA budget request includes funds for the
two most cost-effective tools to reduce improper payments--medical
continuing disability reviews (CDRs) and SSI redeterminations.
In fiscal year 2015 SSA projections indicate the agency will
complete 790,000 medical CDRs, which is an increase of 50 percent, and
2.255 million SSI redeterminations. The fiscal year 2016 budget request
calls for SSA to process 908,000 medical CDRs and 2.622 million SSI
redeterminations. In order to process this large increase in volume of
medical CDRs and SSI redeterminations, the field offices and disability
determination services (DDS) will need to maintain adequate staffing
levels or there could be delays in processing initial disability claims
and reconsiderations and degradation of other services field offices
provide.
Again, SSA is challenged by ever-increasing workloads, very complex
programs to administer, and increased program integrity work with
diminished staffing and resources. With the current fiscal challenges
confronting SSA, we encourage Congress to consider changes to the
Social Security and SSI programs that have the potential to increase
administrative efficiency and lower operational costs.
It is critical SSA receives adequate, yet flexible funding for the
LAE account to respond to requests for assistance from the American
public, and to fulfill our stewardship responsibilities. SSA TSCs,
hearing offices, program service centers (PSCs), DDS, and the nearly
1,250 field offices are in grave need of adequate resources to address
their growing workloads. Without adequate funding, SSA will not be able
to provide the high-quality customer service Americans deserve and will
be unable to process program integrity workloads, which save taxpayer
dollars and reduce the Federal budget and deficit.
We realize the fiscal year 2016 funding level of $12.513 billion
for SSA's LAE account requested above is not insignificant,
particularly in this difficult Federal budget environment. However,
Social Security serves as the largest most vital component of the
social safety net of America and is facing unprecedented challenges.
The American public expects and deserves SSA's assistance.
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 in ensuring the American public receives the critical and
necessary service they deserve from the Social Security Administration.
[This statement was submitted by Richard E. Warsinskey, President,
National Council of Social Security Management Associations.]
______
Prepared Statement of the National Council of State Directors of Adult
Education
The National Council of State Directors of Adult Education offers
this testimony Submitted to the Senate Subcommittee on Labor, Health
and Human Services, and Education, and Related Agencies to Address
Funding Levels in the Department of Education for Adult Education and
Family Literacy
The National Council of State Directors of Adult Education (NCSDAE)
appreciates the opportunity to submit testimony about the funding level
proposed in the Administration's fiscal year 2016 Budget.
Adult education serves adults, 16 years of age and older, who are
no longer in school or are functioning below the high school completion
level. Services include teaching foundation skills like reading, math,
and English coupled with college and career readiness skills that lead
to adult secondary education and the transition to post-secondary
education. Public schools, community colleges, and community-based
organizations provide programs at the local level.
NCSDAE believes that funding for Adult Education in fiscal year
2016 should be at $622.3 million, the level authorized in the Workforce
Innovation and Opportunity Act (WIOA) in 2014. Just last year, Congress
passed WIOA by overwhelmingly bi-partisan votes in both the House (415-
6) and Senate (97-3). The law established Adult Education as one of the
four key programs in the workforce system because it recognized the
crucial role Adult Education plays in educating our population,
teaching English and civics, and preparing adults for occupational
training and to enter the workforce or improve their employment status.
Such improvements as the law anticipates cannot be fully realized
without sufficient resources.
The President's request of $569 million is approximately $53
million below the level Congress authorized ($622.3) in WIOA and is
insufficient to the challenges facing Adult Education. These challenges
include:
--Only 1.7 million of the 93 million who could benefit can access
adult education services.
--One million school age children drop out of school each year
adding to that number.
--Thirty percent (30 percent) of foreign born speak English ``not
very well'' or ``not at all.'' Fourteen million are limited
English proficient.
--Only 678,000 can currently access adult education services
--Over 40 percent of the 2.3 million incarcerated adults have not
finished high school.
--The primary indicator of a child's success in school is the
education level of the parent; especially the mother.
--In the most recent (2010) NCSDAE survey, there were waiting lists
in adult education programs in every State but one.
The challenges of attempting to provide access to adult education
services are overwhelming.
Without access, those undereducated, under prepared adults cannot
qualify for jobs with family sustaining incomes that require not only a
high school equivalency, but also some college--preferably a one or 2
year certificate in a high demand occupation.
Adults without a high school diploma or functioning below a high
school level, cannot qualify for either community college programs or
high demand occupations.
According to the National Assessment of Adult Literacy, more than
93 million Americans, about 60 percent the workforce, lack literacy at
a level needed to enroll in postsecondary education or job training
that current and future jobs now require. In the decade just ended, 24
of the 30 fastest-growing occupations required workers with
postsecondary education or training. About 40 percent of job openings
will soon require such skills.
Thirty-two States need more adults with college degrees to reach
international competitiveness. States cannot close the gap with
traditional college students. They must rely on the re-entry pipeline--
getting older adults back into the education system and on track to
attaining college degrees.
High schools cannot provide business and industry the workers they
needs.
--There are approximately 150 million adults in the workforce
--The public schools graduate approximately three million young
people every year which equates to only 2 percent of the
current workforce.
--Projected 10 years out, public schools can provide only 20 percent
of the 2025 workforce. The other 80 percent are adults in the
workforce or preparing to enter the workforce today.
Most of America's workforce of tomorrow is already in the
workforce. They are beyond the reach of the high schools and
postsecondary education. Adult education is the best way to re-engage
them.
Further, 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 even more the demand for adult
English-language programs for adults.
By neglecting the adult population in need of education, we also
harm the prospects of the next generation--57 percent of children whose
parents don't have a college education live in low-income families, and
are less likely themselves to get a good education qualify for family-
sustaining jobs.
One in four working families in our country is low income, and
postsecondary education or job training can be a ticket to the middle
class for low-wage workers seeking better jobs.
The reality is that our adult education programs--for which Federal
funding is the core support--are reaching fewer than 2 million adults a
year, just the tip of the iceberg. For all intents and purposes, Adult
Education State Grants have been essentially frozen since fiscal year
2002. Adjusted for inflation, this is a reduction of 25 percent.
Enrollment has decreased most sharply among the low-income populations
that most need adult education and workforce skills services. Waiting
lists exist in almost every State.
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.
Adult education must also be supported.
Education levels correlate highly to employment and income levels,
but significant underinvestment in adult education and workforce skills
development is eroding America's global competitiveness.
Other nations are fast outstripping America in boosting the
educational levels of their young and working age adults. They are
showing consistent decade-to-decade progress in enhancing the education
levels of their adult populations, while the U.S. is losing ground.
According to the results of The Program for International
Assessment of Adult Competencies (PIAAC) conducted under the auspices
of the Organization for Economic Cooperation and Development (OECD) and
published in 2013, ``the U.S. average on the literacy and numeracy
scales is mediocre at best . . . .'' PIAAC also reports that:
--U.S. adults scored below the international average in all three
domains [literacy, numeracy, and problem solving in technology-
rich environments]
--U.S. adults with more than a high school education have literacy
skills similar to their peers in other countries. . . .
However, U.S. adults with less than a high school diploma
scored lower than their peers internationally, especially in
literacy and numeracy . . . . In fact, the gap in average
scores between adults with the highest and lowest levels of
educational attainment was greater in the United States than in
any other participating country, for both literacy and
numeracy.
In short say the authors of the Report, ``These PIAAC results
confirm that skills do make a difference and suggest that we can have a
substantial impact on economic success and the quality of life in the
United States by enhancing skill levels across all groups within the
adult population.''
Unfortunately, in the past decade overall adult education
enrollment has declined even as need for services has expanded rapidly.
Investing in Adult Education makes sense.--According to ``The
Return on Investment from Adult Education and Training,'' a policy
paper issued by the McGraw-Hill Research Foundation (2011), ``A
preemptive focus on adult education actually saves governments money by
reducing: Societal healthcare, public assistance, and incarceration
costs.''
The Report also noted that, ``Adult education also improves and
expands the Nation's available pool of human capital by helping
motivated but undereducated people achieve gainful employment in
today's increasingly high-tech and global job market, and at a far
lower cost per learner when compared to either K-12 or higher
education. As a result, adult education and career training is
potentially one of the most cost-effective tools the Nation has to
recover its economic health in the aftermath of the ``Great
Recession.''
Properly funding the adult education system would yield substantial
fiscal and social benefits, adding to GDP growth, personal incomes,
increased revenues, and savings on incarceration and healthcare:
--$848 billion--increase in personal income in the U.S. over a
working lifetime if all adults aged 25 to 64 with some college
but no degree acquired at least an associate degree.
--$900,000 per person--how much more an adult holding a bachelor's
degree would contribute to the tax coffers of Federal, State,
and local governments during a working lifetime compared to an
adult with only a high school diploma.
--$2.5 billion annually--the net fiscal contributions to the Federal
Government and State and local governments if 4 million
dropouts a year earn a high school diploma.
--Up to $1.4 billion per year in savings in reduced costs from crime
if the high school completion rate increased by just 1 percent
for all men aged 20 to 60.
--Up to $238 billion annually in healthcare expenditures can be saved
by improving adult literacy.
--$191 billion--increase in personal income in the U.S. over a
working lifetime if all adults aged 25-64 without a high school
diploma acquired a high school diploma or equivalent.
We are well aware of the pressures that the Committee faces in this
challenging budgetary environment. Nevertheless, we urge you to fund
Adult Education at the level authorized in the Workforce Innovation and
Opportunity Act (2014) so that the ambitious goals of that law may be
realized and that Americans 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.
For additional information, please contact: Dr. Lennox McLendon,
Senior Advisor, and Gene Sofer, Director of Government Relations.
______
Prepared Statement of the National Energy Assistance Directors'
Association
The members of National Energy Assistance Directors' Association
(NEADA), representing the State directors of the Low Income Home Energy
Assistance Program (LIHEAP) would like to first take this opportunity
to thank the members of the Subcommittee for considering our funding
request for fiscal year 2016.
LIHEAP is the primary source of heating and cooling assistance for
some of the poorest families in the United States. In fiscal year 2015,
the number of households receiving heating assistance is expected to
remain at about 6.7 million households or about 19 percent of those
eligible to receive assistance, with an average grant size of about
$425. In addition, the program is expected to reach about 1 million
households for cooling assistance, the same level that received
assistance in fiscal year 2014.
Program funding for LIHEAP has been significantly cut from $5.1
billion in fiscal year 2010 to the current level of $3.3 billion. As a
result, States have had to reduce the number of households receiving
assistance from 8 million to the current level of 6.7 million. Program
cuts have had a severe impact on the ability of States to help some of
the Nation's poorest households pay their home energy bills.
For fiscal year 2016 we are requesting the Committee restore
program funding to the fiscal year 2011 level of $4.7 billion. The
funding request would allow States to increase program services to the
level provided in fiscal year 2011 and allow us to increase the number
of households served by 1.3 million to 8 million and the percentage of
households served from about 19 percent in fiscal year 2015 to about 22
percent and fund about 50 percent of the cost of home heating for
eligible households.
In addition, the lack of a final program appropriation prior to the
beginning of the fiscal year creates significant administrative
problems for States in setting their program eligibility guidelines. We
are concerned that States will be hampered in their ability to
administer their programs efficiently due to the lack of advanced
funding. In order to address this concern, we are requesting advance
appropriations of $4.7 billion for fiscal year 2017.
LIHEAP in the President's Budget
The President's Budget would maintain the overall funding level for
LIHEAP at 2015 levels but would add two new provisions that would
reduce State flexibility and grant amounts by requiring a minimum set-
aside of 10 percent of each State's grant for weatherization and set-
aside $200 million from the overall State grant to implement a new
competitive grant program that would test ``innovative strategies to
serve LIHEAP households, including reducing energy use, supporting fuel
switching, reducing energy bills, and smoothing energy costs to avoid
large spikes during some parts of the year.''
Our concern is the negative impact these provisions would have on
State grants and State flexibility in administering LIHEAP.
Weatherization.--Current law allows States to set aside up to 15
percent of their allocation for Weatherization and up to 25 percent
with a waiver. The Administration's proposal would require a minimum
set-aside of 10 percent and allow States to set-aside up to 40 percent
without a waiver.
We are recommending that the Committee reject both proposals. The
current law provides States with sufficient flexibility to design their
weatherization programs in context of other resource that might be
available for this purpose, allowing States to strike the proper
balance between bill payment assistance and efficiency. In addition, we
believe that increasing the ceiling for Weatherization within the block
grant would undermine the primary purpose of LIHEAP which is to help
poor families pay their home energy bills.
Competitive Grant Program.--The proposed program would be funded by
reducing the formula grant program by $200 million. The funding level
for the block grant has been cut significantly in the last few years
from $5.1 billion in fiscal year 2010 to the current level of $3.4
billion. We do not believe the program has any flexibility to absorb
additional cuts without corresponding cuts to program services. If
approved, the States would have no choice but to reduce the number of
grants by about 47,000 households to pay for this initiative.
The Administration has also proposed to establish a contingency
fund providing additional funds to respond to increases in the number
of low-income households, spikes in the price of natural gas,
electricity, or oil, and extreme cold at the beginning of winter. We
support this additional program authority. It would help to address
State concern about winter heating and cooling conditions that we have
no control over and have the potential to undermine the effectiveness
of the program's purchasing power at very short notice. The need for
such a contingency fund was made abundantly clear during the winter of
2014 as propane prices nearly doubled, forcing State LIHEAP offices to
increase propane benefits in order to keep poor families alive during
the harsh winter months.
What is the Impact of Declining Federal Funds?
Surveys of families receiving Federal assistance have been
consistent over the years. Poor families struggle to pay their home
energy bills. When they fall behind, they risk shut-off of energy
services or they are not able to afford the purchase of delivered
fuels. In fiscal year 2011, NEADA conducted a survey of approximately
1,800 households that received LIHEAP benefits. The results show that
LIHEAP households are among the most vulnerable in the country.
--40 percent have someone age 60 or older
--72 percent have a family member with a serious medical condition
--26 percent use medical equipment that requires electricity
--37 percent went without medical or dental care
--34 percent did not fill a prescription or took less than their full
dose of prescribed medication
--19 percent became sick because the home was too cold
--85 percent of people with a medical condition are seniors
Many LIHEAP recipients were unable to pay their energy bills:
--49 percent skipped paying or paid less than their entire home
energy bill,
--37 percent received a notice or threat to disconnect or discontinue
their electricity or home heating fuel,
--11 percent had their electric or natural gas service shut off in
the past year due to nonpayment, 24 percent were unable to use
their main source of heat in the past year because their fuel
was shut off, they could not pay for fuel delivery, or their
heating system was broken and they could not afford to fix it,
and
--17 percent were unable to use their air conditioner in the past
year because their electricity was shut off or their air
conditioner was broken and they could not afford to fix it.
LIHEAP's impact in many cases goes beyond providing bill payment
assistance by playing a crucial role in maintaining family stability.
It enables elderly citizens to live independently and ensures that
young children have safe, warm homes to live in. Although the
circumstances that lead each client to seek LIHEAP assistance are
different, LIHEAP links these stories by enabling people to cope with
difficult circumstances with dignity.
The Need for LIHEAP
Households reported enormous challenges despite the fact that they
received LIHEAP. However, they reported that LIHEAP was extremely
important. About 64 percent reported that they would have kept their
home at unsafe or unhealthy temperatures and/or had their electricity
or home heating fuel discontinued if it had not been for LIHEAP. Almost
98 percent said that LIHEAP was very or somewhat important in helping
them to meet their needs. In addition, 53 percent of those who did not
have their electricity or home heating fuel discontinued said that they
would have if it had not been for LIHEAP.
The members of NEADA recognize the difficult budget decisions that
you face as you consider funding levels for LIHEAP for fiscal year 2016
and advance funding for fiscal year 2017. We appreciate your interest
and continued support for LIHEAP. Please feel free to call upon us if
we can provide you with additional information.
______
Prepared Statement of the National Family Planning & Reproductive
Health Association
summary
_______________________________________________________________________
Requesting $327 million in funding for fiscal year 2016 for the
national family planning program (Title X of the Public Health Service
Act).
_______________________________________________________________________
My name is Clare Coleman; I'm the President & CEO of the National
Family Planning & Reproductive Health Association (NFPRHA), a
membership organization representing the Nation's safety-net family
planning providers--nurse practitioners, nurses, physicians,
administrators and other key healthcare professionals. Many of NFPRHA's
members receive Federal funding from Medicaid and through Title X of
the Federal Public Health Service Act, the only federally funded,
dedicated, family planning program for the low income and uninsured.
These critical components of the Nation's public health safety net are
essential resources for those providing access to high-quality services
in communities across the country. As the Committee works on the fiscal
year 2016 appropriations bill, NFPRHA respectfully requests that you
make a significant investment in Title X by including $327 million to
restore the capacity of the program to serve those in need.
NFPRHA was pleased to see that the administration acknowledged
Title X's integral role in healthcare delivery by including a $13.5
million increase to $300 million for Title X in the president's fiscal
year 2016 proposal; however, even that amount is insufficient to meet
the well-documented demand for publicly funded family planning
services. Even as more individuals benefit from insurance coverage
through the Affordable Care Act (ACA), the Title X network continues to
play an essential role in our Nation's service delivery framework.
``Churning,'' confidentiality, and other issues will all play a role in
keeping some individuals uninsured, underinsured, or unable to use the
coverage they have for the full range of their family planning needs.
More importantly, Title X-funded health centers provide healthcare
access within communities for all patients regardless of payer source.
If the Massachusetts health reform experience were to prove
representative of what could be expected by nationwide health reform,
there will be a strong increase in demand for services within the
already-strained safety net. At present, six in ten women describe
family planning centers as their usual source of medical care.
According to a report by the Centers for Disease Control and Prevention
(CDC), as health reform in Massachusetts expanded coverage for most
people living in the State, Title X family planning health centers
continued to have high volumes of patients, both insured and uninsured,
and remained providers of choice for many.
The failure of States to expand Medicaid eligibility for all adults
up to 138 percent of the Federal poverty level (an income of $16,243 a
year for an individual in 2015)--along with new barriers to coverage
being sought by some expansion States, such as premiums and other cost-
sharing requirements--compounds the demand being placed on the Title X
safety net. Currently, 22 States have not expanded their Medicaid
eligibility under the ACA. Of those, only 1 State (WI) have full-
benefit Medicaid eligibility for childless adults. For working parents,
18 of the 22 States have Medicaid eligibility equal to or less than 75
percent of FPL (an income of $8,828 a year); 13 have eligibility at or
below 50 percent (an income of $5,885 a year). Four States have
eligibility set at less than 25 percent of FPL--that means individuals
making more than $2,943 are too ``rich'' for Medicaid.
Furthermore, the Supreme Court's recent decision in Burwell v.
Hobby Lobby Stores, Inc., undermining the ACA's historic contraceptive
coverage requirement, potentially adds strain on Title X to assume the
cost of care for individuals who legally should have their
contraception paid for by their insurance. That strain will be
magnified should the Court rule in King v. Burwell this summer that
premium tax credits should not be made available in States with an
exchange managed by the Federal Government. The RAND Corporation
estimates that enrollment in ACA-compliant plans sold within and
outside of the exchanges would decline by 9.6 million in Federal
exchange States, a 70 percent decrease, and unsubsidized premiums would
increase 47 percent.
Similar to other publicly funded health programs, Title X has
unfortunately suffered budget cuts despite patient need. Between fiscal
year 2010-fiscal year 2013, the Title X family planning program was cut
$39.2 million (-12.3 percent). Federal data show a strong correlation
between Federal funding cuts and the most dramatic reduction of
patients served. During the same period, 667,000 patients were lost
from the program, with no indication that they were absorbed into other
safety-net healthcare systems. While Congress restored $8.2 million
over the fiscal year 2013 post-sequester level in fiscal year 2014,
that amount only brought Title X resources back to a level matching its
funding a decade a prior (e.g. fiscal year 2005 funding levels), and
the fiscal year 2015 appropriation subsequently only provided that same
level funding.
As appropriators grapple with how best to distribute limited
Federal resources, NFPRHA encourages the Committees continue to
prioritize investments in programs, including Title X, that are proven
to save critical taxpayer dollars. Every $1 invested in publicly funded
family planning services saves $7.09 in Medicaid costs associated with
unplanned births. Additionally, services provided in Title X-supported
centers alone yielded $5.3 billion of the $10.5 billion in total
savings for publicly funded family planning in 2010.
Moreover, appropriators should invest in programs, such as Title X,
that focus on outcomes and increasing service efficiency. Title X has
long set the standard for high quality family planning and sexual
health service provision and recently doubled down on its efforts to
lead the field by advancing best practices for clinical care. In April
2014, the program issued ``Providing Quality Family Planning Services--
Recommendations of CDC and the U.S. Office of Population Affairs,''
that outlines the most up-to-date clinical recommendations for all
providers of family planning care, including Title X-funded providers,
to help define patient-centered, high quality care in a family planning
visit. Such efforts reinforce the network's dual role as safety-net
providers and centers of excellence for family planning and sexual
healthcare.
Lastly, Title X supports critical infrastructure and technology
necessary for modern service delivery that are not reimbursable under
Medicaid and commercial insurance. Resources for electronic health
record implementation for safety-net providers--just as for others in
the safety net--are necessary to help achieve the ACA goal of having a
nationwide health information technology infrastructure and more
coordinated models of care. Increased Title X funding is essential to
help address the gap caused by the oversight in Federal planning that
led to most family planning health providers' ineligibility for the
electronic health records (EHR) incentives available under the HITECH
Act.
For these reasons, NFPRHA urges the Committee to make a significant
investment in the Nation's safety-net family planning health services
and requests funding for Title X at $327 million in fiscal year 2016.
[This statement was submitted by Clare Coleman, President & CEO,
National Family Planning & Reproductive Health Association.]
______
Prepared Statement of the National Head Start Association
Chairman Blunt, Ranking Member Murray and other members of the
Subcommittee, thank you for allowing the National Head Start
Association (NHSA) to submit testimony on behalf of funding for Head
Start and Early Head Start in fiscal year 2016. This year marks the
50th year that Head Start centers have been creating opportunities for
at-risk children and families to achieve success in life by providing
critical early education, health, nutrition, parent engagement and
family support services. NHSA respectfully urges the Subcommittee to
continue its enduring bipartisan support by allocating $10,117,706,000
for Head Start and Early Head Start in fiscal year 2016, in line with
the President's Budget.
impact of the fiscal year 2013 sequester
The Head Start and Early Head Start community remains appreciative
of your leadership in ensuring that the fiscal year 2014 Omnibus
Appropriations legislation not only helped restore the damaging cuts
from sequestration, but also made investments in ongoing quality
improvement that enabled Head Start providers to keep pace with rapidly
rising operating costs. Our community was equally pleased that Congress
retained this level of investment in the fiscal year 2015 CROmnibus.
That said, the impact of the sequester was severe and, despite
appropriations being restored, programs are still recovering. Services
were reduced by 1,342,015 days, Head Start Centers closed,
transportation services were cut, and teachers were furloughed and laid
off. Head Start grantees continue to struggle to regain trust and
support in some communities where centers were closed and partnerships
ended. The long lasting impact of sequestration has been truly
devastating and something that must be avoided in the years to come.
recommendations for fiscal year 2016
In fiscal year 2016, we urge the Subcommittee to continue and build
on investments made in fiscal year 2014 and fiscal year 2015 by
allocating $10,117,706,000 for Head Start and Early Head Start. This
funding will allow us to continue services to nearly 959,828 children
and their families from birth through age five, continue supporting the
recently awarded Early Head Start expansion grants and child care
partnerships, support our critical workforce and enable a special focus
on improving program quality. Specifically, we propose a $1.228 billion
allocation for Quality Improvement funds which, as outlined in the Head
Start Act of 2007, may be used for increasing the duration of
instruction time, staff training, improving community-wide planning,
improving classroom environments, strengthening transportation safety,
and increasing hours of program operation. We also urge the
Subcommittee to join us in asking the Administration to honor its
promise to release, this spring, a long-overdue revised set of Head
Start Program Performance Standards, aligned to the Head Start Act of
2007.
supporting the workforce
It is well known that one of the hallmarks of excellence in any
early learning program is the caliber of its teachers. More than 70
percent of Head Start teachers have a bachelor's degree or higher in
early learning or related fields, which significantly exceeds the 50
percent minimum mandated by Congress in the 2007 reauthorization and
enables the program to have one of the best-trained workforces in the
country. However, the average salary for these degreed teachers is
$30,086--lower than what schools pay teachers, and much lower than
salaries for many other jobs with comparable education requirements.
Examples of programs losing their best staff to higher paying
schools or other providers are plentiful across the country. In New
York, one Head Start social/emotional education mentor-coach reported
seeing several ``gifted teachers, assistants and aides leave our
classrooms after short stays due to the pressure to provide for their
own families.'' Many of the staff that do choose to stay with Head
Start struggle to make ends meet--such as the Oregon teachers who have
depended on a local food bank to help feed their own children or the
Mississippi staff that work evening jobs just to be able to pay their
electricity bills. Focusing increased investment toward workforce
quality improvements will help enable programs to hold on to dedicated
teachers, and provide a solid foundation for the good of our students
and families. To that end, NHSA supports the Administration's request
of $284,482,375 for workforce investments in order to help programs
retain staff and keep up with a rising cost of living in our country.
Ongoing Quality Improvements
Recognizing the need for programs to retain staff, improve
facilities, expand transportation services, and increase program
duration, we recommend providing $1.228 billion to the Quality
Improvement fund. Investing in the Quality Improvement fund, rather
than mandating funds to be used to expand hours of service as the
President's budget does, enables programs to determine areas of
greatest need for their individual program and improve services in
their own community. This is especially true for rural programs and we
believe that it will still accomplish the Administration's goal of
increasing the duration of instruction time to meet the needs of
working families. We encourage the funds, as well as all other funds in
the Head Start base, to be disseminated in accordance with such process
described in the Head Start Act, specifically including no less than
4.5 percent of the funds be made available to Migrant and Seasonal Head
Start programs and no less than 3 percent for American Indian/Alaska
Native Head Start programs.
Early Head Start Expansion and Child Care Partnerships
We are thrilled that the first round of Early Head Start-Child Care
Partnership grants have been awarded, resulting in an additional 30,000
vulnerable infants and toddlers now able to access high quality early
learning. We encourage the Subcommittee to include $500,000,000 in
fiscal year 2016 to continue to support this emerging program. Given
the challenges expressed by providers in the field and the collective
desire to expand access to high-quality programs immediately, we
encourage the Administration to keep the option of these funds being
available for straight Early Head Start expansion as well. Mandating or
incentivizing one model of service, such as the child care partnership,
would eliminate the opportunity for many providers to compete for these
funds, especially in rural and frontier communities that have few
available partner options. The grants, whether for expansion,
conversion, or partnerships, should be awarded based on how effectively
the model design fits the needs of the community in question, versus an
adherence to a partnership model that may be inappropriate to that
locality.
Head Start is a High Yield Investment
NHSA believes that the budget caps now in place limit opportunities
to make high-yield investments in non-defense discretionary spending.
Every President and Congress over the past 50 years has supported Head
Start on a bipartisan basis. While we have no reason to believe that
this support will wane in coming years, we do recognize the constraints
the caps put on the Subcommittee. Every dollar invested by the Federal
Government should seek a high yield impact and be used accountably.
Studies show that for every one dollar invested in a Head Start child,
society earns at least $7 back through increased earnings, employment,
and family stability; \1\ as well as decreased welfare dependency,\2\
healthcare costs,\3\ crime costs,\4\ grade retention,\5\ and special
education.\6\ These are the very results taxpayers demand for their
investments.
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\1\ Ludwig, J. and Phillips, D. (2007). The Benefits and Costs of
Head Start. Social Policy Report. 21 (3: 4); Deming, D. (2009). Early
childhood intervention and life-cycle skill development: Evidence from
Head Start. American Economic Journal: Applied Economics, 1(3): 111-
134; Meier, J. (2003, June 20). Interim Report. Kindergarten Readiness
Study: Head Start Success. Preschool Service Department, San Bernardino
County, California; Deming, D. (2009, July). Early childhood
intervention and life-cycle skill development: Evidence from Head
Start, p. 112.
\2\ Meier, J. (2003, June 20). Kindergarten Readiness Study: Head
Start Success. Interim Report. Preschool Services Department of San
Bernardino County.
\3\ Frisvold, D. (2006, February). Head Start participation and
childhood obesity. Vanderbilt University Working Paper No. 06-WG01;
Currie, J. and Thomas, D. (1995, June). Does Head Start Make a
Difference? The American Economic Review, 85 (3): 360; Anderson, K.H.,
Foster, J.E., & Frisvold, D.E. (2009). Investing in health: The long-
term impact of Head Start on smoking. Economic Inquiry, 48 (3), 587-
602.
\4\ Reuters. (2009, March). Cost of locking up Americans too high:
Pew study; Garces, E., Thomas, D. and Currie, J. (2002, September).
Longer-term effects of Head Start. American Economic Review, 92 (4):
999-1012.
\5\ Barnett, W. (2002, September 13). The Battle Over Head Start:
What the Research Shows.; Garces, E., Thomas, D. and Currie, J. (2002,
September). Longer-Term Effects of Head Start. American Economic
Review, 92 (4): 999-1012.
\6\ NHSA Public Policy and Research Department analysis of data
from a Montgomery County Public Schools evaluation. See Zhao, H. &
Modarresi, S. (2010, April). Evaluating lasting effects of full-day
prekindergarten program on school readiness, academic performance, and
special education services. Office of Shared Accountability, Montgomery
County Public Schools.
---------------------------------------------------------------------------
Again, the Head Start community understands the pressure the
Subcommittee faces and is grateful for the commitment shown by Congress
and the President to keep early learning, and Head Start in particular,
as a top priority. With a strong concern about the possibility of a
fiscal year 2016 sequester in mind, we urge the Subcommittee to build
on the bipartisan investments made in Head Start and Early Head Start
to increase access, improve quality, and ensure the prosperity of our
next generation--especially in this 15th year of our Nation's
commitment to providing our Nation's most vulnerable children and
families an opportunity to succeed through Head Start. Thank you for
your time and consideration.
[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) has over 35
years of experience providing public policy leadership that supports
children's well-being and tribal self-determination in child welfare
and children's mental health systems. Thank you for the opportunity to
provide fiscal year 2016 budget recommendations for child welfare and
children's mental health programs administered by the Department of
Health and Human Services (DHHS).
child welfare recommendations
A recent report from the Attorney General's Advisory Committee on
American Indian/Alaska Native (AI/AN) Children Exposed to Violence
provided the following recommendation:
Congress and the executive branch shall direct sufficient funds to
AI/AN tribes to bring funding for tribal criminal and civil
justice systems and tribal protection systems into parity with
the rest of the United States (U.S. Department of Justice
[USDOJ], 2014, p. 51).
Tribes, like States, rely on the Federal Government for the
majority of their child welfare funding. Child safety and family
stability are tribal governments' highest priorities, yet their
programs remain drastically underfunded by the Federal Government. This
underfunding has contributed to the increased risk for child
maltreatment of AI/AN children and has stymied efforts to heal victims
of child maltreatment and rehabilitate their families. Congress must
prioritize the safety and well-being of these children and families in
the budget process. NICWA provides the following recommendations:
----------------------------------------------------------------------------------------------------------------
President's fiscal year Fiscal year 2016
Agency Program 2016 budget recommendation
----------------------------------------------------------------------------------------------------------------
DHHS Promoting Safe and Stable Families-Disc. $89.7m $89.7m
ACF/CB (tribal) ($31.8m) ($31.8m)
rrrrrrrrrrrrrrrrrrr
DHHS Child Abuse Discret$48.7m Activities $48.7m
ACF/CB (tribal) (unknown) (unknown)
rrrrrrrrrrrrrrrrrrr
DHHS Community-Based Chi$39.7mse Prevention $60m
ACF/CB (tribal) ($416k) ($600k)
rrrrrrrrrrrrrrrrrrr
DHHS Child Welfare Serv$268.7m $280m
ACF/CB (tribal) ($6.3m) ( $7.1m)
rrrrrrrrrrrrrrrrrrr
DHHS Payments for Foster Care and +$27m for tribal +$27m for tribal
ACF/CB start-up funds start-up funds
rrrrrrrrrrrrrrrrrrr
DHHS Maternal Infant & Early Childhood Home $500m $500m
HRSA Visiting Program (tribal) ($15m) ($15m)
----------------------------------------------------------------------------------------------------------------
priority recommendations
Payments for Foster Care and Permanency
DHHS, Administration for Children and Families
Budget Recommendation.--Increase this program's funding by $27
million to specifically support tribal Title IV-E program start-up for
tribes with approved Title IV-E plans.
The Fostering Connections to Success and Increasing Adoptions Act
(2008) provided tribal governments with historic new opportunities to
access foster care and permanency funding and technical assistance
under the Title IV-E program--an area of child welfare services where
tribes are woefully underfunded.
As described in a recent GAO report (2015) more tribes are not
running Title IV-E programs because Title IV-E does not provide the
funding or support needed by many tribes to actually begin
implementation of the program. Essential to Title IV-E implementation
is the ability to provide a substantial non-Federal match and support
initial caregiver payments and program costs with tribal funds. Yet,
tribes interested in operating IV-E do not have the same access to
general revenue as States. Also essential to Title IV-E implementation
is the staffing and infrastructure necessary to support expanded
services, additional requirements, and new accounting systems. Tribes--
who have been chronically underfunded and only reassumed control over
their child welfare services in 1978--do not have the same child
welfare infrastructure or capacity as States.
The President's fiscal year 2016 budget requests an increase of $27
million to the Payments for Adoption and Permanency Program to allow
for tribes that have approved Title IV-E plans to apply for start-up
funding. For tribes to successfully access Title IV-E and children to
have safe and supported foster homes this program must be funded.
Promoting Safe and Stable Families (Social Security Act Title IV-B,
Subpart 2)
DHHS, Administration for Children and Families
Budget Recommendation.--Increase discretionary funding in this
program to $89.75 million to support the President's $20 million
initiative to increase tribal capacity and rural child welfare.
The Promoting Safe and Stable Families (PSSF) Program provides
funds to tribes for coordinated child welfare services that include
family preservation, family support, family reunification, and adoption
support services. There is a 3 percent set-aside for tribes based on a
formula, however if a tribe would qualify for less than $10,000 then it
is not eligible to receive any funding under this program. This means
that many tribes, typically those tribes who are most in need, cannot
access PSSF funding because the overall appropriation is currently too
low and affects the individual tribal allocation. This means that
tribes are providing intensive family preservation and family
reunification services in spite of inadequate funding and insufficient
staffing. This puts incredible strain on individual workers and
programs. This strain stands in the way of tribes' ability to build
capacity, expand programs, and coordinate services.
The President's fiscal year 2016 budget includes a $20 million
increase to PSSF Program discretionary funds for a tribal child welfare
capacity building initiative. This initiative would provide tribes with
the resources necessary to support the staff time, infrastructure, and
development of child welfare departments and services. NICWA recommends
that this initiative be funded.
children's mental health
The Attorney General's Advisory Committee on American Indian/Alaska
Native Children Exposed to Violence provided the following
recommendation:
The Secretary of Health and Human Services should increase and
support access to culturally appropriate behavioral health
services in all AI/AN communities (USDOJ, 2014, p. 88).
Children's Mental Health funding must also account for the
understanding that effective mental and behavioral healthcare requires
an entire tribal system dedicated to treatment. In order to effectively
serve AI/AN children and communities, funding must provide flexible
opportunities that allow tribes to integrate mental and behavioral
health interventions throughout government services. Congress must
provide the funding necessary to help AI/AN youth access life-saving
mental and behavioral health services. NICWA provides the following
recommendations:
----------------------------------------------------------------------------------------------------------------
President's fiscal year NICWA fiscal year 2016
Agency Program 2016 budget recommendation
----------------------------------------------------------------------------------------------------------------
DHHS Programs of Regional and National $6.5m $8.5m
Significance--
SAMHSA Children and Family Pro ams (Reserve $6.5m for
(includes Circles of Care) Circles of Care)
rrrrrrrrrrrrrrrrrrr
DHHS Children's Mental He$117mServices Program-- $117m
SAMHSA Systems of Care
rrrrrrrrrrrrrrrrrrr
DHHS GLS State/Tribal Youth Suicide Prevention $40.5m $40.5m
SAMHSA
rrrrrrrrrrrrrrrrrrr
DHHS GLS Campus Suicide Preve$8.9m Program $9.5m
SAMHSA
rrrrrrrrrrrrrrrrrrr
DHHS AI/AN Suicide Prevention $2.9m $3m
SAMHSA
rrrrrrrrrrrrrrrrrrr
DHHS Tribal Behavioral Health Grant $30m $50m
SAMHSA
rrrrrrrrrrrrrrrrrrr
DHHS Project LAUNCH $34.5m $34.5m
SAMHSA
----------------------------------------------------------------------------------------------------------------
priority recommendations
Tribal Behavioral Health Program
DHHS, Substance Abuse Mental Health Services Administration
Budget Recommendation.--Increase funding of this program to $50
million to make this funding available across Indian Country.
The Consolidated Appropriations Act of 2015 recommended that $5
million be allocated to Tribal Behavioral Health Grants in the form of
the Native Connections grant program appropriating this funding for the
first time. These are 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 to promote
mental health and well-being among AI/AN young people.
As originally conceptualized, the fiscal year 2012 budget request
sought $50 million for a new Behavioral Health-Tribal Prevention Grant.
Approximately half of the funding was to be allocated as a ``base
level'' to federally recognized tribes that applied for these funds. It
was anticipated that the base amount that each tribe would be eligible
for was $50,000. The remaining funding would be distributed to best
serve AI/AN communities. As eventually passed by Congress in the 2015
budget, funding for what is now known as the Native Connections grant
program, focuses more specifically on youth and, due to the level of
funding, are competitive grants available to approximately 20 tribes
based on the per capita suicide rate and an application process. The
President's fiscal year 2016 budget request includes a $25 million
increase, $10 million additional dollars in the Mental Health Services
appropriations and $15 million new dollars in the Substance Abuse
appropriations, for a total of $30 million. This additional funding is
still not enough to provide the program with adequate support to
fulfill its initial conceptualization--to make it available across
Indian Country. NICWA recommends this program be funded at $50 million
in accordance with the initial conceptualization of the program.
Children's Mental Health Initiative (Systems of Care)
DHHS, Substance Abuse Mental Health Services Administration
Budget Recommendation.--Maintain funding at $117 million to
continue support of the current cohorts of grantees, and allow for new
grantees in fiscal year 2017.
The children's mental health initiative line item 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 plan and implement strategic approaches to
mental health services. These approaches are based on important
principles, they must be family-driven; youth-guided; strengths-based;
culturally and linguistically competent; 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, 17 tribal communities are funded under
the Children's Mental Health Initiative line item.
The system of care model of mental health service provision has
been found to be more in line with the AI/AN worldview and traditional
tribal ways of helping than any other service system. Therefore,
funding should be continued at the fiscal year 2015 level of $117
million so that tribes can continue to access these funds and provide
vital mental health services to children and youth.
If you have any questions about this testimony please contact NICWA
Government Affairs Associate Addie Smith.
References:
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. Retrieved from http:/
/www.justice.gov/sites/default/files/defendingchildhood/pages/
attachments/2014/11/18/finalaianreport.pdf.
______
Prepared Statement of the National Indian Council on Aging
On behalf of the National Indian Council on Aging (NICOA), the only
national organization dedicated to the well-being of American Indian
and Alaskan Native Elders, we thank you for the opportunity to submit
testimony in support of the Department of Health and Human Services'
proposed increase of $2.9 million for the Older Americans Act Title VI
American Indian senior nutrition programs, as well as the Department of
Labor's proposed funding for the Older Americans Act Title V Community
Services Employment for Older Americans program (also known as SCSEP).
American Indians and Alaskan Natives are more likely to live in
poverty in their old age. Title VI is an example of a lack of parity
between States and tribal organizations. According to the 2010 Census,
the American Indian/Alaskan Native population increased at a rate
faster than the total population, rising from 4.1 million to 5.2
million. Yet, the funding for Title VI nutrition and supportive
services programs has continually decreased since fiscal year 2011,
though Title VI recipients are supposed to receive ``comparable
services'' according to the Older Americans Act.
Under the Older Americans Act, Native American nutrition and
supportive services are funded by grants awarded under Title VI to
Indian tribal organizations, Alaskan Native organizations and non-
profit groups representing Native Hawaiians. These grants were awarded
to 264 tribal organizations and 1 Native Hawaiian organization in
fiscal year 2014.
As an organization which works on a daily basis with older American
Indians/Alaskan Natives, we see the increasing need for these services
as the population grows. These services, like the Title III services
that States receive, help delay costly nursing home care and allow
American Indians/Alaskan Natives to remain at home, in the community,
and/or on the reservation, even if they have limitations on their
activities of daily living. According to the Administration for
Community Living's Congressional Justification, the fiscal year 2016
request level will provide 620,000 rides, 2.9 million meals at home,
and 2.5 million meals at congregate sites to over 74,000 American
Indian/Alaskan Native elders.
We also provide our support for Title V of the Older Americans Act,
the Community Services Employment for Older Americans program (also
known as SCSEP). We are proud to serve as a national contractor for the
program, operating in fourteen States. We are pleased that the
President's budget this year does not recommend cutting the program as
it has recommended in prior years. In this time of high unemployment
for older adults, we hope that you continue funding the one program
that is specifically targeted toward low-income older workers at the
$434.4 million level from fiscal year 2014 and fiscal year 2015, if not
consider an increase.
We are also pleased that the President's budget does not recommend
transferring the program from the Department of Labor to the Department
of Health and Human Services. We believe it operates well under the
Department of Labor and does not need to be transferred as has been
proposed in prior years.
As the American Indian/Alaskan Native population ages, now is the
time to provide funding for their nutrition and supportive services. We
hope you will consider the President's request as a modest but
necessary increase for these much-needed programs.
Thank you for your past and future support.
[This statement was submitted by Randella Bluehouse, Executive
Director, National Indian Council on Aging.]
______
Prepared Statement of the National Institute of Child Health and Human
Development
My name is Rachel Gandell. I currently serve as Chair of the
Friends of the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD). On behalf of the Friends, I urge
the Labor, Health and Human Services, Education, and Related Agencies
Appropriations Subcommittee to support at least $32 billion for the
NIH, including $1.37 billion for NICHD for fiscal year 2016. Our
coalition includes over 100 organizations representing scientists,
physicians, healthcare providers, patients and parents concerned with
the health and welfare of women, children, families, and people with
disabilities. We are pleased to support the extraordinary work of
NICHD.
Since its establishment in 1963, NICHD has achieved great success
in meeting the objectives of its broad biomedical and behavioral
research mission, including research on child development before and
after birth; maternal and child health; learning and language
development; women's health and reproductive biology; population
issues; and medical rehabilitation. With sufficient resources, NICHD
could build upon the promising initiatives described in this testimony
and produce new insights into human development and solutions to health
and developmental problems for women, children and families in your
States. Scientific breakthroughs supported by NICHD serve to prevent
and treat many of the Nation's most devastating health problems
including infant mortality and low birthweight, birth defects,
intellectual and developmental disabilities, and the reproductive and
gynecologic health of women throughout their lifespan. Some of these
research areas are described below.
Preterm Birth.--NICHD supports a comprehensive research program to
study the causes of preterm birth, prevention strategies and treatment
regimens. Preterm birth costs our Nation $26 billion annually and is a
leading cause of infant mortality and intellectual and physical
disabilities. Continued prioritization of extramural preterm birth
prevention research, the Maternal-Fetal Medicine Units Network, the
Neonatal Research Network and the intramural research program related
to prematurity are necessary to further this work. Resources should
also be available to support transdisciplinary science as recommended
in NICHD's Scientific Vision to study and identify the complex causes
of preterm birth.
NICHD supports research on the causes of preterm birth with the
goal of discovering ways to prevent it. In the U.S., the rate of
preterm birth is approximately 11.4 percent, one of the highest rates
in all industrialized countries. Although research has identified some
factors that influence preterm birth (e.g., multiple gestation,
infections, diabetes, high blood pressure, closely spaced pregnancies),
it cannot be fully explained by physical health. Support is needed for
research on the complex interaction of psychological, behavioral,
social, and environmental factors in addition to genetic and biological
influences, with the ultimate goal of developing interventions to
decrease this epidemic. In addition, a baby is stillborn in the U.S.
every 21 minutes, and NICHD should join with other researchers to
establish a research agenda that will lead to better prevention
strategies.
National Children's Study (NCS)/Strategic Pediatrics Research.--The
NCS was created as a result of the Children's Health Act of 2000 to
evaluate a wide range of environmental influences on the health and
development of children. After years of effort and public investment,
the NCS was unfortunately deemed unfeasible and was closed. However,
the child health goals of the Children's Health Act remain as important
today as 14 years ago. The President's fiscal year 2016 budget includes
$158 million within the NIH Office of the Director for Strategic
Pediatrics Research to succeed the NCS. The Friends support this
request and urge the NIH, with input and participation from NICHD, to
undertake innovative pediatric research beginning in the prenatal
period to determine the effects of physical and social environments on
child health. We also support the President's budget request for $7
million to maintain and provide researcher access to the data and
biospecimens collected during the NCS pilot phase.
Contraceptive Research and Development.--NICHD's Contraceptive
Discovery and Development Branch supports basic, applied and clinical
research on contraceptive methods. Through its contraceptive evaluation
research, NICHD plays a key leadership role in addressing behavioral
issues related to fertility and contraceptive use. Specific
contraceptive evaluation opportunities and research priorities include
evaluation of the safety and effectiveness of hormonal contraceptive
options for women who are overweight or obese. NICHD's investment in
contraceptive research and development is critical for producing new
contraceptive modalities that are more effective, affordable,
acceptable, and easier to deliver. Specific opportunities and research
priorities in this area include the need for non-hormonal
contraception, pericoital contraception, and multipurpose prevention
technologies that would prevent both pregnancy and sexually transmitted
infections.
Reproductive Sciences.--Through its investment in reproductive
science, NICHD conducts research to improve women's health by
developing innovative medical therapies and technologies and improving
existing treatment options for gynecological conditions affecting
overall health and fertility. NICHD's reproductive science research
makes a vital contribution to women's health by focusing on serious
conditions that have been overlooked and underfunded, despite the fact
that they impact many women. Future work could focus on infertility and
the need for treatments for disorders such as endometriosis, polycystic
ovarian syndrome (PCOS) and uterine fibroids which can prevent couples
from achieving desired pregnancies.
Pelvic Floor Disorders Network (PFDN).--Female pelvic floor
disorders represent a major public health burden with high prevalence,
impaired quality of life and substantial economic costs affecting
approximately 25 percent of American women. The PFDN is conducting
research to improve treatment of these painful gynecological
conditions. Current research is aimed at improving female urinary
incontinence outcome measures and ensuring high quality patient-
centered outcomes.
Development of the Research Workforce.--Adequate levels of research
require a robust research workforce. The years of training combined
with funding uncertainty are disincentives for students considering a
career in biomedical research. For instance, there is a huge gap
between the too-few women's reproductive health researchers being
trained and the immense need for research. NICHD's Women's Reproductive
Health Research (WRHR) Program and Reproductive Scientist Development
Program (RSDP), both aimed at ob-gyns to further their education and
experience in basic, translational, and clinical research, provide
training grants to hundreds of researchers and provide new insight into
a host of diseases, such as ovarian cancer. Continued investment in
these and other training programs at NICHD is critical to future
scientific advances.
Population Research.--The NICHD Population Dynamics Branch supports
a research portfolio on how population change affects the health,
development, and wellbeing of children and their families. The branch
is known for supporting large-scale longitudinal studies, such as the
National Longitudinal Study of Adolescent to Adult Health (Add Health),
a survey of over 20,000 adolescents who have been followed for 15 years
into adulthood, and the Fragile Families and Child Wellbeing Study,
following nearly 5,000 children in large U.S. cities, most born to
unmarried parents between 1998 and 2000. These datasets enable
scientists to understand how genetic, biological and social factors,
including family stability, parental involvement, social networks, and
neighborhoods, interact to influence child health and development. In
2014, scientists using Add Health data reported new findings on the
long-term effects of birth weight and breastfeeding duration on
inflammation (a contributing factor to disease and disability) in early
adulthood.
Sex Differences in Research.--The Friends encourages NICHD to look
at ways to increase data reporting to address gaps in gender and sex
differences in research. Sex differences need to be acknowledged as a
critical biological variable. In addition to including more women in
clinical research, we believe sex differences should be included as
part of the design of all basic biological studies and clinical
research. If the researchers were to consider sex differences in the
design of basic science studies, and incorporate data on sex as a
biological variable in animal and human studies, more appropriate
conclusions could be drawn from basic research, and clinical research
would provide more representative data on safety and efficacy of drugs.
Clinical Trials in Pregnant Women.--Pregnant women have
historically been excluded from most research trials due to concern
that trial participation could harm the fetus. Although there has been
substantial progress in the inclusion of women in federally funded
research, pregnant women are still excluded, even from research that
would advance our knowledge of medical conditions and treatments in
pregnancy. Mindful of the important considerations of clinical trials
on pregnant women, we support establishment of a Federal work group to
propose how clinical research might be done appropriately in this area.
Data on Pediatric Enrollment in NIH Trials.--NIH policy mandates
the inclusion of women, minorities, and children in clinical studies
whenever appropriate. While NIH collects enrollment data on women and
minorities, it does not collect enrollment data on children. We urge
NIH, with leadership from NICHD, to begin tracking the numbers of
children, broken down by pediatric age group, enrolled in NIH-funded
studies. Better tracking is needed to ensure adequate representation of
children in relevant trials.
Mother-Infant Relationships.--NICHD supports multidisciplinary,
cutting edge research to advance our understanding of attachment in
mother-infant relationships and its impact on development. Early life
experiences can have profound impacts on behavioral and health outcomes
later in life, but often require specific experimental controls to
pinpoint the impacts of various factors. Thus, we urge NICHD to
continue support of a robust intramural and extramural research
portfolio identifying and describing the complex interaction of
behavioral, social, environmental, and genetic factors on health
outcomes leading to improved understanding of and interventions for
mental illnesses such as depression, addiction, and autism.
Best Pharmaceuticals for Children Act (BPCA).--Through the BPCA
program, NICHD funds the study of drug products that are important to
children but have been inadequately studied in pediatric populations.
We urge continued funding and support for this important research as
well as support for training the next generation of pediatric clinical
investigators.
Rehabilitation Science.--The National Center for Medical
Rehabilitation Research (NCMRR) currently resides within NICHD, yet
there is a strong need for elevating the stature of NCMRR. We recommend
moving the NCMRR to an independent Institute or Center reporting
directly to the NIH Director, or to establish a new Office of
Rehabilitation Research within the Office of the NIH Director.
Implementation of this structural recommendation would require a
statutory change. Elevation of NCMRR is a critical step in achieving
enhanced coordination of rehabilitation science across all the
Independent Centers at NIH that conduct and support research directly
addressing or related to rehabilitation science.
Down Syndrome.--NICHD-funded investigators have made unprecedented
progress toward identifying treatments to reverse or ameliorate the
cognitive impairment associated with Down syndrome, as well as
understanding how a gene on the 21st chromosome might contribute to the
development of Alzheimer's disease in people with Down syndrome. In
addition, the NICHD-supported Down Syndrome Registry, DS Connect, has
allowed the Down syndrome community to share information and health
history in a safe, confidential, online database.
Intellectual and Developmental Disabilities Research Centers
(IDDRC).--These Centers have greatly improved our understanding of the
causes of developmental disabilities and have developed effective
treatments consistent with their translational science mission.
However, the Friends are concerned that the IDDRC network does not have
sufficient resources to sustain the progress made in this critical
area. We urge 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.
Human-Animal Interaction.--NICHD plays an essential role in human-
animal interaction research. Sixty-five percent of American households
include a pet, and there is growing evidence of the health benefits of
pet ownership. The bond between humans and animals can impact the
health and development of children, from strengthening early childhood
immune systems to mitigating childhood obesity to improving mental
health. Research on the benefits of animal-assisted therapy for
children with autism spectrum disorder (ASD) and other neurological
conditions relies on the NICHD human-animal interaction research
program. We urge NICHD to continue to support a strong pipeline of
peer-reviewed research in this area.
These research efforts have made significant contributions to the
well-being of all Americans, but there is still much to discover. We
urge you to support NICHD at funding levels that meet current needs for
addressing health issues across the lifespan. Thank you for your
consideration and we look forward to working with you on these critical
issues.
[This statement was submitted by Rachel Gandell, Chair, Friends of
National Institute of Child Health and Human Development.]
______
Prepared Statement of the National Institutes of Health and the
National Eye Institute
executive summary
ARVO requests a $32 billion and $730 million investment in NIH and
NEI, respectively, as well as waiving NIH from sequester cuts and
Budget Control Act caps in fiscal year 2016.
--Taxpayer investment in research has an impressive return on
investment (ROI) of 121 percent. This return takes many forms:
as dedicated scientists founding their own startup companies
after years of taxpayer-supported research; as new technologies
cutting waste in the healthcare system; as entire new private
industries supporting companies, jobs and economic growth.
--While the U.S. has largely paused its investments in research,
China has accelerated its own. In the past 10 years, China has
tripled the amount of money flowing to its researchers. This
flood of resources has attracted ambitious scientists from the
entire world--even causing researchers employed at NEI to
leave. Our loss is their gain.
--NIH and NEI are pushing forward with agency-wide initiatives (e.g.,
BRAIN, Precision Medicine, Audacious Goals) aimed at specific
goals with significant possible outcomes. But these new
initiatives require new investment to be successful. Instead,
since fiscal year 2003 NIH has lost 22 percent of its budget in
inflation-adjusted dollars; NEI is down 25 percent in that same
timeframe and down $25 million since fiscal year 2012.
Past Investments in Research Yield Current Returns on Investment
It's an often cited statistic: every $1 of NIH funding generates
$2.21 in local economic growth.\1\ But, what does that 121 percent ROI
look like in the real world?
---------------------------------------------------------------------------
\1\ Families USA ``In Your Own Backyard: How NIH Funding Helps Your
State's Economy'' (2008).
---------------------------------------------------------------------------
In one example, taxpayer ROI takes the form of dedicated scientists
who have doggedly pursued a medical problem that lacks great treatment
options. Gordon Laurie, PhD, Associate Professor at the University of
Virginia, has been studying the cause and potential treatments for dry
eye disease, a debilitating condition that costs the U.S. healthcare
system $3.8 billion a year. Long-term investment in his research has
recently yielded a startup company. Laurie says:
``I recently started a small business that stemmed from my
research in the lab. The company--and its potential impact on
patients and the economy--would not have been possible without
the support I've received from the government over the past 15
years. That kind of direct return on investment is important to
show in a time when every Federal dollar is being
scrutinized.''
In another example, taxpayers rest their head against their ROI
every time they visit an ophthalmologist (eye doctor). A powerful
technology initially discovered over 20 years ago--with NIH support --
has matured to become the standard of care used by ophthalmologists
today. Known as Optical Coherence Tomography (OCT), it offers doctors a
way to spot the appearance of vision-stealing conditions without any
need for needles, blood or eye dilation. If treatment is needed, OCT
minimizes wasted time and expense on ineffective medication or
therapies by offering objective, quantitative images of how the
patient's eyes are responding to treatment. OCT is one of the many
returns on taxpayer investment in research that anyone can see--and one
of the relatively few that preserves sight.
The commercial products made possible by taxpayer-funded scientific
discoveries support companies, jobs and governments. For instance, the
private OCT manufacturing industry (responsible for making the
instruments used by ophthalmologists) hit $350 million in 2012. OCT has
spread to cardiology and other medical disciplines as well, with those
fields having a collective estimated manufacturing market value of over
$60 million in 2012.
These people, products and private industries represent success in
the longstanding model of American-led innovation: public-supported
efforts into research leading to discoveries that grow into new
products--primarily funded by private entities--that go on to benefit
the same public that made it all possible.
While the U.S. Slows Investment, Others Speed Up
The estimated time it takes to move from an initial discovery
(bench) to wide-spread adoption (bedside) is 15-20 years.\2\ Fifteen
years ago, NIH was in the middle of a 5 year span that saw its budget
jump from $13.7 billion (fiscal year 1998) to $27.1 billion (fiscal
year 2003). Since then, appropriations for NIH have essentially flat
lined. Will the rate of innovation begin to flat line as well?
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\2\ Morris, Z. S. et al. doi: 10.1258/jrsm.2011.110180.
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While the U.S. has hit the ``pause'' button on taxpayer investment
in research for the past dozen years, other countries have hit ``fast
forward.'' China, for example, has tripled its support for researchers
in the past 10 years. ARVO member Qingjiong Zhang, MD, PhD, Professor
at Sun Yat-Sen University in Guangzhou, China, completed his training
to be an ophthalmologist in the U.S. before returning home. On a recent
visit to Washington, D.C., he said:
``I think it is valuable to discuss how different the research
climate is in China compared to the U.S. In the past 10 years,
our [research] grants have tripled in value, and my institution
has recruited 10 scientists directly from the NEI. The contrast
is stark--and judging by some of the reactions of my U.S.
peers--surprising.''
When investment dries up in one country, smart and ambitious people
move to another. With them, they take their future ideas, companies and
the accompanying jobs and profits.
But that's not the worst possible outcome from a long-term pause on
investment in research. Susana Chung, OD, PhD, Professor of Optometry
at the University of California, Berkeley, said it best:
``The danger of flat funding is that the next generation could be
choosing other fields. Imagine losing the next generation of
brilliant scientists who may discover ways to save or recover
sight!''
Audacious Goals Possible with Future Investment
Sometimes, big advancements come from individual researchers
toiling away in their labs on their own projects. Other advancements
require the cooperation of huge groups of researchers, public agencies
and private organizations. Recent examples like the BRAIN and Precision
Medicine Initiatives are NIH-led efforts aimed at very specific goals
with far-reaching effects.
The NEI is pushing forward with its own targeted goal of restoring
vision by regenerating nerves in the eye and visual system. Called the
Audacious Goal Initiative (AGI), NEI Director Paul Sieving, MD, PhD,
described the effort:
``The goals are bold but achievable. They are beyond what medicine
currently can do. We are planning for a 10-15 year effort to
reach these endpoints. Success would transform life for
millions of people with eye and vision diseases. It would have
major implications for medicine of the future, for vision
diseases, and even beyond this, for neurological diseases.''
The AGI builds upon discoveries from past investments in research--
such as OCT--and combines these with new discoveries to develop
therapies that could prevent or treat the degeneration of the nerves
responsible for vision.
These initiatives at the NIH and NEI have set ambitious goals that
require increased--not decreased--funding. Yet decreases are exactly
what has happened over the past dozen years. Since fiscal year 2003,
NIH has lost 22 percent of its budget in inflation-adjusted dollars;
NEI is down 25 percent in that same timeframe and down $25 million
since fiscal year 2012.
Again, we all know the number: a 121 percent ROI for every taxpayer
dollar invested in research. ARVO encourages the Senate LHHS
subcommittee to invest our limited taxpayer dollars in agencies that
deliver a great return--in companies and jobs, industries and profits,
therapies and healthy citizens.
ARVO requests an investment of $32 billion in NIH, $730 million in
NEI, and a waiver for NIH from sequester cuts and Budget Control Act
caps in fiscal year 2016. These actions will build upon past taxpayer
investments, undo the counterproductive sequester cuts of fiscal year
2013 and begin to restore the steep loss of purchasing power at NIH and
NEI.
______
Prepared Statement of the National Kidney Foundation
The National Kidney Foundation (NKF) is pleased to submit testimony
in support of the Centers for Disease Control and Prevention Chronic
Kidney Disease Program, the National Institute of Diabetes and
Digestive and Kidney Disease, and the Health Resources and Services
Administration Division of Transplantation. NKF is America's largest
and oldest health organization dedicated to the awareness, prevention
and treatment of kidney disease for hundreds of thousands of healthcare
professionals, millions of patients and their families, and tens of
millions of people at risk. In addition, we have provided universally
recognized evidence-based clinical practice guidelines for all stages
of chronic kidney disease (CKD) since 1997 through the NKF Kidney
Disease Outcomes Quality Initiative (NKF KDOQI). We respectfully
request fiscal year 2016 funding of $2.2 million for the CDC Chronic
Kidney Disease Program, $2.066 billion for NIDDK, and $24 million for
the HRSA Division of Transplantation.
In 2012, more than 636,000 Americans had End Stage Renal Disease
(ESRD), including more than 450,000 dialysis patients and the remainder
kidney transplant recipients, with minority populations
disproportionately affected. Complicating the cost and human toll is
the fact that it is a disease multiplier, with patients very likely to
be diagnosed with diabetes, cardiovascular disease, or hypertension
(two-thirds of ESRD patients have diabetes or hypertension). In 2012,
ESRD was present in less than 2 percent of Medicare beneficiaries but
responsible for nearly 6 percent of Medicare expenditures.\1\
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\1\ 2014 U.S. Renal Data System Annual Report.
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Last year NKF announced an initiative to help improve early
detection and diagnosis of CKD by primary care practitioners. Over 26
million people have CKD, yet only 10 percent are aware they have it.\2\
Intervention at the earliest stage is vital to improving outcomes,
lowering healthcare costs, and improving patient experience, yet in a
recent clinical study only 12 percent of primary care clinicians were
properly diagnosing CKD in their patients with diabetes who are at the
highest risk of kidney disease.\3\ There often is a misconception that
once someone is diagnosed with CKD, there must be a referral to a
nephrologist. However, there are not enough nephrologists to care for
the 15 percent of the U.S. population with chronic kidney disease, nor
is it necessary in most instances for referral to a nephrologist in
early stages. NKF's CKD Primary Care Initiative aims to transform PCP
detection and care of to 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. Our initiative will help build on CDC's program outlined below.
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\2\ Tuot DS, Plantinga LC, Hsu CY, et al. Chronic kidney disease
awareness among individuals with clinical markers of kidney
dysfunction. Clin J Am Soc Nephrol. Aug 2011;6(8):1838-1844.
\3\ Szczech LA, et al. Primary Care Detection of Chronic Kidney
Disease in Adults with Type-2 Diabetes: The ADD-CKD Study (Awareness,
Detection and Drug Therapy in Type 2 Diabetes and Chronic Kidney
Disease), PLOS One November 26, 2014.
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cdc chronic kidney disease program
To address the social and economic impact of kidney disease, NKF
worked with Congress to initiate a Chronic Kidney Disease Program at
CDC in fiscal year 2006. Prior to this, no national public health
program focusing on early detection and treatment of CKD existed. CKD
is often asymptomatic--especially in the early stages--and therefore
goes undetected without laboratory testing. Some people remain
undiagnosed until they have reached CKD Stage 5 and must begin dialysis
immediately. However, cost-effective early identification and treatment
can slow the progression of kidney disease, delay complications, and
prevent or delay kidney failure. NKF urges the Committee to provide
$2.2 million for the CKD program for fiscal year 2016, an increase of
$100,000.
The CDC CKD program is designed to identify members of populations
at high risk for CKD, develop community-based approaches for improving
detection and control, and educate health professionals about best
practices for early detection and treatment. The program has consisted
of three projects to promote kidney health by identifying and
controlling risk factors, raising awareness, and promoting early
diagnosis and improved outcomes and quality of life for those living
with CKD. These projects include (1) demonstrating approaches for
identifying individuals at high risk for CKD through state-based
screening; (2) conducting an economic analysis on the economic burden
of CKD and the cost-effectiveness of interventions; and (3)
establishing a surveillance system for CKD by analyzing and
interpreting information to assist in prevention and health promotion
efforts for kidney disease. The surveillance project includes a CDC
website program containing information on risk factors, early
diagnosis, and strategies to improve outcomes.
As a result of consistent congressional support, the National
Center for Chronic Disease Prevention and Health Promotion at CDC has
instituted a series of projects that could assist in attaining the
Healthy People 2020 objectives. However, increasing the proportion of
persons with CKD who know they are affected requires expanded public
and professional education programs and detection initiatives targeted
at populations who are at high risk. This momentum will be stifled and
CDC's investment in CKD to date jeopardized if line-item funding is not
increased.
A recent study published by researchers leading the program shows
that the burden of kidney disease is increasing and that over half of
U.S. adults age 30-64 are likely to develop CKD.\4\ Congressional
support for an increase in funding to the CDC program will benefit
kidney patients and those at risk for kidney disease, advance the
objectives of Healthy People 2020 and the National Strategy for Quality
Improvement in Health Care, and fulfill the mandate created by Sec. 152
of the Medicare Improvement for Patients and Providers Act. Agency
priorities going forward include addressing disparities among racial
and socioeconomic populations and adding new and local data on CKD
including additional risk factors.
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\4\ Hoeger, Thomas, et al. The Future Burden of CKD in the United
States: A Simulation Model for the CDC CKD Initiative, Am J Kidney Dis.
2015;65(3):403-411.
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While progression of CKD can lead to ESRD, CKD patients are at a
greater risk of death, cardiovascular events and adverse drug events.
An American Heart Association task force noted that decreased kidney
function has consistently been found to be an independent risk factor
for cardiovascular disease (CVD) outcomes and all-cause mortality and
that the increased risk is present with even mild reduction in kidney
function.\5\ Testing for kidney disease in at risk populations provides
the opportunity for interventions to foster awareness, foster adherence
to medications and control risk factors. Therefore the CDC CKD program
addresses three priorities in the National Strategy for Quality
Improvement in Health Care, including (1) making care safer by reducing
harm caused in the delivery of care, (2) promoting the most effective
prevention and treatment of the leading causes of mortality, starting
with cardiovascular disease, and (3) working with communities to
promote widespread use of best practices to enable healthy living.
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\5\ Mark J. Sarnak, et al. Kidney Disease as a Risk Factor for the
Development of Cardiovascular Disease: A Statement from the American
Heart Association Councils on Kidney in Cardiovascular Disease, High
Blood Pressure Research, Clinical Cardiology, and Epidemiology and
Prevention. Circulation 2003: 108: 2154-69.
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Undetected kidney disease can lead to costly and debilitating
irreversible kidney failure. However, cost-effective interventions are
available if patients are identified in the early stages. With the
continued support of Congress, NKF is confident a feasible detection,
surveillance and treatment program can be advanced to as a first step
to slow the progression of kidney disease.
niddk
NKF joins other members of the Friends of NIDDK to request $2.066
billion for the Institute in fiscal year 2016. Medicare spends $87
billion annually to care for patients with kidney disease, including
nearly $29 billion for individuals with ESRD, yet NIH funding for
kidney disease research is only about $600 million annually.
In March, NKF hosted the Second Annual Kidney Patient Summit that
included participation from nearly 100 advocates from NKF and five
other kidney patient organizations. Increased Federal support for
kidney disease research was a top priority in meetings with the
advocates' congressional delegations. This is particularly important
for individuals whose kidney disease is the result of genetic factors.
NIDDK Director Dr. Griffin Rodgers addressed our advocates and
discussed exciting opportunities in CKD research. 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 continue its strong bipartisan support for NIH and fund
NIDDK at this requested level.
Many individuals at high risk of CKD rely on community health
centers for their healthcare services. NKF believes this represents a
valuable opportunity to provide information to patients on risk factors
and increase detection of CKD in early stages. We urge Congress to
direct NIDDK to build upon its efforts from 2008-2010 to ``test
effective strategies for improving CKD detection and care in primary
care settings, focusing primarily on integrating CKD into diabetes
care'' in community health centers as a method to better reach
Americans who are most vulnerable to kidney disease.\6\
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\6\ Quality Improvement in Primary Care Settings, National Kidney
Disease Education Program, National Institutes of Health, NIDDK,
October 10, 2012 http://nkdep.nih.gov/identify-manage/quality-
improvement.shtml.
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hrsa organ transplantation
NKF urges the Committee to provide $26.55 million for organ
donation and transplantation programs in the Health Resources and
Services Administration's (HRSA) Division of Transplantation (DoT),
$3,000,000 above the President's Request. This funding request is
supported by many patient and professional members of the transplant
community.
As of March 15, 2015, more than 123,000 Americans were on the wait
list for a transplant, including nearly 102,000 waiting for a kidney.
Transplantation remains the treatment of choice for most patients with
kidney failure yet few will be given an opportunity to receive a new
kidney. Kidney recipients often have an improved quality of life (and
are more likely to stay in or return to the work force) and
transplantation is tremendously cost effective--Medicare spends about
$25,000 per year on a kidney recipient after the year of transplant,
compared to more than $86,000 annually on a dialysis patient.
Additional activities supported by DoT include initiatives to
increase the number of donor organs. For example, the National Donor
Assistance Program has helped more than 4,800 individuals obtain a
transplant by assisting living donors with out-of-pocket expenses such
as travel and subsistence that are not reimbursed by insurance, a
health benefit program, or any other State or Federal program. Last
year, NKF established an organ donation task force to review the state
of organ donation and identify opportunities to expand the number of
transplants. The task force continues to develop its recommendations
but much of its discussion is focused on opportunities to expand living
donation, and financial constraints are frequently cited as a barrier
to donation. Additional funding for the Donor Assistance Program will
to enable more individuals to consider being a living donor.
Thank you for your consideration of our fiscal year 2016 funding
requests.
______
Prepared Statement of the National League for Nursing
The NLN promotes excellence in nursing education to build a strong
and diverse nursing workforce to advance the health of our Nation and
the global community. The League represents more than 1,200 nursing
schools, 40,000 members, and 26 regional constituent leagues. The NLN
urges the subcommittee to fund the Health Resources and Services
Administration's (HRSA) Title VIII nursing workforce development
programs at $244 million in fiscal year 2016. This amount is equal to
the fiscal year 2010 funding level for the Title VIII programs.
nursing education
Health inequities, inflated costs, and poor healthcare outcomes are
intensifying because of today's shortfall of appropriately prepared
registered nurses (RNs) and licensed practical nurses (LPNs). With 4.5
million active, licensed RNs/LPNs, nurses are the primary professionals
delivering quality healthcare in the Nation. According to the Bureau of
Labor Statistics (BLS), the RN workforce is projected to grow by 19.4
percent from 2012 to 2022, resulting in 1,052,600 job openings due to
growth and replacement needs. BLS also calculates the LPN workforce
will grow by 25 percent resulting in 363,100 job openings during the
same timeframe. This increase is fueled by technological advancements
for treatments, preventive care needs, expanding demand from new health
reform enrollments, and accelerating demand from the two million Baby
Boomers aging into Medicare every year. The situation is further
affected by the needed replacement of some 526,800 jobs vacated by RNs
and 182,900 vacated by LPNs who will leave the profession and/or retire
by 2022.
The nursing shortage continues to outpace the level of Federal
resources allocated by Congress to help alleviate it. Appropriations
for nursing education are inconsistent with the healthcare reality
facing our Nation today. For the last 50 years, the Title VIII nursing
workforce development programs have provided training for entry-level
and advanced practice registered (APRNs) nurses to improve the access
to, and quality of, healthcare in underserved communities. The Title
VIII programs are fundamental to the infrastructure delivering quality,
cost-effective healthcare. The NLN applauds the subcommittee's
bipartisan efforts to recognize that a strong nursing workforce is
essential to health policy that provides high-value care for every
dollar invested in capacity building for a 21st century nurse
workforce. Insufficient Federal investments in the nursing workforce
are a shortsighted course of action that further jeopardizes access to,
and the quality of, the Nation's healthcare delivery.
The current Federal funding falls short of the healthcare
inequities facing our Nation. Absent consistent support, slight 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 15-year nurse and nurse faculty shortage felt throughout
the U.S. health system.
the nurse pipeline and education capacity
Although the recession resulted in some stability in the short-term
for the nurse workforce, policy makers must not lose sight of the long-
term growing demand for nurses in their districts and States. As the
United States tackles the workforce shortage that exacerbates the
stress in the healthcare system, nursing programs across the country
are rejecting qualified candidates because there is not enough faculty
to teach them. Sixty-four percent of all nursing programs turn away
qualified applicants. Pre-licensure nursing programs ? which serve as
the gateway into the nursing workforce ? reject 72 percent of qualified
applicants due to limited space.
NLN research on America's nearly 60,000 nurse educators shows that
a core cause of the shortage is an aging and overworked faculty who
earn less than nurses entering clinical practice do. Sixty percent of
all full-time nurse faculty members are 45- to 60-years old. Fifty-five
percent of nurse faculty says they are likely to leave academic nursing
by 2020. BLS projects a need of 35 percent more faculty members to meet
the expected increase in demand. In addition, with 10,200 current
faculty members expected to retire, 34,200 new nursing instructors will
be needed by 2022.
equally pressing is lack of diversity
Health disparities are multi-dimensional and exist throughout the
United States. These preventable differences in health and health
outcomes adversely affect individuals who experience obstacles based on
race/ethnicity; religion; socioeconomic status; age; cognitive,
sensory, or physical disability; gender identity; and/or geography. The
NLN's goal to attain health equity requires valuing every person
equally, with enduring efforts to address avoidable inequalities and
injustices.
Besides representing an untapped talent pool to remedy the
nationwide nursing shortage, diversity in nursing is essential to
developing a healthcare system that understands and addresses the needs
of 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 26 percent of the student
population and males only 16 percent of pre-licensure RN students. A
survey of nurse educators conducted by the NLN and the Carnegie
Foundation's Preparation for the Professions Program found that only 7
percent of nurse educators were minorities compared with 16 percent of
all U.S. faculty. The lack of faculty diversity limits nursing schools'
ability to deliver culturally appropriate health professions education.
Besides representing an untapped talent pool to remedy the nursing
shortage, ethnic, cultural, and gender-diverse minorities in nursing
are essential to developing a healthcare system that understands and
addresses the needs of our rapidly diversifying population. Workforce
diversity is 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.
title viii federal funding reality
Today's undersupply of appropriately prepared nurses and nurse
faculty, as well as the projected loss of experienced nurses over the
next decade, does not bode well for our Nation. The Title VIII nursing
workforce development programs are a comprehensive system of capacity-
building strategies that provide students and schools of nursing with
grants to strengthen education programs, including faculty recruitment
and retention efforts, facility and equipment acquisition, clinical lab
enhancements, loans, scholarships, and services that enable students to
overcome obstacles to completing their nursing education programs.
HRSA's Title VIII data below provide a perspective on current Federal
investments.
Advanced Nursing Education (ANE)
The ANE program supports infrastructure grants to schools of
nursing for advanced practice programs preparing nurse-midwives, nurse
anesthetists, clinical nurse specialists, nurse administrators, nurse
educators, public health nurses, or other advanced level nurses. In
fiscal year 2013, ANE program grantees trained 10,504 nursing students
and produced 2,475 graduates. In addition, 36 percent of students
trained were underrepresented minorities and/or from disadvantaged
backgrounds. The majority of ANE students were female (90 percent) and
between ages 20 and 29 (31 percent).
Nursing Workforce Diversity (NWD)
NWD grants increase educational opportunities for individuals from
disadvantaged backgrounds (including racial and ethnic minorities
underrepresented in nursing) through scholarship or stipend support,
pre-entry preparation, and retention activities. In fiscal year 2013,
the number of nursing program students trained was 6,691, 2,419 nursing
students graduated from nursing programs, and grantees of the NWD
program provided scholarships to 1,416 students.
Nurse Education, Practice, Quality, and Retention Grants (NEPQR)
NEPQR addresses the critical nursing shortage via projects to
expand the nursing pipeline, promote career mobility, provide
continuing education, and support retention. The NEPQR program trained
more than 1,289 BSN students in fiscal year 2013. The NEPQR program
funded the Veterans' Bachelor of Science in Nursing (VBSN) program for
the first time in fiscal year 2013 and made awards to nine schools.
Forty-five veterans were enrolled in BSN degree programs and five
graduated with a BSN degree. It is estimated that 42 percent of
participating veterans were underrepresented minorities in the field of
nursing, and 56 percent reported coming a financially and/or
educationally disadvantaged background. Lastly, the NEPQR program
funded several Nurse Managed Health Clinics (NMHC) with the primary
purpose of creating infrastructure and serving as clinical training
sites for students across the health professions. It is estimated that
more than 900 health professions students were trained because of these
activities
Nurse Faculty Loan Program (NFLP)
NFLP supports the establishment and operation of a loan fund at
participating schools of nursing to assist nurses in completing their
graduate education to become qualified nurse faculty. Ongoing NFLP
support for faculty production is critical to building the pipeline
that assures the full capacity of the Nation's future nursing
workforce. Targeting a portion of those funds for minority faculty
preparation is fundamental to achieving that goal. In fiscal year 2013,
the NFLP supported 2,401 students pursuing faculty preparation.
Seventeen percent of students who received a loan reported coming from
a disadvantaged background and about one out of every four students
receiving the NFLP loans were underrepresented minorities.
Comprehensive Geriatric Education Program (CGEP)
CGEP provides support to educate individuals in providing geriatric
care for the elderly. This goal is accomplished through curriculum
development and dissemination, continuing education, and traineeships
for individuals preparing for advanced nursing education degrees. In
fiscal year 2013, CGEP grantees awarded traineeships to 77 students--
the majority of whom (70 percent) were pursuing a Master's Degree in
Nursing to become nurse practitioners in the fields of Adult
gerontology or Acute Care in Adult Gerontology. A majority of students
received clinical training in a medically underserved community (62
percent) and/or a primary care setting (74 percent).
NURSE Corps Scholarship and Loan Repayment Program (NURSE Corps)
NURSE Corps offers to individuals, who are enrolled or accepted for
enrollment as full-time or part-time nursing students, the opportunity
to apply for funds. Upon graduation, a nurse is required to work in a
healthcare facility with a critical shortage of nurses for no less than
2 years. The NURSE Corps repays up to 85 percent of nursing student
loans in return for at least 3 years of practice in a designated
nursing shortage area. The trends in nursing projections suggest that
there is a greater need to focus on distribution and diversity in the
RN and LPN workforce. In fiscal year 2014, the NURSE Corps loan
repayment program made 667 loan repayment awards and 412 continuation
awards. The NURSE Corps scholarship program made 242 new scholarship
awards and 13 continuation awards during the same time period.
The NLN urges the subcommittee to fund the Title VIII nursing
workforce development programs at the fiscal year 2010 funding level of
$244 million in fiscal year 2016.
[This statement was submitted by Beverly Malone, Ph.D., RN, FAAN,
Chief Executive Officer and Marsha Adams, Ph.D., RN, CNE, FAAN, ANEF,
President, National League for Nursing.]
______
Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and Members of the Subcommittee, thank you for this
opportunity to provide testimony regarding funding of critically
important Federal programs that impact those affected by multiple
sclerosis. We urge the Subcommittee to provide the following in fiscal
year 2016: at least $32 billion for the National Institutes of Health
(NIH); $5 million for the Lifespan Respite Care Program; robust support
for Medicare and Medicaid; and $12.7 billion for the Social Security
Administration (SSA).
Multiple sclerosis (MS) is an unpredictable, often disabling
disease of the central nervous system that interrupts the flow of
information within the brain, and between the brain and body. Symptoms
range from numbness and tingling to blindness and paralysis. The
progress, severity, and specific symptoms of MS in any one person
cannot yet be predicted. Most people with MS are diagnosed between the
ages of 20 and 50, with at least two to three times more women than men
being diagnosed with the disease.
The National MS Society sees itself as a partner to the government
in many critical areas. As we advocate for NIH research, we do so as an
organization that in 2014, funded approximately $50 million in MS
research through funds generated through the Society's fundraising
efforts. And as we advocate for Lifespan Respite funding, we do so as
an organization that works to provide some level of respite relief for
caregivers. So while we're here to advocate for Federal funding, we do
it as an organization that commits tens of millions of dollars each
year to similar or complementary efforts as those being funded by the
Federal Government.
national institutes of health
As mentioned previously, the National MS Society invested $50
million to MS research in 2014 and sees the NIH as an invaluable
partner to stop MS in its tracks, restore function and end MS forever.
Over the years, NIH research projects have helped make significant
progress in understanding MS, however declining funding has directly
affected its recent ability to advance the field of research.
Approximately $102 million of fiscal year 2014 NIH-appropriated funding
was directed to MS-related research. Since fiscal year 2011, funding
has decreased by $20 million.
Twenty years ago, there were no MS therapies or medications--now
there are twelve. The NIH provided the basic research necessary so that
these therapies could be developed. 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. Despite this progress, there are still
no treatments approved for people living with progressive MS. Only with
continued investment will the innovation momentum continue, allowing us
to find successful treatments for those with progressive MS and a cure
for all.
The NIH also directly supports jobs in all 50 States and 17 of the
30 fastest growing occupations in the U.S. are related to medical
research or healthcare. More than 83 percent of the NIH's funding is
awarded through almost 50,000 competitive grants to more than 325,000
researchers at over 3,000 universities, medical schools, and other
research institutions in every State.
For these reasons, the Society urges Congress to provide at least
$32 billion for the NIH in fiscal year 2016.
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
2011 AARP report, 61.6 million family caregivers provided care at some
point during 2009 and the value of their uncompensated services was
approximately $450 billion per year. 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 National MS Society asks that Congress
provide $5 million for the Lifespan Respite Care Program in fiscal year
2016.
centers for medicare & medicaid services
Medicare.--It is estimated that over 20 percent of the MS
population relies on Medicare as its primary insurer. The majority of
these individuals are under the age of 65 and receive the Medicare
benefit as a result of their disability. Of particular importance to
the MS community are: having appropriate reimbursement levels for
Medicare providers; , maintaining access to diagnostics and durable
medical equipment;, protecting access to needed speech, physical and
occupational therapy services without arbitrary coverage limits or
documentation requirements; updating local coverage determinations to
keep pace with advances in care; and discouraging overly burdensome
cost-sharing for prescription drugs.
Medicaid.--Medicaid provides comprehensive health coverage to over
eight million persons living with disabilities, plus six million
persons with disabilities who rely on Medicaid to fill Medicare's gaps.
The latest statistics (which are pre-recession) show that about 5-10
percent of people with MS have Medicaid coverage. The most recently
available data (2007) reveals that the average annual direct and
indirect (e.g. lost wages) cost for someone with MS in the U.S. is
approximately $69,000. After years of paying to manage their disease,
some people with MS have spent the vast majority of their earnings and
savings, making their financial situation so dire that Medicaid becomes
their only option for health coverage.
The National MS 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
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 $12.7
billion for the SSA's administrative budget so that it can continue
efforts to reduce hearings and disability backlogs, pay monthly
benefits in a timely manner, and determine post-entitlement issues in a
timely manner.
conclusion
The National MS Society thanks the Committee for the opportunity to
provide written testimony and our recommendations for fiscal year 2016
appropriations. The agencies and programs we have discussed are of
vital importance to people living with MS and we look forward to
continuing to working with the Committee to help move us closer to a
world free of MS. Please don't hesitate to contact me with any
questions.
[This statement was submitted by Laura Weidner, Senior Director,
Federal Government Relations.]
______
Prepared Statement of the National Network to End Domestic Violence
Labor, Health and Human Services Appropriations Subcommittee
Chairman Blunt, Ranking Member Murray, Chairman Cochran, Ranking Member
Mikulski 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 for 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 all of the 56 State and
territorial domestic violence coalitions, each of which is a member of
NNEDV, their nearly 2,000 member domestic violence and sexual assault
programs, as well as 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 $253 million in Family Violence Prevention and
Services Act (FVPSA), Violence Against Women Act (VAWA) and related
programs administered by the U.S. Department of Health and Human
Services fiscal year 2016 Budget (specific requests detailed below).
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
nearly three in ten women and one in four men have experienced rape,
physical, violence, or stalking in his or her lifetime. Female victims
of rape, physical violence, or stalking by an intimate partner
experienced severe impacts such as fear, concern for their safety, need
for medical care, injury, need for housing services, and missing work
or school.
The CDC has estimated that 854,000 women in Missouri and 1,094,000
women in Washington State have experienced rape, physical violence, or
stalking by an intimate partner in their lifetime.\1\ 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.\2\ The cycle of intergenerational violence is
perpetuated as children are exposed to violence. Approximately 15.5
million children are exposed to domestic violence every year.\3\ 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.
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\1\ Black, M.C., Basile, K.C., Breiding, M.J., Smith, S.G.,
Walters, M.L., Merrick, M.T., Chen, J., & Stevens, M.R. (2011). The
National Intimate Partner and Sexual Violence Survey (NISVS): 2010
Summary Report. Atlanta, GA: National Center for Injury Prevention and
Control, Centers for Disease Control and Prevention.
\2\ Bureau of Justice Statistics (2008). Homicide Trends in the
U.S. from 1976-2005. U.S. Dept. of Justice.
\3\ McDonald, R., et al. (2006). ``Estimating the Number of
American Children Living in Partner-Violence Families.'' Journal of
Family Psychology, 30(1), 137-142.
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In addition to the terrible cost domestic and sexual violence have
on the lives of individual victims and their families, these crimes
cost 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\ 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 life-threatening violence and begin to rebuild
their lives. To address unmet needs and build upon its successes, FVPSA
and VAWA programs should receive significant increases in the fiscal
year 2016 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 has remained the only Federal funding directly for shelter
programs. Now in its 30th year, FVPSA has made substantial progress
toward ending domestic violence. Despite the progress and success
brought by FVPSA, an unconscionable need remains for FVPSA-funded
victim services.
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
recent multi-State study conclusively shows that the Nation's domestic
violence shelters are addressing victims' urgent and long-term needs
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, demand has increased as
a result of the economic downturn, and victims with fewer personal
resources become increasingly vulnerable. Since the economic crisis
began, three out of four domestic violence shelters have reported an
increase in women seeking assistance from abuse.\8\ As a result,
shelters overwhelmingly report that they cannot fulfill the growing
need for these services.
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\8\ Mary Kay's Truth About Abuse. Mary Kay Inc. (May 12, 2009).
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Each year NNEDV releases a report entitled Domestic Violence
Counts: A 24-hr National Census of Domestic Violence Services (Census).
The report revealed that in just 1 day in 2014, while more than 67,000
victims of domestic violence received services, almost 10,000 requests
for services went unmet, due to lack of funding and resources. Of those
unmet requests, 56 percent were for safe shelter. In 2014, domestic
violence programs laid off nearly 1,400 staff positions including
counselors, advocates and children's advocates (in addition to the
1,700 laid off in 2013), and also had to reduce or completely eliminate
over 1,800 services including emergency shelter, legal advocacy, and
counseling. 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.
In fiscal year 2013, domestic violence programs funded by FVPSA
provided shelter and non-residential services to over 1.3 million
victims. Due to lack of capacity, however, an additional 186,552
requests for shelter went unmet. Since 2011, at least 19 local domestic
violence programs across the country have been forced to close
entirely.
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
continue this work to prevent and end domestic violence, FVPSA funding
must be increased to its authorized level of $175 million.
additional requests
National Domestic Violence Hotline (Administration for Children and
Families)--$5 million; DELTA Prevention Program (Centers for Disease
Control and Injury Prevention)--$6 million; Rape Prevention and
Education (RPE) (Centers for Disease Control and Injury Prevention)--
$50 million; Preventative Health and Health Services Block Grant, Rape
Set-Aside--$7 million.
[This statement was submitted by Kim Gandy, President and CEO,
National Network to End Domestic Violence.]
______
Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair of the National Respite
Coalition (NRC), a network of state respite coalitions, respite
providers, family caregivers, national, State and local organizations
that support respite. The NRC also facilitates the Lifespan Respite
Task Force, a coalition of over 100 national, State and local groups.
The NRC is requesting that the Subcommittee include $5.0 million for
the Lifespan Respite Care Program in the fiscal year 2016 Labor, HHS,
and Education Appropriations bill as recommended in the President's
fiscal year 2016 budget. This will enable:
--State replication of best practices in Lifespan Respite to allow
family caregivers, regardless of the care recipient's age or
disability, to have access to affordable respite, and to be
able to continue to play the significant role in long-term care
that they are fulfilling today, saving Medicaid billions;
--Improvement in the quality of respite services currently available;
--Expansion of respite capacity to serve more families by building
new and enhancing current respite options, including
recruitment and training of respite workers and volunteers; and
--Greater consumer direction by providing family caregivers with
training and information on how to find, use and pay for
respite services.
Who Needs Respite?--A 2013 Pew Research Center survey found that
four in ten adults in the U.S. are caring for an adult or child with
significant health issues, up from 30 percent in 2010 (Fox, S, et al,
2013). A new RAND Corporation study estimates the value of informal
caregiving in the U.S. by friends and relatives of the aging at $522
billion a year. Replacing that care with unskilled paid care at minimum
wage would cost $221 billion, while replacing it with skilled nursing
care would cost $642 billion annually (Chari, et al., 2014). The value
of caregiving increases by at least $100 billion when caregivers of
younger persons are included. Caregiver support is a lifespan issue
with the majority of family caregivers caring for someone under age 75
(56 percent) (National Alliance for Caregiving (NAC) and AARP, 2009).
National, State and local surveys have shown respite to be the most
frequently requested service of the Nation's family caregivers (The
Arc, 2011; National Family Caregivers Association, 2011). Other than
financial assistance for caregiving through direct vouchers payments or
tax credits, respite is the number one national policy related to
service delivery that family caregivers prefer (NAC and AARP, 2009).
Yet respite is in short supply, inaccessible, or unaffordable to a
majority of the Nation's family caregivers. The NAC 2009 survey found
that despite the fact that among the most frequently reported unmet
needs of family caregivers were ``finding time for myself'' (32
percent), ``managing emotional and physical stress'' (34 percent), and
``balancing work and family responsibilities'' (27 percent), nearly 90
percent of family caregivers across the lifespan are not receiving
respite services at all (NAC and AARP, 2009).
A 2014 report prepared by the Rand Corporation for the Elizabeth
Dole Foundation, Hidden Heroes: America's Military Caregivers,
recommended that respite care should be made more widely available to
military caregivers (Ramchand, et al., 2014). The Dole Foundation's
Respite Impact Council recently 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.
Families of the wounded warriors, military personnel who returned
from Iraq and Afghanistan with traumatic brain injuries and other
serious chronic and debilitating conditions, don't have full access to
respite. Even with enactment of the VA Family Caregiver Support Program
which serves only veterans since 9/11, the need for respite will remain
high for all veterans and their family caregivers. A 2010 survey found
that caregivers whose veterans have PTSD are about half as likely as
other caregivers to receive respite (11 percent vs. 20 percent) (NAC,
November 2010). Sixty-eight percent of veterans' caregivers reported
their situation as highly stressful compared to 31 percent of
caregivers nationally, and three times as many say there is a high
degree of physical strain (40 percent vs. 14 percent) (NAC, 2010).
Veterans' caregivers specifically asked for up-to-date lists of respite
providers in their communities and help to find services, the very
thing Lifespan Respite is charged to provide (NAC, 2010).
An estimated 80 percent of all long-term care in the U.S. is
provided at home. This percentage will only rise in the coming decades
with greater life expectancies of individuals with disabling and
chronic conditions living with their aging parents or other caregivers,
the aging of the baby boom generation, and the decline in the
percentage of the frail elderly who are entering nursing homes.
Respite Barriers and the Effect on Family Caregivers.--Barriers to
accessing respite include 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 is designed to help States eliminate
barriers through improved coordination and capacity building.
While most families want to care for family members at home,
research shows that family caregivers are at risk for serious
emotional, mental, and physical health problems (Family Caregiver
Alliance, 2006). 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 (TD) children (McBean, A, et al, 2013). 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
abuse from caregivers among care recipients with significant needs
increases when caregivers themselves are depressed or in poor health
(American Psychological Association, nd).
Supports that would ease family caregiver stress, most importantly
respite, are too often out of reach or completely unavailable.
Restrictive eligibility criteria preclude many families from receiving
services. Children with disabilities age out of the system when they
turn 21 and lose services, such as respite. A survey of nearly 5000
caregivers of individuals with intellectual and developmental
disabilities (I/DD) found the vast majority of caregivers report
physical fatigue (88 percent), emotional stress (81 percent) and
emotional upset or guilt (81 percent); 1 out of 5 families (20 percent)
report that someone in the family quit their job to provide care; and
more than 75 percent of family caregivers could not find respite
services (The Arc, 2011). Respite may not exist at all for those with
Alzheimer's, with conditions such as ALS, MS, spinal cord or traumatic
brain injuries, or children with serious emotional conditions.
Respite Benefits Families and is Cost Saving.--Respite has been
shown to help reduce stress and improve the health and well-being of
family caregivers that in turn helps avoid or delay out- of-home
placements, minimizes precursors that can lead to abuse and neglect,
and strengthens marriages and family stability. A study of parents of
children with autism found that respite was associated with reduced
stress and improved marital quality (Harper, Amber, et al, 2013). A
U.S. 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). 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).
Compelling budgetary benefits accrue because of respite. Delaying a
nursing home placement for one person with Alzheimer's can save
Medicaid and other government programs thousands 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, David S., et al,
2012). In the private sector, U.S. businesses lose from $17.1 to $33.6
billion per year in lost productivity of family caregivers (MetLife
Mature Market Institute, 2006). Higher absenteeism among working
caregivers costs the U.S. economy an estimated $25.2 billion annually
(Witters, D., 2011). Respite for working family caregivers could
improve job performance, saving employers billions.
Lifespan Respite Care Program Helps.--The Federal Lifespan Respite
program, administered by the Administration for Community Living (ACL)
provides competitive grants to eligible State agencies. Congress
appropriated $2.5 million each year from fiscal year 2009--fiscal year
2012 and slightly less in fiscal year 2013-fiscal year 2015. Since
2009, 32 States and DC have received Lifespan Respite Grants. 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 respite
access. Lifespan Respite helps States maximize use of limited resources
across age and disability groups and deliver services more efficiently.
Increasing funding, even slightly, for the program in fiscal year 2016
could allow several new States to start Lifespan Respite Programs and
help assist the remaining grantees to complete the work that they have
started. As it is, given the limited funding for fiscal year 2015, no
new States may be funded and fewer of the current grantees will be
funded to carry on their important work.
How is Lifespan Respite Program Making a Difference?--With limited
funds, Lifespan Respite grantees are engaged in innovative activities
such as:
--In TN and RI, the Lifespan Respite program is building respite
capacity by expanding volunteer networks of providers by
recruiting University students or Senior Corps volunteers or
expanding the national TimeBanks model for establishing
voluntary family cooperative respite strategies.
--In Texas, the Lifespan Respite program has established a statewide
Respite Coordination Center, and an online database.
--In SC, the state respite coalition and the Lifespan Respite program
are partnering in new ways with the untapped faith community to
provide respite, especially in rural areas.
--The North Carolina Lifespan Respite Program has challenged each of
its 100 counties to improve respite service delivery locally,
and has partnered with the Money Follows the Person program to
develop family caregiver peer-to-peer support and respite.
--In NH, new providers have been recruited and trained through
partnerships with the NH National Alliance on Mental Illness,
New Hampshire Family Voices, and others to expand the pool of
respite providers to work with teens and older individuals with
mental health conditions or other groups where respite is in
short supply.
Partnerships between State agencies are changing the landscape. The
AZ Lifespan Respite program housed in Division of Aging and Adult
Services partnered with the State'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 Federal Transit Administration's to develop mobile respite
to serve isolated rural areas of the State. States are building respite
registries and ``no wrong door systems'' to help family caregivers
access respite and funding sources. AL, NC, NV, OK, RI, SC, TN, WA and
others are using Lifespan Respite grants to implement consumer-directed
respite so that family caregivers have control over the respite they
select. Funding must be maintained to help sustain these innovative
State efforts. States are developing comprehensive sustainability
plans, but without Federal support, many of the grantees will be cut
off before they have had a chance to have a lasting impact.
No other Federal program mandates respite as its sole focus, helps
ensure respite quality or choice, and allows funds for respite start-
up, training or coordination to address accessibility and affordability
issues for families. With tens of millions of families affected,
caregiving is a public health issue requiring an immediate proven
preventive response, such as respite. We urge you to include at least
$5 million in the fiscal year 2016 Labor, HHS, and Education
appropriations bill. This will allow Lifespan Respite Programs to be
replicated and sustained. Families, with access to respite, will be
able to keep their loved ones at home, saving Medicaid and other
Federal programs, billions of dollars.
References
American Psychological Association, 2012, Stress in America. http:/
/www.apa.org/news/press/releases/stress/2011/health-risk.aspx.
American Psychological Association (nd) Caregiver Briefcase: Family
Caregiver Well-Being is Important to Care Recipient. http://
www.apa.org/pi/about/publications/caregivers/faq/well-being.aspx.
Aumann, K. and Galinsky, E. et al. (2010). The Eldercare Study:
Everyday Realities and Wishes for Change. New York, NY: Families and
Work Institute.
Chari, A.V., Engberg, J., Ray, K., and Mehrotra, A (2014). The
Opportunity Costs of Informal Elder-Care in the United States: New
Estimates from the American Time Use Survey. Health Services Research,
2014.
Elliott, T.R. & Pezent. (2008). Family caregivers of older persons
in rehabilitation. NeuroRehabilitation, 23, 439--446.
Feinberg, L.; Reinhard, S., Houser, Ari, and Choula, R. (2011).
Valuing the Invaluable: 2011 Update, The Growing Contributions and
Costs of Family Caregiving. Wash, DC: AARP Public Policy Institute.
Fox, Susannah; Duggan, Maeve; Purcell, Kristen. (2013). Family
Caregivers are Wired for Health. Washington, DC: Pew Research Center.
Harper, A; Dyches, TT; Harper, J; Roper, SO; and South, M. (2013).
Respite Care, Marital Quality, and Stress in Parents of Children with
Autism Spectrum Disorders. Journal of Autism and Developmental
Disorders, March 2013.
Health Resources and Services Administration (HRSA), Maternal and
Child Health Bureau (MCHB). U.S. Department of Health and Human
Services. (2011). Children with Special Health Care Needs in Context: A
Portrait of States and the Nation. Rockville, Maryland: U.S. Department
of Health and Human Services. http://mchb.hrsa.gov/nsch/07cshcn/.
Mandell, David S. ScD; Xie, Ming, MS; Morales, Knashawn H., ScD;
Lawer, Lindsay, MA; McCarthy, Megan, MA; Marcus, Steven C., PhD.
(2012). The Interplay of Outpatient Services and Psychiatric
Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum
Disorders. Arch Pediatr Adolesc Med. 2012;166(1):68-73.
McBean, Amanda L. and Schlosnagle, Leo. (2013). Relations Between
Sleep Disturbance, General Health, and Memory Among Parents of Children
with Special Health Care Needs. Poster Presentation at the AUCD Annual
Meeting, November 2013.
MetLife Mature Market Institute. (2006). The MetLife Caregiving
Cost Study: Productivity Losses to U.S. Business.
www.MatureMarketInstitute.com.
National Alliance for Caregiving (NAC) & AARP. (2009). Caregiving
in the U.S. Bethesda, MD: Authors. http://www.caregiving.org/research/
general.
National Alliance for Caregiving and AARP. (2009). Caregivers of
Children: A Focused Look at Those Caring for A Child with Special Needs
Under the Age of 18. Washington, DC: Authors. http://
www.caregiving.org/pdf/research/Report_Caregivers_of_Children_11-12-
09.pdf.
National Alliance for Caregiving (NAC). (2010). Caregivers Of
Veterans--Serving On The Homefront, Bethesda, MD: Author.
National Alliance for Caregiving. (2012). Multiple Sclerosis
Caregivers. Washington, DC: Author.
National Family Caregivers Association. (2011). Allsup Family
Caregiver Survey. Kensington, MD.
Provisional Summary Health Statistics for U.S. Adults, National
Health Interview Survey, 2008, dated August 2009.
Ramchand, R, Tanielian, T, Fisher, MP, Vaughan, CA, Trail, TE,
Epley, C; Voorhies, P, Robbins, M, Robinson, R, Ghosh-Dastidar, B
(2014). Hidden Heroes: America's Military Caregivers. Santa Monica, CA:
The Rand Corporation.
Spillman, Brenda C, and Long, S, prepared for the USDHHS (U.S.
Department of Health and Human Services). (2007). Does high caregiver
stress lead to nursing home entry? Washington, DC: Assistant Secretary
for Planning and Evaluation, Office of Disability, Aging and Long-term
Care Policy. January 26, 2007 DHHS Report.
The Arc. (2011). Still in the Shadows with Their Future Uncertain:
A Report on Family and Individual Needs for Disability Supports (FINDS
2011). Wash, DC: Author.
Witters, Dan. The Cost of Caregiving to the U.S. Economy. Gallup
Business Journal, December 2011. http://businessjournal.gallup.com/
content/151049/Cost-Caregiving-Economy.aspx.
[This statement was submitted by Jill Kagan, Chair, National
Respite Coalition.]
______
Prepared Statement of the National Safety Council
Chairman Blunt, Ranking Member Murray, and Members of the
subcommittee, thank you for the opportunity to submit testimony
regarding the National Safety Council appropriations priorities. My
name is Deborah Hersman, and I am President and CEO of the National
Safety Council. We are a more than 100 year-old Congressionally
chartered nonprofit safety organization dedicated to saving lives by
preventing injuries and deaths at work, in homes and communities, and
on the roads through leadership, research, education, and advocacy. Our
more than 13,000 member companies represent nearly 8 million employees
at more than 53,000 U.S. worksites. Today I am seeking support for
$592.1 million for the Occupational Safety and Health Administration
(OSHA) and $334.863 million for the National Institute for Occupational
Safety and Health (NIOSH), two agencies whose work is vital to
protecting the health and safety of America's workers. I am also
seeking support for increased funding to fight the continuing
prescription opioid abuse epidemic, including $68 million for the
Centers for Disease Control and Prevention (CDC) and $210.9 million for
the Substance Abuse and Mental Health Services Administration's
(SAMHSA) Center for Substance Abuse Prevention.
Occupational Safety and Health Administration
The National Safety Council was founded more than 100 years ago
because a group of industrialists were concerned about the high rate of
fatalities and injuries in their workplaces. They believed that these
losses could be prevented by placing a greater focus on the safety of
workplaces and the work being performed. They were right, and ever
since then we have made great progress reducing the number of deaths
and injuries in the workplace--some estimates say we've saved more than
6 million lives. But we continue to lose about 4,000 workers on the job
every year, so there is still a lot of work to be done.
We believe that an effective and efficient OSHA is critical to
sustaining this positive trend. NSC supports balanced, stable funding
for OSHA that adequately funds all the agency's key functions,
including compliance assistance and support to companies striving for
safety excellence, the timely promulgation of regulations to protect
America's workers, enforcement actions against companies that fail to
comply with OSHA standards, and whistleblower protection for workers.
The Council supports the top line funding level of $592.1 million
for the agency included in the President's fiscal year 2016 budget
request, and we strongly encourage the committee to fund the agency at
a minimum of this funding level. While the Council is pleased that OSHA
rulemaking and enforcement efforts have been restored to pre-sequester
funding levels, we continue to have strong concerns about funding
constraints placed on the agency's Federal compliance assistance
efforts, which are presently funded at $68.4 million, more than 10
percent less than fiscal year 2012 enacted levels. The President's
proposed funding level of $73 million would restore most of these
funds.
National Institute for Occupational Safety and Health
Funding NIOSH at a minimum of the fiscal year 2015 program level of
$334.863 million, and preserving the fiscal year 2015 level of $24
million for the Institute's Agriculture, Forestry and Fishing (AgFF)
Sector Program and $27.5 million for the Education and Research Centers
(ERCs), is essential to ensuring that NIOSH can fulfill its mission of
saving lives and preventing injuries.
NIOSH programs play an important role in reducing workplace
injuries and fatalities. NIOSH's primary responsibility is to conduct
research and make recommendations for the prevention of work-related
injuries and illnesses. NIOSH works to ensure the health and safety of
the American workforce through research, education and training. The
Council is disheartened to see the President's budget request again
target for elimination the Institute's Agriculture, Forestry and
Fishing (AgFF) Sector Program and Education and Research Centers
(ERCs).
NIOSH established the AgFF program in 1990 in response to evidence
that agricultural workers were suffering higher rates of injury and
illness than other U.S. workers. The agriculture, forestry, and
fishing, industry fatality rate is more than 8 times that of the all-
industry average. Yearly, almost 18,000 workers in this sector are
injured seriously enough to require time away from work.\1\ Daily, an
average of nearly 330 workers in this sector sustain injuries serious
enough to require medical consultation, and over 1 worker dies from an
injury suffered at work.\2\ Today, the initiative includes nine
regional centers and one national center to address children's farm
safety. These centers conduct vital research leading to evidence-based
standards that save lives. The AgFF Program is the only substantive
Federal effort to meet the obligation to ensure safe conditions for
workers in this sector, and it is effective.
---------------------------------------------------------------------------
\1\ U.S. Bureau of Labor Statistics, U.S. Department of Labor.
(2013). Table 2. numbers of nonfatal occupational injuries and
illnesses by case type and ownership, selected industries, 2012.
Retrieved February 12, 2014, from http://www.bls.gov/news.release/
osh.t02.htm.
\2\ National Safety Council. (2014). Injury Facts, 2014 Edition.
---------------------------------------------------------------------------
NIOSH supports education and research in occupational health
through academic degree programs and research opportunities, primarily
through 18 university-based ERCs located at leading universities around
the country serving all 50 States. The mission of the ERCs is to reduce
work-related injuries and illnesses in the U.S. by performing
prevention research and by educating, through degree programs and
continuing education, high-quality professionals who implement programs
to improve occupational health and safety and minimize the dangers
faced by workers across the country. The ERCs provide programs in a
unique group of disciplines that benefit employers of all sizes and
industries in every part of the country. Currently, the ERCs are
responsible for supplying many of the country's OSH graduates who will
go on to fill professional roles. With an aging occupational safety and
health workforce, and a critical shortage of qualified OSH
professionals, ERCs are essential to educating the next generation of
professionals.
prescription drug overdoses
Today, fatalities from drug overdose, mainly due either directly or
indirectly to opioid pain killers, have become the leading cause of
unintentional death. Two of the agencies working to address the
prescription drug overdose epidemic are the Centers for Disease Control
and Prevention and the Substance Abuse and Mental Health Services
Administration.
CDC Injury Center
The CDC's Injury Center addresses the need for a coordinated effort
to prevent injuries in the United States, and functions as a focal
point for the public health approach to preventing injuries. CDC Injury
Center activities have focused on two main drivers of the prescription
drug overdose problem--high-risk prescribing and high-risk patients.
Much of their effort to date has focused on conducting research on the
issue, with several peer-reviewed materials recently published.
Funding the Injury Center's prescription drug efforts at the $68
million funding level included in the President's fiscal year 2016
budget request would immeasurably advance the agency's ability to make
a significant impact on the epidemic. CDC would use these additional
funds to expand the Prescription Drug Overdose Prevention for States
program to fund all 50 States and the District of Columbia to create a
unified, national approach to the epidemic. In the past decade, we have
witnessed this epidemic spread from the Appalachian States of Kentucky,
Tennessee, Ohio and West Virginia to become a serious concern on a
national scale, causing thousands of deaths and destroying countless
lives. These funds would be used for activities such as enhancing
prescription drug monitoring programs, implementing guidelines to
improve physician prescribing behaviors, and enhancing insurance
mechanisms to improve prevention.
Substance Abuse and Mental Health Services Administration
Lastly, I'd like to discuss funding for the Substance Abuse and
Mental Health Services Administration (SAMHSA). SAMHSA leads public
health efforts to address behavioral health issues by reducing the
impact of substance abuse.\3\ The Center for Substance Abuse Prevention
(CSAP) is responsible for developing policies, programs, and services
to prevent the onset of illegal drug use, prescription drug misuse and
abuse, alcohol misuse and abuse, and underage alcohol and tobacco use.
---------------------------------------------------------------------------
\3\ SAMHSA. About Us. Accessed from: http://www.samhsa.gov/about-
us.
---------------------------------------------------------------------------
The National Safety Council requests that Congress at a minimum
fund CSAP at the $210.9 million funding level requested in the
President's fiscal year 2016 budget, including $12 million for the
Grants to Prevent Prescription Drug/Opioid Overdose Related Deaths
program, to advance the distribution and use of naloxone.
Naloxone treats opioid and heroin overdoses by stopping the
respiratory depression caused by too much of these drugs. Available by
prescription, it is not a controlled substance and has no demonstrated
potential for abuse. Research has shown that administering naloxone is
a cost-effective and life-saving treatment, and the use of naloxone has
reversed more than 10,000 overdoses.\4\ Another study of naloxone use
among heroin users estimated that 6 percent of overdose deaths were
prevented due to the distribution of naloxone, with 1 death prevented
for every 227 naloxone kits distributed.\5\
---------------------------------------------------------------------------
\4\ Wheeler E. MMWR: community-based opioid overdose prevention
programs providing naloxone--United States, 2010. 2012. Centers for
Disease Control and Prevention.
\5\ Coffin, P. & Sullivan, S. Cost-effectiveness of distributing
naloxone to heroin users for lay overdose reversal. 2013. Annals of
internal medicine.
---------------------------------------------------------------------------
Funding this new grant program in CSAP will provide for grants to
10 States to address the overdose burden. States can use these funds to
purchase naloxone, equip first-responders in high-risk communities,
support education on the use of naloxone and provide the necessary
materials to assemble overdose kits.\6\ In a time of tight budgets at
the Federal, State and municipal levels, ensuring a dedicated funding
stream for these life-saving efforts is critical to driving down the
rate of prescription opioid overdose.
---------------------------------------------------------------------------
\6\ SAMHSA. fiscal year 2016 Congressional Budget Justification.
---------------------------------------------------------------------------
Thank you again for the opportunity to submit testimony for the
record.
[This statement was submitted by Deborah Hersman, President and
CEO, National Safety Council.]
______
Prepared Statement of the National Senior Corps Association
Mr. Chairman, Members of the Committee, my name is Gary Goosman and
I am Director of the Senior Programs Division at the Corporation for
Ohio Appalachian Development. I testify today as President of the
National Senior Corps Association, representing the interests and
ideals of more than 350,000 senior volunteers throughout the country.
SENIOR CORPS is a federally authorized and funded network of
national service programs that provides older Americans with the
opportunity to apply their life experiences to volunteer service.
Senior Corps is comprised of the Foster Grandparent Program, RSVP, and
the Senior Companion Program, through which Americans age 55 and older
provide essential services to cost-effectively address critical
community needs. I am speaking today about the concern of the NSCA and
thousands of elderly Americans that provide services in hundreds of
communities. Last year, the President's budget threatened to eliminate
service opportunities for approximately 200,000 seniors--nearly two-
thirds of those serving in the Retired Senior Volunteer Program (RSVP).
This year additional damage will plague these programs if the previous
sequestration and other cuts are not mitigated.
As expressed by Congressman DeFazio of Oregon, ``Senior Corps and
its associated programs have always received strong bipartisan support
because they are a cost effective way to meet local community needs and
support the health of American seniors. President Nixon signed the
Senior Companion Program into law. President Reagan and First Lady
Nancy Reagan were consistent champions of the Foster Grandparents
Program. President Clinton logically organized Senior Companion, Foster
Grandparent, and RSVP under Senior Corps. President George W. Bush
continued support of all three programs. This year should be no
different.
Unfortunately, the President's fiscal year 2016 budget proposal
does not restore cuts the Senior Corps programs absorbed as a result of
the sequester, and leaves intact the 20 percent funding cut applied to
RSVP in fiscal year 2011.''
The NSCA is in full agreement with Congressman DeFazio and with Ann
Maura, CEO of Voices for National Service when she recently said, ``At
a time when record numbers of Americans are stepping forward to serve
and increasing numbers of communities are looking for innovative ways
to address local challenges, our country should invest in national
service programs.''
NSCA respectfully requests the reversal of the 20 percent cut to
the RSVP program. RSVP programs provide critical support to thousands
of small, non-profit organizations that are the primary safety net for
low income individuals and families in rural and inner city
communities. RSVP engages senior volunteers that allow these
organizations to continue their existence and ensures that our safety
net assists those in need. NSCA respectfully requests $111,241,000 for
the Foster Grandparent Program and $47,007,000 for the Senior Companion
Program (restoring funding to levels prior to sequestration). This
combined expenditure of $221,248,000 will allow for continued support
to existing Senior Corps programs and sponsors.
These grant funds allow existing Senior Corps programs and the
nearly 337,000 volunteers to continue providing critical services,
including:
Foster Grandparent Program provides one-on-one attention to
children and youth most at risk in schools, shelters,
correctional facilities, early childhood centers and after-
school programs. Through a caring, nurturing, mentoring role,
Foster Grandparents provide assistance and encouragement to
help improve reading skills, school attendance, behavior and
the well-being of children in their care. NSCA recommends a
return to budget levels from 2013 that would support 27,900
Foster Grandparents contributing 24 million hours (valued at
$531,360,000 based on Independent Sector's data) to help over
232,300 children and youth. Foster Grandparents currently serve
through more than 320 federally funded programs nationwide and
partner with over 10,000 community organizations. Returning to
2013 funding levels means over 232,000 children could be
provided tutoring, mentoring and one-on-one attention. This
also would provide support for nearly 7,000 children of
incarcerated parents and 2,250 children of military families.
Foster Grandparents are 55 years of age and older with limited
incomes (200 percent of poverty), and serve weekly schedules
ranging from 15-40 hours. They are provided with a modest
hourly stipends, mileage and meal reimbursements, so that they
may volunteer at little or no personal cost to themselves.
RSVP connects volunteers 55 and older with service opportunities
that impact positive change, improve quality of life and meet
critical needs in their communities. Volunteers help build
capacity and improve sustainability in agencies and
organizations where they serve. RSVP engages seniors in a wide
array of community services including health, nutrition, human
services, education, community and economic development, and
public safety to nonprofit and community based organizations.
In 2012 there were 296,000 RSVP volunteers, a decrease of over
100,000 volunteers from the 2010 level of engagement. By
restoring funding to 2010 levels, thousands of additional RSVP
volunteers could be added to improve upon the 62 million hours
of service that was recently delivered (valued at
$1,372,680,000 based on Independent Sector's data). This effort
would be delivered through more than 685 sponsoring programs
nationwide, and work with more than 65,000 community
organizations. Volunteers would mentor more than 80,000
children including 16,000 children of prisoners and provided
independent living services for 696,000 frail elderly and
people with disabilities. RSVP offers flexible volunteer
opportunities with commitments from a few hours a week to 40
hours a week. Volunteers do not receive monetary incentives or
stipends.
Senior Companion Program provides assistance and friendship to
frail individuals who are homebound and, generally, living
alone. By taking care of simple chores, providing
transportation to medical appointments, and offering contact
with the outside world, Senior Companions often provide the
essential services that enable frail citizens to remain in
their homes. The program meets the growing need for cost
effective long-term care for the aging by helping with
activities of daily living, friendly visits and providing
respite for primary caregivers. By restoring funding to 2013
levels, 13,600 Senior Companions could provide 12.2 million
hours of service (valued at $270,108,000 based on Independent
Sector's data) through 194 federally funded programs nationwide
to help 60,940 frail clients, preventing premature and costly
institutionalization. Senior Companions are 55 years of age and
older with limited incomes (200 percent of poverty), and serve
weekly schedules ranging from 15-40 hours. They are provided
with hourly stipends, mileage and meal reimbursements, so that
they may volunteer at little or no personal cost to themselves.
Some prime examples of Senior Corps service are:
--Gene Assink, a Washington RSVP volunteer, has logged 34,694 miles
since 1999 driving clients to medical appointments and grocery
stores, saving clients and agencies over $14,000 in mileage
costs. RSVP volunteer, Ted Stegemen, draws intricate plans and
directs a team of volunteers to make repairs on older homes of
low-income neighbors.
--An angry, temperamental 4th grade boy ended daily trips to the
office after being matched with the encouragement and
persistence of 91 year-old Missouri Foster Grandparent, Marie
Yeakey, and has now graduated from high school.
--While doing routine housework, a Missouri woman's fall resulted in
permanent paralysis of her arms and hands. Three Senior
Companions provide caregiver respite for her daughter, the
mother of three young children ages 7, 5 and 18 months and son-
in-law, a long haul truck driver.
It has been stated that baby boomer and senior volunteers represent
our Nation's single and fastest growing resource. During this
unprecedented economic crisis facing our Nation, the number of baby
boomer and senior volunteers should be greatly expanded and mobilized
as solutions to the problems facing our local communities. We need to
provide the opportunity for thousands more older adults to serve in
their communities and enhance the lives of those most in need,
including children with special needs, the frail and isolated elderly
striving to maintain independence, and expanding the services of local
non-profit agencies.
[This statement was submitted by Gary Goosman, President, National
Senior Corps Association.]
______
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 2016 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 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 are part of a university (RIT) that includes more than
16,000 hearing students studying at the associate, baccalaureate,
master's and doctoral levels. 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 2016 I would like to request
$68,451,000 for Operations. NTID has worked hard to manage its
resources carefully and responsibly. As of Fall 2014, NTID's workforce
had been reduced by almost 8 percent as compared to pre-sequestration
levels with a corresponding 13 percent decrease in personnel
compensation costs. In terms of non-Federal revenues, from fiscal year
2010 to fiscal year 2015, student tuition and fees increased by 37
percent to offset the rising costs of providing a state-of-the-art
college education. Additionally, from fiscal year 2006 to fiscal year
2014, NTID raised approximately $21 million in support from individuals
and organizations.
NTID's fiscal year 2016 request of $68,451,000 in Operations would
allow NTID to admit all qualified students for Fall 2016 enrollment,
keep the fiscal year 2016 tuition increase relatively low (3-4
percent), and continue to offer Grants in Aid to more students. With
this funding, NTID can continue to hire and maintain crucial positions
that support our students, such as sign-language interpreters,
captionists, audiologists, etc. These positions were cut as a result of
sequestration, causing large waiting lists for these services. With
this fiscal year 2016 request, NTID can continue to propose new
technical programs for our students, purchase the cutting-edge
equipment necessary for their success, and ensure 40-year-old classroom
spaces are meeting their needs.
enrollment
Truly a national program, NTID has enrolled students from all 50
States. In Fall 2014 (fiscal year 2015), NTID's enrollment was 1,387
students. For fiscal year 2016, NTID hopes to maintain an enrollment
near 1,400, if resources enable us to do so. NTID's enrollment history
over the last 10 years is shown below:
NTID ENROLLMENTS: FISCAL YEAR 2006--FISCAL YEAR 2015
--------------------------------------------------------------------------------------------------------------------------------------------------------
Deaf/Hard-of-Hearing Students Hearing Students
-------------------------------------------------------------------------------- Grand
Fiscal Year Interpreting Total
Undergrad Grad RIT MSSE Sub-Total Program MSSE Sub-Total
--------------------------------------------------------------------------------------------------------------------------------------------------------
2015......................................................... 1,153 44 16 1,213 146 28 174 1,387
2014......................................................... 1,195 42 18 1,255 147 30 177 1,432
2013......................................................... 1,269 37 25 1,331 167 31 198 1,529
2012......................................................... 1,281 42 31 1,354 160 33 193 1,547
2011......................................................... 1,263 40 29 1,332 147 42 189 1,521
2010......................................................... 1,237 38 32 1,307 138 29 167 1,474
2009......................................................... 1,212 48 24 1,284 135 31 166 1,450
2008......................................................... 1,103 51 31 1,185 130 28 158 1,343
2007......................................................... 1,017 47 31 1,095 130 25 155 1,250
2006......................................................... 1,013 53 38 1.104 116 36 152 1,256
--------------------------------------------------------------------------------------------------------------------------------------------------------
MSSE: Master of Science in Secondary Education of Deaf/Hard of Hearing Students.
Grad RIT: Other graduate programs at RIT.
ntid academic programs
NTID offers high quality, career-focused associate degree programs
preparing students for specific well-paying technical careers. NTID
also is expanding the number of its transfer associate degree programs
to better serve the higher achieving segment of our student population
seeking bachelor's and master's degrees. These transfer programs
provide seamless transition to baccalaureate studies in the other
colleges of RIT. In support of those deaf and hard-of-hearing students
enrolled in the other RIT colleges, NTID provides a range of access
services (including sign language interpreting, real-time speech-to-
text captioning, and notetaking) as well as tutoring services. One of
NTID's greatest strengths is our outstanding track record of assisting
high-potential students to gain admission to, and graduate from, the
other colleges of RIT at rates comparable to their hearing peers.
A cooperative education (co-op) component is an integral part of
academic programming at NTID and prepares students for success in the
job market. A co-op gives students the opportunity to experience a
real-life job situation and focus their career choice. Students develop
technical skills and enhance vital personal skills such as teamwork and
communication, which will make them better candidates for full-time
employment after graduation. Last year, 238 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 92 percent have
found jobs commensurate with their education level. Of our fiscal year
2013 graduates (the most recent class for which numbers are available),
94 percent were employed 1 year later, with 60 percent employed in
business and industry, 31 percent in education/non-profits, and 9
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, 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
studies show 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 and SSDI 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. Higher earnings, of course, yield higher tax
revenues.
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
NTID provides an access services system to meet the needs of a
large number of deaf and hard-of-hearing students enrolled in
baccalaureate and graduate degree programs in RIT's other colleges as
well as students enrolled in NTID programs who take courses in the
other colleges of RIT. Access services also are provided for events and
activities throughout the RIT community. Access services include sign
language interpreting, real-time captioning, classroom notetaking
services, captioned classroom video materials, and Assistive Listening
Services.
As enrollments have steadily increased, so has the demand for
access services. In fiscal year 2014, 132,055 hours of interpreting
were provided--an increase of 13 percent compared to fiscal year 2010.
In fiscal year 2014, 21,601 hours of real-time captioning were provided
to students--an 11 percent increase over fiscal year 2010. The increase
in demand is partly a result of the increase in the number of students
enrolled in baccalaureate programs at RIT and the number of students
with cochlear implants. In fiscal year 2015, there were 529 deaf and
hard-of-hearing students enrolled in baccalaureate programs at RIT, an
11 percent increase compared to fiscal year 2010, and 394 students with
cochlear implants, a 44 percent increase over fiscal year 2008.
summary
It is extremely important that NTID's fiscal year 2016 funding
request be granted in order that we might continue our mission to
prepare deaf and hard-of-hearing people to excel in the workplace. 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/SSDI payments. NTID's employment rate
is 92 percent over the past 5 years. Therefore, I ask that you please
consider funding our fiscal year 2016 request of $68,451,000 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 outstanding educational record of service with people who are deaf
and hard of hearing, remains deserving of your support and confidence.
Likewise, we will continue to demonstrate to Congress and the American
people that NTID is a proven economic investment in the future of young
deaf and hard-of-hearing citizens. Quite simply, NTID is a Federal
program that works.
[This statement was submitted by Dr. Gerard J. Buckley, President,
NTID, Vice President and Dean, RIT.]
______
Prepared Statement of the National Viral Hepatitis Roundtable
The National Viral Hepatitis Roundtable, on behalf of the above
listed organizations, respectfully submits this testimony to the U.S.
Senate Appropriations Subcommittee on Labor, Health and Human Services,
and Education, and Related Agencies (LHHS) regarding the fiscal year
2016 Appropriations budget hearing. As a coalition of organizations
representing HIV/AIDS, viral hepatitis, drug policy, and faith-based
organizations, among others, we are gravely concerned about the public
health consequences created by the restriction of Federal funds to
local health agencies to provide prevention programming through syringe
services programs (SSPs).
Recent headlines such as ``Indiana calls in CDC to help with HIV
outbreak'' should resonate with Members of this subcommittee with
jurisdictional oversight of prevention programs. As of March 20th,
there were 55 confirmed and 13 preliminary positive cases of HIV from
the sharing of drug injection equipment in Indiana along the Kentucky
border. In fact, Governor Pence (R-IN) has declared a public health
emergency and issued an executive order allowing for the operation of
an SSP to help reduce the transmission of blood borne disease.
We therefore urge the Subcommittee to prevent policy riders
prohibiting the use of Federal funds for any program for the purpose of
distributing needles or syringes for the purpose of preventing the
spread of blood borne pathogens from the fiscal year 2016 LHHS
Appropriations Bill. Such language prohibits State public health
authorities from using Federal prevention funding for syringe services
programs which prevent disease transmission, do not encourage drug use
or increase crime, promote public safety, and connect participants to
healthcare and social services, including drug treatment.
Eliminating the ban (1) has received broad national and
international support, (2) supports public and law enforcement safety,
(3) provides for desperately-needed and highly-effective HIV and
hepatitis C prevention among people who inject drugs (PWID), and (4) is
a cost-neutral policy change supporting cost-effective interventions.
broad support
Despite the persistence of the ban on Federal funds for syringe
access, SSPs have enjoyed broad support from many professional and
public health entities. Supportive entities in our own government
include the CDC,\1\ Substance Abuse and Mental Health Services
Administration,\2\ U.S. Surgeon General,\3\ National Institutes of
Health,\4\ and the White House Offices of National AIDS Policy \5\ and
National Drug Control Policy.\6\ U.S.-based organizations expressing
support for syringe access include: the American Medical
Association,\7\ the American Public Health Association,\8\ the National
Academy of Sciences,\9\ the American Academy of Pediatrics,\10\ the
American Nurses Association,\11\ the American Bar Association,\12\ the
U.S. Conference of Mayors,\13\ and the Infectious Diseases Society of
America.\14\ Supportive global entities include: the World Health
Organization,\15\ the World Bank,\16\ and the International Red Cross-
Red Crescent Society.\17\
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\1\ Http://www.cdc.gov/idu/facts/aed_idu_syr.pdf.
\2\ Http://media.samhsa.gov/ssp/.
\3\ Https://www.Federalregister.gov/articles/2011/02/23/2011-3990/
determination-that-a-demonstration-needle-exchange-program-would-be-
effective-in-reducing-drug-abuse.
\4\ Http://consensus.nih.gov/1997/1997PreventHIVRisk104html.htm.
\5\ 5Https://www.whitehouse.gov/blog/2010/07/16/expanding-access-
evidence-based-services-injection-drug-users.
\6\ Https://www.whitehouse.gov/blog/2012/01/05/Federal-funding-ban-
needle-exchange-programs.
\7\ American Medical Association 6/97 Statement on Syringe
Exchange.
\8\ Http://www.apha.org/policies-and-advocacy/public-health-policy-
statements/policy-database/2014/07/08/08/04/defining-and-implementing-
a-public-health-response-to-drug-use-and-misuse.
\9\ Http://www.nytimes.com/1995/09/24/weekinreview/sept-17-23-the-
aids-epidemic-scientists-endorse-needle-exchanges.html.
\10\ Http://pediatrics.aappublications.org/content/94/6/945.
\11\ Http://nursingworld.org/MainMenuCategories/Policy-Advocacy/
Positions-and-Resolutions/ANAPositionStatements/Position-Statements-
Alphabetically/Needle-Exchange-and-HIV.html.
\12\ Http://www.americanbar.org/publications/
governmental_affairs_periodicals/washingtonletter/2011/april/
syringeexchange.html.
\13\ U.S. Conference of Mayors. Needle Exchange: Moving Beyond the
Controversy. Wash., DC: U.S. Conference of Mayors; 1997.
\14\ Http://www.hivma.org/uploadedFiles/HIVMA/News_Announcements/
SEP_Press_Release_May_2014_Final_BEM.pdf.
\15\ Http://www.who.int/hiv/topics/idu/needles/en/.
\16\ Http://siteresources.worldbank.org/INTURBANHEALTH/Resources/
1090754-1242053198381/handbook.pdf, p16.
\17\ Http://www.ifrc.org/PageFiles/96733/
Red_Cross_spreading_the_light_of_science.pdf.
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It is long past time to treat syringe access for what it is--a
critical component of any comprehensive response to the interconnected
epidemics of opioid and heroin addiction, HIV/AIDS, hepatitis C, and
overdose which have gripped the Nation.
supporting public and law enforcement safety
SSPs do much more than provide sterile syringe access. A practical
service SSPs are able to provide, thanks to the trust established among
PWID, is used syringe collection and disposal. Fear of arrest or
incarceration for possession of syringes (considered illegal drug
paraphernalia by many States), can result in improper disposal or
failure to disclose possession if stopped by law enforcement. When SSPs
provide safe disposal, the majority of syringes distributed are
returned.\18\ Safe disposal reduces the risk of accidental needlestick
injuries for the public, whether for children playing in parks or for
first-responders at a medical emergency. SSPs' safe disposal services
also reduce the risk of needlestick injuries for police officers,\19\
an occupational hazard that concerns many officers and their families.
Finally, there is no evidence supporting the assertion that SSPs
increase either crime or drug use.
---------------------------------------------------------------------------
\18\ Http://www.amfar.org/uploadedFiles/--amfarorg/Articles/
On_The_Hill/2013/IB%20SSPs%20031413.pdf, p4.
\19\ Ibid.
---------------------------------------------------------------------------
effective infectious disease prevention
Syringe services programs have been proven over the last 20 years
to be highly effective at reducing HIV and hepatitis C
transmission,\20\ two viruses that disproportionately impact PWID. Many
also provide services such as HIV and hepatitis C testing, overdose
prevention training, referrals to social services and housing, as well
as linkage to medical care, mental healthcare, and drug treatment
services for communities not often served by traditional healthcare
providers. SSPs are a crucial support for PWID at every point along the
continuums of care for both HIV and hepatitis C. The District of
Columbia exemplifies this--when Congress lifted a similar ban barring
the District from using its own local dollars on SSPs in 2007, the DC
Department of Health expanded syringe access services and subsequently
reported an 81 percent decrease in new HIV infections among PWID from
2008-2012.\21\
---------------------------------------------------------------------------
\20\ Http://www.who.int/hiv/pub/idu/pubidu/en/.
\21\ Http://doh.dc.gov/sites/default/files/dc/sites/doh/
page_content/attachments/Newly%20Diagnosed%20HIV%20Cases.pdf, p17.
---------------------------------------------------------------------------
It is a critical time to support SSPs as a tool in addressing the
hepatitis C and HIV epidemics. As Americans across the Nation are
devastated by the crisis of prescription opioid addiction and overdose,
the trend--particularly among youth under 30 in rural and suburban
communities--begins with misuse of oral opioid painkillers, to
experimenting with injecting, followed often by a transition to
heroin.\22\ Directly on the heels of this opioid/heroin and overdose
crisis, is a new wave of the hepatitis C epidemic, with the Centers for
Disease Control and Prevention (CDC) reporting a 75 percent increase in
new infections from 2010-2012 \23\ (likely a significant underestimate
due to lack of surveillance infrastructure). In response to the
overwhelming burden of hepatitis C in this context, the Kentucky State
Legislature passed a comprehensive bill to address these issues in
March 2015, effectively legalizing SSPs as part of its package of
legislation.\24\
---------------------------------------------------------------------------
\22\ https://www.aids.gov/pdf/hcv-and-young-pwid-consultation-
report.pdf.
\23\ Http://www.cdc.gov/hepatitis/Statistics/2012Surveillance/
Commentary.htm#hepC.
\24\ Http://www.cincinnati.com/story/news/politics/beating-heroin/
2015/03/24/ky-heroin-deal-reached-last-day/70405676/.
---------------------------------------------------------------------------
With overlapping modes of transmission, HIV often follows in
hepatitis C's tracks, and Indiana is the first to experience a large
outbreak of HIV among a network of people injecting an opioid
painkiller.\25\ As mentioned above, Governor Pence declared the
outbreak a public health emergency, with a temporary allowance for SSPs
in the county where the outbreak occurred. This was an important step
in the right direction, but for interventions like SSPs to be truly
impactful, they must be legal, widespread, and fully resourced. We may
look to Scotland for a successful country-wide example, which saw a
significant decrease in hepatitis C incidence upon expansion of two key
interventions for PWID: SSPs and opioid substitution therapy.\26\ New
York achieved a major reduction in HIV/AIDS from 1992, when 52 percent
of AIDS cases were attributed to injection drug use, to 2004, when only
5.4 percent of HIV cases were so attributed. The Department of Health
credits the Syringe Exchange and Expanded Syringe Access Program with
the State's remarkable results.\27\
---------------------------------------------------------------------------
\25\ Http://www.indystar.com/story/news/2015/02/25/two-dozen-hiv-
cases-diagnosed-southeastern-indiana/23986393/.
\26\ Http://www.plosone.org/article/
fetchObject.action?uri=info:doi/10.1371/
journal.pone.0104515&representation=PDF.
\27\ Http://www.health.ny.gov/diseases/aids/general/about/
prevsup.htm#harmred.
---------------------------------------------------------------------------
Finally, it is vital to acknowledge SSPs' pioneering role in
providing naloxone access to those at-risk of experiencing or
witnessing overdose. SSPs remain uniquely positioned not only to reach
PWID with prevention and screening for HIV and hepatitis C, but also to
continue to lead the field in overdose prevention, thanks in large part
to the positive relationships built with traditionally hard-to-reach
communities.
cost-neutral and cost-effective
The ban on Federal funds for SSPs takes the form of an annual
General Provisions policy rider in the LHHS Appropriations bill.
Removing the ban language--or replacing it with verbiage affirming the
use of Federal funds for SSPs--is entirely cost-neutral, requiring no
offset. Eliminating the ban costs taxpayers nothing; it simply provides
States and local jurisdictions the control to best utilize their
existing Federal funds to address HIV, viral hepatitis, and overdose
prevention.
Additionally, providing sterile syringes to PWID is proven to be
highly cost-effective. For every dollar invested in syringe access,
approximately $3-8 in HIV treatment are saved.\28\ This does not take
into account savings from averted hepatitis C infection, avoiding the
increased healthcare costs of living with the virus without treatment,
the cost of treatment, or the even higher costs of the potential long-
term consequences of chronic hepatitis C--end-stage liver disease,
liver cancer, and/or liver transplantation.
---------------------------------------------------------------------------
\28\ Http://download-v2.springer.com/static/pdf/564/
art%253A10.1007%252Fs10461-014-0789-
9.pdf?token2=exp=1428003463 acl=%2Fstatic%2Fpdf%2F564%2Fart%25253A10.100
7%25252
Fs10461-014-0789-
9.pdf* hmac=6d08a736f3ca0409b0a5e0596561f95a3db56e462a3787a7e791
2a5055fc3d14.
---------------------------------------------------------------------------
As the map to the right illustrates, despite the ban on using
Federal funds for SSPs, 33 States, the District of Columbia, and Puerto
Rico have made local investments to support the preventive value of
syringe services programs as of June 2014--and that number is growing
as evidenced by Kentucky's recent legislation legalizing SSPs mentioned
previously. Federal grant funding would provide vital support to ensure
the sustainability of SSPs nationwide, as States increasingly elect to
include this intervention among their comprehensive prevention plans.
[The illustrated map follows:]
Again, we strongly urge the Subcommittee to prevent policy riders
prohibiting the use of Federal funds for syringe access in the fiscal
year 2016 LHHS Appropriations bill. We thank Chairman Blunt, Ranking
Member Murray, and members of the Subcommittee for their thoughtful
consideration of our request.
[This statement was submitted by AIDS Foundation Chicago; AIDS
United; American Medical Student Association, Association of Nurses in
AIDS Care; HIV Medicine Association; HIV Prevention Justice Alliance;
Harm Reduction Coalition; National Alliance of State and Territorial
AIDS Directors; National Viral Hepatitis Roundtable; Ryan White Medical
Providers Coalition; United Methodist Church, General Board of Church
and Society; and Urban Coalition of HIV/AIDS Services.]
______
Prepared Statement of the National Viral Hepatitis Roundtable
The National Viral Hepatitis Roundtable (NVHR) respectfully submits
this testimony to the U.S. Senate Appropriations Subcommittee on Labor,
Health and Human Services, and Education, and Related Agencies (LHHS)
regarding the fiscal year 2016 Appropriations hearing. As a broad
national coalition representing over 200 organizations committed to
fighting, and ultimately ending, the hepatitis B and hepatitis C
epidemics, we are gravely concerned about the many missed opportunities
and negative public health consequences resulting from the lack of
resources to adequately address these two communicable viruses in the
United States.
We therefore urge the Subcommittee to increase the allocation for
the Division of Viral Hepatitis (DVH) at the Centers for Disease
Control and Prevention (CDC) to the full $62.8 million requested by the
Administration for fiscal year 2016, an increase of $31.3 million over
fiscal year 2015. Further, particularly due to the current rise in
hepatitis C cases that is interconnected with the opioid and heroin
addiction crisis, we also urge the Subcommittee to prevent policy
riders prohibiting the use of Federal funds for any program for the
purpose of distributing needles or syringes for the purpose of
preventing the spread of blood borne pathogens from the fiscal year
2016 LHHS Appropriations Bill, given the critical role syringe services
programs (SSPs) play in hepatitis C prevention and linkage to
healthcare and drug treatment. For more detailed information regarding
the ban on Federal funds for SSPs, please see separate testimony on the
issue submitted by NVHR and allied organizations to this Subcommittee.
This request is both timely and urgent, given: (1) the vital need
for a robust surveillance infrastructure; (2) the overwhelming
contribution of hepatitis B and C to the rising incidence of liver
cancer; and (3) the current state of the hepatitis C epidemic, with
unique challenges in addressing prevalence and incidence among two
distinct generations, and tremendous opportunity created by new
curative treatment.
scope of the epidemics
Despite a safe, effective vaccine for hepatitis B, and new curative
treatments for hepatitis C, the CDC conservatively estimates that
approximately 1.4 million Americans are living with chronic hepatitis
B, and 3.2 million are living with chronic hepatitis C.\1\ These are
likely underestimates however, as surveillance systems across the
Nation are disjointed at best, with only five States and two
jurisdictions (Florida, Massachusetts, Michigan, New York, Washington,
Philadelphia, and San Francisco) federally funded for such
activities.\2\ Of primary concern is that of the nearly 5 million
individuals thought to be living with hepatitis B and/or C, up to 75
percent of them do not know they are infected with a potentially life-
threatening, communicable virus, as both hepatitis B and C most often
present with no symptoms until the liver is already significantly
damaged.\3\ On average, hepatitis B and/or C will shorten one's
lifespan by 15-20 years.\4\
---------------------------------------------------------------------------
\1\ Http://www.cdc.gov/hepatitis/Statistics/2012Surveillance/
Commentary.htm.
\2\ Http://www.cdc.gov/fmo/topic/Budget%20Information/
appropriations_budget_form_pdf/FY2016_CDC_CJ_FINAL.pdf, p. 85-91.
\3\ Http://www.cdc.gov/fmo/topic/budget%20Information/FY-2016-Fact-
Sheets/FY2016_Pres_Budget_Final_VHHMP.pdf.
\4\ Http://www.cid.oxfordjournals.org/content/58/8/
1047.full.pdf+html.
---------------------------------------------------------------------------
There are significant disparities among various communities for
both of these viruses as well. While comprising less than 5 percent of
the U.S. population, Asian Americans and Pacific Islander communities
comprise over 50 percent of all hepatitis B prevalence.\5\ As hepatitis
B is also endemic in many regions of the world, particularly in Asia
and Africa, the foreign-born and their children are also at risk.\6\
Many diverse communities are highly and disproportionately impacted by
hepatitis C compared to the general population, including veterans,
especially Vietnam-era service members; the ``baby boomer'' birth
cohort (born 1945-1965); communities of color, including tribal
communities; the incarcerated/returning citizens; and people who inject
drugs.
---------------------------------------------------------------------------
\5\ Http://www.cdc.gov/hepatitis/Populations/api.htm.
\6\ Ibid.
---------------------------------------------------------------------------
strengthening surveillance
Surveillance--the ``continuous, systematic collection, analysis and
interpretation of health-related data needed for the planning,
implementation, and evaluation of public health practice'' \7\--is the
core public health service driving effective interventions,
particularly for infectious disease. The current system of surveillance
for hepatitis B and hepatitis C is woefully underfunded, and as such
the available data provides merely a snapshot of the epidemics, albeit
an alarming one. Without significantly bolstering States' ability to
leverage existing systems of surveillance, these epidemics will remain
ahead of our efforts to eliminate them--a goal achievable in the coming
decades with dedicated resources. CDC's Division of Viral Hepatitis has
identified strengthening surveillance as one of its primary strategic
goals given an increase in appropriations.\8\
---------------------------------------------------------------------------
\7\ Http://www.who.int/topics/public_health_surveillance/en/.
\8\ Http://www.cdc.gov/fmo/topic/Budget%20Information/
appropriations_budget_form_pdf/FY2016_CDC_CJ_FINAL.pdf, p. 85-91.
---------------------------------------------------------------------------
hepatitis b, hepatitis c, and liver cancer
Liver cancer is one of several potential long-term consequences of
chronic hepatitis B and C infection, and is one of the most aggressive
and deadliest cancers with a devastatingly low 15 percent 5-year
survival rate for all stages combined.\9\ Despite a downward trend in
incidence of various cancers, unfortunately we see the reverse with
liver cancer where rates are rising. In fact, hepatitis C infection
alone leads all causes of liver cancer burden.\10\ Not only can the
debilitating consequences of hepatitis B and hepatitis C be avoided
with effective intervention--including vaccination for hepatitis B and
curative treatment for hepatitis C--addressing these epidemics can
serve the secondary purpose of preventing a substantial proportion of
primary liver cancer cases.
---------------------------------------------------------------------------
\9\ Http://www.cancer.org/cancer/livercancer/detailedguide/liver-
cancer-survival-rates.
\10\ Http://www.cdc.gov/fmo/topic/budget%20Information/FY-2016-
Fact-Sheets/FY2016_Pres_Budget_Final_VHHMP.pdf.
---------------------------------------------------------------------------
hepatitis c--unique challenges and opportunities
The hepatitis C epidemic presents in two fairly distinct waves.
First is the majority of prevalence, existing among the baby boomer
cohort which comprises about 75 percent of those currently living with
hepatitis C. While this population by and large is not continuing to
transmit the virus, the majority do not know they are infected and have
likely been living with hepatitis C for decades. As this community
ages, the long term impacts of the disease are going to become more
apparent as patients increasingly present with cirrhosis (scarring) of
the liver, end-stage liver disease, liver cancer, and the need for
liver transplantation. A recent study suggests that nearly half of
individuals in this birth cohort already have severe liver scarring and
are in need of immediate treatment.\11\ As baby boomers rapidly age
into Medicare, it is vital to identify those living with hepatitis C
and link them to appropriate care and treatment.
---------------------------------------------------------------------------
\11\ Http://www.hivandhepatitis.com/hepatitis-c/hepatitis-c-topics/
hcv-disease-progression/5086-croi-2015-liver-disease-progression-is-
common-among-baby-boomers-with-hepatitis-c.
---------------------------------------------------------------------------
A second and recently emerging wave of the epidemic drives current
transmission. As Americans across the Nation have been devastated by
the current crisis of prescription opioid addiction--particularly youth
under 30 in rural and suburban communities--the trend begins with
misuse of oral opioid painkillers, to experimenting with injecting,
followed often by a transition to heroin.\12\ Directly on the heels of
this crisis is a new, sustained spike in hepatitis C, with the Centers
for Disease Control and Prevention (CDC) reporting a 75 percent
increase in new infections from 2010-2012 \13\ (likely a significant
underestimate due to lack of surveillance infrastructure). As
illustrated in the map above, while new infections in just three States
--Tennessee, West Virginia, and Kentucky--comprise 20 percent of
overall incidence, a distressing 35 of 41 States reporting data to CDC
saw increases in hepatitis C infection rates.\14\
[The illustrated map follows:]
---------------------------------------------------------------------------
\12\ Https://www.aids.gov/pdf/hcv-and-young-pwid-consultation-
report.pdf.
\13\ Http://www.cdc.gov/hepatitis/Statistics/2012Surveillance/
Commentary.htm#hepC.
\14\ Http://www.cdc.gov/hepatitis/Statistics/2012Surveillance/
Commentary.htm.
Decades of research have proven syringe services programs to be an
effective prevention intervention for hepatitis C, serving also to
connect people who inject drugs to medical, mental health, and social
services, overdose prevention, as well as drug treatment.\15\ It is
critical that States have full control over their existing Federal
prevention grant funding to address the unique circumstances of local
epidemics; as such, lifting the ban on the use of Federal funds for
SSPs is an urgent and cost-neutral policy fix.\16\
---------------------------------------------------------------------------
\15\ Http://www.amfar.org/uploadedFiles/_amfarorg/Articles/
On_The_Hill/2013/IB%20SSPs%20031413.pdf.
\16\ Please see separate testimony on this issue submitted by NVHR
and allied organizations to this Subcommittee.
---------------------------------------------------------------------------
Despite the many challenges currently facing us in catching up to
this epidemic, this is also a time of tremendous opportunity for those
living with hepatitis C. In just the past several years, new direct-
acting antivirals have entered the market that offer cure rates of over
90 percent, as well as much shorter regimens and few to no side effects
compared to previous treatments. With this medical innovation has come
hope for millions, and an effective intervention can be offered to
those who test positive. Although these new options have revolutionized
hepatitis C treatment, there are a number of natural barriers to
treating everyone who needs it; most significantly, up to 75 percent of
those living with hepatitis C do not know it as most will not
experience symptoms, and there is a significant lack of provider
capacity. Building the capacity of providers and scaling efforts to
identify those with hepatitis C are among the strategic priorities DVH
intends to address given a modest increase in resources.
Again, we strongly urge the Subcommittee to increase the allocation
for CDC's DVH to $62.8 million for fiscal year 2016, an increase of
$31.3 million over fiscal year 2015, as well as to prevent policy
riders prohibiting the use of Federal funds for syringe access in the
fiscal year 2016 LHHS Appropriations bill. We thank Chairman Blunt,
Ranking Member Murray, and members of the Subcommittee for their
thoughtful consideration of our request.
[This statement was submitted by Christine Rodriguez, Public Policy
Manager, National Viral Hepatitis Roundtable.]
______
Prepared Statement of the Nephcure Kidney International
summary of recommendations for fiscal year 2016
_______________________________________________________________________
--Provide $32 billion for the National Institutes of Health (NIH)
--Provide a corresponding increase to the NIH Institutes and Centers
--Support the Expansion of the FSGS/NS research portfolio at NIDDK,
the Office of Rare Diseases Research (ORDR) and the National
Institute on Minority Health and Health Disparities (NIMHD) by
funding more research proposals for primary Glomerular Disease
_______________________________________________________________________
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. For this reason,
and on behalf of the thousands of families that are significantly
affected by this disease, we encourage support for expanding the
research portfolio on FSGS/NS at the NIH.
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 recently initiated 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 encourage NIDDK to continue
to support CureGN as well as other primary glomerular disease program
announcements.
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 encourage
NIMHD to continue to study FSGS/NS, including the APOL1 gene.
Thank you for the opportunity to present the views of the FSGS/NS
community. Please contact NephCure Kidney International if additional
information is required.
[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 continued funding at the National
Institutes of Health (NIH) for research on Neurofibromatosis (NF), a
genetic disorder closely linked to many common diseases widespread
among the American population. We respectfully request that you include
the following report language on NF research at the National Institutes
of Health within your fiscal year 2016 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 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, learning disabilities, autism and
attention deficit disorders. 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, a national
organization of NF advocacy groups, I speak on behalf of the 100,000
Americans who suffer from NF as well as approximately 175 million
Americans who suffer from diseases and conditions linked to NF such as
cancer, brain tumors, heart disease, memory loss, and learning
disabilities. Thanks in large 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
Muscular Dystrophy and Cystic Fibrosis 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 a clinical trial of the statin drug Lovastatin, as
well as other categories of drugs.
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.
New Cancer Treatments
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.
One of these tumor types is malignant peripheral nerve sheath tumor
(MPNST), 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 $21 million in
fiscal year 2014. 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 NF research and
will continue to work with you to ensure that opportunities for major
advances in NF research are aggressively pursued. Thank you.
______
Prepared Statement of New Leaders
Thank you for the opportunity to provide testimony regarding the
fiscal year 2016 Labor, Health and Human Services, Education, and
Related Agencies Appropriations bill. This process represents a
tremendous opportunity to create positive, lasting change in our
education system and I hope that New Leaders can provide useful
insights to help guide your decisions on these important issues.
New Leaders is a national non-profit dedicated to enabling high
academic achievement for all children by developing transformational
school leaders and advancing the policies and practices that allow
great school leaders to succeed. Since our founding in 2000, we have
helped to train and equip more than 1,600 school leaders with the
knowledge and skills to positively impact the lives of more than
350,000 children, many of whom are students of color and come from low-
income backgrounds.
New Leaders is committed to making every school a place where great
teachers love to teach and all students love to learn. 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. The current appropriations process is an opportunity
for Congress to show it is serious about improving student outcomes--by
making meaningful investments in the programs that will enable and
empower great principals to create schools where teachers can thrive
and students can excel.
Our more than 15 years of experience have helped us to identify the
following priorities, which are critical for the development of
effective principals and other school leaders, as well as the
improvement of outcomes for students, particularly economically
disadvantaged and other at-risk students. We hope that you will
consider these priorities during your upcoming negotiations.
--The School Leadership Program (SLP), which provides grants to high-
poverty school districts to assist in the recruitment,
preparation, and retention of effective principals, is the only
program currently in the Federal budget dedicated to school
leadership. SLP gives high-poverty districts the resources to
develop dynamic leaders who have a measurable, positive impact
on student achievement; leaders like Principal Alison Harris
and Assistant Principal Erica Jordan-Thomas at Ranson Middle
School in Charlotte, North Carolina. After training and support
from New Leaders, Principal Harris and Assistant Principal
Jordan-Thomas helped Ranson become the second highest
performing Title I school in the district in terms of student
growth. It is critical that we continue to provide school
districts with the resources to develop effective school
leaders and pursue professional development practices that have
shown evidence of effectiveness. We recommend that the fiscal
year 2016 appropriation continue funding for a dedicated school
leadership program. We would support funding the current SLP at
$38.8 million, a substantial increase over the fiscal year 2015
level. We would also be supportive of the President's proposal
to replace and build on SLP through the Teacher and Principal
Pathways as long as the dedicated funding stream for principal
effectiveness includes support for both aspiring principals as
well as and current principals and their instructional
leadership teams. We would also support $138.8 million in
funding for the Teacher and Principal Pathways program proposed
in the Presidents fiscal year 2016 budget request, including
$38.8 million dedicated specifically to principals.
--The Investing in Innovation Fund (i3) supports the development,
validation, and scaling up of innovative strategies and
interventions for addressing persistent education challenges.
The Department has established priorities for i3 relating to
(1) developing and implementing models for principal
preparation that deepen proven leadership skills, and (2)
increasing equitable access to effective teachers and
principals for student from low-income families and other high-
needs students. Thus, i3 can play a key role in identifying and
expanding school leadership development programs that truly
have a positive effect on student achievement and school
performance, especially in predominantly low-income districts.
Take Green Street Academy in Baltimore, Maryland: New Leader
Principal Crystal Harden-Lindsey is hyper focused on the
success of her teachers in this innovative secondary school.
Since assuming the principalship in 2012, Principal Harden-
Lindsay has supported the development of five Emerging Leaders,
teacher leaders who learn to lead teams of teachers to meet
school improvement goals, and two Aspiring Principal Residents,
educators on the path to becoming transformational school
leaders. This ``leadership lab'' approach is enabling Principal
Harden-Lindsey and her team to turn around one of the lowest-
performing schools in the area and has been supported, in part,
by New Leaders' i3-funded leadership programming. New Leaders
recommends funding i3 at a level of $300 million, the amount
requested by the Administration.
--The Teacher Incentive Fund (TIF) provides for the development and
implementation of sustainable, performance-based compensation
systems for teachers, principals, and other personnel in high
need schools in order to increase educator effectiveness and
student achievement. This program has been instrumental in
helping schools and districts move from a pay system based
primarily on seniority to one that focuses on student outcomes.
TIF helps send the message that the ultimate goal is to enable
meaningful learning for all kids--regardless of their
background, zip code, native language, or developmental needs.
Take Memphis City Schools in Memphis, Tennessee: recognizing
the need for strategic compensation to recruit, support, and
retain great teaching talent, the district sought out data.
Based on local survey information from New Leaders' EPIC
Knowledge Management system (created in part with TIF
funding)--including that 81 percent of school leaders and 77
percent of teachers said that higher salaries are ``very
important'' or ``absolutely essential'' in retaining effective
teachers and 96 percent of teachers said that supportive
leadership was critical to their decision to continue
teaching--the district developed a compensation structure with
higher salaries tied to performance rather than years of
experience or education. The district also recognized the
critical role of the principal in creating and maintaining a
supportive context where teachers want to work. New Leaders
recommends at least $350 million in funding for TIF in fiscal
year 2016--the amount requested by the Administration--and a
continued focus on broader human capital systems in schools.
These human capital systems include a deeper focus on school
leadership, in part recognized by re-naming it the Teacher and
Leader Incentive Fund.
--Supporting Effective Educator Development (SEED) makes grants to
national nonprofit organizations for projects that recruit,
select, and prepare, or provide professional development
activities for, teachers or principals. The importance of
recruiting, training, and retaining effective school leaders
cannot be overstated; principals can account for as much as 25
percent of a school's effect on a certain student's
achievement,\1\ and 97 percent of teachers say that the
principal is responsible for determining if a school can
attract and retain great teachers.\2\ It is imperative that we
make the necessary investments in evidence-based programs that
help develop and retain these leaders. New Leaders recommends
that SEED be funded with $117.5 million in set-aside funds in
fiscal year 2016, as recommended in the Administration's budget
request. We also recommend that these funds continue to be used
for non-profits that support either teachers or leaders or
both.
--School Improvement Grant (SIG) provides funding to State education
agencies (SEAs), which the SEAs use to make competitive
subgrants to districts that demonstrate the greatest need and
the strongest commitment to use the funds to support students
in their lowest-performing schools. The SIG program is designed
specifically to support the lowest performing schools--those
that are most in need of strong leadership. In fact, research
has shown that improvement simply does not occur without strong
school leadership.\3\ Take Fenger High School in Chicago,
Illinois: in 2011, Fenger received a 3-year school improvement
grant totaling more than $5.5 million. New Leader Principal
Elizabeth Dozier used the turnaround model framework and
Federal funds to completely re-staff the school and bring in
supplemental academic, social, and emotional support services
for her students. The results of Principal Dozier's school
improvement strategies were profound: the percentage of
students meeting or exceeding State standards more than doubled
in just 3 years. New Leaders recommends $555.8 million in
fiscal year 2016 funding for SIG, the same as recommended in
the Administration's budget request; in particular, New Leaders
supports the Turnaround School Leaders Program that funds
efforts to select, prepare, support, and retain school leaders
in SIG schools.
Thank you for the opportunity to provide the views of New Leaders
on the fiscal year 2016 appropriations. If you would like to discuss
our recommendations, please do not hesitate to contact our Chief Policy
Office, Jackie Gran.
---------------------------------------------------------------------------
\1\ Leithwood, K., Louis, K. S., Anderson, S., & Wahlstrom, K.
(2004). How Leadership Influences Student Learning. New York, NY:
Wallace Foundation.
\2\ Scholastic Inc. (2012). Primary Sources: America's Teachers on
the Teaching Profession. New York, NY: Scholastic and the Bill and
Melinda Gates Foundation.
\3\ Bryk, A. S., Sebring, P. B., Allensworth, E., Luppescu, S., &
Easton, J. Q. (2010). Organizing schools for improvement: Lessons from
Chicago. Chicago, IL: University of Chicago Press. Aladjem, D. K.,
Birman, B. F., Orland, M., Harr-Robins, J., Heredia, A., Parrish, T.
B., & Ruffini, S. J. (2010). Achieving dramatic school improvement: An
exploratory study. Washington, DC: U.S. Department of Education. Louis,
K. S., Leithwood, K., Wahlstrom, K. L., & Anderson, S. E. (2010).
Investigating the links to improved student learning: Final report of
research findings Learning from Leadership Project. Minneapolis, MN:
University of Minnesota.
[This statement was submitted by Jean Desravines, CEO, New
Leaders.]
______
Prepared Statement of the Nursing Community
The Nursing Community is a coalition comprised of 61 national
professional nursing associations that builds consensus and advocates
on a wide spectrum of healthcare issues surrounding education,
research, and practice. These organizations are committed to promoting
America's health through the advancement of the nursing profession.
Collectively, the Nursing Community represents over one million
Registered Nurses (RNs), Advanced Practice Registered Nurses (APRNs-
including certified nurse-midwives (CNMs), nurse practitioners (NPs),
clinical nurse specialists (CNSs), and certified registered nurse
anesthetists (CRNAs)), nurse executives, nursing students, faculty, and
researchers.
For fiscal year 2016, our organizations respectfully request $244
million for the Health Resources and Services Administration's (HRSA)
Nursing Workforce Development programs (authorized under Title VIII of
the Public Health Service Act [42 U.S.C. 296 et seq.]) and $150 million
for the National Institute of Nursing Research (NINR), one of the
centers and institutes within the National Institutes of Health (NIH).
nurses are essential to ensuring access to high-quality 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 approximately over three million licensed providers
in the country. The reach of their care is vast: they offer essential
patient care in a variety of settings, including hospitals, long-term
care facilities, community centers, State and local health departments,
schools, workplaces, and patient homes.
Factors including an aging nursing workforce, an aging Baby Boomer
population, and growth in newly-insured individuals are driving the
demand for nursing services. Additionally, as our Nation's healthcare
system transforms and more services are provided outside of hospital
walls, nurses must be educated for these challenges and opportunities.
Therefore, the recruitment and retention of RNs and APRNs to
underserved areas are a national priority. Moreover, increasing the
number of nursing professionals with advanced education to serve in
this capacity is of critical importance.
The U.S. Bureau of Labor Statistics (BLS) projects that employment
of CRNAs, CNMs, and NPs is expected to grow 31 percent between 2012 and
2022.\1\ A constant focus must be placed on education to ensure a
stable workforce, particularly in geographic regions that will continue
to experience health provider shortages in the coming years. A
significant investment must be made in the education of new nurses to
provide the Nation with the services it demands.
---------------------------------------------------------------------------
\1\ U.S. Bureau of Labor Statistics. (2014). Occupational Outlook
Handbook. Registered Nurses. Retrieved from: http://www.bls.gov/ooh/
healthcare/registered-nurses.htm.
---------------------------------------------------------------------------
title viii nursing workforce development programs: ensuring a pipeline
of highly-educated nurses to serve across the nation
For over 50 years, the Nursing Workforce Development programs,
authorized under Title VIII of the Public Health Service Act, have
helped to build the supply and distribution of qualified nurses to meet
our Nation's healthcare needs. Title VIII programs bolster nursing
education at all levels, from entry-level preparation through graduate
study, and provide support for institutions that educate nurses for
practice in rural and medically underserved communities. Today, the
Title VIII programs are essential to ensure the demand for nursing care
is met.
Title VIII programs target specific aspects of America's nursing
workforce and patient populations that require Federal support in order
to ensure efficient and effective delivery of healthcare services. For
example, in academic year 2013-2014, the Nurse Education, Practice,
Quality, and Retention (NEPQR) program supported 9,448 students. Among
them, 45 were recipients of the innovative NEPQR Veterans' Bachelor of
Science in Nursing program, which assists America's servicemen and
women in pursuit of a nursing career. In addition, 900 health
professions students received clinical training at NEPQR-supported
Nurse-Managed Health Clinics, of which 94 percent were located in
medically underserved areas; 54 percent served as primary care settings
for the community, and 40 percent of which served veteran populations
and their families.\2\
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\2\ U.S. Department of Health and Human Services. (2015). Health
Resources and Services Administration Fiscal Year 2016 Justification of
Estimates for Appropriations Committees. Retrieved from: http://
hrsa.gov/about/budget/budgetjustification2016.pdf.
---------------------------------------------------------------------------
As noted, the BLS projects a high need for APRNs due to increasing
patient care demands. The Advanced Nursing Education (ANE) grants
program supported 10,504 students in academic year 2013-2014. ANE
grants help prepare NPs, CNSs, CNMs, CRNAs, nurse educators,
administrators, public health nurses, and other nurses requiring a
graduate degree. The settings in which these students were educated
reflect the national effort to immerse providers into delivery settings
where they are most needed. During this same year, ANE grantees
partnered with 5,100 clinical training sites, and 46 percent were
located in underserved areas and 40 percent were in primary care
settings. Students are afforded the opportunity to serve the unique
needs of these communities, thus provided care for regions of our
Nation that struggle to recruit and retain highly-educated clinicians.
Federal dollars allocated to Title VIII programs are a lifeline to the
nursing profession that yields a high return on investment for
communities across the country.
--The Nursing Community respectfully requests $244 million for the
Nursing Workforce Development programs in fiscal year 2016.
national institute of nursing research: foundation for evidence-based
care
The care that RNs and APRNs provide must be rooted in evidence. As
one of the 27 Institutes and Centers at the NIH, 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 to the Nation. Our country must look
toward the prevention aspect of healthcare as the vehicle for saving
our system from further financial burden, and the work of NINR embraces
this endeavor through research related to care management of patients
during illness and recovery, reduction of risks for disease and
disability, promotion of healthy lifestyles, enhancement of quality of
life for those with chronic illness, and care for individuals at the
end of life. NINR addresses these challenges through its Strategic
Plan, which includes the following key themes:
--Symptom science to improve personalized health strategies for
individuals living with chronic illness and pain;
--Wellness to promote health and prevent illness across health
conditions, settings, the lifespan, and in minority and
underserved populations;
--Patient self-management to improve qualify of life while reducing
the burden for caregivers and the healthcare system; and
--End-of-life and palliative care science to improve symptom
management, coordination, and informed decisionmaking for
patients, families, and healthcare professionals.\3\
---------------------------------------------------------------------------
\3\ 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.
---------------------------------------------------------------------------
In addition, NINR recognizes the need for improving global health
and promotes research to reduce communicable diseases such as HIV, and
improve public health and wellness such as maternal-newborn care.
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.
--The Nursing Community respectfully requests $150 million for the
NINR in fiscal year 2016.
The Ad Hoc Group for Medical Research requests at least $32 billion
for NIH in 2016, and the request level of $150 million for NINR denotes
the same percentage increase for NIH applied to NINR.
members of the nursing community submitting this testimony
Academy of Medical-Surgical Nurses
American Academy of Nursing
American Assembly for Men in Nursing
American Association of Colleges of Nursing
American Association of Critical-Care Nurses
American Association of Heart Failure Nurses
American Association of Nurse Anesthetists
American Association of Nurse Assessment Coordination
American Association of Nurse Practitioners
American Association of Occupational Health Nurses
American College of Nurse-Midwives
American Nephrology Nurses' Association
American Nurses Association
American Organization of Nurse Executives
American Pediatric Surgical Nurses Association
American Psychiatric Nurses Association
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 periOperative Registered Nurses
Association of Public Health Nurses
Association of Women's Health, Obstetric and Neonatal Nurses
Commissioned Officers Association of the U.S. Public Health Service
Dermatology Nurses' Association
Developmental Disabilities Nurses Association
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 American Arab Nurses Association
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 Black Nurses Association
National Council of State Boards of Nursing
National Forum of State Nursing Workforce Centers
National Gerontological Nursing Association
National Nursing Centers Consortium
National Organization of Nurse Practitioner Faculties
Nurses Organization of Veterans Affairs
Oncology Nursing Society
Organization for Associate Degree Nursing
______
Prepared Statement of Reverend Dr. Gary Olin
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Open Hand Atlanta
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Open Hand Atlanta is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. Open Hand's mission is to help people prevent or
better manage chronic disease through Comprehensive Nutrition
CareTM, which combines home-delivered meals and nutrition
education as a means to reinforce the connection between informed food
choices and improved quality of life. In our service area, we provide
1,345,263 medically tailored, home delivered meals annually. Open Hand
has been the primary nutrition provider in Metro Atlanta for PLWHA for
over 27 years. Collectively, the Food is Medicine Coalition is
committed to increasing awareness of the essential role that food and
nutrition services (FNS) play in successfully treating HIV/AIDS and to
expanding access to this indispensable intervention for people living
with other severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
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\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
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\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
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\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
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Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
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\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
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FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
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\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Matthew Pieper, Executive
Director, Open Hand Atlanta.]
______
Prepared Statement of Chetan Patel
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Jagruti Patel
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Paresh Patel
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Parul Patel
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of PATH
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 2016 funding for global health and
immunization initiatives at the U.S. Department of Health and Human
Services (HHS). We appreciate the strong leadership this Committee has
shown in supporting global health and immunization programs and we ask
that your support continue. I am submitting this testimony on behalf of
PATH, an international nonprofit organization that drives
transformative innovation to save lives and improve health in
developing countries, especially among women and children. For nearly
40 years, PATH has been a pioneer in translating bold ideas into
breakthrough health solutions. We accelerate innovation across five
platforms--vaccines, drugs, diagnostics, devices, and systems and
service innovations. We actively collaborate with public- and private-
sector partners--including the U.S. Government and HHS--to develop new
and adapt existing innovations across the health spectrum, and to work
to ensure those solutions reach the people who need them the most, in
the lowest resource settings. Through our work in more than 70
countries, we see firsthand the impact of U.S. Government investments
in global health and immunization. We respectfully request that this
Subcommittee ensure robust funding for HHS global health programs in
fiscal year 2016 to allow the U.S. Government to achieve goals outlined
in the U.S. National Vaccine Plan and the new 6-year President's
Malaria Initiative Strategy.
The Vital Role of HHS in Global Health
The ongoing Ebola crisis and the measles outbreaks in California
and New York in early 2015, have demonstrated that the health of U.S.
citizens is inherently connected to the health of people living around
the globe. Global pandemics and increasing overseas travel in recent
decades intensify Americans' vulnerability to infectious diseases that
have historically impacted communities outside our borders. Recognizing
this, HHS has been active in global health programs for decades. In
recent years, HHS developed the Global Health Strategy (2011) and
serves as the lead U.S. agency for the Global Health Security Agenda
(launched in 2014) to better protect Americans' health and security
while improving health around the world.
Accelerating Progress Toward Global Immunization Goals
A key strategy for achieving HHS' global health goals is
immunization. Vaccines are one of the most impactful and cost-effective
public health interventions available today. They have played a large
role in cutting the number of deaths of children under age five in half
since 1990. Worldwide, polio cases have dropped by more than 99 percent
since 1988, measles deaths have declined by 75 percent from 2000
through 2013, and 2 to 3 million deaths are averted each year through
immunization. HHS has contributed significantly to this achievement.
For example, thanks in part to HHS' role in global polio immunization
efforts, including as a leading agency in the Global Polio Eradication
Initiative, 11.5 million children were reached with polio vaccine in
2014. Southeast Asia, including India, was certified polio-free in
March 2014, making 80 percent of the world's population polio-free.
Only three countries--Afghanistan, Pakistan, and Nigeria--remain
``endemic,'' meaning they have never interrupted transmission of the
virus, but promisingly, Nigeria has not reported a case of wild polio
since July 2014.
Robust funding will enable HHS to further extend the reach of
lifesaving vaccines to where they are needed most, which will save even
more lives and contribute to healthier, more productive communities.
Global immunization is one of five core objectives of the U.S.
National Vaccine Plan (2010-2015), emphasizing its role in providing an
``umbrella of protection'' for the United States. This year is a
pivotal moment as HHS agencies work to update this plan and outline
priorities for the next 5 years. In parallel to this plan, the CDC is
in the process of developing a revised global immunization strategy.
Full funding is essential to ensure they can effectively execute these
strategies and support the dual objectives of protecting the health of
Americans while improving children's lives overseas.
2015 marks the halfway point of the Decade of Vaccines, an
initiative which established a global framework endorsed by the United
States and 193 other nations with the aim of delivering universal
access to immunization. While some progress has been made toward the
goals outlined in the framework, and individual achievements in
countries have demonstrated what is possible with focused efforts, we
are off track to meet many of the milestones outlined in the plan, and
the delay means more lives lost. The U.S. Government is positioned to
lead the way in accelerating progress toward the framework's goals, if
it maximizes its contributions across various agencies. We are pleased
to see HHS making strides toward strengthening the collective impact of
its agencies engaged on global immunization, including the Centers for
Disease Control and Prevention (CDC), the National Institutes of Health
(NIH), and the Food and Drug Administration (FDA), among others, as
well as across other departments of the U.S. Government. We urge the
committee to continue to fully fund these efforts and encourage
stronger coordination.
Supporting Vaccine Introduction and Scale
CDC and other partner agencies play a key role in ensuring that
appropriate vaccines are introduced and widely available where they are
needed most. When new and improved vaccines become available, countries
must weigh several factors when deciding whether or not, and how, to
introduce the vaccine. CDC provides valuable epidemiological,
laboratory, and policy expertise to help build the capacity of
countries to make informed decisions and plan for incorporating new
vaccines into their immunization program.
Strengthening Global Immunization Systems
Effectively delivering immunizations requires coordination at every
level of the immunization system. CDC partners with domestic health
ministries and the World Health Organization to ensure that health
systems are robust and able to operate effective immunization programs,
including human resources, processes, tools, and equipment.
Investments in immunization infrastructure have proven invaluable
in promoting health more broadly and rapidly responding to outbreaks.
For example, Nigeria was able to rapidly adapt its polio
infrastructure, built with significant CDC input and support, to
respond to an importation of Ebola in October 2014 in Lagos. Senior
polio leadership quickly established an Emergency Operations Center in
Lagos to respond to the outbreak, stopping the virus without incident.
Meanwhile, immunization rounds in northern Nigeria continued as planned
without a decrease in quality. This effort demonstrated the quality and
resilience of the program in Nigeria, and the adaptability of polio
assets for use in other public health issues.
Fighting to Eliminate Malaria
In addition to its critical work in immunization, HHS has a long
history in the fight to eliminate malaria. CDC, in particular, played a
critical role in eliminating malaria from the United States. As a joint
implementer of the President's Malaria Initiative (PMI) alongside the
U.S. Agency for International Development (USAID), the CDC continues to
play a leading role in global elimination efforts. And these efforts
have made a significant impact. Between 2001 and 2013, an estimated 4.2
million lives were saved as a result of scaled up malaria
interventions. While incredible progress has been made, progress is
fragile, and investments need to be sustained. Recently PMI set forth a
new 6-year strategy which includes an ambitious agenda to reduce
malaria mortality by one-third from 2015 levels in PMI-supported
countries, thereby achieving a greater than 80 percent reduction from
PMI's original 2000 baseline. Robust funding is required to execute on
this goal.
With evidence of growing insecticide and drug resistance, CDC's
role in malaria surveillance and ensuring we have the tools necessary
to fight this ever changing disease is critical. CDC provides the
routine surveillance that is critical in keeping up with the changing
dynamics of the disease, provides scientific leadership and training to
the next generation of malaria technical experts, and works to develop
and evaluate new tools to aid in the fight. Examples of CDC's
contributions include evaluations of the impact of improved nets,
insecticides, and strategic use of antimalarial drugs, as well as field
trials of promising malaria vaccine candidates.
However as CDC's mandate has grown, their budget for malaria has
been flat funded. Flat or reduced budgets make it increasingly harder
to attract top talent and conduct the research necessary for ultimately
meeting goals towards malaria elimination. Increased funding would
better equip the agency to track the spread of drug and insecticide
resistance, develop and deploy new tools, and ensure the more timely
surveillance that is necessary for ultimate malaria elimination.
Protecting U.S. Leadership in Global Health R&D
While access to existing, proven health interventions--whether
vaccines, bednets, or drugs--must be extended, it is also critical to
support research and development (R&D) into future technologies that
can prevent existing and emerging global health threats. Investments
made by the U.S. Government, including through the NIH and CDC over the
past three decades, have enabled many partners, including PATH, to
advance innovations that have improved health and saved lives around
the world. These innovations include new and improved vaccines, such as
an effective, low-cost vaccine against meningitis A, which used to
cause devastating outbreaks each year in Africa's Meningitis Belt. Zero
cases of meningitis A have occurred among the more than 215 million
Africans vaccinated since 2010. We also leveraged U.S. Government
support to pioneer safe injection technologies that have helped to
prevent millions of blood-borne infections. Thanks to a discovery made
by scientists at NIH, PATH was able to develop a simple, rapid test for
exposure to river blindness, a disease that affects 23 million people.
This test was launched commercially last year and is an important tool
in the fight to eliminate river blindness in Africa.
The promise of new global health technologies can only be realized
when products are developed, tested, and scaled up for use globally.
Strengthened collaboration and coordination between HHS operating
divisions and other U.S. agencies funding vaccine development and
delivery--namely, USAID and the Department of Defense--will be
critically important to better align vaccine R&D investments and
vaccination program priorities across the U.S. Government to maximize
the impact of U.S. taxpayer dollars.
An Investment in Health, at Home, and Around the World
With strong funding for HHS, the department will be able to improve
access to existing, proven health interventions in the communities
where they are needed most, while at the same time investing in
solutions to tomorrow's challenges, thus enabling the United States to
continue its role as a leader in global health. By fully funding the
global health and immunization-related accounts, the U.S. 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 Heather Ignatius, Senior Policy
and Advocacy Officer, PATH.]
______
Prepared Statement of Sue Peters
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Physician Assistant Education Association
On behalf of the 196 accredited physician assistant (PA) education
programs in the United States, the Physician Assistant Education
Association (PAEA) is pleased to submit these comments on the fiscal
year 2015 appropriations for PA education programs that are authorized
through Title VII of the Public Health Service Act. PAEA supports
funding of at least $280 million in fiscal year 2016 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). We also request $12 million of that
funding support PA programs operating across the country. This is the
only designated source of Federal funding for PA education and is
crucial to the U.S. PA education system's ability to meet the demand
for education and to continue to produce highly skilled physician
assistants ready to enter the healthcare workforce in an average of 26
months. The way that PAs are educated in America--the caliber of our
institutions and the expertise of our educators--is the gold-standard
throughout the world and that distinction must be maintained in this
period of unprecedented patient need and rapid growth within the PA
profession.
Need for Increased Federal Funding
The unmet need for primary care services in the United States is
well documented, and only expected to grow as Baby Boomers age and
require more healthcare services and as formerly uninsured patients
gain access. Healthcare systems are rapidly evolving. Yet the one
constant remains the need for qualified healthcare providers in numbers
sufficient to meet demand. Primary care has been clearly identified as
the critical entry point into the healthcare system where that access
must be guaranteed. The PA profession was created specifically to
address a shortage of primary care physicians almost 50 years ago; and
today's PAs stand ready to help address the challenges our Nation faces
in primary care and other specialties. The effectiveness of physician
assistants is well-documented by studies showing better patient access,
especially for Medicaid patients, high patient satisfaction, more
frequent patient education, and healthcare outcomes similar to
physicians. Importantly, PAs could play an even larger role in high-
quality, cost-effective care if offered appropriate financial support
and through innovations in the PA education system.
Like physicians, the PA profession also faces a shortage of
graduates that will hinder its ability to help fully address the
primary care issue in the United States. Without new solutions, at the
current output of approximately 8000 graduates from PA programs per
year, these shortages will persist, particularly in the rural and
underserved communities where care is needed the most. Title VII is the
only funding source that provides direct support for PA programs and
plays a crucial role in developing and supporting the education
system's ability to produce the next generation of these advanced
practice clinicians.
Background on the Profession
Since the 1960s, PAs have consistently demonstrated they are
effective partners in healthcare, readily adaptable to the needs of an
ever-changing delivery system. Physician assistants are licensed health
professionals with advanced education in general medicine that practice
medicine as members of the healthcare team. They provide a broad range
of medical and therapeutic services to diverse populations in rural and
urban settings, including prescriptive authority in all 50 States, the
District of Columbia, and Guam. PAs practice medicine to the extent
allowed by law and within the physician's scope of practice and their
combination of medical training, advanced education, and hands-on
experience allows PAs to practice with significant autonomy, and in
rural and other medically underserved areas where they are often the
only full-time medical provider. The profession is well established,
yet nimble enough to embrace new models of care, adopt innovative
approaches to training and education, and adapt to health system
challenges. The PA practice model is, by design, a team-based approach
to patient-centered care where the PA works in tandem with a physician
and other health professionals. This PA practice approach to quality
care is uniquely aligned with the patient-centered, collaborative,
interprofessional and outcomes-based care models transforming the U.S.
healthcare system.
PA Education: The Pipeline for Physician Assistants
There are currently 190 accredited PA education programs in the
United States. Together these programs graduate over 8,000 PA students
each year. PAs are educated as generalists in medicine and that
training gives them the flexibility to practice in more than 60 medical
and surgical specialties. More than one third of PA program graduates
are working in a primary care specialty.
The average PA education program is 26 months in length and
includes 1 didactic year in the classroom, and another year devoted to
clinical rotations. Most curricula include 340 hours of basic sciences
and nearly 2,000 hours of clinical training, second only to physicians
in time spent in clinical study.
As of today, approximately 55 new PA programs are in the pipeline
at various stages of development and moving toward accredited status.
The growth rate in the applicant pool is even more pronounced. Since
its inception, the Centralized Application Service (CASPA) used by most
programs grew from 4,669 applicants to over 20,000. As of March 2015,
there were 22,997 applicants to PA education programs, which represents
over a 40 percent increase in CASPA applicants over the past 5 years
alone.
The PA profession is expected to continue to grow as a result of
the projected shortages of physicians and other healthcare
professionals, the growing demand for care driven by an aging
population, and the continuing strong PA applicant pool. Accordingly,
The Bureau of Labor Statistics projects a 39 percent increase in the
number of PA jobs between 2008 and 2018. With its relatively short
initial training time and the flexibility of generalist-trained PAs,
the PA profession is well positioned to help fill projected shortages
in the numbers of healthcare professionals--if appropriate resources
are available to support the education system behind them.
areas of acute need
Faculty Shortages
Faculty development is one of the profession's critical needs and
educators are an often overlooked element to developing an adequate
primary care workforce. Nearly half of PA program faculty are 50 years
or older and the PA teaching profession faces large numbers of
retirements in the next 10-15 years. An interest in education must be
developed early in the educational process to ensure a continuous
stream of educators, and to do so, we must alleviate the significant
loan burdens that prevent many physician assistants from entering
academia. In order to attract the most highly qualified faculty, PA
education programs must have the resources to help clinicians
transition into education, including curriculum development, teaching
methods, and laboratory instruction. Most educators come from clinical
practice and these non-clinical professional skills are essential to a
successful transition from clinical practice to a classroom setting.
Without Federal support, we will face an impending shortage of
educators who are prepared for and committed to the critical teaching
role that will ensure the next generation of skilled practitioners.
Clinical Site Shortages
Outside of the classroom, PA education faces additional challenges
in meeting demand. A lack of clinical sites for PA education is
hampering PA programs' ability to produce PAs at the pace needed to
meet the demand for primary care in the U.S. This shortage is caused by
two main factors: a shortage of medical professionals (preceptors)
willing to teach students as they are cycling through their clinical
rotations, and a lack of sites with the physical space to teach.
Cutbacks in Federal and State funding of Area Health Education Centers
(AHECs) has also contributed to reduced access to clinical training for
PA students, particularly in rural and underserved communities.
This phenomenon is experienced throughout the health professions,
and is particularly acute in primary care. It has created unintentional
competition for clinical sites and preceptors within and among PAs,
physicians and advance practice nurses. Federal funding can help
incentivize practicing clinicians to both offer their time as
preceptors, and volunteer their clinical operations as training grounds
for PAs and other health professionals to train together and directly
interact with patients as a team. PAEA believes that interprofessional
clinical training and practice are necessary for optimum patient care
and will be a defining model of healthcare in the U.S. in the 21st
century. We can only make that a reality if we begin to build a
sufficient network of health professionals who are willing to teach the
next generation of primary care professionals--that approach will
benefit PAs as well as the future physicians, nurses and other
clinicians that comprise the full primary care team.
Enhancing Diversity
Workforce diversity, and practice in underserved areas are key
priorities identified by HRSA and are consistent with those of PAEA. It
is increasingly important for patient care quality that the health
workforce better represents America's changing demographics, as well as
addresses the issues of disparities in healthcare. PA programs have
been committed to attracting students from underrepresented minority
groups and disadvantaged backgrounds into the profession, including
veterans who have served our country and desire to transition to
civilian health professions. Studies have found that health
professionals from underserved areas are three to five times more
likely to return to underserved areas to provide care, and PA programs
are looking for unique ways to recruit diverse individuals into the
profession, and sustain them as leaders in the education field. If we
can provide resources to schools that are particularly poised to
improve their diversity recruitment efforts and replicate or create
best practices including transition programs for our veterans, we can
begin to address this systemic need.
In order to leverage the efforts of PA programs through Title VII
funding to increase workforce diversity in the PA profession, PAEA also
supports funding for the Health Careers Opportunity Program (HCOP), and
increased funding for the Scholarships for Disadvantaged Students and
National Health Service Corps (NHSC). Historically, access to higher
education has been constrained for individuals from disadvantaged
backgrounds. These programs help to provide a clear path for students
who might not otherwise consider a physician assistant career.
Title VII Funding
Title VII funding fills a critical need for curriculum development,
faculty development, clinical site expansion and diversification of the
primary care workforce--areas that if appropriately supported can help
ensure the PA profession realizes its full promise in the U.S.
healthcare system. These funds enhance clinical training and education,
assist PA programs with recruiting applicants from minority and
disadvantaged backgrounds, and enable innovative programs that focus on
educating a culturally competent workforce. Title VII funding increases
the likelihood that PA students will practice in medically underserved
communities with health professional shortages. The absence of this
funding would result in the loss of care to patients with the most
urgent need for access to care.
Title VII support for PA programs was strengthened in 2010 when
Congress enacted a 15 percent allocation in the Appropriations process
specifically for PA programs working to address the health provider
shortage. This funding has enhanced capabilities to train a growing PA
workforce, creatively expand care to the underserved, and develop a
more diverse PA workforce:
--One Texas program has used its PA training grant to support the
program at a distant site in an underserved area. This grant
provides assistance to the program for recruiting, educating,
and training PA students in the largely Hispanic South Texas
and mid-Texas/Mexico border areas and supports new faculty
development.
--An Alabama program used its PA training grant to update and expand
the current health behavior educational curriculum and HIV/STD
training. They were also able to include PA students from other
programs who were interested in rural, primary care medicine
for a four-week comprehensive educational program in HIV
disease diagnosis and management.
--A New York program is using its PA training grant to operate a
mobile health vehicle to provide health education and initial
health screenings to local underserved communities. The
experience has motivated students to enter primary care; the
direct exposure achieved by utilizing a mobile heath vehicle
provides the communities with medical and preventive education
and health screenings while also addressing the students'
awareness of cultural competency and health literacy.
--A Virginia program uses its PA training grant to support
transitioning veterans, while increasing the placement of
graduates in primary care and medically underserved
communities. The grant allows the PA program to provide
scholarship to incoming physician assistant students who are
veterans, and who dedicate the beginning of their careers to a
primary care setting
Recommendations on Fiscal Year 2016 Funding
The Physician Assistant Education Association, along with the
support from our colleagues in the health professions community,
requests the Appropriations Committee's support in funding for Title
VII health professions programs at a minimum of $280 million for fiscal
year 2016.This level of funding is crucial to support the Nation's
ability to produce and maintain highly skilled primary care
practitioners, particularly those from diverse backgrounds and the
military who will practice in medically underserved areas and serve
vulnerable populations. We also ask for the continuation of the 15
percent allocation for PA education programs in the Primary Care
cluster. The Accreditation Review Commission on Education for the
Physician Assistant (ARC-PA) estimates that an additional 55 programs
will be added by 2018. Therefore, we request an increase in funding to
$12 million which will allow sufficient funding for the expanding
number of PA programs expected to begin enrolling students during the
next four to 5 years.
We thank the members of the subcommittee for their support of the
health professions and look forward to your continued commitment to
finding solutions to the Nation's health workforce shortage. We
appreciate the opportunity to present the Physician Assistant Education
Association's fiscal year 2016 funding recommendation.
[This statement was submitted by Anthony Miller, M.Ed., PA-C Chief
Policy and Research Officer, Physician Assistant Education
Association.]
______
Prepared Statement of Barbara Piper
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Population Association of America and
Association of Population Centers
introduction
Thank you, Chairman Blunt, Ranking Member Murray, and other
distinguished members of the Subcommittee, 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 2016, we urge the Subcommittee to adopt the
following funding recommendations: at least $32 billion for the NIH,
consistent with the level recommended by the Ad Hoc Group for Medical
Research; $172 million, consistent with the Administration's request,
for the National Center for Health Statistics; and BLS, $632 million,
consistent with the Administration's request.
The PAA and APC are two affiliated organizations that together
represent over 3,000 social and behavioral scientists and approximately
40 population research centers nationwide that conduct research on the
implications of population change. Our members, which include
demographers, economists, sociologists, and statisticians, conduct
scientific research, analyze changing demographic and socio-economic
trends, develop policy recommendations, and train undergraduate and
graduate students. Their research expertise covers a wide range of
issues, including adolescent health and development, aging, health
disparities, immigration and migration, marriage and divorce,
education, social networks, housing, retirement, and labor. Population
scientists compete for discretionary grant funding from the NIH and
rely on data produced by the Nation's statistical agencies, including
NCHS and BLS, to conduct research and training activities.
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 extramural population research programs
primarily through the National Institute on Aging (NIA) and the
National Institute of Child Health and Human Development (NICHD).
national institute on aging
NIA-supported research confirms that 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 research on these
topics.
In addition to supporting an impressive research portfolio that
includes the prestigious Centers on the Demography and Economics of
Aging, the NIA BSR Division also supports several large, accessible
surveys. These surveys include the National Health and Aging Trends
Study (NHATS), which has enrolled 8,000 Medicare beneficiaries with the
goal of studying trends in late-life disability trends and dynamics.
The study also includes a supplement to examine informal caregivers and
their impact on the long-term care utilization of people with chronic
disabilities. Another NIA survey, the Health and Retirement Study
(HRS), provides unique information about economic transitions in work,
income, and wealth, allowing scientists to study how the domains of
family, economic resources, and health interact. Since 1992, the HRS
has collected data--including, most recently, biomarkers--from a
representative sample of more than 27,000 Americans over the age of 50
every 2 years. These data are accessible to researchers worldwide and
have informed numerous scientific findings. For example, in 2013,
researchers using the HRS published a study in the New England Journal
of Medicine, concluding that the cost of providing dementia care is
comparable to, if not greater than, those for heart disease and cancer.
With additional support in fiscal year 2016, the Institute can
sustain and expand its investment in population aging research. For
example, the Institute is developing an initiative to explore why other
industrialized countries surpass the United States both in health at
older ages and in longevity--especially in light of new NIA-supported
research findings that more than half of premature deaths are due to
social and behavioral issues. The Institute is also interested in
supporting research on the role that educational achievement may play
in the onset of dementia. Additional funding would also help the
Institute improve its payline, which, as of January 2015, was only at
the 7th percentile for applications under $500,000 and at the 4th
percentile for applications over $500,000.
As members of the Friends of NIA, we urge the Committee to provide
the NIH with an additional $500 million in fiscal year 2016 to support
aging research activities not only at the NIA, but across the agency.
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 National Longitudinal Study of Adolescent Health (Add Health),
tracing the effects of childhood and adolescent exposures on later
health.
In 2014, scientists, using data from these large-scale datasets
published numerous findings. For example, researchers using both
genetic and survey data from the Fragile Families study found that
poverty and unstable family environments shorten chromosome-protecting
telomeres in young African American boys as compared to children from
nurturing environments. This finding provides new insights into the
insidious role chronic stress plays in child health. Also, last year,
using data from the Add Health study, scientists reported new findings
on the long-term effects of birth weight and breastfeeding duration on
inflammation (a contributing factor to disease and disability) in early
adulthood.
One of the most important population research programs that the
NICHD supports is the Population Dynamics Centers Research
Infrastructure Program. This program promotes innovation, supports
interdisciplinary research, translates scientific findings into
practice, and develops the next generation of population scientists,
while at the same time providing incentives to reduce the costs and
increase the efficiency of research by streamlining and consolidating
research infrastructure within and across research institutions. It
also supports research at private and public research institutions
nationwide, the focal points for the demographic research field for
innovative research and training and the development and dissemination
of widely used large-scale databases. The Association of Population
Centers produces an annual guide describing the activities and
accomplishments of these centers, which is posted at: http://
www.popcenters.org/sites/popcenters.org/files/APC_2014_Booklet.pdf.
As members of the Friends of NICHD, PAA and APC request that the
Institute receive a funding level of at least $1.37 billion in fiscal
year 2016--an increase that is proportional to the overall NIH increase
recommended by the Ad Hoc Group for Medical Research funding. With
additional support, NICHD can build upon successful research while
prioritizing and investing in new research based on their revised
Scientific Vision plan, including launching the Human Placenta Project.
national center for health statistics
Located within the Centers for Disease Control (CDC), the National
Center for Health Statistics (NCHS) is the Nation's principal health
statistics agency, providing data on the health of the U.S. population
and backing essential data collection activities. Most notably, NCHS
funds and manages the National Vital Statistics System (NVSS), which
contracts with the States to collect birth and death certificate
information. NCHS also funds a number of complex large surveys to help
policy makers, public health officials, and researchers understand the
population's health, influences on health, and health outcomes. These
surveys include the National Health and Nutrition Examination Survey,
National Health Interview Survey (NHIS), and National Survey of Family
Growth. The wealth of data NCHS collects makes the agency an invaluable
resource for population scientists.
The Subcommittee's support of NCHS in recent years has enabled it
to make significant progress toward modernizing the NVSS, moving many
States from paper-based to electronic filing of birth and death
statistics and expediting the release of these data to the user
community. Yet, much work is needed to modernize fully the NVSS and to
support necessary expansions to the agency's core surveys so that these
data can effectively assess Americans' health.
As members of the Friends of NCHS, PAA and APC request that NCHS
receive $160 million in budget authority in fiscal year 2016. This
funding level would enable the agency to maintain its critical data
collection activities and support the States in their continued
implementation of electronic death registration systems (EDRS) to
enhance the timeliness and quality of death data used both in public
health and in fraud prevention.
We also endorse the Administration's proposed increase of $12
million in Prevention Fund funding for NCHS in fiscal year 2016. This
funding would allow NCHS to continue expansions to questions and sample
sizes in the National Health Interview Survey and expansions in sample
sizes in the National Ambulatory Medical Care Survey (NAMCS). These
expansions have yielded better data to assess Americans' access to, and
use of, healthcare services. NCHS previously received Prevention Fund
dollars to support the expansion of these surveys, but received no such
funding in fiscal year 2014 and fiscal year 2015. Without the
Prevention Fund allocation in fiscal year 2016, these NHIS and NAMCS
survey enhancements will discontinue, jeopardizing the utility of these
important datasets.
bureau of labor statistics
The Bureau of Labor Statistics (BLS) produces essential economic
information for public and private decisionmaking. Its data are used
extensively by population scientists who study and evaluate labor and
related economic policies and programs. The agency also supports the
National Longitudinal Studies program and the American Time Use Survey,
which are invaluable datasets that the population sciences use to
understand how complex factors--such as changes in work status, income,
and education--interact to affect health and achievement outcomes in
children and adults.
Since fiscal year 2010, the BLS budget has decreased by 10 percent
in inflation-adjusted dollars, and its current purchasing power is less
than it was in 2001. The agency has increasingly become unable to
fulfill its basic responsibilities, despite having made a series of
cost-saving program changes since 2011--eliminating in 2013 its Mass
Layoffs Statistics, Measuring Green Jobs, and International Labor
Comparisons programs, and curtailing (in 2014) some collection under
its Quarterly Census of Employment and Wages. Last year the export
pricing program was able to continue thanks only to a one-time
contribution from the Department of Commerce--and without adequate
resources this measure also faces elimination. Given the importance and
unique nature of BLS data, we urge the Subcommittee to support a level
of $633 million. Funding at this level would restore funding for all
core BLS programs--including the Current Employment Survey--and also
permit the agency to expand and enhance its Job Openings and Labor
Turnover Survey for better, faster, and more disaggregated regional
information on employment dynamics. Finally, restored funding would
allow the agency to make needed and long overdue investments in its
technical staff, which is essential to ensuring the quality of the data
collection and analysis.
conclusion
Thank you for considering the importance of these agencies under
your jurisdiction that benefit the population sciences. We urge you to
give them the highest funding priority as the fiscal year 2016
appropriations process proceeds.
[This statement was submitted by Mary Jo Hoeksema, Director,
Government and Public Affairs, Population Association of America and
Association of Population Centers.]
______
Prepared Statement of Positive Women's Network--USA
Dear Senate LHHS Subcommittee: I am writing to express my concern
about the proposed elimination of Ryan White Part D and consolidation
of the programs in to Ryan White Part C in the fiscal year 2016 budget
proposal. Respectfully, I am asking you to maintain Ryan White Part D
as a designated category in the Ryan White funding--not consolidating
it with Part C, as has been proposed. I am a women who has been living
with HIV for 27 years and a member of the Positive Women's Network--
USA--Colorado chapter.
As a unique part of the legislature, Ryan White Part D's culturally
sensitive, family-centered primary medical care and support services
aim to increase access and help women, infants, children, and youth
with HIV achieve optimal HIV medical outcomes. These critical services,
which comprise under 6 percent of Ryan White funding, include
coordinated care, sexual and reproductive health, specialized case
management, mental health services, child care, transportation,
outreach, peer-based programming, and more. As women and youth account
for an alarming amount of HIV diagnoses, Part D's targeted funding for
both groups is vital.
As the Affordable Care Act brings new changes to American
healthcare, retention in care during this transition period is
essential. Many women served by Ryan White Part D have one or more
minor children in their care. Over \3/4\ of Part D clients are racial
minorities. Consolidating Part C and D in this manner (via budget
appropriations) poses the risk of leaving vulnerable families and youth
without the very services that have helped to reduce perinatal HIV
transmission of HIV/AIDS by over 90 percent and retain HIV + women in
care at a rate nearly double the national average.
Moreover, the Ryan White legislation specifically designates Part C
funding, focused on early intervention services and capacity
development, separately from Part D. Although in recent years many Ryan
White grantees have been dually funded by both parts, the focus of
these programs are entirely different. The potential loss of Part D's
established network of vetted, culturally competent providers--many of
whom are community based sub-grantees with years of experience serving
this population--could have disastrous consequences for individuals,
families, and communities. The risk of people falling out of care as a
result of these changes is real, which could lead not only to negative
health outcomes, but also to increased risk of more transmissions due
to lack of viral suppression.
Ryan White Part D has a proven track record and has been
instrumental into getting and keeping marginalized individuals living
with HIV in care. I respectfully request that you (1) vote to reject
the proposal to consolidate Ryan White Part C and Part D and (2) retain
Ryan White Part D as a distinct targeted category with adequate funding
to serve these vulnerable populations. Our families that are living
with HIV deserve nothing less. Thank you for your consideration.
[This statement was submitted by Laurie Priddy, Positive Women's
Network--USA.]
______
Prepared Statement of Jane Powell
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding, and they cause critical reductions in
care for those who can least withstand them.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R.Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business''calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm on a widespread scale.
Whatever care setting is considered, when imposed upon all disabled
people unilaterally the outliers are discriminated against and can
suffer harm. But while the harm resulting from previous discriminations
was primarily a matter of self-esteem, the harm suffered as a result of
current discriminations against the most severely disabled are
physical, often severe, and far more detrimental. Often those who are
harmed or die as a result of forced deinstitutionalization are 10-15
percent or more of the census of the institutions that discharged them
to dangerous placements not equipped to care for them, with little
oversight or accountability.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Prevent Blindness
funding request overview
Prevent Blindness appreciates the opportunity to submit written
testimony for the record regarding fiscal year 2016 funding for vision
and eye health related programs. As the Nation's leading non-profit,
voluntary health organization dedicated to preventing blindness and
preserving sight, Prevent Blindness maintains a long-standing
commitment to working with policymakers at all levels of government,
organizations and individuals in the eye care and vision loss
community, and other interested stakeholders to develop, advance, and
implement policies and programs that prevent blindness and preserve
sight. Prevent Blindness respectfully requests that the Subcommittee
provide the following allocations in fiscal year 2016 to help promote
eye health and prevent eye disease and vision loss:
--Provide at least $1,000,000 to strengthen the Vision Health
Initiative (visual screening education) at the Centers for
Disease Control and Prevention (CDC).
--Provide at least $3,319,000 to continue the Glaucoma Project at the
CDC.
--Support the Maternal and Child Health Bureau's (MCHB) National
Center for Children's Vision and Eye Health.
--Provide at least $639 million to sustain programs under the
Maternal and Child Health (MCH) Block Grant.
--Provide at least $730 million to the National Eye Institute (NEI).
introduction and overview
Vision-related conditions affect people across the lifespan. Good
vision is an integral component to health and well-being, affects
virtually all activities of daily living, and impacts individuals
physically, emotionally, socially, and financially. Loss of vision can
have a devastating impact on individuals and their families. An
estimated 80 million Americans have a potentially blinding eye disease,
three million have low vision, more than one million are legally blind,
and 200,000 are more severely visually blind. Vision impairment in
children is a common condition that affects five to 10 percent of
preschool age children, and is a leading cause of impaired health in
childhood. Recent research estimated that the economic burden of vision
loss and eye disorders is $145 billion each year, nearly $50 billion of
which is Federal spending. Alarmingly, while half of all blindness can
be prevented through education, early detection, and treatment, the NEI
reports that ``the number of Americans with age-related eye disease and
the vision impairment that results is expected to double within the
next three decades.'' \1\
---------------------------------------------------------------------------
\1\ ``Vision Problems in the U.S.: Prevalence of Adult Vision
Impairment and Age-Related Eye Disease in America,'' Prevent Blindness
America and the National Eye Institute, 2008.
---------------------------------------------------------------------------
To curtail the increasing incidence of vision loss in America, and
its accompanying economic burden, Prevent Blindness advocates sustained
and meaningful Federal funding for programs that promote eye health and
prevent eye disease, vision loss, and blindness; needed services and
increased access to vision screening; and vision and eye disease
research. In a time of significant fiscal constraints, we recognize the
challenges facing the Subcommittee and urge you to consider the
ramifications of decreased investment in vision and eye health. Vision
loss is often preventable, but without continued efforts to better
understand eye conditions, and their treatment, through research, to
develop the public health systems and infrastructure to disseminate and
implement good science and prevention strategies, and to protect
children's vision, millions of Americans face the loss of independence,
loss of health, and the loss of their livelihoods, all because of the
loss of their vision. Furthermore, an upcoming Institute of Medicine
study is expected to make new recommendations to improve the vision and
eye health of the population in the coming years; recommendations that
would be much more difficult to advance following a decreased
investment in these important programs.
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 with other
partners to create a more effective public health approach to vision
loss prevention and eye health promotion. The CDC works to promote eye
health and prevent vision loss; improve the health and lives of people
living with vision loss by preventing complications, disabilities, and
burden; reduce vision and eye health related disparities; and integrate
vision health with other public health strategies. Despite severely
constrained financial resources the CDC' s Vision Health Initiative
(VHI) staff has worked hard in the last year to increase awareness of
vision health by partnering with other CDC programs, including the
Office of Smoking and Health and the Division of Cancer Prevention and
Control. Still, increased funding is absolutely necessary to take the
work of the VHI to the next level.
Prevent Blindness requests at least $1,000,000 in fiscal year 2015
to strengthen vision and eye health efforts of the CDC. This funding
level would allow the VHI to increase vision impairment and eye disease
surveillance efforts, apply previous CDC vision and eye health research
findings to develop effective prevention and early detection
interventions, and begin to incorporate vision and eye health promotion
activities into State and national public health chronic disease
initiatives, with an initial focus on early detection of diabetic
retinopathy
Improving Access to Eye Care for those at High Risk for Glaucoma
An estimated 2.2 million people are affected by glaucoma. A disease
of the aging eye, risk for glaucoma increases with age, especially
among black, Hispanic/Latinos, and Asians. Once vision is lost to
glaucoma, it cannot be restored, but with early diagnosis and
appropriate treatment, it is possible to slow disease progression and
save the remaining sight. Detection and management of glaucoma are
challenged by difficulties in reaching high-risk populations and by the
lack of simple, cost-effective screening plans.
Prevent Blindness requests level funding of $3,294,000 in fiscal
year 2016 to continue the work of the Glaucoma Project to improve
glaucoma screening, referral, and treatment, as well as overall
surveillance of glaucoma and other eye conditions. The program is
intended to reach those populations experiencing the greatest disparity
in access to glaucoma care through an integrated collaboration among
private and public organizations.
investing in the vision of our nation's most valuable resource--
children
While the risk of eye disease increases after the age of 40, eye
and vision problems in children are of equal concern. The visual system
in children younger than 8 years old is in a critical developmental
stage. Unidentified and untreated vision problems can lead to permanent
and irreversible visual loss and/or cause problems socially,
academically, and developmentally in this critical time of a child's
life. Currently, only one in three children receive eye care services
before the age of six. Requirements for preventive eye care/vision
screenings prior to or during the school years vary broadly from State
to State. Many States have no standards and those with standards
present with little consistency regarding type, frequency, and referral
or follow-up requirement protocol. Inclusion of vision screenings with
a comprehensive approach to follow up treatment and an integrated
approach to data collection as a part of the required health component
for grant recipients will help to change disparities in vision and eye
health for our Nation's children.
In 2009, the MCHB established the National Center for Children's
Vision and Eye Health (the Center), a national vision health
collaborative effort aimed at developing the public health
infrastructure necessary to promote eye health and ensure access to a
continuum of eye care for young children.
The Center is guided by an Advisory Committee comprised of the
Nation's leaders in children's vision and public health to implement
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: (1) provide
national leadership in dissemination of best practices, infrastructure
development, professional education, and national vision screening
guidelines that ensure a continuum of vision and eye healthcare for
children; (2) advance State-based performance improvement systems,
screening guidelines, and mechanisms for uniform data collection and
reporting; and (3) provide technical assistance to States in the
implementation of strategies for vision screening, establishing quality
improvement measures, and improving mechanisms for surveillance.
In January 2015, volunteer experts convened by the Center published
three articles in the Journal of Optometry and Vision Science that
provide an evidence-based approach to vision screening in children ages
3 through 5, as well as system-based public health strategies to ensure
improved surveillance and program accountability as it relates to
children's vision in the United States. This guidance encourages a
badly needed, more uniform approach to children's vision health
systems.
Prevent Blindness requests at least $639 million in fiscal year
2016 to sustain programs under the MCH Block Grant. The MCH Block Grant
enables States to expand critical healthcare services to millions of
pregnant women, infants and children, including those with special
healthcare needs. In addition to direct services, the MCH Block Grant
supports vital programs, preventive and systems building services
needed to promote optimal health--including the National Center for
Children's Vision and Eye Health.
advance and expand vision research opportunities
Prevent Blindness calls upon the Subcommittee to provide $730
million to enable the NEI to pursue its primary ``audacious goal'' of
restoring vision by bolstering its efforts to identify the underlying
causes of eye disease and vision loss, improve early detection and
diagnosis of eye disease and vision loss, and advance prevention and
treatment efforts. Research is critical to ensure that new treatments
and interventions are developed to help reduce and eliminate vision
problems and potentially blinding eye diseases facing consumers across
the country. By providing additional funding for the NEI at the NIH,
essential efforts to identify the underlying causes of eye disease and
vision loss, improve early detection and diagnosis of eye disease and
vision loss, and advance prevention, treatment efforts and health
information dissemination will be bolstered.
conclusion
On behalf of Prevent Blindness, 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 2016 funding for the CDC's vision and eye health efforts, the
MCHB's National Center for Children's Vision and Eye Health, and the
NEI. Please know that Prevent Blindness stands ready to work with the
Subcommittee and other Members of Congress to advance policies that
will prevent blindness and preserve sight. Please feel free to contact
us at any time; we are happy to be a resource to Subcommittee members
and your staff. We very much appreciate the Subcommittee's attention
to--and consideration of--our requests.
[This statement was submitted by Hugh Parry, President & CEO,
Prevent Blindness.]
______
Prepared Statement of Project Angel Food
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Project Angel Food is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In our service area, we provide over 500,000
medically tailored, home delivered meals annually. Collectively, the
Food is Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you,
[This statement was submitted by Laurie Lang, Executive Director,
Project Angel Food.]
______
Prepared Statement of Project Angel Heart
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Project Angel Heart is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In our service area, we provide 315,000 medically
tailored, home delivered meals annually. Collectively, the Food is
Medicine Coalition is committed to increasing awareness of the
essential role that food and nutrition services (FNS) play in
successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Erin Pulling, President & CEO,
Project Angel Heart.]
______
Prepared Statement of Project Open Hand
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Project Open Hand is part of a nationwide coalition, the Food is
Medicine Coalition, of over 80 food and nutrition services providers,
affiliates and their supporters across the country that provide food
and nutrition services to people living with HIV/AIDS (PLWHA) and other
chronic illnesses. In our service area, we provide 1.04 million
medically tailored meals annually. Collectively, the Food is Medicine
Coalition is committed to increasing awareness of the essential role
that food and nutrition services (FNS) play in successfully treating
HIV/AIDS and to expanding access to this indispensable intervention for
people living with other severe illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS.\7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution.\8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
Thank you.
[This statement was submitted by Simon Pitchford, Ph.D. and Mark
Ryle, LCSW, Co-CEO's, Project Open Hand.]
______
Prepared Statement of the Prostatitis Foundation
Prostatitis or Chronic Pelvic Pain Syndrome (CPPS) has been a
scourge to mankind for many years. At one International Convention of
the American Urological Association the physician speaking said Chronic
Prostatitis was as painful to the doctor as the patient. That is
because the doctor knew he could do little to alleviate the symptoms of
the patient and the patient would return over and over again with more
complaints.
Prostatitis is not a new disease. It is seldom discussed publicly
because of an assumed stigma. The cure has been elusive as far back as
Napoleon according to some medical historians. In his battles and
conquests he had to stand in a chariot rather than ride a horse it was
noted. Napoleon has been quoted as having said something to the effect
that doctors and generals will have much to account for on the final
day of judgement. Both John Kennedy in Reader's Digest and Saddam
Hussein by Reuter's were reported to have suffered from Prostatitis.
Will Durant spoke about his travails with prostatitis in his
autobiography.
Because of persistent efforts of the NIH light is being focused on
the problem but a cure has been elusive. Many or most of the common
treatments have not stood up to clinical trials. It is critical that
the information gathered in the past and the research groups now in
place are adequately funded to utilize the work already done and
preserve any information produced thus far.
Keep in mind that because of anxiety, disability and sexual
dysfunction prostatitis has an effect on the whole family. These
research funds need to be increased as the costs of prostatitis are
substantial and knowing the cause and prevention would provide huge
savings.
______
Prepared Statement of the Pulmonary Hypertension Association
Chairman Blunt and distinguished members of the Subcommittee, thank
you for your time and your consideration of the priorities of the
pulmonary hypertension community as you work to craft the fiscal year
2016 L-HHS Appropriations Bill.
about pulmonary hypertension
Pulmonary hypertension (PH) is a disabling and often fatal
condition simply described as high blood pressure in the lungs. It
affects people of all ages, races and ethnic backgrounds. Although
anyone can get PH, there are risk factors that make some people more
susceptible.
Treatment and prognosis vary depending on the type of PH. In one
type, pulmonary arterial hypertension (PAH), the arteries in the lungs
become too narrow to handle the amount of blood that must be pumped
through the lungs. This causes several things to happen: a backup of
blood in the veins returning blood to the heart; an increase in the
pressure that the right side of the heart has to pump against to push
blood through the lungs; and a strain on the right side of the heart
due to the increased work that it has to do. If this increased pressure
is not treated, the right side of the heart can become overworked,
become very weak and may possibly fail. Because blood has difficulty
getting through the lungs to pick up oxygen, blood oxygen level may be
lower than normal. This can put a strain not only on the heart, but
also decrease the amount of oxygen getting to the brain.
There is currently no cure for PAH. Twelve treatment options are
available to help patients manage their disease and feel better day to
day but even with treatment, life expectancy with PAH is limited.
about the association
From simple beginnings--four women who met around a kitchen table
in Florida in 1990--the Pulmonary Hypertension Association has evolved
into a community of well over 10,000 pulmonary hypertension patients,
caregivers, family members and medical professionals.
As we have grown, we have stayed true to our roots and the vision
and ingenuity of our founders: We continue to work every day to end the
isolation that PH patients face, and find a cure for pulmonary
hypertension.
Research
PHA provides grants to promising researchers in the field of
pulmonary hypertension. The program fosters new leaders in the field by
supporting their interest in PH research and providing them with
opportunities to work with mentors and learn new skills. Researchers
supported by PHA are looking for new methods for early detection, new
treatments to prevent the onset of PH and ultimately a cure for this
terrible illness. To date, PHA has leveraged more than $15 million in
PH research funding through partnerships with the NIH and others.
Early Diagnosis Campaign
It takes too long for pulmonary hypertension to be diagnosed. The
median survival rate without treatment is approximately 2.8 years,
making the need to obtain a rapid and accurate diagnosis urgent.
Unfortunately, the median duration from symptom onset to a confirmed
diagnosis by right heart catheterization is 1.1 years. We are reaching
patients too late in the process. Almost three-fourths of patients have
advanced PH by the time they are diagnosed, leading more costly
treatments and poorer outcomes. For the most advanced cases of PH, a
lung or heart-lung transplant may be the only treatment option. The
goal of PHA's Early Diagnosis Campaign is to discover the disease
sooner in the early stages. This will allow the start of a treatment
regimen that can slow the progression of PH and secure a better life
for the patient.
Center Accreditation
The Pulmonary Hypertension Association's Scientific Leadership
Council, 28 global leaders in the field of pulmonary hypertension, have
spearheaded the PHA-Accredited PH Care Centers (PHCC) initiative. The
goal of this initiative is to establish a program for accreditation of
centers with special expertise in pulmonary hypertension (PH),
particularly pulmonary arterial hypertension (PAH), to raise the
overall quality of care and outcomes in patients with this life-
threatening disease.
one patient's story
In 2011, at the age of 29, GS12 Human Terrain Analyst Jessica
(Puglisi) Armstrong began experiencing shortness of breath and
dizziness. She was in Afghanistan at the time. Jessica was first
diagnosed with dehydration. Then, as is the case with many PH patients,
she was told she had asthma and was given an inhaler. Two months later,
she fainted for no apparent reason. An echocardiogram revealed blood
clots in her lungs and Jessica was medically evacuated to Germany and
then to the U.S. Six months after her fist symptoms, she was finally
given a complete work up and diagnosed with pulmonary hypertension.
Jessica, she had a unique form of PH due to blood clots that can be
mitigated with a pulmonary thromboendarterectomy (PTE)--a complex
surgery that involves opening the chest cavity and stopping circulation
for up to twenty minutes. She describes the surgery, which she
underwent at the University of California San Diego, as ``more painful
than I could ever imagine.'' She notes that UCSD's PTE program did not
begin until 1990 and even now, despite being recognized as the global
leaders on this procedure, has only completed about 3,000 surgeries.
The procedure that saved Jessica's life was developed in her lifetime.
Jessica was terminated from Army employment and spent $60,000 out
of pocket on medical expenses which she has not been able to recoup.
She was forced to begin a civilian job just two weeks after her PTE in
order to retain health insurance. Despite this, Jessica is, in many
ways, one of the lucky ones. I am glad to report that she is now doing
well and serving an integral role at PHA as the coordinator of our
Early Diagnosis Campaign.
Over the past decade, treatment options, and the survival rate, for
pulmonary hypertension patients have improved significantly. However,
courageous patients of every age lose their battle with PH each day.
There is still a long way to go on the road to a cure and biomedical
research holds the promise of a better tomorrow.
sequestration
We have heard from the medical research community that
sequestration and deficit reduction activities have created serious
issues for Federal funding opportunities and the career development
pipeline. In order to ensure that the pulmonary hypertension research
portfolio can continue to grow, and, more importantly, to ensure that
our country is adequately preparing the next generation of young
investigators, we urge you to avert, mitigate, or otherwise eliminate
the specter of sequestration. The Association has anecdotal accounts of
the harms of sequestration and the Federated American Societies for
Experimental Biology has reported:
--In constant dollars (adjusted for inflation), the NIH budget in
fiscal year 2013 was $6 billion (22.4 percent) less than it was
in fiscal year 2003.
--The number of competing research project grants (RPGs) awarded by
NIH has also fallen sharply since fiscal year 2003. In fiscal
year 2013, NIH made 8,283 RPG awards, which is 2,110 (20.3
percent) less than in fiscal year 2003.
--Awards for R01-equivalent grants, the primary mechanism for
supporting investigator-initiated research, suffered even
greater losses. The number awarded fell by 2,528 (34 percent)
between fiscal year 2003 and fiscal year 2013.
The pay line for some NIH funding mechanisms has fallen from 18
percent to 10 percent while the average age for a researcher to receive
their first NIH-funded grant has climbed to 42. These are strong
disincentives to choosing a career as a medical researcher. Our
scaling-back is occurring at a time when many foreign countries are
investing heavily in their biotechnology sectors. China alone plans to
dedicate $300 million to medical research over the next 5 years; this
amount is double the current NIH budget over the same period of time.
Scientific breakthroughs will continue, but America may not benefit
from the return-on-investment of a robust biotechnology sector. For the
purposes of economic and national security, as well as public health,
the Association asks that you work with your colleagues to eliminate
sequestration and recommit to supporting this Nation's biomedical
research enterprise.
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. Federal organ transplantation activities are
coordinated through HRSA. To ensure HRSA can expand its important
mission and continue to make improvements in donor lists and donor-
matching please provide HRSA with a meaningful funding increase in
fiscal year 2016.
Centers for Disease Control and Prevention
As a result of Federal investment in medical research, there are
now twelve FDA-approved treatments for PH. The effectiveness of these
therapies, however, is dependent on how early a patient can receive an
accurate diagnosis and begin treatment. Unfortunately, two-thirds of
patients are not diagnosed until PH has reached a late stage. In
addition to mitigating the impact of many treatments, late diagnosis
puts PH patients in a position to face interventions like heart-lung
transplantation and even death. CDC and NCCDPHP have the resources to
complement PHA's own Sometimes its PH Early Diagnosis Campaign.
Improving public awareness and recognition of PH will not only save
lives, it can save the Federal healthcare system money. Please provide
CDC with meaningful funding increases so the agency can expand its
focus into increasingly important and cost-effective areas.
national institutes of health
NIH hosts a sizable PH research portfolio. Further, NIH and PHA
have a strong track record of working together to advance our
scientific understanding of PH. The twelve FDA-approved treatments,
more than nearly every other rare disease, are evidence of the return-
on-investment from these activities. Please provide NIH with meaningful
increases to facilitate expansion of the PH research portfolio so we
can continue to improve diagnosis and treatment.
NCATS
The Office of Rare Diseases Research (ORDR), located within NCATS,
supports and coordinates rare disease research and provides information
on rare diseases to patients, their families, healthcare providers,
researchers and the public. In collaboration with other NIH institutes,
ORDR funds rare diseases research primarily through the Rare Diseases
Clinical Research Network (RDCRN), which supports clinical studies,
investigator training, pilot projects, and access to information on
rare diseases.
NHLBI
The NHLBI-funded Centers for Advanced Diagnostics and Experimental
Therapeutics in Lung Diseases Stage II program, which began in fiscal
year 2014, provides a mechanism to accelerate the development of
therapies for lung diseases, including pulmonary fibrosis and pulmonary
arterial hypertension.
______
Prepared Statement of Mary A. Pultz
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Jonita Rains
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Cris Raub
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Barb Reale
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Research Working Group
Chairman Blunt, Ranking Member Murray and members of the Committee,
thank you for the opportunity to provide testimony on the Subcommittee
on fiscal year 2016 Appropriations for the National Institutes of
Health.
Investments in health research via NIH have paid enormous dividends
in the health and wellbeing of people in the U.S. and around the world.
NIH funded AIDS research has supported innovative basic science for
better drug therapies, evidence-based behavioral and biomedical
prevention interventions and vaccines which have saved and improved the
lives of millions. These hold great promise for significantly reducing
HIV infection rates and providing more effective treatments for those
living with HIV/AIDS in the coming decade. Despite such advances, there
remain over one million HIV-infected people in the U.S., the highest
number in the epidemic's 31-year history. Additionally almost 50,000
Americans become newly infected every year.
However, investment by the NIH has transformed the HIV epidemic
from a terrible, untreatable disease to a chronic condition that can be
managed through once a day drug regimens. NIH funding of AIDS research
provides an example of innovation at work where investment in basic and
translational research, working in partnership with industry and
community, can move quickly to develop solutions. NIH investments in
AIDS research also add value by seeding ideas later taken up in
industry partnerships and creating innovation incubators for important
medical advances which have significant health impact. Major advances
over the last few years in HIV treatment and prevention demonstrate
that adequately resourced NIH programs can transform our lives. Federal
support for AIDS research has also led to new treatments for other
diseases, including cancer, heart disease, Alzheimer's, hepatitis,
osteoporosis and a wide range of autoimmune disorders.
Innovation requires a stable and adequate source of funding for
science. The current unstable funding environment, with the resources
available to the NIH are estimated to be significantly less in constant
dollars than they were in 2003, is making us less innovative. As a
recent paper by senior scientists noted ``hypercompetition for the
resources and positions that are required to conduct science suppresses
the creativity, cooperation, risk-taking, and original thinking
required to make fundamental discoveries.'' (Alberts B, Kirschner MW,
Tilghman S, Varmus H (2014) Rescuing U.S. biomedical research from its
systemic flaws, Proc Natl Acad Sci USA).
Robust funding for NIH overall enables research universities to
pursue scientific opportunity, advance public health, and create jobs
and economic growth. In every State across the country, the NIH
supports research at hospitals, universities, private enterprises and
medical schools. This includes the creation of jobs that will be
essential to future discovery. Sustained investment is also essential
to train the next generation of scientists and prepare them to make
tomorrow's HIV discoveries. NIH funding puts 350,000 scientists to work
at research institutions across the country. According to NIH, each of
its research grants creates or sustains six to eight jobs and NIH
supported research grants and technology transfers have resulted in the
creation of thousands of new independent private sector companies.
Strong, sustained NIH funding is a critical national priority that will
foster better health and economic revitalization.
Since 2003, funding for the NIH has failed to keep up with our
existing research needs--damaging the success rate of approved grants
and leaving very little money to fund promising new research. The real
value of the increases prior to 2003 has been precipitously reduced
because of the relatively higher inflation rate for the cost of
research and development activities undertaken by NIH. According to the
Biomedical Research and Development Price Index--which calculates how
much the NIH budget must change each year to maintain purchasing
power--between fiscal year 2003 and fiscal year 2015, the NIH budget in
constant dollars according to the BRDI will have declined by almost 30
percent. So in real terms, the NIH has already sustained budget
decreases of close to a third over the past 12 years due to inflation
alone. Failure to repair this decline will have the clear and
devastating effects of undermining our Nation's leadership in health
research and our scientists' ability to take advantage of the expanding
opportunities to advance healthcare. The race to find better treatments
and a cure for cancer, Alzheimer's, heart disease, AIDS and other
diseases, and for controlling global epidemics like AIDS, tuberculosis
and malaria, all depend on a robust long term investment strategy for
health research at NIH. There can be no innovation without reliable and
adequate research funding.
In conclusion, the RWG calls on Congress to continue the bipartisan
Federal commitment towards combating HIV as well as other chronic and
life threatening illnesses by increasing funding for NIH in fiscal year
2016. A meaningful commitment towards maintaining the U.S. pre-eminence
in research and fostering innovation cannot be met without prioritizing
the research investment at NIH that will lead to tomorrow's lifesaving
vaccines, treatments and cures. Thank you for the opportunity to
provide these written comments.
Tomorrow's scientific and medical breakthroughs depend on your
vision, leadership, and commitment towards robust NIH funding this
year. To this end, the Research Working Group (RWG) urges this
Committee to support a funding target of $36 billion in fiscal year
2016 to maintain the U.S.'s position as the world leader in medical
research and innovation.
______
Prepared Statement of Results for America
Chairman Blunt and Ranking Member Murray: Results for America (RFA)
is pleased to present our recommendations for fiscal year 2016 to the
U.S. Senate Appropriations Subcommittee on the Departments of Labor,
Health and Human Services, Education and Related Agencies.
RFA and our Invest in What Works coalition partners are committed
to improving outcomes for young people, their families, and communities
by helping shift public resources toward practices, policies, and
programs that use evidence and data to improve quality and get better
results. The attached letter and table outlines our requests for fiscal
year 2016.
Over the last several years, governments at all levels have taken
important steps toward investing taxpayer dollars in what works. This
approach has a strong history of bipartisan support. President George
W. Bush's Administration put a priority on improving the performance of
Federal programs and encouraged more rigorous evaluations to assess
their effectiveness. The Obama Administration has built on this effort
by supporting an increasing number of evidence and evaluation-based
policies and programs. Mayors and governors from both parties all
across the country are also increasingly using data and evidence to
steer public dollars to more effectively address needs in their
communities and States. We urge you to continue making the ``invest in
what works'' approach the new norm when allocating public dollars.
On behalf of Results for America and the Invest in What Works
coalition, I want to thank you for your past support and look forward
to working with you in the future to build a strong evidence-based,
results-driven policy agenda that improves outcomes for our Nation's
citizens.
On March 9, 2015, the following 58 organizations sent a letter to
Chairmen Rogers and Cochran, Vice Chairwoman Mikulski, and Ranking
Democratic Member Lowey highlighting our proposed evidence-based bill
and report language for fiscal year 2016. To provide you with a
complete picture of our agenda, we have also included our proposed bill
and report language for other Federal departments, agencies, and
mandatory programs outside of your Committee's jurisdiction.
invest in what works
Dear Chairmen Cochran and Rogers, Vice Chairman Mikulski, and
Ranking Democratic Member Lowey: We are writing to urge you to include
the attached ``Invest in What Works'' provisions in the Appropriations
Committees' fiscal year 2016 bills and reports for the U.S. Departments
of Labor, Health and Human Services, Education, and, Related Agencies;
U.S. Departments of Commerce, Justice, Science, and Related Agencies;
U.S. Departments of Transportation, Housing and Urban Development, and
Related Agencies; and U.S. Department of State, Foreign Operations, and
Related Agencies. To provide you with a complete picture of our
evidence and evaluation agenda, we have also included for your
information requests for mandatory funding.
America is facing enormous social and economic shifts, budget
constraints at all levels of government, significant demographic
changes, and an increasingly globally competitive workforce. While the
recently enacted fiscal year 2015 Consolidated and Further Continuing
Appropriations Act includes an unprecedented commitment to evidence and
evaluation, we must continue to focus on improving the ways in which
Federal taxpayer dollars are spent. While the Administration's fiscal
year 2016 budget request proposes an even greater investment in what
works including but not limited to proposals in this letter, we must
continue to ensure that scarce Federal resources are invested in the
most effective and efficient programs in fiscal year 2016 and beyond.
We thank you for the positive steps you have taken toward building
a strong evidence-based, results-driven policy agenda and we encourage
you to reaffirm that commitment to improving outcomes for all Americans
by incorporating the attached ``Invest in What Works'' recommendations
in the fiscal year 2016 appropriations bills and Committee reports.
Thank you for your consideration of our requests.
Sincerely,
AdvancED
Alliance College-Ready Public Schools
America's Promise
Ascend at the Aspen Institute
Aspire Public Schools
BELL
Breakthrough Schools
Capital Impact Partners
Cascade Philanthropy Advisors
Center for Employment Opportunities
Center for Research and Reform in Education, Johns Hopkins University
Citizen Schools
City Year
Communities in Schools
Community Training and Assistance Center (CTAC)
CSH
Democrats for Education Reform
Education Northwest
Education Reform Now Advocacy
Forum for Youth Investment
Gestalt Community Schools
Green & Healthy Homes Initiative
Green Dot Public Schools
GreenLight Fund
IDEA Public Schools
KIPP
Knowledge Alliance
LIFT
LISC
Methodist Healthcare Ministries of South Texas
Mile High United Way
Morino Institute
National Forum to Accelerate Middle Grades Reform
New Profit, Inc.
New Teacher Center
Nurse Family Partnership
REDF
Results for America
Salt Lake County (UT)
Silicon Valley Community Foundation
SRI International
StriveTogether
Success for All Foundation
Teach For America
Teach Plus
The SEED Foundation
Third Sector Capital Partners
Turnaround for Children
U.S. Soccer Foundation
United Way of Greenville County (SC)
United Way for Southeastern Michigan
Uplift Education
Urban Alliance
Venture Philanthropy Partners
WestEd
Year Up
YES Prep Public Schools
Youth Village
INVEST IN WHAT WORKS
FISCAL YEAR 2016 APPROPRIATIONS REQUESTS
SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED
AGENCIES
------------------------------------------------------------------------
Recommendations for Fiscal Year 2016
U.S. Department of Labor Fiscal Year 2016
------------------------------------------------------------------------
Workforce Innovation and Opportunity
Act--Pay for Performance provisions
to deliver workforce development
service to WIOA participants and
provide innovative approaches to
using data and evidence to improve
workforce development
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
DOL Agency-Wide Evaluation Set- 1%
Aside--1% of discretionary funding
to be used by the Chief Evaluation
Office for program evaluations
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
U.S. DEPARTMENT OF HEALTH AND HUMAN
SERVICES
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Maternal, Infant, and Early
Childhood Home Visiting Program--
encourages HRSA and ACF to continue
their collaboration and partnership
to improve health and development
outcomes
�������������������������������������
Mental Health Service Block Grant At least 5%
Program--at least 5% set-aside for
evidence-based programs to address
the needs of individuals with
serious mental illness
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Head Start Designation Renewal $25,000,000
System--set aside within the total
provided for Head Start
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Children's Research and Technical $15,000,000
Assistance--to evaluate innovative
approaches to reducing welfare
dependency
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
National Directory of New Hires--to
permit select Federal statistical
and evaluation units to access the
National Directory of New Hires
dataset for statistical purposes
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
U.S. DEPARTMENT OF EDUCATION
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Titles I and II--new language
directing States to set-aside 1% of
funds, prior to distribution to
local school districts (LSD), and
award grants on a competitive basis
to LSD's that submit application
plans to improve student
achievement/graduate rates. Grants
should be targeted to the 25% of
LSD's with the highest poverty
level through tiered evidence as
defined by EDGAR
�������������������������������������
Supporting Effective Educator 5%
Development Grants (SEED)--set
aside 5% of the Improving Teacher
Quality State Grants for SEED
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Investing In Innovation (i3)--to $300,000,000
fund competitive grants to
replicate education programs that
have a high level of effectiveness
and test promising new ideas
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Replication and Expansion of High Not less than $100,000,000
Quality Charter Schools--set aside
for competitive grants to charter
management organizations
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Leveraging What Works--for a new $100,000,000
leveraging what works pilot to make
competitive grants for LEAS to use
a portion of their funds to
implement evidence-based
interventions
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Special Education--Results Driven Up to $10,000,000
Accountability Grants--for States
to identify and implement promising
evidence-based reforms to improve
service delivery to children
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Special Education--Pay for Success-- Up to $15,000,000
to reserve a portion of the Grants
to Infants and Families funds to
increase screening, identification,
early intervention for children
with disabilities
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
First in the World--with $20,000,000 $200,000,000
set aside for minority-serving
institutions to improve student
completion rates; and prioritize
applications that target innovative
strategies at low-income students
to help ensure access to practices
to improve outcomes and make
college more affordable
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Evaluation Set-Aside--bill language 1%
directing the Secretary to reserve
up to 1% of all discretionary
programs, except for Pell Grants,
and would also permit the pooling
of funds across all education
agencies for evaluations
�������������������������������������
CORPORATION FOR NATIONAL AND
COMMUNITY SERVICE
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Social Innovation Fund--includes 20% $80,000,000
for Pay for Success projects and
language directing the CNCS to
provide renewal grants to current
SIF grantees demonstrating outcomes
but not had time to reach goals;
language would also permit SIF
grantees to apply for additional
SIF funds for projects not
currently funded by SIF
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Performance Partnership Pilot-- Up to 10 pilots
designed to prevent youth from
disconnecting from school to work,
providing education and training,
employment and other social
services (All DOL, Ed and HHS and
related agencies may participate in
these partnership pilots)
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
MANDATORY PROGRAMS
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Maternal, Infant, and Early $500,000,000
Childhood Home Visiting Program--
permits States to provide
voluntary, evidence-based home
visiting to pregnant women and
parents with young children
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Social Services Block Grant Program Up to 1%
(SSBG)--permits the HHS Secretary
to set aside a portion of SSBG for
research and evaluation
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Upward Mobility Pilot--permits $1,500,000,000 over a 5 year
States, localities to blend funding period
across the Social Services Block
Grant, Community Services Block
Grant, HUDS's Home Investment
Partnerships and the Community
Development Block grant to reduce
poverty and permit funds to be used
implement evidence-based strategies
to improve employment, children's
outcomes and economic mobility
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
U.S. DEPARTMENT OF JUSTICE
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Second Chance Employment--Offender Up to $30,000,000
Re-entry--Pay for Success--for
performance-based awards and
projects implementing permanent
supportive housing models
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Performance Partnership Pilots--to
permit Justice programs to
participate in other Federal agency
performance partnership pilots
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
U.S. DEPARTMENT OF COMMERCE
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Ryan-Murray Evidence-based Policy $10,000,000
Commission--for a Records
Clearinghouse and Commission on
Evidence-Based Policymaking to
expedite the acquisition of Federal
administrative data sources to
improve data documentation
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
U.S. DEPARTMENT OF HOUSING AND URBAN
DEVELOPMENT
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Multifamily Performance-Based Energy
Conservation Demonstration--to test
a model that facilitates financing
of energy and water conservation
improvements in multifamily housing
to reduce utility costs
�������������������������������������
U.S. DEPARTMENT OF STATE
rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Development Innovation Ventures--to $22,400,000
invest in programs that could
change millions of lives
------------------------------------------------------------------------
[This statement was submitted by Michele Jolin, CEO and Co-Founder,
Results for America.]
______
Prepared Statement of Jynelle M. Rex
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Reverend Dr. Jerry L. Rogers
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
The developmental centers (DCs) serve clients who do not function
well at home or in a group home setting and who may have even been
placed into the DCs for care by the judicial system because they do not
function well in the community, yet who do not need to be in a prison
or jail. These DCs offer the least restrictive yet ``controlled/
safest'' setting that allows many of the residents to function as best
as they can given their developmental levels and behavior issues. The
DCs allow them to contribute as much as they can, to society, in the
day programs and workshops, and the DD population as well as learn as
much as they can about social interactions and appropriate behaviors,
in an atmosphere that does not demean, degrade, victimize, or
discriminate against them, and they feel accomplished in the process.
If the DCs are closed, the residents of these facilities will then
be placed back into the community in which they cannot function while
also having the workshops they attend being taken away from them.
Needless to say, this is going to be very stressful and possibly
behavioral triggering for many of these unfortunate individuals. When
these behaviors occur the only options that will be left for the group
homes, because of available staffing, will be for them to call the
police and have the individual placed into a mental health lock up for
72 hours, if not jail, and then eventually the individual being placed
into a locked down unit of a nursing home because the group home can
not handle them because of training and staffing issues. This is where
the DCs play such a vital role in the Ohio Mental Health system. If
they are closed there will be no supports and loss of most all of their
freedoms that they have now--no safety net for our most vulnerable and
fragile citizens. The probate judges will lose an important tool to
help these individuals secure help and who are not suited or in need of
incarceration in the penal system where they will yet be victimized
again.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mrs. N. Rogers
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Rotary International
Chairman Blunt, members of the Subcommittee, Rotary International
appreciates this opportunity to submit testimony in support of the
polio eradication activities of the U. S. Centers for Disease Control
and Prevention (CDC). The Global Polio Eradication Initiative (GPEI) 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 strongly supports the President's 2016
request of $168.8 million for the polio eradication activities of the
CDC to enable full implementation of the polio eradication strategies
and innovations outlined in the Polio Eradication and Endgame Strategic
Plan (2013-2018).
progress in the global program to eradicate polio
Significant strides were made in 2014 toward stopping transmission
of polio. Thanks to this committee's leadership in appropriating funds
for the polio eradication activities of the CDC:
--Eradication efforts have led to more than a 99 percent decrease in
cases since the launch of the GPEI in 1988 and saved 10 million
people from paralysis.
--Only 3 countries (Nigeria, Pakistan and Afghanistan) are polio-
endemic--the lowest number in history. India and the entire
Southeast Asia region were certified free from polio in 2014.
--Nigeria has applied lessons and infrastructure from polio
eradication to effectively stop an Ebola outbreak. Nigeria's
success in conquering Ebola is an example of the legacy of
polio eradication in action--and of the immediate return on our
collective investment. Nigeria only confirmed six cases of
polio in 2014.
--There have been no cases of endemic polio on the African continent
since August of 2014.
--Polio outbreaks in the Middle East, Horn of Africa, and Central
Africa, which accounted for roughly 60 percent of all cases in
2013, have been brought under control. All polio free countries
remain at risk for outbreaks until the wild poliovirus has been
eradicated in the remaining places where it persists.
--The Global Polio Eradication Initiative is cautiously optimistic
that type 3 polio may have been eradicated. There have been no
cases of type 3 polio for more than 2 years.
--Pakistan is now considered to be the only country in the world with
uncontrolled transmission of wild polio and as of 2 April,
accounts for 20 of the 21 polio cases that have been confirmed
in 2015 (the other case is in neighboring Afghanistan).
--Lack of access to children in insecure areas continues to hamper
progress. In Pakistan alone, more than 60 health workers and
security personnel assigned to protect them have been killed in
targeted attacks since November of 2012.
--Funding remains essential to addressing challenges in the remaining
polio affected countries and protecting the gains made in at
risk countries.
The Polio Eradication and Endgame Strategic Plan (2013-2018)
launched in 2013 lays out the strategies for the certification of the
eradication of wild poliovirus by 2018. This new plan builds on the
lessons learned from the successful eradication of polio to date and
the substantial advances in technology in 2012. The timely availability
of funds remains essential to the achievement of a polio free world.
The United States has been the leading public sector donor to the
Global Polio Eradication Initiative. Rotary International appreciates
the United States' generous support and recognizes increased funding
provided by Congress in fiscal year 2015 to ensure the GPEI can fully
implement the plan. Rotarians are committed to continuing their own
fundraising for the program until the world is certified polio free.
Rotarians will also continue to advocate support from the public and
other governments, both polio free and polio affected, to support the
successful execution of the Strategic Plan. The ongoing support of
donor countries, like the United States, is essential to assure the
necessary human and financial resources are made available to polio-
endemic and at risk countries to certify the world polio free by the
end of 2018.
the role of rotary international
Rotary International, a global association of more than 34,000
Rotary clubs in more than 170 countries with a membership of over 1.2
million business and professional leaders (more than 345,000 of which
are in the U.S.), has been committed to battling polio since 1985.
Rotary International has contributed more than U.S.$1.2 billion toward
a polio free world--representing the largest contribution by an
international service organization to a public health initiative ever.
Rotary also leads the United States Coalition for the Eradication of
Polio, a group of committed child health advocates that includes the
March of Dimes Foundation, the American Academy of Pediatrics, the Task
Force for Global Health, the United Nations Foundation, and the U.S.
Fund for UNICEF. These organizations join us in thanking you for your
support of the GPEI.
the role of the u.s. centers for disease control and prevention
Rotary commends CDC for its leadership in the global polio
eradication effort, and greatly appreciates the Subcommittee's
increased support of CDC's polio eradication activities to support full
implementation of the Strategic Plan. The United States is the leader
among donor nations in the drive to eradicate this crippling disease.
CDC has used the increased Congressional support provided in fiscal
year 2015 to:
--Globally.--In its role as a technical lead in the GPEI, CDC
supports hundreds of field staff to complete polio eradication,
including, notably, almost 200 STOP Polio assignees and large
``National STOP'' programs in Nigeria and Pakistan. CDC also
supports other contractors to work in Africa and Asia and has
detailed staff in several priority countries to work under WHO
and from within CDC field offices. This large network is
coordinated from CDC's headquarters in Atlanta.
--Build capacity in Nigeria.--The National Stop Transmission of Polio
(N-STOP) program, adapted from the original STOP Program, has
provided Nigeria with an accessible, flexible, and culturally
competent workforce at the front lines of public health. N-STOP
includes participatory training for public health workers
composed of ten modules covering poliomyelitis, vaccine
management and monitoring, program management, and problem-
solving practices. The Government of Nigeria and CDC partnered
in the program's implementation, which has resulted in the
placement of public health staff within the government
structure in more than 170 communities throughout the north to
strengthen local immunization teams. It has also supported
training of 10,000 health workers across the 13 States to
strengthen immunization systems and improve the quality of
polio immunization. To date, N-STOP has engaged more than
60,000 nomadic settlements to expand vaccine provision to more
than one million hard-to-reach children. The program updates
local immunization plans and increases fixed post and outreach
for routine immunization.
--Build capacity in Pakistan.--Increased investment in Pakistan will
focus on training and placing local personnel to strengthen the
program in areas where access is possible. Fiscal year 2015 has
brought the focus to Pakistan, where the successful model of
Nigeria is being adapted. Emergency Operations Centers have
been established at the national and provincial level; and the
National STOP program, adapted to Pakistan, is being
implemented. CDC's efforts will also focus on an increase in
cross border collaborations between Afghanistan and Pakistan to
intensify Polio eradication activities.
--Laboratory Surveillance.--Investment with CDC's Polio Global
Reference Lab will allow the recruitment of additional staff,
training for country and regional labs, essential IPV research,
and expansion of environmental surveillance capabilities in the
field. CDC provides technical and programmatic assistance to
the global polio laboratory network through the Polio
Laboratory in CDC's Division of Viral Diseases. CDC's labs
provide critical diagnostic services and genomic sequencing of
polioviruses to help guide disease control efforts. CDC will
continue to serve as the global reference laboratory, while
expanding environmental surveillance in countries to serve as a
``safety measure'' to detect any polioviruses circulating in
areas without cases. Kit distribution and proficiency testing
for ITD and sequencing
--Ebola response.--The polio infrastructure, built with significant
CDC input and support, adapted quickly to respond to an
importation of Ebola in October 2014 in Lagos. Senior polio
leadership quickly established an Emergency Operations Center
in Lagos and quickly responded to the outbreak, stopping the
virus without incident. Meanwhile, immunization rounds in
northern Nigeria continued as planned without a decrease in
quality. This showed the quality and resilience of the program
in Nigeria, and the adaptability of polio assets for use in
other public health issues.
--Vaccine Purchase.--CDC funds are being used to purchase oral polio
vaccine to immunize children against polio.
--Vaccine Operations & Social Mobilization.--CDC, through its
cooperative agreement with WHO, provides funding for
immunization activities in high risk and polio infected
countries. CDC funding is essential to supporting the
supplemental immunization activities that both stop existing
outbreaks and prevent new outbreaks. CDC collaborates closely
with UNICEF and provides critical support on analysis and use
of campaign results to identify and address reasons why
children are missed and address vaccine hesitancy concerns.
--Immunization Systems Strengthening.--Investment in this area will
allow CDC to provide scientific assistance across a range of
topics related to the introduction of IPV to focus countries,
other GAVI-eligible countries, and to non-eligible countries.
fiscal year 2016 budget request
For fiscal year 2016, we respectfully request this subcommittee to
provide $168.8 million for the CDC's polio eradication activities, the
level that was requested in the President's budget. Continued funding
will allow CDC to provide direct support and build capacity to continue
intense supplementary immunization activities in the remaining polio-
affected countries, continue leadership on data management to drive
evidence-based decisionmaking, and continue to implement strategies to
increase effective management and accountability. These funds will also
help maintain essential certification standard surveillance. This
funding will also ensure that CDC continues its essential contribution
toward work to interrupt polio transmission in the places where it
persists. Finally, continued funding will enable CDC to continue to
capitalize on polio eradication efforts to strengthen immunization
systems by developing country-level capacity to protect the gains made
in polio free countries and countries which remain at risk for
outbreaks.
benefits of polio eradication
Since 1988, over 10 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 145
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.
A study published in the November 2010 issue of the journal Vaccine
estimates that the GPEI could provide net benefits of at least $40-50
billion over the next 20 years. 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 $11 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 Sandra Ruffing
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Ryan White Medical Providers Coalition
My name is Dr. Alice C. Thornton, and I serve as Medical Director
of the Bluegrass Care Clinic (BCC) at the University of Kentucky
Medical Center in Lexington, Kentucky. I write to submit testimony on
behalf of the Ryan White Medical Providers Coalition (RWMPC), which I
Co-Chair. RWMPC is a national coalition of medical providers and
administrators who work in clinics supported by the Ryan White HIV/AIDS
Program funded by the HIV/AIDS Bureau (HAB) at the Health Services and
Resources Administration (HRSA). I thank the Subcommittee for its
support of Ryan White Part C Programs in fiscal year 2015. And while I
am grateful for this support, and understand that times are hard, I
request $225.1 million, or a $24 million increase for Ryan White Part C
programs in fiscal year 2016. While I know that this is a lot of
funding, it is in fact well below the estimated need--in 2014, my
clinic alone enrolled 168 new patients into care--a 14 percent increase
in 1 year. These funds help Ryan White clinics identify, engage and
effectively treat persons living with HIV/AIDS in a way that saves both
lives and money.
My Ryan White-funded clinic, the BCC, that has served as the source
for HIV primary care in the 63 counties of central and eastern Kentucky
for the past 24 years. Over half of the counties served are federally
recognized as economically distressed, and BCC cares for 74 percent of
the people living with HIV in the region. Since the BCC received its
first Part C grant in 2001, the number of patients has increased by
almost 300 percent. To help fund these enormous patient and cost
increases, the University incurs an annual deficit of approximately
$1.2 million.
In addition to critical funding that the Ryan White Part C provides
through direct Federal grants for comprehensive medical care clinics
like BCC, most Part C clinics, including BCC, also receive support from
other parts of the Ryan White Program that help 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 that results in excellent outcomes for our patients.
Ryan White Part C Programs Support Comprehensive, Expert and Effective
HIV Care
Part C of the Ryan White Program funds comprehensive, expert and
effective HIV care and treatment--services that are directly
responsible for the dramatic decrease in AIDS-related mortality and
morbidity over the last decade. The Ryan White Program has supported
the development of expert HIV care and treatment programs that have
become patient-centered medical homes for individuals living with this
serious, chronic condition. In 2011, a ground-breaking clinical trial--
named the scientific breakthrough of the year by Science magazine--
found that HIV treatment not only saves the lives of people with HIV,
but also reduces HIV transmission by more than 96%--proving that HIV
treatment is also HIV prevention.
The comprehensive, HIV care model that is supported by the Ryan
White Program has been highly successful at achieving positive clinical
outcomes with a complex patient population.\1\ In a convenience sample
of eight Ryan White-funded Part C programs ranging from the rural South
to the Bronx, retention in care rates ranged from 87 to 97 percent. In
estimates from the Centers for Disease Control and Prevention (CDC)--
only 37 percent of all people with HIV are in regular care
nationally.\2\ Once in care, patients served at Ryan White clinics do
well--with 75 to 90 percent having undetectable levels of the virus in
their blood. In 2014, 86 percent of BCC patients had an undetectable
viral load, and many of our patients continue to work and remain active
community members.
---------------------------------------------------------------------------
\1\ See Improvement in the Health of HIV-Infected Persons in Care:
Reducing Disparities at http://cid.oxfordjournals.org/content/early/
2012/08/24/cid.cis654.full.pdf+html.
\2\ See CDC's HIV in the United States: The Stages of Care http://
www.cdc.gov/nchhstp/newsroom/docs/2012/Stages-of-CareFactSheet-508.pdf.
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Investing in Ryan White Part C Programs Saves Both Lives and Money
Early and reliable access to HIV care and treatment both helps
patients with HIV live relatively healthy and productive lives and is
more cost effective. One study from the Part C Clinic at the University
of Alabama at Birmingham found that patients treated at the later
stages of HIV disease required 2.6 times more healthcare dollars than
those receiving earlier treatment meeting Federal HIV treatment
guidelines. On average it costs $3,501 per person per year to provide
the comprehensive outpatient care and treatment available at Part C
funded programs. The comprehensive services provided often include lab
work, STD/TB/Hepatitis screening, ob/gyn care, dental care, mental
health and substance abuse treatment, and case management. This is a
real bargain when compared to the cost of one night as an inpatient
(hospital)--$1000 to $3000 just for the bed per night.
Current Challenges--Future Promise
This effective and comprehensive HIV care model, however, is not
completely supported by Medicaid or most private insurance. While most
Ryan White Program clients have some form of insurance coverage,
without the Ryan White Program, they would risk falling out of care.
Barriers include poor reimbursement rates; benefits designed for
healthier populations that fail to cover critical services, such as
care coordination; and inadequate coverage for other important
services, such as extended medical visits, mental health and substance
use treatment. Full implementation of the Affordable Care Act's
Medicaid expansion plus continuation of the Ryan White Program will
dramatically improve health access and outcomes for many more people
living with HIV disease.
Fully Funding and Maintaining Ryan White Part C Programs Is Essential
Because of both the inadequacy of insurance coverage for people
with complex conditions like HIV and the fact that some individuals
will remain uncovered, even with Affordable Care Act implementation,
fully funding and maintaining the Ryan White Program is essential to
providing comprehensive, expert and effective HIV care nationwide. And
while RMWPC welcomes the $4 million increase for Part C programs
proposed in the President's fiscal year 2016 budget, it is concerned
about the proposal to consolidate Ryan White Part D funding into Part
C. RWMPC's specific concerns include:
--Parts C and D programs both provide comprehensive, effective care
and treatment for women, infants, children and youth living
with HIV/AIDS. However, Part D programs have cultivated special
expertise for engaging and retaining women (including pregnant
women) and young people in care. With adolescents accounting
for 26 percent of new HIV infections in the U.S., it is still
critical to target resources to support the effective,
comprehensive services that Part D programs provide to these
vulnerable populations.
In some communities, Part D-funded programs are the main providers
of HIV care and treatment. It is critical to ensure that
implementation of any budget proposal does not leave any
community without adequate access to effective and
comprehensive HIV care and treatment. Also, for Ryan White
medical clinics that currently receive only Part D funding, it
could prove difficult to successfully compete for Part C
funding if there already is a Part C program serving that
community; and loss of that Part D program could reduce the
community's overall access to HIV and treatment.
--It is unclear how the proposed consolidation would be implemented.
More detail outlining what the consolidation process would
entail and how it would practically impact grantees and access
to HIV care and treatment in communities is needed. Since most
Ryan White medical clinics receive funding from multiple parts
of the Ryan White Program, reduction of funding to one part of
the Program can have damaging and unintended consequences to
the overall services provided by Ryan White medical clinics,
especially now, as providers work to expand access to effective
HIV care and treatment. The two programs are different in their
focus and services, making consolidation challenging.
At this critical time in the HIV/AIDS epidemic, when research has
confirmed that early access to HIV care and treatment not only saves
lives but prevents new infections by reducing the risk of transmission
to near zero for patients who are virally suppressed and keeps patients
engaged and working, it is essential to maintain overall funding levels
for the Ryan White Program. While the ACA provides important new
healthcare coverage options for many patients, most health insurers
fail to support the comprehensive care and treatment necessary for many
patients to manage HIV infection. Exorbitant cost sharing, benefit gaps
and limited state uptake of the Medicaid expansion necessitate a vital
and ongoing role for the Ryan White Program. Increasing access to and
successful engagement in effective, comprehensive HIV care and
treatment is the only way to lead the Nation to an AIDS-free generation
and reduce the devastating costs of--including lives lost to--HIV
infection.
Remove the Ban on Federal Funding for Syringe Exchange Programs:
Advance Public Health and Address Drug Use in Kentucky and
Nationwide
RWMPC strongly urges Congress to lift the ban on Federal funding
for syringe exchange programs (SEPs). RWMPC is committed to evidence-
based public health interventions that both increase access to
healthcare and decrease transmission of HIV, viral hepatitis, and other
blood?borne pathogens. Injection drug use is a major route of
transmission for these infectious agents. Because transmission occurs
through the sharing or re?use of infected paraphernalia, access to
uninfected injection equipment is a key part of infection prevention
programs.
Kentucky has one of the highest rates of acute hepatitis C in the
country. We have seen a dramatic increase in hepatitis C infections
with a majority of infections occurring in young persons who live in
non-urban areas with a history of injection drug use, and previously
used opioid agonists such as oxycodone.\3\ In our infectious diseases
practice, hepatitis C and infections such as endocarditis, have
compromised the lives of too many Kentuckians, and we have been
frustrated by our inability to employ the full range of effective tools
available to prevent infections and help patients address their
addiction.
---------------------------------------------------------------------------
\3\ Centers for Disease Control and Prevention. Surveillance for
Viral Hepatitis--United States, 2012. Online at: http://www.cdc.gov/
hepatitis/Statistics/2012Surveillance/Commentary.htm.
---------------------------------------------------------------------------
However, last week, with its passage of a comprehensive bill (SB
192) to address the growing heroin epidemic in our State, Kentucky
legislators acted decisively in support of policies that are critical
to improving public health in Kentucky and the lives of its residents
affected by addiction, including many of our patients at the University
of Kentucky Medical Center. The new law emphasizes medical
interventions that expand access to medicine to reverse heroin
overdoses and increase access to addiction counseling and treatment. It
also includes a syringe exchange program provision--a well-proven tool
for preventing the spread of viral hepatitis, HIV and other infections.
The provision will allow local jurisdictions to establish programs that
provide clean syringes in exchange for used ones.
The importance of syringe exchange has been illustrated most
recently by new data from the Centers for Disease Control and
Prevention highlighting links between HIV infection and injecting drug
use, while also showing how this affects all of us. The data, published
in the agency's Morbidity and Mortality Weekly Report was gathered from
20 U.S. cities in 2012 and showed that of more than 10,000 injecting
drug users tested for HIV, 11 percent are living with the virus that
leads to AIDS. Of those who answered interview questions, 30 percent
reported injecting themselves with a syringe that was shared with other
people. The risk this data illustrates is not restricted to people who
inject drugs; the great majority of those interviewed also reported
having sex without using condoms.\4\
---------------------------------------------------------------------------
\4\ Centers for Disease Control and Prevention. HIV Infection and
HIV-Associated Behaviors Among Persons Who Inject Drugs--20 Cities,
United States, 2012. March 20, 2015:64(10);270-275. Online at: http://
www.cdc.gov/mmwr/preview/mmwrhtml/mm6410a3.htm?s_cid=mm6410
a3_e.
---------------------------------------------------------------------------
While the new Kentucky law is comprehensive and ambitious, it will
be up to policymakers at the local and Federal levels to ensure it
benefits my patients and those at risk for hepatitis C, HIV and other
infections. Funding to support the continuum of services from syringe
exchange to substance use treatment will be critical to stop this
epidemic, and Congress should permit Federal funds to support all of
these services, including syringe exchange programs.
Conclusion
Thank you so much for your consideration of these requests. If you
have any questions, please contact the RWMPC Convener, Jenny Collier.
[This statement was submitted by Alice Thornton, MD, Medical
Director, Bluegrass Care Clinic and Co-Chair, Ryan White Medical
Providers Coalition.]
______
Prepared Statement of Cindy R. Sands
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs,NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
TheseHHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related tool kit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care.Thelegally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Scleroderma Foundation
Chairman Blunt 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 2016 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 has been
called ``progressive systemic sclerosis,'' but the use of that term has
been discouraged since it has been found that scleroderma is not
necessarily progressive. The disease varies from patient-to-patient.
It is estimated that about 300,000 Americans have scleroderma.
About one third of those people have the systemic form of scleroderma.
Since scleroderma presents with symptoms similar to other autoimmune
diseases, diagnosis is difficult. There may be many misdiagnosed or
undiagnosed cases.
Localized scleroderma is more common in children, whereas systemic
scleroderma is more common in adults. Overall, female patients
outnumber male patients at a ratio of 4-to-1. Factors other than
gender, such as race and ethnic background, may influence the risk of
getting scleroderma, the age of onset, and the pattern or severity of
internal organ involvement. The reasons for this are still unknown.
Although scleroderma is not directly inherited, some scientists feel
there is a slight predisposition to it in families with a history of
rheumatic or autoimmune diseases. While, scleroderma can develop in
every age group from infants to the elderly, its onset is most frequent
between the ages of 25 to 55.
Currently, there is no cure for scleroderma. Treatments are based
on a patient's particular symptoms. For instance, heartburn can be
controlled by medications called proton pump inhibitors or medicine to
improve the motion of the bowel. Some treatments are directed at
decreasing the activity of the immune system. Due to the fact that
there is so much variation from one person to another, there is great
variation in the treatments prescribed.
Any chronic disease can be serious. The symptoms of scleroderma
vary greatly for each person, and the effects of scleroderma can range
from mild to life threatening. The seriousness will depend on which
organ systems of the body are affected, and the extent to which they
are affected. A mild case can become more serious if not properly
treated. Prompt and proper diagnosis and treatment by qualified
physicians may minimize the symptoms of scleroderma and lessen the
chance for irreversible damage.
about the foundation
The non-profit Scleroderma Foundation is the national organization
for people with scleroderma and their families and friends. It was
formed January 1, 1998, by a merger between the West Coast-based United
Scleroderma Foundation and the East Coast-based Scleroderma Federation.
The national office is headquartered in Danvers, Massachusetts. The
Foundation has a three-fold mission of support, education, and
research.
Support
The Scleroderma Foundation offers the following tools and resources
in support of people living with scleroderma and their families:
--A nationwide network of 24 chapters and more than 150 support
groups
--A toll-free helpline providing information and referrals to callers
--Educational materials, including a quarterly magazine called
``Scleroderma Voice"
--Offer a variety of brochures, booklets and newsletters, along with
our informative website
Additionally, the Foundation hosts an annual National Patient
Education Conference. The conference offers various educational and
networking opportunities for people living with scleroderma, their
caregivers, family members and friends. Workshops, panel discussions
and other educational sessions are led by the leading scleroderma
researchers and healthcare professionals.
Education
As part of our education mission, we not only perform all the
functions mentioned above, we also work with our Medical Advisory Board
of internationally known scleroderma experts to provide patient
education programs as well as education for physician/healthcare
professionals.
Research
The Scleroderma Foundation budgets at least $1 million a year for
research funding, its single largest budgeted expense. The Scleroderma
Foundation takes its fiduciary responsibility to donors very seriously,
especially with regard to our research grant program.
In the case of research funds, the Foundation's Peer Research
Review Committee, composed of medical experts on scleroderma from
around the world, helps determine which proposals will be funded by
reading, analyzing and ranking all proposals received. It follows a
peer review system based on that of the National Institutes of Health.
one family's story
Cheyenne Cogswell is an 8-year old third-grader living in the
poverty-stricken town of Falmouth, Kentucky. Cheyenne was diagnosed at
age six with a severe case of systemic scleroderma. The disease has
caused kidney failure and significant damage to her digestive system,
making it difficult for the body to receive the proper nutrition needed
for a growing child. She has undergone several life-saving operations
and numerous hospitalizations. Her skin and other internal organs, such
as the heart and lungs, are also affected. Cheyenne's treatment first
consisted of hospitalization and intense chemotherapy. She continues
with daily chemotherapy injections, now given by her mother, to help
suppress her immune system and slow the progression of the disease.
Cheyenne is being raised by a single mother who has faced extreme
consequences from the financial burden created by scleroderma, losing
her job in the economic downturn, as well as the family's home. Doctors
doubted if Cheyenne would survive beyond her seventh birthday, but she
continues to beat the odds. Chronic diseases like scleroderma are
unpredictable in their course, and the family--together with their
close circle of friends--continues to fight and hope for the best.
Their road is uncertain and illustrates why funding for NIH and its
research programs are vital to so many people whose lives are impacted
by chronic illness such as scleroderma.
sequestration
We have heard from the medical research community that
sequestration and deficit reduction activities have created serious
issues for Federal funding opportunities and the career development
pipeline. In order to ensure that the scleroderma research portfolio
can continue to grow, and, more importantly, to ensure that our country
is adequately preparing the next generation of young investigators, we
urge you to avert, mitigate, or otherwise eliminate the specter of
sequestration. While the Foundation has anecdotal accounts of the harms
of sequestration, the Federated American Societies for Experimental
Biology has reported:
--In constant dollars (adjusted for inflation), the NIH budget in
fiscal year 2013 was $6 billion (22.4 percent) less than it was
in fiscal year 2003.
--The number of competing research project grants (RPGs) awarded by
NIH has also fallen sharply since fiscal year 2003. In fiscal
year 2013, NIH made 8,283 RPG awards, which is 2,110 (20.3
percent) less than in fiscal year 2003.
--Awards for R01-equivalent grants, the primary mechanism for
supporting investigator-initiated research, suffered even
greater losses. The number awarded fell by 2,528 (34 percent)
between fiscal year 2003 and fiscal year 2013.
The pay line for some NIH funding mechanisms has fallen from 18
percent to 10 percent while the average age for a researcher to receive
their first NIH-funded grant has climbed to 42. These are strong
disincentives to choosing a career as a medical researcher. Our
scaling-back is occurring at a time when many foreign countries are
investing heavily in their biotechnology sectors. China alone plans to
dedicate $300 million to medical research over the next 5 years; this
amount is double the current NIH budget over the same period of time.
Scientific breakthroughs will continue, but America may not benefit
from the return-on-investment of a robust biotechnology sector. For the
purposes of economic and national security, as well as public health,
the Foundation asks that you work with your colleagues to eliminate
sequestration and recommit to supporting this Nation's biomedical
research enterprise.
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. Unfortunately, budgetary
challenges at CDC have pushed the agency to focus resources on
combating a narrow set of ``winnable battles.'' 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 has worked 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, NHLBI AND NIDDK.
Emerging NIH initiatives like the Cures Acceleration Network and
the Accelerating Medicines Partnership are creating meaningful
opportunities to advance scleroderma research. Please provide NIH with
a significant funding increase to the scleroderma research portfolio
can continue to expand and facilitate key breakthroughs.
--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.
additional medical research activities
In recent years, scleroderma has been listed as a condition
eligible for study through the Department of Defense (DOD) Peer-
Reviewed Medical Research Program (PRMRP). Since fiscal year 2005, the
opportunity for scleroderma researchers to compete for funding through
this mechanism led to over $10 million in scleroderma research funding
as well as the initiation of meaningful research projects. Research on
the underlying mechanisms of scleroderma is showing relevance to all
fibrosis, which occurs at higher rates among individuals who served in
the military and our veterans. Further, military service-associated
environmental triggers, particularly silica, solvent, and radiation
exposure, are believed to be potential triggers for scleroderma in
individuals that are genetically predisposed to it.
We appreciate that the Defense Appropriations Subcommittee and the
Senate play important roles in crafting the annual eligible conditions
list. The scleroderma community urges you to weigh in with your
colleagues on the Appropriations Committee to actively work to see that
scleroderma is continues to be listed as a condition eligible for study
through the PRMRP within the Committee Report accompanying the fiscal
year 2016 Defense Appropriations Bill.
Thank you again for your time and your consideration of the
scleroderma community's requests.
______
Prepared Statement of Carole L. Sherman
I am the mother and co-guardian of an adult son, aged 46, who from
birth has lived with the effects of severe brain injuries. John is a
large, mobile and nonverbal man with pica behaviors (eating inedibles)
who functions on the mental level of a young toddler, a 2-year old, to
be more exact. Our son has slight or little awareness of danger and for
many years his safe home has been a State-operated congregate care
program. The future viability of John's home is in jeopardy due to the
undermining work of federally funded entities and programs in the U.S.
Department of Health and Human Services.
I represent as public affairs chairman Families and Friends of Care
Facility Residents (FF/CFR), Arkansas' statewide parent-guardian
association. FF/CFR is an all-volunteer organization; we employ no
lobbyist; we receive no public funds.
The following are examples of how government dollars are spent in
the wrong way by the Department of Health and Human Services:
(1) National Council on Disability (NCD), an independent Federal
agency engaged in disability policy recommendations.
On Tuesday, October 23, 2012, the National Council on Disability
(NCD) released its policy project--``Deinstitutionalization: Unfinished
Business.'' The press release read: ``NCD Launches Toolkit to Speed
Closure of State-Run Institutions.'' Prior to releasing its
deinstitutionalization policy recommendations and documents, there were
no public hearings or Notice to those most affected. There was no
public in-put process for those most affected. NCD inappropriately
collaborates with others in promoting its national de-
institutionalization agenda out of the public eye.
REQUEST.--Please discontinue funding for National Council on
Disability.
(2) Programs funded under Public Law 106 402, Developmental
Disabilities Assistance and Bill of Rights Act (DD Act). The DD
Act funds three discretionary programs which operate in every
State: (1) State Councils on Developmental Disabilities, (2)
Protection & Advocacy Systems for Developmental Disabilities
(P&As) and (3) University Centers for Excellence in
Developmental Disabilities. The DD Act also funds a fourth
program, Projects of National Significance. The four DD Act
programs are administered by DHHS/Adm. on Community Living/Adm.
on Intellectual-Developmental Disabilities.
The DD Act programs' administering agency, Administration on
Community Living (ACL), permits DD Act programs to engage in activities
which undermine and eliminate long-term care facilities for persons who
cannot care for themselves. The agency is not responsive to families'
objections.
Our families seek relief from DD Act programs, which have
insufficient oversight and which use public funds for
deinstitutionalization activities. The Arkansas DD Act protection and
advocacy system (P&A) has brought three Federal lawsuits against the
State naming residents of State-operated human development centers
(HDCs) as Plaintiffs without notice to their legal guardians; it
contacted media, organized a rally and called for closure of Booneville
HDC (2010 and 2015). In January, 2015, the Arkansas P&A contacted media
and issued a report containing inaccurate information about BHDC; the
report called for shifting Medicaid funds from our human development
centers to other programs. Representatives of the Arkansas P&A have
testified before Arkansas legislative panels against capital
improvement funds for our State-operated human development centers.
ACL funds Projects of National Significance (PNS) grants, two of
which continue year after year without sufficient oversight and without
opportunities for families to comment or object to the grantees'
deinstitutionalization activities. PNS grants have been awarded to
organizations which work to eliminate long-term care facilities for
persons who cannot care for themselves.
DD Act programs (State Councils, P&As and UCEDDs) provide financial
support (public funds) for the work of their national organizations
which operate in and around Washington, D.C. without impartial and
reasonable oversight. At times--as in late 2012 when the groups worked
to defeat H.R. 2032--the DD Act national organizations engage in
lobbying and/or they lead others in lobbying members of Congress to
achieve goals of undermining and eliminating congregate care programs
for persons who cannot care for themselves.
REQUEST.--Please preclude use of Federal funds for:
DD Act programs' deinstitutionalization activities, including
activities of their national organizations; and
Projects of National Significance' activities which undermine and
eliminate long-term care facilities for persons who cannot care
for themselves.
(3) DHHS Financial incentive grants--Money Follows the Person
(MFP), Balance Incentive Payment Plan (BIP), Community First
Choice Option (CFCO).
DHHS/CMS financial incentive grants reward States when they shift
Medicaid long-term care funding from institutional care programs to
community programs which generally have less oversight and
accountability and the practice is misguided and dangerous. Families of
individuals who require close care had little or no opportunity to
review, comment and object that CMS incentive grants favor one needed
program over another critically needed program. The extension of
Federal funding for Money Follows the Person (MFP) grants and Community
First Choice Option (CFCO) are optional programs offered to the States
in the voluminous Affordable Care Act, inserted without adequate
review, without discussion, and without adequate notice to families
most affected. Extension of MFP, BIP, and CFCO were created by DHHS out
of the public eye with inadequate opportunity for the public to review,
comment or object.
REQUEST.--Please address the unfair, unsafe CMS de-
institutionalization incentive grants.
summary
All affected parties should be allowed at the DHHS table when
health and safety policies for our Nation's vulnerable populations are
formulated. That has not been the case. Please resist funding DHHS
programs and policies which promote harmful deinstitutionalization of
persons with severest forms of developmental disabilities. My son and
his peers cannot appear before committees, engage in protests or
advocate for their health and safety.
______
Prepared Statement of Patricia Simpson
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Sleep Research Society
Chairman Roy Blunt, Ranking Member Patty Murray, and distinguished
members of the Subcommittee, as you begin to craft the fiscal year 2016
Labor-HHS-Education appropriations bill, the Sleep Research Society
(SRS) is pleased to submit this statement for the record asking you to
provide $32 billion for NIH, including a proportional increase for the
National Heart, Lung, and Blood Institute (NHLBI), $1 million in
funding for sleep disorders awareness and surveillance at the Centers
for Disease Control and Prevention (CDC), full support for the National
Center on Sleep Disorders Research (NCSDR), and implementation of the
2011 NIH Sleep Disorders Research Plan. These actions will ensure
increased awareness of the importance of sleep and circadian rhythms
and further the advancements being made by sleep researchers to better
understand the relationship between sleep and health.
sleep research society
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 1,100 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. We promote 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.
According to an Institute of Medicine's report entitled, ``Sleep
Disorder and Sleep Deprivation: An Unmet Public Health Problem''
(2006), chronic sleep and circadian disturbances and disorders are a
very real and relevant issue in today's society as they affect 50-70
million Americans across all demographic groups. Sleep deprivation is a
major safety issue, particular in reference to drowsy driving, where it
is a factor in 20 percent of motor vehicle injuries. The widespread
effect of sleep disorders on every age group poses a public health
risk, extending from the ability to learn to maintain a healthy
lifestyle. Furthermore, it is important to recognize that sleep
disorders and circadian disturbances are often an indicator of, or a
precursor to other major diseases and disorders including; obesity,
diabetes, hypertension, cardiovascular disease, stroke, depression,
bipolar disorder, and substance abuse. Another increasingly detrimental
condition affecting 15 percent of the population is sleep-disordered
breathing, including obstructive sleep apnea. Sleep apnea results in
excessive daytime somnolence, poor performance, increased frequency of
road traffic accidents, and arterial hypertension. Studies show that 85
percent of 725 troops returning home from Afghanistan and Iraq had a
sleep disorder and the most common was obstructive sleep apnea (51
percent). If left untreated, obstructive sleep apnea has significant
negative impacts on health, including early mortality.
national institutes of health
Due to the fact that sleep is a multi-disciplinary issue, many
institutes and centers at NIH, utilize a portion of their funding to
support sleep and circadian research. The majority of sleep research is
coordinated by NHLBI, particularly the National Center on Sleep
Disorders Research. An appropriation of $32 billion for NIH, and $3
billion for NHLBI, is needed to facilitate the continued growth and
advancement in the sleep and circadian research portfolio.
The reason NCSDR is housed at NHLBI is due to the important link
between sleep disorders and cardiovascular health. NCSDR supports
research, health education, and research training related to sleep-
disordered breathing and the fundamental function of sleep and
circadian rhythms. Furthermore, NCSDR coordinates sleep research across
NIH and with other Federal agencies and outside organizations.
NCSDR's coordinating role between institutes is made possible
through adequate funding. These research activities also have far
reaching effects, beginning with training grants targeted towards
undergraduate students and career development opportunities attracting
top talent in doctoral programs. Sequestration has the potential to
disrupt the research training pipeline by reducing the amount of K, T,
and F series awards for new investigators. It could also disrupt the
career development pipeline designed to train future investigators who
are pursuing research in sleep disorders and circadian rhythms. It is
important to fund NIH at $32 billion and NHLBI at $3 billion in fiscal
year 2016 so that we can continue these advancements in sleep and
circadian research.
centers for disease control and prevention
CDC gathers important data on sleep disorders through their
surveillance efforts under the Chronic Disease Prevention and Health
Promotion program. Most notably, CDC engages in the National Healthy
Sleep Awareness Project which conducts research on prevalence and
incidence of sleep disorders, and raises awareness on the importance of
healthy sleep through the production of State fact sheets, updating the
CDC website, and disseminating information on sleep related topics.
Currently population-based data on the prevalence of circadian
disruption and its relationship to disease risk is relatively limited.
Please fund CDC at $7.8 billion including an allocation of $1 million
solely for sleep awareness and surveillance activities within the
Chronic Disease Prevention and Health Promotion program, so that
progress can continue in the areas of sleep disorders and disturbances,
sleep awareness, and education to the public community.
nih sleep disorders research plan
NCSDR published the NIH Sleep Disorders Research Plan in November
of 2011 highlighting the implementation of pertinent sleep research
goals to enable further advancements in the realm of sleep and
circadian rhythm disorders. A Joint Task Force between the two leading
organizations representing the sleep medicine and research community,
Sleep Research Society (SRS) and American Academy of Sleep Medicine
(AASM), has identified research opportunities that will have the
highest impact on health within the plan.
The Plan recommends implementation of the following sleep research
goals which will help us understand the function of sleep and inform
individuals on healthier lifestyle choices:
--Advance the understanding of sleep and circadian functions and of
basic sleep and circadian mechanisms, in both the brain and the
body, across the lifespan.
--Identify genetic, pathophysiological, environmental, cultural,
lifestyle factors, and sex and gender differences contributing
to the risk of sleep and circadian disorders and disturbances,
and their role in the development and pathogenesis of co-morbid
diseases and disability.
--Improve prevention, diagnosis, and treatment of sleep and circadian
disorders, chronic sleep deficiency, and circadian disruption,
and evaluate the resulting impact on human health.
--Enhance the translation and dissemination of sleep and circadian
research findings and concepts to improve healthcare, inform
public policy, and increase community awareness to enhance
human health.
--Enable sleep and circadian research training to inform science in
cross-cutting domains, accelerate the pace of discovery, and
the translation of enhanced therapies from bench to bedside to
community.
Research activities and stakeholders addressed by the plan benefit
from the encompassing range of NIH research, training, and outreach
programs. Over the past 2 years, steps have been taken to implement
portions of this research plan, but additional work needs to be done.
SRS encourages you to recommend that this research plan continue to be
implemented during fiscal year 2016.
Thank you for the opportunity to submit the views of the sleep
research community. Please do not hesitate to contact us should you
have any questions or require additional information.
[This statement was submitted by Allan Pack, MBCHB, Ph.D.,
President, 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 funding for the National
Institutes of Health, in particular, the Eunice Kennedy Shriver
National Institute of Child Health and Human Development (NICHD). We
urge your support of at least $32 billion for NIH, including $1.37
billion for NICHD in fiscal year 2016.
Established in 1977, SMFM is dedicated to improving maternal and
child outcomes and raising the standards of prevention, diagnosis, and
treatment of maternal and fetal disease. Maternal-fetal medicine
specialists, known as MFM specialists, perinatologists, or high-risk
pregnancy physicians, are highly trained obstetricians/gynecologists
with advanced expertise in obstetric, medical, and surgical
complications of pregnancy and their effects on the mother and fetus.
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 be understood, treated, prevented and eventually
solved through research.
NICHD's mission is to ensure that every child is born healthy and
that women suffer no harmful effects from reproductive processes.
NICHD-supported basic, clinical, translational, and multidisciplinary
research studies address a myriad of issues in pregnancy including:
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.
Hypertensive Diseases in Pregnancy.--High blood pressure
(hypertension) during pregnancy is the second leading cause of maternal
death in the United States, accounting for 15 percent of all deaths.
For the mother, it is associated with increased need for delivery
because of pregnancy complications, stroke, pulmonary or heart failure,
and death. The likelihood and severity of these complications increases
as the severity of the hypertension increases, and if preeclampsia
develops. Preeclampsia is characterized by high blood pressure and the
presence of protein in the urine. Its cause remains one of the greatest
mysteries in obstetrics and is a major cause of maternal, fetal, and
neonatal mortality worldwide.
Pregestational and Gestational Diabetes.--The hormonal changes of
pregnancy can seriously worsen preexisting diabetes and often bring
about a diabetic state (gestational diabetes) in predisposed women.
Whether diabetes mellitus existed before conception or gestational
diabetes develops during pregnancy, maternal glucose intolerance can
have significant medical consequences for both mother and baby. Poorly
controlled diabetes is associated with miscarriage, congenital
malformations, abnormal fetal growth, stillbirth, obstructed labor,
increased cesarean delivery, and neonatal complications. Up to 200,000
pregnancies are affected by gestational diabetes each year.
Great strides are being made through NICHD-supported research to
address the complex situations faced by mothers and their babies.
However, there are multiple ways in which the NIH can shore up its work
in the area of pregnancy and maternal health. In fact, most of the
research being conducted in the U.S. on pregnancy is occurring at the
NIH. There is very little private support for such efforts, and
therefore it is essential for the NIH to continue this important work.
Key areas of research that SMFM supports are:
Funding the Goals of the National Children's Study.--Although
SMFM was disappointed that the National Children's Study (NCS)
itself was canceled, we fully support continued efforts at the
NIH to achieve the statutory mandates set forth in Section 1004
of the Children's Health Act of 2000. We were pleased to see
the Committee appropriate $165 million for these efforts in
fiscal year 2015, and we urge you to continue this work with
dedicated funding in fiscal year 2016. Current funding for
projects like the Human Placenta Project will allow us for the
first time to understand the role of the placenta on fetal
development as well as the health of the mother. The goals and
mission of the NCS should continue to be advanced aggressively
in future years. As a result of the work conducted by NCS and
other NIH research, we now understand that the effects of
physical and social environments on health begin earlier and
reach farther than we had ever imagined. We must work now with
even greater commitment and urgency to better understand the
precursors of child and adult disease in order to develop new
treatment and prevention strategies that will improve the
health of the entire population.
Prioritizing Pregnancy and Breastfeeding Research.--With
additional support NICHD could explore the effect of
medications in pregnancy and breastfeeding. We know that a
majority of women take one or more medications during
pregnancy, but we know very little about the safety or efficacy
of these drugs on the woman or her child. As MFMs, we often
prescribe disease managing medications to pregnant women and do
the best we can with the information available. But we need
more information. Women and their babies could be healthier
with additional research in this area.
Building on the Infrastructure in Place via NICHD's Research
Networks.--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
pregnancythe problem of preterm birth and its consequence.
--The Stillbirth Collaborative Research Network (SCRN) was created
to study the extent and causes of stillbirth in the United
States, and is conducting a geographic population-based
determination of the incidence of stillbirth and is
determining the causes of stillbirth using a standardized
protocol that includes clinical histories, autopsies and
pathologic examinations of the fetus and placenta as well
as other postmortem tests to illuminate genetic, maternal
and environmental influences. The information from this
Network will benefit families who have experienced a
stillbirth, women who are pregnant or who are considering
pregnancy, and obstetric care providers. In addition, the
knowledge gained from this Network will support future
research aimed at improving preventive and therapeutic
interventions and at understanding the mechanisms that lead
to fetal death.
--Another important network is the Maternal-Fetal Medicine Units
Network (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 and
will put an end to practices that are not useful. 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 NIH
networks, as well as international networks in order to
improve global 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:
-- Following a series of studies in the 1970s and 1980s, an MFMU
Network clinical trial showed that progesterone treatment
resulted in a substantial reduction in the rate of preterm
delivery among women who had a previous preterm birth,
reduced the risk of newborn complications, and was
effective in both African American and Non-African American
women.
-- The MFMU Network conducted the largest, most comprehensive
trial to date to test whether magnesium sulfate given to a
woman in labor with a premature fetus (24 to 31 weeks out
of 40) would result in a reduction in cerebral palsy. In
August 2008, NIH announced that magnesium sulfate, when
administered to women at risk of imminently delivering
preterm, reduces the risk of cerebral palsy in surviving
preterm infants by 45 percent.
-- The MFMU Network provided the first conclusive evidence that
treating pregnant women who have even the mildest form of
gestational diabetes can reduce the risk of common birth
complications among infants, as well as blood pressure
disorders among mothers. These findings will change
clinical practice and lead to better outcomes for both
mothers and babies.
--Vigorous support of the MFMU Network is needed so that therapies
and preventive strategies that have significant impact on
the health of mothers and their babies will not be delayed.
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.
--The NuMoM2b network was developed to use current genomic and
proteomic techniques in combination with traditional
markers for the prediction of adverse pregnancy outcomes,
including preterm birth, preeclampsia, fetal growth
restriction, and stillbirth in first pregnancies, since
adverse pregnancy outcomes are at increased risk for
complications in future pregnancies and over 40 percent of
pregnancies in the United States are first pregnancies. The
NuMoM2b study of 10,000 women provides the infrastructure
for additional multicenter study of sleep disordered
breathing in pregnancy. Epidemiologic studies have shown
that a woman's health status during pregnancy is associated
with her long-term health after pregnancy, suggesting that
findings in pregnancy may be a better indicator for
determining a woman's future health status than traditional
risk factors. The NuMoM2b study could serve as the basis
for long-term studies to determine the relationships
between adverse pregnancy outcomes and long-term maternal
health.
Finally, opportunities for future study include collaborative work
by NICHD, NHLBI and NIDDK to more closely study these epidemiologic
findings in an effort to identify predictive markers during pregnancy
for subsequent heart disease and diabetes; develop tests to evaluate
health after pregnancy; and test interventions both during and after
pregnancy that may mitigate risk. Research is the cornerstone for
improving our understanding of the physiology and pathophysiology of
pregnancy, the interrelationship between the mother and fetus, the
impact of medical conditions on pregnancy and the impact of medical
diseases and pregnancy outcomes on the long term health of both mother
and child. With your support, researchers can continue to peel away the
layers of complex problems of pregnancy that have such devastating
consequences. Please support at least $32 billion for the NIH in fiscal
year 2016, and continue the important work that is being done there.
Without predictable, sustainable funding, many of these breakthroughs,
as well as future breakthroughs, would not be possible. Already the
contribution of such research on the health and wellbeing of mothers
and children is making a difference, but we must build on that for
future strides.
[This statement was submitted by Dr. Laura Riley, President,
Society for Maternal-Fetal Medicine.]
______
Prepared Statement of the Society for Neuroscience
Mr. Chairman and members of the Subcommittee, my name is Steven E.
Hyman, and I am privileged to offer this testimony in support of
increased funding for NIH for fiscal year 2016. I offer this testimony
in my capacity as president of the Society for Neuroscience (SfN). I am
also director of the Stanley Center for Psychiatric Research at the
Broad Institute of MIT and Harvard as well as Harvard University
Distinguished Service Professor of Stem Cell and Regenerative Biology.
The Stanley Center is focused on using human genetic analysis to
discover the neurobiological bases of neuropsychiatric disorders with a
view to discovering new treatments.
The mission of SfN is to advance understanding of the brain and
nervous system. Drawing on knowledge from the life sciences, physical
sciences, and engineering, brain research is among the most promising
and productive areas of science today. Given the tremendous human and
economic toll of brain disorders worldwide--including autism,
depression, schizophrenia, multiple sclerosis, Parkinson's disease, and
Alzheimer's disease--it is among those areas of research in which
continued progress is most powerfully needed. SfN leads efforts to
disseminate and discuss emerging neuroscience discoveries, hosting one
of the world's largest annual scientific meetings and publishing two
leading scientific journals. SfN works to cultivate the next generation
of scientists and physicians by providing professional development and
training activities. SfN is also committed to actively educating the
public about the brain both in health and in illness, and to engaging
policymakers regarding the tremendous progress and potential of brain
research. On behalf of the nearly 40,000 members of SfN, I thank you
for your past support of the NIH and of neuroscience research. Thank
you also for your support and investment in the NIH portion of the
Brain Research through Advancing Innovative Neurotechnologies (BRAIN)
Initiative. As one crucial part of the Federal investment in
neuroscience, NIH-funded BRAIN programs will accelerate future
discoveries across many areas of neuroscience and throughout the life
sciences more broadly.
The Society stands with others in the research community in
requesting $33 billion for NIH for fiscal year 2016. This level of
support would help mitigate some of the damage done to the scientific
enterprise of the United States by sequestration, which has taken an
enormous toll on the research enterprise. Following the first year of
sequestration cuts in fiscal year 2013, approximately 640 fewer
competitive research project grants were issued and 750 fewer new
patients admitted to the NIH Clinical Center. The last 4 years,
including 2014, have seen the lower success rates for Research Project
Grants than in the previous thirteen. In recent years, funding has
failed to keep pace with inflation and, more importantly, with the
remarkable scientific opportunities that hold the potential for life-
altering breakthroughs. It is time to put research on a trajectory of
sustained growth that recognizes its promise, its importance as a
springboard for economic development, and the centrality of NIH-funded
science to new and more effective approaches to the advancement of
health and well-being for all Americans.
Cross-Disciplinary Neuroscience
The basic research funded by NIH at universities and hospitals
across the Nation leads to discoveries that will inspire scientific and
medical progress for generations. Such research also serves as a
springboard for industry, which cannot take on the long-term investment
or risks inherent in basic science. Past NIH-supported projects have
helped neuroscientists make tremendous strides that have led to
advances in the diagnosis and treatment of neurological and psychiatric
disorders.
The following examples are just a few of the many success stories
made possible by brain research funded by a strong historic investment
in NIH and other research agencies.
New Light on Autism, Schizophrenia, and Alzheimer's disease
Among the risk factors for many common, devastating brain
disorders, genetic contributors loom large. Identification of risk
genes is critically important, because they can provide clues both to
biomarkers and ideas for new therapies.
For more than a decade, it has been relatively straightforward to
identify disease genes in the cases where a single gene produces
illness, as in the case of familial Alzheimer's disease and some very
severe forms of autism. However, such situations are quite rare.
Illness in the vast majority of people with Alzheimer's disease,
autism, and epilepsy, and virtually all people with schizophrenia,
results from the interaction of many small variations in the genetic
code together with environmental risk factors. While it has long been
recognized that identification of the precise genetic risk factors for
these disorders would be extremely valuable in lighting the path to new
treatments, such clues seemed out of reach. The human genome project
changed that, providing technology and computing tools that would make
it possible to identify the small genetic signals that contribute to
disease, previously hidden a sea of healthy human DNA sequence
variation.
Through its research support and wise policies that encouraged
collaboration and sharing of data, NIH has played a central role in
moving the genetic analysis of common brain disorders forward. Finding
the ``signal'' in the ``noise'' required very large patient samples
that took years to assemble. During the past year, important progress
has been reported in identifying genomic regions involved in common
forms of Alzheimer's disease, autism, epilepsy, schizophrenia, and
multiple sclerosis. While there remains a challenging path if we are to
transform these new understandings into effective new treatments, these
important newly reported clues have had a galvanizing effect in
universities, hospitals, and in industry. The result is many new ideas
and efforts to attack these disorders.
Navigating the World
The most advanced surveillance system is built into the brain. It
comes equipped with a system that maps the locations and the order of a
lifetime of events. Through new research tools and insights, scientists
are coming to understand how the brain permits us to navigate the
environment. Recent discoveries show that finding the way in the world
is inexorably linked to the brain structures and processes by which
memories are stored. While the brain is making mental maps to help a
person navigate, it is also overlaying remembered experience onto those
maps. The very same cells and circuits that help us navigate is the one
that is damaged first in Alzheimer's disease. One of the first symptoms
of Alzheimer's disease is that its victims can no longer find their
car, and often can no longer find their way home. Further insight into
how the brain builds networks can potentially lead to interventions
that spare millions of people from the debilitating effects of memory
disorders.
The importance of this work is underscored by the fact that the
2014 Nobel Prize in Physiology or Medicine was awarded to three
pioneering neuroscientists who study navigation. Their work on the very
basic science of how individual brain cells code the body's position in
space has opened the door for important translational research studies.
Building on this groundbreaking work, NIH-funded researchers are
currently investigating the computations cells perform to determine
position in space; the relationship between spatial memory and
decisionmaking; and novel interventions targeted at this system to
improve cognitive abilities in a host of disorders that damage memory.
Bypassing Barriers
Studies funded by NIH are helping researchers understand the blood-
brain barrier, which helps block harmful substances from entering the
brain. Unfortunately, many life-saving drugs are also unable to cross
it, and thus cannot reach their target. An estimated 98 percent of
potential drug treatments for brain disorders are unable to penetrate
the blood-brain barrier. Researchers are developing techniques to open
this barrier and allow medicines to enter. These techniques resulted in
successful delivery of chemotherapy to patients with brain tumors,
anti-clotting drugs to stroke patients, and other important treatments.
Scientists are also developing new strategies for attaching drugs
to molecules that naturally cross the barrier. This method has shown
success in several animal models by allowing drugs for conditions like
Parkinson's disease to enter the brain. Through this research,
scientists are creating new ways to open the blood-brain barrier so
that life-saving drugs can reach specific targets without also opening
the barrier to substances that must be excluded. Researchers are
hopeful that new knowledge of the blood-brain barrier function, and new
methods for drug delivery to the brain, will one day lead to better
treatments for some of the most challenging and intractable disorders.
Neuroscience: An Investment in Our Future
Despite the difficult funding environment, the last several years
have been a tremendously exciting and productive time for neuroscience
discoveries. Major research advances in genomics, brain development,
brain circuitry and imaging, computational neuroscience, neural
engineering, and many other disciplines have occurred. Progress in
these areas is leading to new tools, new knowledge, and an
understanding of the brain that was unimaginable even a few years ago.
Consider what could be learned with a more favorable funding posture
and how it could be applied to human health.
Sustained investment to stimulate and speed these discoveries is
essential to American healthcare and economic well-being. First, major
investment in basic and translational neuroscience is not only fueling
an enduring and vital scientific endeavor; it is the essential
foundation for understanding and treating diseases that strike nearly
one billion people worldwide. At home, there are more than 1,000
debilitating neurological and psychiatric diseases that strike over 100
million Americans each year. This, in turn, produces severe hardship
for millions of families and costs the U.S. economy at least $760
billion a year, with future expenses reaching the trillions looming for
several conditions. Otherwise beneficial increases in life span may be
may be profoundly undercut by neurodegenerative diseases such as
Alzheimer's disease and other dementias. Advances made possible by
publicly-funded research will help us maintain, and perhaps someday
restore, healthy brain function. With funding from NIH, researchers can
continue working towards lifesaving breakthroughs such as developing
ways for paralyzed people to regain control of their lives by using
thoughts to move a robotic arm or investigating the recently discovered
set of ten blood compounds that might be used to identify older adults
at risk for developing memory deficits. NIH's funding should reflect
the effort needed to achieve these innovations.
Additionally, NIH funding is an investment in America's current
economic strength. Funding for research supports quality jobs and
increases economic activity. NIH supports approximately 400,000 jobs
and $58 billion in economic output nationwide. Eighty-five percent of
NIH's budget funds extramural research in communities located in every
State.
Finally, without robust, sustained investment, America's status as
the preeminent leader in biomedical research is at risk. Other
countries are investing heavily in biomedical research to take
advantage of new possibilities. Even with growing philanthropic
support, the private sector cannot be expected to close the gap. The
lag-time between discovery and profitability means that the
pharmaceutical, biotechnology, and medical device industries need
federally-funded basic (also known as fundamental) research to develop
products and treatments. The foundation that basic research provides is
at risk if federally-funded research declines.
Conclusion
We live at a time of extraordinary opportunity in neuroscience. A
myriad of questions once impossible to consider are now within reach
because of new technologies, an ever-expanding knowledge base, and a
willingness to embrace many disciplines. To take advantage of the
opportunities in neuroscience we need an NIH appropriation that allows
for sustained, reliable and robust growth. That, in turn, will lead to
improved health for the American public and will help maintain American
leadership in science worldwide. Thank you for this opportunity to
testify.
[This statement was submitted by Steven E. Hyman, President,
Society for Neuroscience.]
______
Prepared Statement of the Society for Women's Health Research
The Society for Women's Health Research (SWHR) is pleased to have
the opportunity to submit the following testimony to the Committee
urging a renewed commitment to investment in scientific and medical
research within the Department of Health and Human Services (HHS).
For 25 years, our organization has been widely considered the
thought-leader in promoting research on biological differences in
disease and is dedicated to transforming women's health through
science, advocacy, and education. We believe that an appropriately
funded, robust Federal research agenda, which is committed to
furthering women's health research, is critical for the U.S. to meet
the needs and expectations of its citizens.
SWHR calls on Congress to appropriate funds to our Federal health
and research agencies that meet the needs of American women and men,
and the scientific and medical research community. We ask that the
following agencies and programs be funded for fiscal year 2016 at the
following levels:
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Agency for Healthcare and Research Quality........... $479.3 million
Centers for Disease Control and Prevention........... $7.010 billion
Health Resources Services Administration............. $10.4 billion
National Institutes of Health........................ $32 billion
Substance Abuse and Mental Health Services $3.7 billion
Administration......................................
Office of Research on Women's Health at NIH.......... $42 million
HHS Office of Women's Health......................... $41 million
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replace the bca spending caps and sequestration
There is no question that one of the Federal Government's primary
responsibilities is protecting the public health and investing in basic
biomedical research to spur the way for the next generation of cures
and therapies. Yet the spending caps set under the Budget Control Act
of 2011 and sequestration have resulted in massive cuts to non-defense
discretionary programs (NDD). While reducing the Federal deficit is
important, SWHR remains deeply concerned with the extent of the cuts to
NDD programs, particularly those that impact public health and medical
research agencies. Many of the agencies and programs that fall under
the NDD portion of the Federal budget have sustained cuts dating back
to 2010, before implementation of the BCA or sequestration, and have
consistently been asked to do more with less.
SWHR believes that the BCA spending caps and sequestration should
be replaced with a consistent and balanced approach to deficit
reduction that places equal value on the roles of nondefense programs,
like our Federal health and research agencies, and defense programs in
keeping Americans safe and secure. Efforts to reduce the deficit since
fiscal year 2010 have disproportionately relied on spending cuts and on
NDD programs. In fiscal year 2016, the sequestered spending cap for NDD
is already 17 percent below fiscal year 2010 levels. As a share of our
Nation's economy or GDP, these programs are on track to their lowest
level on record in 1962.
We understand the focus on reducing the Federal deficit; however,
we believe that Congress has a duty to provide the investment necessary
to keep the U.S. the world leaders in biomedical research and fund our
Federal agencies at a level that meet the needs and expectations of its
citizens.
Health and Human Services
Funding levels for those agencies under the umbrella of the
Department of Health and Human Services (HHS) have been significantly
cut over the past several years, resulting in harmful impacts to the
public health and its infrastructure, and scientific and medical
research, which have a direct impact on women and men in every State.
The recent Ebola outbreaks, both internationally and within the U.S.,
demonstrated the importance and necessity of a solid public health
infrastructure in treating and preventing the spread of disease. Years
of cuts to public health and medical research programs have greatly
hindered our Nation's emergency preparedness and response capabilities
at the national, State and local levels.
Arbitrary, across the board spending cuts will ultimately do little
to remedy the U.S. Federal debt. Healthcare spending, by far, is the
largest driver of U.S. Federal debt and is slated to account for nearly
one-fifth of the economy by 2021. This spending is a result of an aging
baby boomer population and chronic diseases that plague our Nation. It
is imperative that Congress invests in our scientific and medical
communities so that cures are accelerated to market, to provide better
treatment to patients, and to study what treatments and delivery
services serve patients best. This type of research will ultimately
save valuable healthcare dollars, which are currently wasted on
inappropriate and ineffective treatments. The President's budget
prioritizes this type of research, and allocates increases for the
Agency for Healthcare and Research Quality (ARHQ) and Health Resources
Services Administration (HRSA). These agencies, often overlooked by the
American public, serve a vital role in evaluating and improving access
to our healthcare system. With millions of Americans newly insured
under the Affordable Care Act, we must ensure that they receive the
best care possible. SWHR urges the Committee to appropriate the
President's request of $479.3 million to AHRQ, and 10.4 billion to
HRSA.
Past investments in medical research have allowed scientists to
begin unraveling the biologic and genetic underpinning of diseases.
This research has shown that biological sex impacts every organ of the
body, and plays an important role in disease susceptibility,
prevalence, time of onset and severity. Sex, gender, racial and ethnic
diseases are evident in all major disease categories, including cancer,
obesity, cardiovascular disease, and Alzheimer's disease. Science has
demonstrated that being biologically female or male impacts drug
absorption, distribution, metabolism and elimination. Congress must
ensure that all research conducted at or through funds provided by our
Federal health agencies is utilized to its maximum benefit, and that
data from this research is analyzed by sex, race, and other subgroup
population demographics so that physicians can begin to tailor
treatments to meet the needs of individual patients.
SWHR was pleased to see that the President's budget request
provided substantial increases to Substance Abuse and Mental Health
Services Administration (SAMHSA) and the Centers for Disease Control
and Prevention (CDC). These two agencies function as safeguards to
protect Americans, and have been chronically underfunded for years.
SWHR supports the President's increase of $44.6 million for SAMHSA,
bringing its fiscal year 2016 total to $3.7 billion, including $103
million for strengthening the mental health crisis system, addressing
prescription drug and opioid abuse, expanding the behavior health
workforce, and fostering tribal behavioral health. We know that there
are many sex and gender difference that impact mental health, and
support this increase for SAMHSA to allow them to work in collaboration
with other agencies to further this type of research.
Similarly, the Centers for Disease Control and Prevention (CDC),
serves as the Nation's first line of defense in protecting Americans
from infectious diseases from Ebola to antibiotic resistance (AR).
Additionally, CDC's Office of Women's Health has vital programs which
increase the use of preventive services for women and children, and
highlight programs relating to tobacco use, prescription drug overdose,
sexually transmitted infections, cancer, cardiovascular disease, and
reproductive health. SWHR supports the President's request of 7.010
billion for fiscal year 2016, and asks that the Office of Women's
Health within CDC receive $600,000 for their work.
We realize that the current budgetary environment limits the amount
of monies available for substantial increases; however, the benefit
from every dollar invested in medical research outweighs the cost many
times over and is, perhaps, the single most cost effective strategy in
reducing our Federal deficit.
Health and Human Services' Offices of Women's Health
The HHS OWH is the government's champion and focal point for
women's health issues. It works to address inequities in research,
healthcare services, and public education gaps, which have historically
placed the health of women at risk. Without OWH's actions, the task of
translating research into practice would be only more difficult and
delayed. Considering the impact of OWH's women's health programs on the
public, we urge Congress to provide an increase of $1 million for this
office, a total of $41 million for fiscal year 2016.
Additionally, each Agency within HHS, has an office or position
that do critical work, both individually and in collaboration with
other offices and Federal agencies, to ensure that women receive the
appropriate care and treatments in a variety of different areas. Under
HHS, the agencies currently with offices, advisors or coordinators for
women's health or women's health research include the AHRQ, CDC, FDA,
HRSA, Indian Health Service (INS), and SAMHSA. In a time of limited
budgetary dollars, Congress should invest in these offices, which have
a proven history of expertise, success, and working collaboratively
with other agencies and offices. SWHR recommends that these offices be
sufficiently funded to ensure that these programs can continue to
provide much needed services to women and their families in fiscal year
2016.
National Institutes of Health (NIH)
The NIH serves as the America's premier medical research agency and
is the largest source of funding for biomedical and behavioral research
in the world. Many of the medical advances in recent decades are direct
results from bipartisan investments in the agency. Unfortunately, years
of austerity spending combined with sequestration has meant that NIH's
overall budget has decreased by approximately 10 percent, and the
rising cost of conducting research has caused the Agency's purchasing
power to decrease by 23 percent.
This number does not just impact NIH's campus in Bethesda,
Maryland; it impacts women and men in every single State. Approximately
85 percent of NIH funding is spent in communities across the country.
NIH funding supports over 400,000 non-Federal scientists and technical
personnel at more than 3,000 universities, medical schools, teaching
hospitals, and research institutions.
A lack of proper investment in medical research also significantly
impacts the next generation of scientists and researchers. As a result
of stagnant Congressional appropriations, NIH grant funding has fallen
to an all-time low of 15 percent. A shrinking number of available
grants put American scientists out of work or forces them to accept
positions abroad resulting in the loss of skilled bench scientists and
researchers to Africa, Asia, and Europe, who continue to heavily invest
in research. Many recent graduates have no choice but to accept
opportunities abroad and mid-career scientists whose funding is not
renewed, meaning that NIH is losing the impact of previous research
investments, as scientists are not allowed to finish projects which has
warranted previous funding.
SWHR recommends that Congress set, at a minimum, a budget of $32
billion for NIH for fiscal year 2016. Further we recommend that NIH's
mandate on the inclusion of women in basic research should be expanded
to include women in all phases of basic, clinical and medical research
and that NIH provide guidance on its new policy to balance the
inclusion of male and female cells and tissues in pre-clinical basic
research.
Office of Research on Women's Health (ORWH)
ORWH is the focal point for coordinating sex differences research
at NIH, and supports innovative interdisciplinary initiatives that
focus on women's health research. ORWH promotes opportunities for, and
support of, recruitment, retention, re-entry and advancement of women
in biomedical careers. The Building Interdisciplinary Research Careers
in Women's Health (BIRCWH) is an innovative, trans-NIH career
development program that pairs junior faculty with senior investigators
in an interdisciplinary mentored environment. Approximately 500
scholars, the majority of them female, have been trained at 39 centers
and produced over 5,000 publications. The Specialized Centers of
Research on sex and gender factors affecting women's health (SCOR) are
designed to integrate basic and clinical approaches to sex and gender
research across scientific disciplines and have resulted in over 650
articles, reviews, abstracts, book chapters and other publications. To
allow ORWH's programs and grants to continue make their impact on the
research community, Congress must direct that NIH continue its support
of ORWH and provide it with a $1 million dollar budget increase,
bringing its fiscal year 2016 total to $41 million.
In conclusion, Mr. Chairman, we thank you and this Committee for
its support for medical and health services research and its commitment
to the health of the Nation. We look forward to continuing to work with
you to build a healthier future for all Americans.
[This statement was submitted by Leslie Ritter, Director of
Government Affairs, Society for Women's Health Research.]
______
Prepared Statement of the Squaxin Island Tribe
On behalf of the Tribal Leadership and citizens of the Squaxin
Island Tribe, I am honored to submit our requests to this Subcommittee
for appropriations to continue the State-Tribal Education Partnership
(STEP) and for Tribal Education Agencies/Departments (TEAs) authorized
in the No Child Left Behind Act of 2002, Title VII, Section 7135 (20
U.S.C. Sec. 7455), and Title X, Section 1140 (25 U.S.C.Sec. 2020 The
development of Tribal infrastructure can also reduce the Federal burden
in the long run.
Department of Education Requests:
_______________________________________________________________________
--$198 million for Title VII (Indian Education Formula Grants) under
No Child Left Behind
--$4 million would be for STEP and TEA
--$2 billion for Title VIII (Impact Aid) under No Child Left Behind
Act
--$25 million for Title I, Part A Local Education Agency Grants
_______________________________________________________________________
The Squaxin Island Tribe Supports the National Congress of American
Indians and the National Indian Education Association.
the squaxin island tribe
The Squaxin Island Tribe has been operating the Northwest Indian
Treatment Center (NWITC) since 1994. Ingenious in creativity, the
center offers a wide variety of cultural activities and traditional/
religious ceremonies, making it a natural place to heal--body, mind and
soul. Fittingly, the center was given the spiritual name ``D3WXbi
Palil'' meaning ``Returning from the Dark, Deep Waters to the Light.''
NWITC is a residential chemical dependency treatment facility designed
to serve American Indians from Tribes located in Oregon, Washington and
Idaho who have chronic relapse patterns related to unresolved grief and
trauma. NWITC is unique in its integration of Tribal cultural values
into a therapeutic environment for co-occurring substance abuse and
mental health disorders. It is a 28 bed, 30-60 day residential
facility.
Title VII (Indian Education Formula Grants)
This 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. Currently, funding for Title VII only reaches 500,000
Native students leaving over 100,000 without supplementary academic and
cultural programs in their schools. As Native students are far behind
their non-Native peers in educational achievement, increased funding is
necessary to address this substantial gap.
STEP and TEA Funding.--AI/AN education is in a state of crisis.
The national dropout rate of AI/AN students is double that of
their non-Indian peers. In some States the high school dropout
rate of AI/AN students is over 50 percent. AI/AN students drop
out of high school at a higher rate and score lower on
achievement tests than any other student group. AI/AN 8th grade
students are 18 percent more likely to read or perform in
mathematics at a ``below basic'' level than their non-Indian
peers. AI/AN students also have the highest rates of
absenteeism, suspension, and expulsion.
Congress recognized the dire need to change the AI/AN education
policy in 2012, when for the first time in history, Congress
appropriated funding for TEAs in the Department of Education.
The funding was used to support the STEP Program, in which
Tribes and States through cooperative agreements combine
resources to implement ESEA programs in public schools located
on Indian reservations. Four Tribal-State partnerships were
awarded STEP program grants to co-govern education. These
projects support the type of Tribal-State-Federal partnerships
Indian educators and Tribal leaders have long called for as a
means to improve AI/AN education. The Department of Interior
made a similar appropriation for the first time in fiscal year
2015, which has a priority for Tribes with Bureau of Indian
Education schools. The funding will be used to expand the
infrastructure of TEAs and to implement programs resembling
STEP. These programs, working in concert, are crucially
important to addressing the systemic problems in AI/AN
education.
TEAs are in a unique position to halt and reverse the negative
trend. TEAs will use funding to support more early education
initiatives that many TEAs can provide, support more work in
the area of Tribal-State education cooperative agreements, and
to increase the role of TEAs in schools serving AI/AN students.
Further, this funding will assist TEAs to become more self-
sufficient by providing the means to develop or amend their
education codes. Developing and strengthening TEAs lessen the
burden on Federal appropriations in the future. This would
begin to implement the policy of self-determination in American
Indian education and further the United States' trust
responsibility to AI/AN students.
TEAs will also coordinate education programs; develop and enforce
tribal education codes, policies, and standards; develop
culturally relevant curriculum and assessments; and, provide
support services and technical assistance to schools and
education programs on Indian reservations. This would include
maintaining and sharing electronic data regarding AI/AN
students, coordinate Federal education programs with schools
and States, and institute programs to increase graduation rates
and post-secondary school readiness.
Investment in TEAs is sound Federal policy. TEAs have already
proven that they are capable of improving AI/AN student
outcomes.
Support $2 billion for Impact Aid, Title VIII funding under the No
Child Left Behind Act Impact Aid
With nearly 93 percent of Native students enrolled in public
schools, Impact Aid provides essential funding for schools serving
Native students. In fiscal year 2013, Impact Aid was cut by
approximately $100 million dollars by sequestration from the fiscal
year 2012 level of $1.1 billion, which forced school closures and
school consolidation across many Native communities. In order to ensure
Native students have access to education, Impact Aid must be fully
funded at $2 billion.
$25 Million for Title I, Part A Local Education Agency Grants
Title I of the Elementary and Secondary Education Act (ESEA)
provides critical financial assistance to local education 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.
Self-Governance--An Efficient and Effective Use of Indian Self-
Determination and Education Assistance Funds (ISDEAA)
Self-Governance is the most successful policy in the history of
Tribal--Federal relations and it inspires efficient and effective
government spending. Through Self-Governance, Tribes are empowered, as
sovereign nations, to exercise self-determination, redesign and
reprogram funds. Within the statute, and provide services that are
responsive to the needs of our communities and Tribal citizens.
The Tribal Self-Governance authority in 1988 excluded the Tribally
Controlled Community College Assistance Act (Public Law 95-471 ) for
elementary and secondary schools under the Indian School Equalization
Formula pursuant to Title XI of the Education Amendments of 1978
(Public Law 95-561, as amended). We have always felt this was a
hindrance for our people if we were to indeed achieve the full breadth
of governing at the local level which included retaining our cultural
and traditional languages and communication skills.
Tribal leaders and Tribal education agencies understand our
children best and can more efficiently and effectively address our
students' unique cultural and educational needs. Investment in Tribal
Education Agencies is sound Federal policy. TEA have already proven
that they are capable of improving American Indian and Alaska Native
student outcomes through the recent STEP Grant and the Administration's
acknowledgment, through Sovereignty in Education Grant, that TEA
improve education.
We request that this Committee recognizes the success of Self-
Governance and encourage all branches of the Federal Government to work
with Tribes to make the most efficient and effective use of Federal
appropriations for Tribal programs.
Thank you for this opportunity to submit written testimony.
[This statement was submitted by Councilman Jim Peters, Squaxin
Island Tribe.]
______
Prepared Statement of Dwight Stacho
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Rebecca Stacho
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Laureen Stengler
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Bonnie M. Sullivan
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
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 comments in support of critical HIV/
AIDS and hepatitis programs as part of the fiscal year 2016 Labor,
Health and Human Services, Education, and Related Agencies
appropriation measure. We thank you for supporting these programs over
the years, and hope you will do your best to adequately fund them in
the future in order to provide for and protect the health of many
Americans.
CDC Viral Hepatitis Prevention
Before detailing our HIV requests, we would like to highlight the
critical importance of doubling funding for viral hepatitis at the CDC.
The CDC estimates that 5.3 million people are living with hepatitis B
and/or hepatitis C in the U.S., with as many as 75 percent unaware of
their infection. With new treatment options available that lead to a
cure, now is the time to increase hepatitis testing, surveillance and
education programs. The President's proposal of $62.8 million for the
CDC Division of Viral Hepatitis has the potential to reduce viral
hepatitis transmission and prevent costly viral hepatitis-related
illness and death. We urge you to support it.
HIV/AIDS Programs
HIV/AIDS remains one of the world's worst health pandemics.
According to the CDC, in the U.S. over 658,000 people have died of AIDS
and there are 50,000 new infections each year. A record 1.2 million
people in the U.S. are living with HIV. Persons of minority races and
ethnicities are disproportionately affected. African Americans, who
make up just 12 percent of the population, account for 44 percent of
new infections. HIV/AIDS disproportionately affects low income people;
nearly 90 percent of Ryan White Program clients have a household income
of less than 200 percent of the Federal Poverty Level.
The U.S. Government has played a leading role in fighting HIV/AIDS,
both here and abroad. The vast majority of the discretionary programs
supporting domestic HIV/AIDS efforts are funded through this
Subcommittee. We are keenly aware of current budget constraints and
competing interests for limited dollars, but programs that prevent and
treat HIV are inherently in the Federal interest as they protect the
public health against a highly infectious virus. If left unaddressed,
it will certainly lead to increased infections, more deaths, and higher
health costs.
With the advent of antiretroviral medicines, HIV has turned from a
near certain death sentence to a treatable chronic disease if people
have access to consistent and affordable healthcare and medications.
Through prevention, care and treatment, and research we now have the
ability to actually end AIDS. HIV treatment not only saves the lives of
people with HIV, but also reduces HIV transmission by more than 96
percent. Therefore, HIV treatment is also HIV prevention. In order to
realize these benefits, people with HIV must be diagnosed through
testing, and linked to and retained in care and treatment.
The National HIV/AIDS Strategy sets clear goals and priorities, and
brings the Federal agencies addressing HIV together to ensure resources
are well coordinated.
The Ryan White Program
The Ryan White HIV/AIDS Program provides some level of medical
care, drug treatment, and support services to approximately 536,000
low-income, uninsured, and underinsured individuals with HIV/AIDS. With
people living longer and continued new diagnoses, the demands on the
program continue to grow and many needs remain unmet. According to the
CDC, only 40 percent of people living with HIV in the U.S. are retained
in HIV care, 37 percent have been prescribed antiretroviral treatment,
and 30 percent are virally suppressed. We have a long way to go before
we can realize the dream of an AIDS-free generation. With continued
funding we can improve these numbers and health outcomes.
The AIDS Drug Assistance Program (ADAP), one component of the Ryan
White Program, provides States with funds to pay for medications for
over 200,000 people. While ADAPs continue to provide medications to
Ryan White clients to keep them healthy, an increased amount of ADAP
funding is being used to help low income enrollees afford insurance
premiums, deductibles, and high cost-sharing related to the cost of
their HIV medications. This is a cost-effective measure for ADAPs
because patients not only can receive their HIV medications from the
marketplace plans, but also full healthcare coverage.
We urge you to ensure that ADAP and the rest of the Ryan White
Program receive adequate funding to keep up with the growing demand.
With this increased demand for medications comes a corresponding
increase in medical care and support services provided by all other
parts of the program.
As the Affordable Care Act (ACA) is implemented, there are expanded
opportunities for healthcare coverage for some Ryan White clients.
While the ACA will result in some cost shifting for medications and
primary care, it will never be a substitute for the Ryan White Program.
Over 70 percent of Ryan White Program clients today have some sort of
insurance coverage, mostly through traditional Medicaid and Medicare.
Their coverage is not changing with health reform; the Ryan White
Program will be needed as it is today.
Under the ACA, benefits differ from State to State as not all
States are choosing to expand Medicaid, and there are many gaps being
filled by the Ryan White Program. Plans do not offer all of the
comprehensive essential support services, such as case management,
transportation, and nutritional services, that are needed to ensure
retention in medical care and adherence to medications. This approach
of coordinated, comprehensive, and culturally competent care leads to
better health outcomes. In fact, 73 percent of those in the Ryan White
Program are virally suppressed. Therefore, the Ryan White Program,
while it may need to change in the future, must continue and must be
adequately funded.
The AIDS Institute urges the Committee to reject the President's
budget proposal to eliminate dedicated funding for Part D of the Ryan
White Program and transfer it to Part C. Part D serves women, infants,
children, and youth with HIV/AIDS and is a well-established system of
care that has worked since 1988 in nearly eliminating mother to child
transmission and providing medical care and family-centered support
that helps ensure these vulnerable populations remain in care and
adherent to their medications. While changes to the structure of the
Ryan White Program might be needed in the future, it should not be done
through the appropriations process and must include community input.
CDC HIV Prevention
As a Nation, we must do more to prevent new infections, but we only
allocate 3 percent of our HIV/AIDS spending towards prevention. Care
and treatment costs could be eliminated if we did not have new
infections. Preventing just one infection would save an estimated
$300,000 in future lifetime medical costs. Preventing all the new
50,000 cases in just 1 year would translate into an astounding $15
billion saved in lifetime medical costs.
With more people living with HIV than ever before, there are
greater chances of HIV transmission. The CDC and its grantees have been
doing their best with limited resources to keep the number of
infections stable, but that is not good enough. It is focusing
resources on those populations and communities most impacted by HIV and
investing in those programs that will prevent the most number of
infections. One group in particular that needs additional study and
resources is young black gay men, who account for 53 percent of all new
HIV infections in the black community.
With over 165,000 people living with HIV in the U.S. who are
unaware of their infection, the CDC is also focused on increased HIV
testing programs. Testing people early allows them to be diagnosed and
referred to care and treatment earlier, which is critical to bettering
individual health outcomes and preventing new infections.
The CDC estimates that in 2010, 26 percent of all new HIV
infections occurred among youth ages 13 to 24. Nearly 75 percent of
those infections were among young gay men. Clearly, we must do a better
job of educating the youth, including gay youth, about HIV. Increasing
funding to the HIV Division of Adolescent and School Health (DASH) will
help address this need.
HIV/AIDS Research at the National Institutes of Health (NIH)
While we have made great strides, there is still a long way to go.
Continued research at the NIH is necessary to learn more about the
disease and to develop new treatments and prevention tools. Work
continues on vaccine research and we look forward to an eventual cure.
Again, we thank you for your continued support of these programs.
We have made great progress, but we are still far from achieving zero
new HIV infections, an AIDS-free generation and eradicating viral
hepatitis. We now have the tools, but we need continued leadership and
the necessary resources to realize our goals. Thank you.
[This statement was submitted by Carl Schmid, Deputy Executive
Director, The AIDS Institute.]
______
Prepared Statement of The Humane Society of the United States and the
Humane Society Legislative Fund
On behalf of The Humane Society of the United States (HSUS) and the
Humane Society Legislative Fund (HSLF), we appreciate the opportunity
to provide testimony on our top NIH funding priorities for the Senate
Labor, Health and Human Services, Education and Related Agencies
Appropriations Subcommittee in fiscal year 2016.
retirement of federally owned chimpanzees
The HSUS and HSLF request that the committee ask for information
and updates from NIH on their progress towards retiring all but 50 of
the government-owned chimpanzees from laboratories--a plan they
announced in June of 2013 which will not only result in a better life
for the chimpanzees but will also save taxpayer dollars. Further, we
request that the committee push for the prioritization for retirement
of the 20 government-owned chimpanzees at the Texas Biomedical Research
Institute because of major concerns about the welfare of animals at the
facility and the health and age of the chimpanzees housed there.
Further basis of our request can be found below.
Slow Progress on Chimpanzee Retirement
In June of 2013, the National Institutes of Health announced their
plan to retire all but 50 government-owned chimpanzees to sanctuary,
significantly curtail the use of chimpanzees in NIH funded studies and
not revitalize breeding of chimpanzees for research. These decisions
resulted from an Institute of Medicine study in 2011 which found that
chimpanzees are not necessary for the vast majority of research.
Not including the 110 government-owned chimpanzees at the New
Iberia Research Center who were already about halfway through the
process of being transferred to sanctuary, approximately 360
government-owned chimpanzees remained in laboratories at the time of
NIH's announcement--310 of whom should be slated for retirement to
sanctuary per NIH's plan. However, according to a recent CNN news
report, out of the 360 chimpanzees, only 6 have been retired to
sanctuary thus far, and more than 20 have died in laboratories.
Further, an NIH spokesperson noted the selection of the 50 chimpanzees
could take ``several years'' and that it would happen before retiring
more chimpanzees. It is unclear why it would take so long to choose the
50. Based on their timeline for protocol review, NIH should now have a
good idea of what research (if any) this group of chimpanzees may be
used for. It has been nearly 2 years since the plan was announced and
we and other members of the public are becoming increasingly frustrated
with the slow pace of progress on this issue.
Sanctuaries are More Humane and Less Expensive Than Laboratories
Accredited sanctuaries provide the highest welfare standards for
chimps at a lower cost to taxpayers than housing chimpanzees in barren
labs (see chart below). It is estimated that transferring those
government-owned chimpanzees slated for retirement from the
laboratories where they are currently housed to the national sanctuary
would save taxpayers approximately $2.2 million per year in care and
maintenance costs.
At Chimp Haven, the National Chimpanzee Sanctuary, chimpanzees are
the sole focus of the facility and its staff. There, chimpanzees
receive the very best care possible, including access to expansive
outdoor habitats, large social groups and regular and varying
enrichment. Conversely, the main mission of biomedical research
laboratories is to conduct research and these facilities are often
bound by limitations (i.e., mission, space, and research
considerations). Thus, the laboratory environment suits the needs of
researchers and not the animals. Laboratories simply cannot offer the
high quality of care that sanctuaries do.
Current Estimated Costs Related to Care and Maintenance of Government
Owned Chimpanzees:
GOVERNMENT OWNED CHIMPANZEES IN RESEARCH FACILITIES AND RESEARCH RESERVE
FACILITIES
------------------------------------------------------------------------
NIH cost,
Number of millions in NIH cost, $/
Facility chimpanzees dollars/ chimpanzee/day
year
------------------------------------------------------------------------
Keeling Center for Comparative \1\ 156 \2\ 2.56 44.97
Medicine and Research........
Texas Biomedical Research \1\ 20 \2\ 0.56 76.5
Institute, U42 grant \3\.....
Alamogordo Primate Facility... \1\ 154 \1\ 4.09 60.36
Totals.................... 330 7.21 Average: 60.61
------------------------------------------------------------------------
\1\ Based on information available on the NIH Web site regarding
chimpanzee maintenance costs.
\2\ Based on data available in NIH Research Portfolio Online Reporting
Tools (RePORT).
\3\ In addition to this grant, NIH also supports an additional 85
chimpanzees at the facility. These chimpanzees are owned by the
laboratory and are not eligible for government funded retirement to
sanctuary under the Chimpanzee Health Improvement Maintenance and
Protection Act.
GOVERNMENT OWNED CHIMPANZEES IN SANCTUARY
------------------------------------------------------------------------
NIH cost,
Number of millions in NIH cost, $/
Facility chimpanzees dollars/ animal/day
year
------------------------------------------------------------------------
Chimp Haven................... \1\ 191 \1\ 2.73 39.23
------------------------------------------------------------------------
\1\ Based on information available on the NIH Web site regarding
chimpanzee maintenance costs.
Government Owned Chimpanzees at Texas Biomedical Research Institute
There are currently 20 government owned chimpanzees at the Texas
Biomedical Research Institute (TBRI). Most of these chimpanzees are
elderly and have been infected with HIV, hepatitis C and/or hepatitis B
and have been through countless invasive experimental procedures
throughout their lives. These chimpanzees are clear candidates for
retirement. Further, the U.S. Department of Agriculture has cited TBRI
multiple times over the past few years for violations of the Animal
Welfare Act that have resulted in death of five nonhuman primates,
among other serious issues. The facility was cited for AWA violations
as recently as February 2015 and the USDA is currently investigating
the facility.
Given the age, history and health of these chimpanzees, the serious
animal welfare concerns and the high cost of maintaining the
chimpanzees at TBRI, we ask the committee to urge NIH to prioritize
these 20 chimpanzees for retirement to Chimp Haven.
We respectfully request the following committee report language,
which is supported by The HSUS and HSLF:
The committee is aware of and commends NIH's stated commitment to
retiring the vast majority of government owned chimpanzees to
sanctuary, as it will provide these chimpanzees with the high
quality care they deserve and save taxpayer dollars. However,
the committee notes that the progress of chimpanzee retirement
since the 2013 decision has been slow. It has been reported
that since the announcement only 6 of the 360 government owned
chimpanzees in labs have been retired and more than 20 have
died in labs. The committee asks that NIH provide an update on
the status of the process for determining whether chimpanzees
will be retired or kept in the reserve colony of 50 and provide
the committee with a list of government-owned chimpanzees that
includes name, ID number, location, date of birth, sex and any
designations made thus far regarding retirement or reserve
colony for each individual. Please also provide any updates to
the committee on whether or how many research projects using
chimpanzees have been approved by NIH and/or the NIH's
Chimpanzee Research Use Panel thus far. Finally, the committee
has concerns about the welfare of the 20 government-owned
chimpanzees at the Texas Biomedical Research Institute. This
lab has been cited for numerous violations of the Animal
Welfare Act in recent years. Further, many of these chimpanzees
are elderly and infected with hepatitis and/or HIV. Given these
issues and the high cost to maintain them in this laboratory,
the committee requests that NIH prioritize their retirement to
sanctuary.
We appreciate the opportunity to share our views on the Labor,
Health and Human Services, Education and Related Agencies
Appropriations Act for fiscal year 2016. We hope the Committee will be
able to accommodate this request. Thank you for your consideration.
the national center for advancing translational sciences
The National Center for Advancing Translational Sciences (NCATS) is
one of 27 Institutes and Centers (ICs) at the National Institutes of
Health (NIH). Established to transform and accelerate the translational
research process, NCATS is all about getting more treatments to more
patients more quickly. The Center complements other NIH ICs, the
private sector and the nonprofit community; rather than concentrating
on specific diseases, NCATS focuses on what is common among them.
Translation is the process of turning observations in the
laboratory, clinic and community into interventions that improve the
health of individuals and the public--from diagnostics and therapeutics
to medical procedures and behavioral changes.
Translational science is the field of investigation focused on
understanding the scientific and operational principles underlying each
step of the translational process.
Bridging the Gap
Several thousand genetic diseases affect humans, of which only
about 500 have any treatment. A novel drug, device or other
intervention can take about 14 years and cost $2 billion or more to
develop, and about 95 percent never make it past clinical trials. Even
when a new drug or other intervention is developed and shown to be
effective in clinical trials, many years may pass before all patients
who could benefit from it are identified and treated.
Here are some areas the animal protection community and industry
have supported:
--Tissue Chip for Drug Screening (Tissue Chip) initiative. This
partnership with the Defense Advanced Research Projects Agency
and the Food and Drug Administration (FDA) is designed to
develop 3-D human tissue chips that model the structure and
function of human organs, such as the lung, liver and heart,
and then combine these chips into an integrated system that can
mimic complex functions of the human body.
--Toxicology in the 21st Century (Tox21) initiative. Tox21 is a
collaborative effort among NIH--including NCATS and the
National Toxicology Program at the National Institute of
Environmental Health Sciences--the Environmental Protection
Agency and the FDA. Through Tox21, researchers are testing
10,000 drugs and environmental chemicals for their potential to
affect molecules and cells in ways that can cause health
problems. The compounds undergo testing in NCATS' high-speed
robotic screening system.
We respectfully request the Subcommittee fund NCATS at the
President's budget level which is $27,000,000 over the fiscal year 2015
request.
______
Prepared Statement of The Marfan Foundation
Chairman Blunt 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 2016 L-HHS Appropriations Bill.
about marfan syndrome and heritable connective tissue disorders
Marfan Syndrome
Marfan syndrome is a genetic disorder that affects the body's
connective tissue. Connective tissue holds all the body's cells, organs
and tissue together. It also plays an important role in helping the
body grow and develop properly.
Connective tissue is made up of proteins. The protein that plays a
role in Marfan syndrome is called fibrillin-1. Marfan syndrome is
caused by a defect (or mutation) in the gene that tells the body how to
make fibrillin-1. This mutation results in an increase in a protein
called transforming growth factor beta, or TGF-b. The increase in TGF-b
causes problems in connective tissues throughout the body, which in
turn creates the features and medical problems associated with Marfan
syndrome and some related disorders.
Because connective tissue is found throughout the body, Marfan
syndrome can affect many different parts of the body, as well. Features
of the disorder are most often found in the heart, blood vessels,
bones, joints, and eyes. Some Marfan features--for example, aortic
enlargement (expansion of the main blood vessel that carries blood away
from the heart to the rest of the body)--can be life-threatening. The
lungs, skin and nervous system may also be affected. Marfan syndrome
does not affect intelligence.
Related Conditions
There are disorders related to Marfan syndrome that can cause
people to struggle with some of the same or similar physical problems.
Some examples are Loeys-Dietz syndrome, Ehlers-Danlos syndrome, and
Familial Thoracic Aortic Aneurysm and Dissection.
Disorders related to Marfan syndrome can also cut lives short,
particularly when they go unchecked, and they can deeply affect the
quality of life of the individuals and families who must cope with
them. Just like people with Marfan syndrome, those affected by related
disorders need early and accurate diagnosis to ensure they receive
proper care and treatment.
Many of these disorders are genetic conditions that, like Marfan
syndrome, cause the aorta (the main blood vessel that carries blood
from the heart to the rest of the body) to enlarge, a problem that
requires medicine and regular monitoring to determine appropriate
treatment. Other features that may overlap with Marfan syndrome include
those involving the heart, bones, joints and eyes. Related connective
tissue disorders include:
--Loeys-Dietz Syndrome
--Ehlers-Danlos Syndrome
--Familial Thoracic Aortic Aneurysm and Dissection
--Mass Phenotype
--Ectopia Lentis Syndrome
--Beals Syndrome
--Bicuspid Aortic Valve
--Stickler Syndrome
--Shprintzen-Goldberg Syndrome
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.
one family's story
Hector Roman was 36 years old when he died on June 25, 2012, of an
aortic dissection caused by Marfan syndrome. He was never diagnosed
with Marfan syndrome--despite being treated by several medical
specialists for myriad health issues--and he did not know he was a risk
of a sudden early death. He was in pain for days and didn't rush to the
hospital because he was frustrated with the lack of help he was getting
with his health concerns. He had no idea this delay would be deadly.
After a few days in pain, he went into shock and a friend call 911. He
died 3 days later during his third surgery.
Now, his partner, Teresita Mompeller, of Phoenix, AZ, is raising
their three boys--Jovan, 5, Joel, 3, and Justus, 2--alone. After Hector
died, Teresita learned about Marfan syndrome. Most alarming to her was
that affected people have a 50 percent chance of passing it to their
offspring. She had her sons checked immediately. Joel and Justus have
been diagnosed with Marfan syndrome and already have aortic
enlargement. While their condition is the same as their dad; their
prognosis is better. The boys can live a normal life span because they
have the diagnosis and are being monitored. They can avoid a fatal
situation because they know.
Teresita, who has a Facebook page called ``Do You Know Marfan?''
(and a parallel page in Spanish) recently wrote: ``Thanks to the work
of The Marfan Foundation, I know that my boys have a greater chance of
living a long life. I know first-hand what it is to be a mother with
many questions and concerns about a rare disorder that nobody seemed to
know anything about. The Marfan Foundation has guided me through all of
my concerns. They have given me all the support and information needed
to advocate for my children [so they receive] proper treatment. The
Foundation has given me and thousands of other people, the peace of
mind that they are working hard to better the lives of those
affected.''
sequestration
We have heard from the medical research community that
sequestration and deficit reduction activities have created serious
issues for Federal funding opportunities and the career development
pipeline. In order to ensure that research into heritable connective
tissue disorders can continue to move forward, and, more importantly,
to ensure that our country is adequately preparing the next generation
of young investigators, we urge you to avert, mitigate, or otherwise
eliminate the specter of sequestration. While the Foundation has
anecdotal accounts of the harms of sequestration, the Federated
American Societies for Experimental Biology has reported:
--In constant dollars (adjusted for inflation), the NIH budget in
fiscal year 2013 was $6 billion (22.4 percent) less than it was
in fiscal year 2003.
--The number of competing research project grants (RPGs) awarded by
NIH has also fallen sharply since fiscal year 2003. In fiscal
year 2013, NIH made 8,283 RPG awards, which is 2,110 (20.3
percent) fewer than in fiscal year 2003.
--Awards for R01-equivalent grants, the primary mechanism for
supporting investigator-initiated research, suffered even
greater losses. The number awarded fell by 2,528 (34 percent)
between fiscal year 2003 and fiscal year 2013.
The pay line for some NIH funding mechanisms has fallen from 18
percent to 10 percent while the average age for a researcher to receive
their first NIH-funded grant has climbed to 42. These are strong
disincentives to choosing a career as a medical researcher. Our
scaling-back is occurring at a time when many foreign countries are
investing heavily in their biotechnology sectors. China alone plans to
dedicate $300 million to medical research over the next 5 years; this
amount is double the current NIH budget over the same period of time.
Scientific breakthroughs will continue, but America may not benefit
from the return-on-investment of a robust biotechnology sector. For the
purposes of economic and national security, as well as public health,
the Foundation asks that you work with your colleagues to eliminate
sequestration and recommit to supporting this Nation's biomedical
research enterprise.
centers for disease control and prevention
People with Marfan syndrome are born with it, but features of the
disorder are not always present right away. Some people have a lot of
Marfan features at birth or as young children--including serious
conditions like aortic enlargement. Others have fewer features when
they are young and don't develop aortic enlargement or other signs of
Marfan syndrome until they are adults. Some features of Marfan
syndrome, like those affecting the heart and blood vessels, bones or
joints, can get worse over time.
This makes it very important for people with Marfan syndrome and
related disorders to receive accurate, early diagnosis and treatment.
Without it, they can be at risk for potentially life-threatening
complications. The earlier some treatments are started, the better the
outcomes are likely to be.
Knowing the signs of Marfan syndrome can save lives. Our community
of experts estimates that nearly half the people who have Marfan
syndrome don't know it. CDC and NCBDDD have critical programs that can
help improve awareness and recognition of warning signs, which can save
lives. Some of these programs include CDC's Million Hearts Campaign and
NCBDDD's newborn screening activities.
Additionally, we support the establishment of a new sports
screening program to fund awareness in high schools around the country
and prevent Marfan syndrome-related thoracic aortic aneurysm and
dissection, which claims the lives of young athletes across the country
each year. A contemporary example of this need is Isaiah Austin, who
was diagnosed with Marfan syndrome just 5 days before he was supposed
to take part in the NBA Draft. Had it not been for the intense testing
each potential draftee undergoes as part of the process, Isaiah may
never have been diagnosed. He story might have ended by him collapsing
on national television or years before while he was playing basketball
in college. He is a prime example that more needs to be done.
Meaningful funding increases will allow CDC to establish this new
activity.
national institutes of health
NIH has 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.
NHLBI
After 4 years of recruitment and 3 years of follow-up evaluations
the results of the first-ever multicenter clinical trial for our
patient population conducted by the National Heart, Lung and Blood
Institute's Pediatric Heart Network (PHN), were released at the
November 2014 meeting of the American Heart Association. Patients, age
6 months to 25 years, were randomized onto either losartan or atenolol
(a beta blocker that is the current standard of care for Marfan
patients with an enlarged aortic root). The study found that there were
no significant difference in the rate of aortic root dilatation between
the two treatment groups over a 3-year period; in lay terms this means
the study found another viable treatment for our patients. The Marfan
Foundation thanks both NHLBI and NIAMS for their dedicated support and
careful execution of this trial.
NEI
Ectopia lentis, dislocation of the lens, occurs in up to 60 percent
of patients with Marfan syndrome. The central positioning of the lens
depends on the zonule of Zinn, a fibrous structure which has fibrillin-
1 as a major component. NEI-supported investigators are studying the
protein interactions of fibrillin-1 in health and disease in the zonule
of Zinn to understand the disease mechanisms that cause ectopia lentis.
It is hoped that this research will provide therapeutic insights to
better treat this complication of Marfan syndrome.
NIAMS
NIAMS continues to support the Consortium for Translational
Research in Marfan Syndrome, which is investigating the disease process
in MFS. These studies, building on previous advances, are aimed at
identifying new biological targets for therapy, as well as predictive
biomarkers of vascular and skeletal manifestations, which are the major
causes of mortality and morbidity in MFS.
ORDR
The National Center for Advancing Translational Sciences houses
ORDR and leads other important activities. In addition to the Rare
Disease Clinical Research Consortia, translational treatment
development programs hold promise for the heritable connective tissue
disorders community.
______
Prepared Statement of The Sturge-Weber Foundation
Chairman Cole and distinguished members of the Subcommittee, thank
you for your time and your consideration of the priorities of the
community of individuals impacted by Sturge-Weber syndrome, Kippel
Trenaunay, and Port Wine Birthmarks as you work to craft the fiscal
year 2016 L-HHS Appropriations Bill.
about sturge-weber syndrome and related conditions
Sturge-Weber syndrome (encephelotrigeminal angiomatosis) is a
congenital, non-familial disorder of unknown incidence and cause. It is
characterized by a congenital facial birthmark (``Port Wine
Birthmark'') and neurological abnormalities; neurological concerns
relate to the development of excessive blood vessel growth on the
surface of the brain (angiomas). These angiomas can cause life-long
seizures, a weakening or loss of the use of one side of the body
(hemiparesis), as well as delay the development of motor and cognitive
skills.
about the foundation
The Sturge-Weber Foundation is a 501c3 incorporated in 1987 by
individuals affected by Sturge-Weber syndrome, Kippel Trenaunay, and
Port Wine Birthmarks. Our mission is to improve the quality of life and
care for people with Sturge-Weber syndrome and associated Port Wine
Birthmark conditions through collaborative education, advocacy,
research and friendly support. The Foundation and our nationwide
network of dedicated volunteers continuously work to advance research,
raise awareness, and provide empowerment.
The Vision of the Sturge-Weber Foundation is that in all areas of
life--public, professional, personal--these goals will be achievable
for our members.
In Awareness--when the public will be able to see past the
disability to the person.
In Empowerment--when families and individuals will be able to
obtain the medical care, employment, education, respect and personal
achievement they seek
In Research--when the pace of discovery will not be hampered by
lack of resources and will lead continually toward a cure and advances
in treatment.
one patient's story
This is the first thing I've written in 3 years, except for
graduate school papers and my thesis which don't really seem to count.
It's not that I don't write. I just haven't had the courage to write
since experiencing a psychotic break in 2011. This ``break'' was the
culmination of clinical depression that was untreated because of
insurance, an eye surgery to treat my glaucoma, 3 months of bed rest
after my doctors took too much tissue out during the surgery, and the
inability to see because the surgery was on my dominant eye. I've had
great challenges in my life. I've been fighting for a quality life
since I was born with Sturge-Weber Syndrome. My life long struggle to
fight vision loss, depression, ostritization from my peers in school,
and the supposition I would never have more function than a steamed
vegetable has made me a fighter, but with every fighter there comes a
breaking point. Mine just came the winter of 2011.
As an individual, and an advocate, with Sturge-Weber Syndrome I
have fought with tenacity to provide hope for families and ``patients''
alike while providing education to doctors, news broadcasts, and even
testify before Congress at age 13. Life isn't all bad all the time.
I've been like almost every college student in America. I went away, I
lived with roommates, and I've gone out to bars. After graduating in
2009, I too experienced the struggle of not being able to find a job in
my field. I'm one of the graduates still living at home and not working
to my full potential. Where I differ from the other millennials like
myself is I have medical bills, co-pays, and medicine to pay for on a
monthly basis. There are perhaps very few 28 year olds in the world
that have to figure out how to pay a $2,000 deductable prior to
receiving treatment for a port-wine stain which left untreated will
lead to a more protruded and darker colored birthmark. Leaving it
untreated would only further marginalize me. I have enough trouble
finding a date as I am and there is no way I want to further allow
myself to become a dog lady by not taking care of my health. Still the
matter remains, how does one pay her 2,000 deductable for treatment
when she only makes 25,000 before taxes?
There are days I have longed to be youthful and never worry about
where the money for the next MRI will come from. I'd love to be one of
those people that never need to go to the emergency room because of the
migraines and ischemic strokes caused by the port-wine stain on my
brain. I would SINCERELY love to have the non-functioning half of my
brain back. Despite all the wishes, wants and dreams, I know I am
blessed. Most people don't get to meet Congressmen and Julianne Moore,
or be told they are an inspiration of courage and bravery by a favorite
band. Granted, it's not winning the Betty Ford Award, like my mom when
I was a baby, but through the years you learn to take each day with
grace. That is until some 6 year old says ``Eww! Mommy look at the
pig!'' That's that time when grace is challenging, but what makes
medical research funding and education SO important!
sequestration
We have heard from the medical research community that
sequestration and deficit reduction activities have created serious
issues for Federal funding opportunities and the career development
pipeline. In order to ensure that research into Sturge-Weber syndrome
and related conditions can continue to move forward, and, more
importantly, to ensure that our country is adequately preparing the
next generation of young investigators, we urge you to avert, mitigate,
or otherwise eliminate the specter of sequestration. While the
Foundation has anecdotal accounts of the harms of sequestration, the
Federated American Societies for Experimental Biology has reported:
--In constant dollars (adjusted for inflation), the NIH budget in
fiscal year 2013 was $6 billion (22.4 percent) less than it was
in fiscal year 2003.
--The number of competing research project grants (RPGs) awarded by
NIH has also fallen sharply since fiscal year 2003. In fiscal
year 2013, NIH made 8,283 RPG awards, which is 2,110 (20.3
percent) fewer than in fiscal year 2003.
--Awards for R01-equivalent grants, the primary mechanism for
supporting investigator-initiated research, suffered even
greater losses. The number awarded fell by 2,528 (34 percent)
between fiscal year 2003 and fiscal year 2013.
The pay line for some NIH funding mechanisms has fallen from 18
percent to 10 percent while the average age for a researcher to receive
their first NIH-funded grant has climbed to 42. These are strong
disincentives to choosing a career as a medical researcher. Our
scaling-back is occurring at a time when many foreign countries are
investing heavily in their biotechnology sectors. China alone plans to
dedicate $300 million to medical research over the next 5 years; this
amount is double the current NIH budget over the same period of time.
Scientific breakthroughs will continue, but America may not benefit
from the return-on-investment of a robust biotechnology sector. For the
purposes of economic and national security, as well as public health,
the Foundation asks that you work with your colleagues to eliminate
sequestration and recommit to supporting this Nation's biomedical
research enterprise.
centers for disease control and prevention
Recently it was discovered that Sturge-Weber syndrome occurs due to
somatic mutation (a genetic mutation that occurs after conception). In
this regard, the research being done at the Centers for Birth Defects
Research and Prevention (CBDRP) at the NCBDDD is incredibly important
to our community. Specifically, the National Birth Defects Prevention
Study (NBDPS) and the Birth Defects Study to Evaluate Pregnancy
exposureS (BD-STEPS) are important steps into research that identify
what causes birth defects and how to prevent them. NCBDDD and CDC as a
whole need proportional and meaningful increases in their budget in
order to continue the important research in this field.
national institutes of health
The Office of Rare Diseases Research (ORDR) housed at NCATS hosts a
small research portfolio focused on Sturge-Weber syndrome 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. Such programs as the Brain Vascular
Malformations Consortium (BVMC) within the Rare Diseases Clinical
Research Network (RDCRN) are incredibly important because they fund
Sturge-Weber syndrome specific research. However, these continued
advancements can only be made with stable increases in the overall NIH
budget.
Additionally, Sturge-Weber syndrome falls under NEI, NIMH, NCI,
NHLBI, NIAMS, and NINDS disciplines. In this regard, it is important to
promote Sturge-Weber portfolios at these Institutes as cross-cutting
information sharing is paramount in continuing the advancements in this
field. In order to accomplish this goal increases in each institutions
budgets are required.
Thank you for your time and your consideration of the community's
request.
______
Prepared Statement of William G. Toperzer
I, William G. Toperzer, am the brother of Carol C. Toperzer a 69
year old profoundly mentally and physically disabled female. Carol has
been a resident of the Hamburg Center, Hamburg, PA for 53 years--
essentially her whole life--after being cared for at home by our now
deceased mother, without assistance, up until age 16. Carol has never
spoken, walked, or performed of any of her personal care and personal
hygiene needs. She is fully dependent on others for all of her life
needs. She is frail with essentially no muscle tone and weighs less
than 90 pounds at best. She spends her entire time in bed, or in her
special wheelchair.
Hamburg Center is an institutional facility operated by the
Commonwealth of Pennsylvania, Department of Public Welfare. At the
Center, Carol has received excellent care for the 53 years and I hope
the Center remains in operation for the rest of Carol's days on earth.
Some of her caregivers are the second generation of a family (daughters
of women who originally cared for Carol). With her advancing age, Carol
is now afflicted with a number of `senior citizen' medical conditions.
The list is long and I can only imagine her day-to-day suffering. She
receives all of her nutrition, liquids and medications through a
feeding tube imbedded directly into her large intestine to reduce the
risk of prior acid reflux. Despite those precautions, she suffers from
aspiration pneumonia incidents that have required being transported 20
miles to the Reading, PA hospital Emergency Room an average of six
times per year for diagnosis and admission for antibiotic treatment.
That disruption to her life--often in the middle of the night--is
likely traumatic, despite providing additional care. Carol is now on
constant oxygen administration. She has been permanently moved to the
medical wing of the Hamburg Center where a full-time nurse is on duty
7x24.
I do NOT view the term institutionalization as a negative. Rather
it is an indication of an orchestrated, highly monitored, and well
administrated level of care from a number of specialists. Our
government, our police, our public roads, public utilities and other
similar entities are institutions, fully created to be uniform and to
provide services. Institutions and institutionalization is good, not
evil, despite the opinions and actions of some self-declared `do-
gooders' who broadly profess deinstitutionalization.
My deceased farther fully opposed any attempt at `community-based
placement' for Carol--even in her healthier days--because the level of
care is not available in those small scale four-to-ten patient
facilities where there his high staff turnover and little on-site
supervision. In addition, those community facilities rely on obtaining
the services of local medical personnel on an as needed basis, whereas
Hamburg Center has primary care doctors, psychiatrists and nurses on
staff. I recently hears an NPR radio story about the difficulty in
staffing community-based centers citing things like employees who fail
to show up for their scheduled shift because they want to stay home and
watch a basketball game on TV instead. I carry forth our family's
opposition to community placement for Carol and pray for her continued
institutionalized residence at Hamburg Center.
I am certain that Carol's life--in her ever increasing frail
state--would be threatened by deinstitutionalizing her. In 2014, loved
ones of patients at Hamburg Center and other DPW run Centers in
Pennsylvania were successful by court appeal to obtain a Revised
Settlement in the case `Benjamin (and others) versus DPW' that changed/
reversed the intended DPW practices to place patients on a list of
forced community placement candidates. We feel the outcome of that
practice would have also created the `slippery slope' to allow DPW to
close their Centers. Patients who desire community place will be, and
were previously able to select that change. However, those who are
unable to express their desires will now be evaluated individually with
the benefit of doubt given to continuing to give them the best care at
the Centers.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Tracy Thomas
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of the Transplant Roundtable
Dear Chairman Blunt and Ranking Member Murray: On behalf of the
Transplant Roundtable, a coalition of organizations representing organ
transplant patients and professionals, we offer our strong support for
increased Federal funding in fiscal year 2016 for the organ donation
and transplantation programs administered by the Division of
Transplantation (DoT) within the Health Resources and Services
Administration (HRSA).
We applaud you and this Subcommittee for many years of unwavering
commitment to these programs and ask again for your assistance. While
we recognize the serious challenges regarding the Federal budget and
annual appropriations, it is critical that the Federal Government
retain its strong commitment to the Division of Transplantation
(``DoT''). The President proposed a fiscal year 2016 appropriation of
$23,549,000, the same level as the fiscal year 2015 appropriated
amount.
Given the persistent need for donor organs and the many important
programs administered and supported by the Division of Transplantation,
we ask that you appropriate an increase of $3,000,000 for fiscal year
2016 to bring the budget to $26,549,000. This appropriation level would
finally bring the DoT budget beyond the historical high of $25 million
achieved back in fiscal year 2002.
The DoT serves a unique and irreplaceable function in helping to
facilitate organ donation and transplantation, serving the needs of
critically ill Americans in need of an organ transplant to survive.
Programs supported and administered by the DoT save lives and improve
the quality of life of thousands of Americans. DoT provides oversight
and funding for the Nation's organ procurement, allocation, and
transplantation system through the Organ Procurement and
Transplantation Network (OPTN). It coordinates all organ and tissue
donation activities and funds donation research.
Further, through the National Living Donor Assistance Center
(NLDAC), it provides funding for travel and subsistence expenses of
living donors whose low incomes may otherwise prohibit them from
donating. The NLDAC program has helped facilitate organ transplantation
for over 2,500 recipients since its inception, saving lives while
saving the Medicare program over $60 million in dialysis services that
were no longer necessary due to successful transplantation. These and
other programs funded through DoT are very worthy of additional Federal
investment as they produce a major return on this investment, year
after year.
According to the Organ Procurement and Transplant Network (OPTN),
there were 29,532 organ transplants performed from 14,412 donors in
2014. One organ donor can provide enough organs to save up to eight
lives. And yet, demand for donor organs continues to outstrip supply by
a wide, persistent margin. Every ten minutes a person is added to the
transplant waiting list and 21 individuals die each day awaiting a
donor organ, according to the OPTN. According to the United Network of
Organ Sharing (UNOS), as of March 2015, the national patient waiting
list for organ transplants contained more than 78,000 ``active''
patients and over 123,000 total patients awaiting donor organs.
``Active'' status refers to patients who are medically ready and able
to receive a transplant when one becomes available.
Congressional, agency and private sector support has resulted in
transplantation that has saved and enhanced the lives of well more than
600,000 people in the United States, helped to greatly reduce the
number of deaths on the waiting list, and generated substantial savings
to the Medicare program through foregone need for dialysis. As a
country, we do very well in facilitating and providing these life-
saving services, but we need sustained Federal commitment and resources
to continue to meet the relentless, continuing need for donor organs.
Your leadership has been exemplary over many years on
transplantation and organ donation activities. On behalf of transplant
patients and their families, we ask that you to continue your
leadership on Federal organ donation and transplantation programs by
increasing Federal funding for the Division of Transplantation under
the Health Resources and Services Administration.
Thank you for the opportunity to submit this testimony for the
written record.
Division of Transplantation
Health Resources and Services Administration
U.S. Department of Health and Human Services
By the Undersigned Organizations of the Transplant Roundtable:
Alliance for Paired Donation; American Association of Kidney
Patients; American Association for the Study of Liver Diseases;
American Society of Nephrology; American Society of Pediatric
Nephrology; American Society of Transplantation; American Society of
Transplant Surgeons; American Transplant Foundation; Association of
Organ Procurement Organizations; Coalition to Promote Living Kidney
Donation; Dialysis Patient Citizens; Donate Life America; Eye Bank
Association of America; NATCO, The Organization for Transplant
Professionals; National Kidney Foundation; National Kidney Registry;
Renal Physicians Association; Texas Transplant Society; Transplant
Recipients International Organization; United Network for Organ
Sharing; WaitList Zero.
______
Prepared Statement of the Tri-Council for Nursing
The Tri-Council for Nursing, comprising the American Nurses
Association, the American Association of Colleges of Nursing, the
American Organization of Nurse Executives, and the National League for
Nursing, respectfully requests $244 million in fiscal year 2016 for the
Nursing Workforce Development programs authorized under Title VIII of
the Public Health Service Act (42 U.S.C. 296 et seq.) and administered
by the Health Resources and Services Administration.
The Tri-Council is a long-standing nursing alliance focused on
leadership and excellence in the nursing profession. The members of
these respective organizations are acutely aware of the demand for
nursing services due to a growing aging population, an increased focus
on preventative care, and skyrocketing rates of individuals with
multiple chronic conditions.
According to the U.S. Bureau of Labor Statistic's Employment
Projections for 2012-2022, the employment of registered nurses (RNs) is
projected to grow 19 percent from 2012 to 2022. BLS also projects job
openings for RNs due to growing demand and replacement needs in the
workforce will be over 1 million by 2022.
Increasing demand in the coming years will be driven by an aging
population. According to the Pew Research Center, an estimated 10,000
people a day are turning 65 and that trend will continue until 2019. As
such, the healthcare workforce will need to grow to keep up with demand
for nursing care in traditional acute care settings and the expansion
of non-hospital settings such as home care and long-term care. Further,
more than one million of the Nation's 2.6 million practicing RNs are
over the age of 50, according to the 2008 National Sample Survey of
Registered Nurses.
Nurses continue to be the largest group of healthcare providers
whose services are directly linked to quality and cost-effectiveness.
The Tri-Council is grateful to the Subcommittee for its past commitment
to Title VIII funding and respectfully asks that you continue to make
the long-term investment that will build our Nation's nursing
workforce.
Nursing Workforce Development Programs \1\
Since 1964, the Nursing Workforce Development programs, authorized
under Title VIII of the Public Health Service Act, have helped build
the supply and distribution of qualified nurses to meet our Nation's
healthcare needs. These programs have supported nursing education at
all levels and supported institutions that educate nurses who practice
in rural and medically underserved communities. A description of the
Title VIII programs is provided below:
---------------------------------------------------------------------------
\1\ U.S. Department of Health and Human Services. (2015). Health
Resources and Services Administration fiscal year 2016 Justification of
Estimates for Appropriations Committees. Retrieved from: http://
hrsa.gov/about/budget/budgetjustification.pdf.
---------------------------------------------------------------------------
Advanced Nursing Education (ANE) Programs (Sec. 811) fund a number
of grant activities--including several traineeships--that aim to
increase the size and quality of the advanced nursing workforce.
Supporting the preparation of RNs in master's and doctoral nursing
programs, the ANE grants help prepare our Nation's nurse practitioners,
clinical nurse specialists, nurse midwives, nurse anesthetists, nurse
educators, nurse administrators, nurses in executive practice, public
health nurses, and other nursing specialists requiring advanced nursing
education. In Academic Year 2013-2014, these grants supported the
education of 10,504 students.
Under the ANE program are two critical traineeship programs that
are particularly relevant as the demand for primary and acute care
services rises. The Advanced Education Nursing Traineeships (AENT)
assist graduate nursing students by providing full or partial
reimbursement for the costs of tuition, books, program fees, and
reasonable living expenses. The Nurse Anesthetist Traineeships (NAT)
support the education of students in nurse anesthetist programs. In
some States, certified registered nurse anesthetists are the sole
anesthesia providers in nearly 100 percent of rural hospitals. In
Academic Year 2013-2014, the AEN Traineeship and the NAT supported
5,650 nursing students, exceeding the program's target of 2,910.
Nursing Workforce Diversity (NWD) Grants (Sec. 821) prepare
students from disadvantaged backgrounds to become nurses, producing a
more diverse nursing workforce. This program awards grants and contract
opportunities to schools of nursing for clinical training to address
nursing educational needs. In Academic Year 2013-2014 the number of NWD
student trainees was 6,691.
Nurse Education, Practice, Quality and Retention (NEPQR) Grants
(Sec. 831) help schools of nursing, academic health centers, nurse-
managed health clinics, as well as State and local governments
strengthen nursing education programs, thereby increasing the size and
quality of the nursing workforce. The purposes of the NEPQR grants are
broad and flexible, allowing the program to address emerging needs in
nursing workforce development. NEPQR supports infrastructure
development to enhance the coordination and capacity building of inter-
professional practice and education among health professions across the
United States, and particularly in medically underserved areas.
NURSE Corps (Sec. 846), (formerly the Nursing Education Loan
Repayment and Scholarship Program) provides support for nurses and
nursing students to alleviate nursing shortages and ensure access to
nursing services in underserved areas. The NURSE Corps Scholarship
Program provides qualified individuals with tuition support and a
stipend provided they serve at a Critical Shortage Facility upon
graduation. Participants in the NURSE Corps Loan Repayment Program can
have up to 85 percent of qualifying loans forgiven. Registered nurses
and advanced practice registered nurses are eligible if they serve 2 or
3 years at Critical Shortage facilities and nurse faculty employed at
accredited nursing programs also are eligible. In fiscal year 2014, the
NURSE Corps Programs supported 1,334 nurses.
Nurse Faculty Loan Program (Sec. 846A) increases the number of
qualified nurse faculty by creating a student loan fund within
individual schools of nursing. Students agree to teach at a school of
nursing in exchange for cancellation of up to 85 percent of their
educational loans, plus interest, over a 4-year period. In Academic
Year 2013-2014, this program supported a total of 2,401 nursing
students pursuing a graduate-level degree as nurse faculty.
Comprehensive Geriatric Education Program (Sec. 865) provides
support to nursing students specializing in care for the elderly. The
program may also fund traineeships for individuals who are preparing
for advanced education nursing degrees in geriatric nursing, long-term
care, gero-psychiatric nursing, or other nursing areas that specialize
in the care of the elderly population. In Academic Year 2013-2014,
there were 14,200 trainees supported by these grants.
Nurses are the key to helping decrease healthcare costs, addressing
the burden of disease, and improving the quality of care delivery. The
funding of Federal programs that have proven their effectiveness over
many years, such as Title VIII Nursing Workforce Development programs,
helps ease the demand for RNs. The Tri-Council respectfully requests
your support for $244 million in fiscal year 2016 for the Title VIII
Nursing Workforce Development Programs. If our organizations can be of
assistance, please contact ANA's Director of Government Affairs,
Michelle Artz. Thank you in advance for providing these resources to
bolster the Nation's nursing workforce.
Respectfully,
Pamela F. Cipriano, PhD, RN, NEA-BC, FAAN, President, Marla
Weston, PhD, RN, FAAN, Chief Executive Officer, American Nurses
Association;
Eileen Breslin, PhD, RN, FAAN, President, Deborah Trautman,
PhD, RN, Chief Executive Officer, American Association of
Colleges of Nursing; Linda Burnes Bolton, DrPH, RN, FAAN,
President, Pamela Austin Thompson, MS, RN, CENP, FAAN, Chief
Executive Officer, American Organization of Nurse Executives;
Marsha Howell Adams, PhD, RN, CNE, FAAN, ANEF, President,
Beverly Malone, PhD, RN, FAAN, Chief Executive Officer,
National League for Nursing.
______
Prepared Statement of the Thurgood Marshall College Fund
introduction
Thank you Chairman Blunt and Ranking Member Murray and the entire
Committee for accepting this written testimony. My name is Johnny C.
Taylor, Jr., President and CEO of the Thurgood Marshall College Fund
(TMCF). The Thurgood Marshall College Fund supports and represents more
than 300,000 students attending the country's 47 publicly-supported
Historically Black Colleges and Universities (HBCUs), medical schools
and law schools. More than eighty percent of all students enrolled in
HBCUs attend TMCF member schools. TMCF was established in 1987 under
the leadership of Dr. N. Joyce Payne.
To date, TMCF has provided more than $200 million in scholarships,
programmatic and capacity building support to students and member
schools. The average in-State tuition at a TMCF school is $7,105 and is
a desirable choice for diverse first generation college students. While
the tuition rates of our member schools remain reasonable, the
resources from key accounts across the Federal Government established
to support students, HBCUs and minority serving institutions continue
to shrink and jeopardize the likelihood of students obtaining a college
degree. This is a national security issue.
It is with a sense of urgency that I submit written testimony to
highlight TMCF's fiscal year 2016 education budget priorities and
highlight the importance of increasing critical funding streams that
support Historically Black Colleges and Universities (HBCUs).
Specifically, our priority programs under the Labor HHS Appropriations
Subcommittee include Title IIIB Strengthening Historically Black
Colleges and Universities, Pell, and the Capital Financing Program.
As demographics change, HBCUs provide access and opportunities to
an increasingly diverse population and remain committed to preparing
America's future leaders in education, science and technology, law,
medicine and public service to meet the workforce demands in a globally
competitive world. In an effort to ensure that we are producing a
pipeline of top talent, critical funding and other resources targeted
to HBCUs must be preserved. We urge the committee to increase funding
for priority HBCU programs and accounts to ensure students attending
HBCUs have the resources to ensure they graduate with the skills and
knowledge to be globally competitive.
Enhance Title IIIB: Aid for Institutional Development
Title IIIB: Strengthening Historically Black Colleges and
Universities
TMCF urges the committee to maintain and consider increasing the
fiscal year 2016 discretionary and mandatory funding levels for Title
IIIB, Strengthening Historically Black Colleges and Universities
program. This account has not kept up with inflation and sequestration
resulted in real cuts to individual campuses. Please restore Title IIIB
discretionary funding to fiscal year 2010 levels of $267 million. The
account is currently funded at $227 million. Additionally, we ask the
Committee to please protect the $85 million mandatory funding for
fiscal year 2016.
An increase in funding levels for the Title IIIB programs are
critical to enhance and sustain the quality of HBCUs, and to meet the
national challenges associated with global competiveness, job creation
and changing demographics. In particular, these funds support research
opportunities for STEM students and professional development for
faculty in the science and technology fields. These funds are also used
to help build endowments.
TMCF also urges the Committee to approve $61 million for the HBCU
Graduate program under Title IIIB, section 326. This would essentially
result in level funding from fiscal year 2015. Additionally, the
Master's Degree Program for HBCUs was last funded under the fiscal year
2014 budget at $10 million. We ask the Committee to please restore
funding for this account to match the fiscal year 2014 enacted level.
Increase Pell and Reinstate Summer Pell
We respectfully request that the Committee approve $22.8 billion
for the fiscal year 2016 Pell funding level. TMCF supports a $5,690
maximum Pell award. We also urge the Committee to reinstate summer Pell
Grants.
The majority of students who attend HBCUs depend on some form of
financial aid to complete their degree. Of all first-time, full-time
undergraduate degree/certificate-seeking students who attend TMCF
member-schools, 93 percent rely on financial aid in pursuit of a
degree. While HBCUs provide a quality affordable education, many poor,
low-income families continue to debate the return on a college
investment if they are required to take out large amounts of loans.
Year round Pell makes it possible for many first-generation students to
complete college on time. As a Nation, we want to provide as many
avenues as possible for low-income students to enter and complete
college with minimal amounts of college loan debt.
Though there have been modest increases in Pell, these increments
have failed to keep up with inflation, caused a decline in enrollments
at HBCUs and hindered many students from persisting and graduating.
More should be done to ensure students entering college graduate with a
degree and are prepared for the globally competitive workforce. This is
a national security issue.
Traditionally, HBCUs have accepted first-generation, low-income
students who often graduate from poor performing high schools and on
average take longer to complete college. As a result, these students
often attend HBCUs during the summer before their freshman year to get
a jumpstart. Additionally, first generation students who attend summer
school are more likely to complete their degree on time. TMCF strongly
believes summer Pell should be reinstated.
HBCU Capital Financing Program
TMCF urges Congress to increase the HBCU Capital Financing Program
by $5.6 million to $25 million for fiscal year 2016. This program
provides low-cost capital to finance physical improvements on HBCU
campuses by guaranteeing and administering loans. At a minimum, we
recommend restoring the loan subsidy to pre-sequester level of $20.5
million. We also request appropriations language to remove the $1.1
billion loan guarantee statutory cap, which was recommended by the
Department of Education in previous years.
Thank you for your consideration of the funding proposals offered
by TMCF. Please let me know if you have questions or would like to meet
in the future to discuss TMCF's fiscal year 2016 funding
recommendations.
______
Prepared Statement of Trust for America's Health
Trust for America's Health (TFAH), a nonprofit, nonpartisan
organization dedicated to saving lives by working to make disease
prevention a national priority, is pleased for this opportunity to
provide written testimony on the State of public health funding. As
this subcommittee works to develop a fiscal year 2016 Labor, Health &
Human Services, Education and Related Agencies (LHHS) appropriations
bill, I urge you to ensure adequate funding for public health
prevention and preparedness programs at the Centers for Disease Control
and Prevention (CDC) and other public health agencies.
Every American should have the opportunity to be as healthy as he
or she can be. Every community should be safe from threats to its
health. And all individuals and families should have a high level of
services that protect and support their health, regardless of who they
are or where they live. But right now, Americans are not as healthy as
they could or should be. The lingering effects of sequestration and
years of funding cuts have fundamentally eroded the country's ability
to respond to disasters, prevent chronic diseases, reduce health
disparities, and ensure the health of all Americans.
Chronic diseases such as cancer, diabetes, lung disease, heart
disease and stroke are responsible for seven out of 10 deaths and cost
$1.3 trillion in treatment costs and lost productivity every year. Two
thirds of Americans are overweight or have obesity and nearly 20
percent of Americans smoke. There is a growing evidence base that
demonstrates that the majority of chronic disease is preventable by
addressing common risk factors. We have begun to see signs of success,
with childhood obesity rates declining in cities and States that were
among the first to adopt a comprehensive approach to obesity
prevention. We must bring that knowledge to scale, so that Americans
across the country have the opportunity to lead healthier lives. Over
the past 2 fiscal years, we were pleased that Congress made important
new investments in community prevention that will help continue our
efforts to transform our healthcare system to one that values
prevention and wellness, and we urge the Committee to build on those
investments in the fiscal year 2016 bill.
Recent infectious disease outbreaks illustrated persistent gaps in
the country's preparedness for diseases, disasters, and bioterrorism.
In 2014 the Nation saw the first domestic cases of Ebola virus and
chikungunya, multi-State cyclospora and measles outbreaks, severe cold
and drought, wildfires, tornados, and mudslides. Each of these required
a public health and healthcare response. However, previous Federal,
State, and local budget cuts have threatened more than a decade of
progress.
Finally, prescription drug abuse has quickly grown into a full-
blown epidemic, with more than 6.1 million Americans abusing or
misusing prescription drugs and at least 60 American dying every day
from overdoses. Overdose deaths from prescription drugs have quadrupled
since 1999 and outnumber deaths from all illicit drugs--including
heroin and cocaine--combined. Addressing this epidemic requires
investments both in prevention and in treatment of those already
suffering from substance abuse addiction.
Building a public health system prepared to meet the challenges of
protecting Americans from natural and man-made threats and preventing
disease can only occur with a strong and steady baseline of funding.
Below are TFAH's recommendations for meeting that challenge:
The Prevention and Public Health Fund (PPHF)
TFAH was pleased to see Congress exercise its authority to allocate
the Prevention and Public Health Fund in fiscal year 2014 and fiscal
year 2015, and we urge the Committee to do so again in the fiscal year
2016 appropriations bill. To date, the Fund has invested $5.25 billion
nationwide to support State and local efforts to transform and
revitalize communities, build epidemiology and laboratory capacity to
track and respond to disease outbreaks, address healthcare associated
infections, train the Nation's public health and health workforce,
screen for and prevent cancer, expand access to vaccines, reduce
tobacco use, and help control the obesity epidemic.
Centers for Disease Control and Prevention (CDC)
Investments in our Nation's primary public health agency are not
keeping pace with the growing challenges we face. From fiscal year 2010
to 2013, the CDC saw its budget authority cut by 18 percent. The fiscal
year 2015 Omnibus Appropriations measure provided CDC with an increase
of about $43 million, including $887.3 million from the Prevention and
Public Health Fund, resulting in an overall near $13 million increase
for chronic disease programs. However, that increase simply brings CDC
funding back to fiscal year 2013 levels. Scarce resources means CDC
will be forced to make extremely difficult, sometimes life and death
choices. We urge the Committee to support the overall $110 million
program level increase included in the President's budget for fiscal
year 2016.
National Center for Chronic Disease Prevention and Health Promotion
(NCCDPHP)--CDC
Our Nation's doctors and hospitals are our trusted front line when
illness appears, but we must continue to engage not only health systems
but sectors such as education, housing, business, planning, and faith-
based institutions to transform communities to make the healthy choice
the easy choice and prevent illness in the first place. CDC's Chronic
Disease Center has made progress in moving away from the traditional
categorical approach to funding disease prevention and toward more
coordinated, cross-cutting strategies. We encourage the Committee to
maintain funding for the Chronic Disease Center at fiscal year 2015
levels ($1.198 billion), building upon fiscal year 2015 investments in
diabetes, heart disease and stroke, the Partnerships to Improve
Community Health initiative, the Racial and Ethnic Approaches to
Community Health program and the Preventive Health and Health Services
Block Grant program. For the block grant in particular, TFAH calls upon
the Committee to promote its use to modernize our public health system
by supporting health department accreditation and other efforts to
ensure the Nation's health departments can deliver foundational public
health capabilities to all Americans.
National Center for Environmental Health (NCEH)--CDC
Critical programs conducted at the CDC National Center for
Environmental Health support our chronic disease prevention and public
health preparedness efforts. Yet it remains one of the most critically
underfunded parts of CDC. We recommend that you fund NCEH at $212.460
million in fiscal year 2016 to maintain and grow the National
Environmental Public Health Tracking Network (by $5 million), expand
the Climate and Health program to all 50 States, fully restore the
Childhood Lead Poisoning Prevention Program, and pursue other important
priorities like asthma control and the built environment.
Public Health Emergency Preparedness (PHEP) Cooperative Agreements--CDC
The Public Health Emergency Preparedness (PHEP) cooperative
agreements, administered by CDC, is the only Federal program that
supports the work of State and local health departments to prepare for
all types of disasters, including bioterror attacks, natural disasters,
and infectious disease outbreaks. The grants fund nearly 4,000 State
and local public health staff positions, and support 15 core
capabilities including public health laboratory testing, surveillance
and epidemiology, community resilience, countermeasures and mitigation,
and more. These funds are used for everyday preparedness activities,
such as monitoring public health threats, and have been integral in
expanding the response to full-scale disasters, such as domestic cases
of Ebola virus and chikungunya, multi-State cyclospora and measles
outbreaks, severe cold and drought, wildfires, tornados, and mudslides.
TFAH recommends $675 million for the Public Health Emergency
Preparedness Cooperative Agreements in fiscal year 2016, a $31 million
increase from current levels, to help States and localities restore
some of the core capabilities lost due to significant cuts to the
program in recent years.
Hospital Preparedness Program--ASPR
The Hospital Preparedness Program (HPP), administered by the
Assistant Secretary for Preparedness and Response (ASPR), provides
funding and technical assistance to prepare the health system to
respond to and recover from a disaster. HPP is building the capacity of
24,000 healthcare coalitions--regional collaborations between
healthcare organizations, providers, emergency managers, public sector
agencies, and other private partners--to meet the disaster healthcare
needs of communities. Through the coalition planning process,
facilities are learning to leverage resources, such as developing
interoperable communications systems, tracking beds, and writing
contracts to share assets.
HPP helped a prepared healthcare system save lives during recent
events, including the Colorado wildfires, Boston Marathon bombings and
tornadoes in Kentucky and Joplin, MO. HPP appropriations have decreased
from $426 million in fiscal year 2010 to $255 million in fiscal year
2015, including a one third cut in the fiscal year 2014 omnibus. These
cuts have resulted in reduced capabilities for most awardees in areas
such as planning, exercises, planning for at-risk individuals,
management of supplies, and preparedness training. TFAH recommends $300
million for fiscal year 2016 for HPP, an incremental step toward
rebuilding the program.
Combating Prescription Drug Abuse--CDC & SAMHSA
TFAH was pleased that the President's budget included $133 million
in new investments to address prescription drug abuse, heroin use and
overdose deaths, including new funding for the Centers for Disease
Control and Prevention (CDC) and the Substance Abuse and Mental Health
Services Administration (SAMHSA). TFAH strongly supports this cross-
government initiative. In particular, we would like to highlight our
support for these pieces of the initiative within the jurisdiction of
the Labor-HHS bill:
--TFAH supports the President's budget request for $68 million (a $48
million increase) for the CDC Injury Center's Injury Prevention
Activities line to enable the CDC to expand its work to all 50
States to help address the main drivers of the epidemic of
prescription drug overdoses and provide those States with
additional resources and scientific technical assistance for
surveillance and prevention efforts. Prescription drug abuse is
a national problem which requires a national response.
--TFAH supports the request for $12 million for SAMHSA to establish
the Grants to Prevent Prescription Drug/Opioid Overdose Related
Deaths (PDO) program. This new program will provide grants to
10 States to reduce significantly the number of opioid
overdose-related deaths.
--TFAH supports the request for $25 million (a $13 million increase)
for SAMHSA to expand access to medication assisted treatment,
which is an effective tool to treat opioid addiction but is
unavailable for many Americans who desperately need it due to
restrictions in access.
Additionally, TFAH recommends a $25 million increase for the
Substance Abuse Block Grant (SABG) to help expand access to substance
abuse treatment. Substance abuse treatment has been underfunded for
decades, and while there has been more than a five-fold increase in
treatment admissions for prescription drug abuse in the past decade,
millions more are going untreated. The SABG alone accounts for about 40
percent of spending by State substance abuse agencies, yet the SABG has
been level funded at $1.8 billion for several years despite the
increased burden of addiction.
Conclusion
Eighty-five percent of the CDC's annual budget flows to States,
communities, tribes, and territories in the form of grants and
contracts to State and local public health departments, and community
partners, to give them the tools they need to conduct critical public
health and prevention activities that every American relies on, such as
protecting us from infectious diseases by combating healthcare-
associated infections by delivering immunizations, ensuring adequate
public health emergency preparedness, and conducting nonstop disease
surveillance. Investing in disease prevention is the most effective,
common-sense way to improve health and address our long-term deficit.
Thank you for your consideration.
[This statement was submitted by Jeffrey Levi, Executive Director,
Trust for America's Health.]
______
Prepared Statement of Tulsa CARES
We are pleased to submit this testimony to the Members of this
Subcommittee on the urgency of continuing to support the Ryan White
Program through the Appropriations process and increasing funding for
the domestic HIV/AIDS portfolio in fiscal year 2016. This support and
funding will be decisive for achieving the goals of the National HIV/
AIDS Strategy (NHAS), the AIDS Free Generation and halting the
devastating effects of the HIV Treatment Cascade.
Tulsa CARES is part of a nationwide coalition, the Food is Medicine
Coalition, of over 80 food and nutrition services providers, affiliates
and their supporters across the country that provide food and nutrition
services to people living with HIV/AIDS (PLWHA) and other chronic
illnesses. In our service area, we provide over 83,000 medically
tailored meals through our grocery and prepared meal programs annually.
Collectively, the Food is Medicine Coalition is committed to increasing
awareness of the essential role that food and nutrition services (FNS)
play in successfully treating HIV/AIDS and to expanding access to this
indispensable intervention for people living with other severe
illnesses.
Why Food and Nutrition Services (FNS) Matter for PLWHA
While adequate food and nutrition are basic to maintaining health
for all persons, good nutrition is crucial for the management of HIV
infection. Proper nutrition is needed to increase absorption of
medication, reduce side effects, and maintain healthy body weight.
Research has identified the virus as an independent risk factor for
cardiovascular, liver and kidney disease, cancer, osteoporosis and
stroke. Several HIV medications can cause nausea and vomiting and some
can affect lab results that test lipids and kidney and liver function.
These compounding health effects, caused by the virus and its
medications, reinforce the important role a nutrient-rich diet plays in
a patient's overall care plan. In addition, providing food and
nutrition services can serve to facilitate access and engagement with
medical care, especially among vulnerable populations.
The Food and Nutrition Services category within the Ryan White
Program includes medical nutritional therapy (MNT) and food and
nutrition services (FNS). MNT covers nutritional diagnostic, therapy,
and counseling services focused on prevention, delay or management of
diseases and conditions, and involves an in-depth assessment, periodic
reassessment and intervention provided by a licensed, Registered
Dietitian Nutritionist (RDN) outside of a primary care visit. The range
of FNS provided through the Ryan White program complements the needs of
PLWHA at any stage of their illness. For those who are most mobile,
there are congregate meals, walk-in food pantries and voucher programs.
For those whose disease has progressed, home-delivered meals and home-
delivered grocery bags complement their medical treatment.
Since 2006, HRSA has included MNT and FNS, provided under the
guidance of RDNs, as a clinically effective core medical service in the
Ryan White Program. These services play a critical role in ensuring
that PLWHA enter and continue in primary medical care, adhere to their
medications, and ultimately achieve viral suppression.
FNS as a Care Completion Service Unique to Ryan White
Social and economic interventions, most often in the form of care
completion service like food and nutrition services, are fundamental to
making healthcare work for PLWHA. Support services for PLWHA are not
covered in any comprehensive way by Medicaid or other public insurance
initiatives that have been expanded by the Affordable Care Act. As the
HIV epidemic in the United States increasingly impacts low-income
individuals, support services help stabilize individuals living with or
at risk of HIV. When needs are met, and life's emergencies are held at
bay, PLWHA are poised to remain connected to care and treatment.
Access to FNS and the Triple Aim
Access to appropriate food and nutrition services (FNS) are
increasingly recognized as key to accomplishing the triple aim of
national healthcare reform for PLWHA.
Better Health Outcomes
When clients get effective FNS and become food secure, they then
keep scheduled primary care visits, score higher on health functioning,
are at lower risk for inpatient hospital stays and are more likely to
take their medicines.\1\ Studies show both the health benefits of
access to MNT and/or nutrition counseling for people with HIV
infections \2\ and the resulting decreases in their healthcare costs.
Compare these outcomes to PLWHA who are food insecure, who have:
---------------------------------------------------------------------------
\1\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
\2\ Academy of Nutrition and Dietetics (formerly American Dietetic
Association). HIV/AIDS Nutrition Evidence Analysis Project at http://
www.adaevidencelibrary.com/
conclusion.cfm?conclusion_statement_id=250707 Accessed 29 July 2012.
---------------------------------------------------------------------------
--Lower CD4 counts & lower likelihoods of having undetectable viral
loads \3\
---------------------------------------------------------------------------
\3\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
--More ER visits \4\ & increased morbidity and mortality \5\
---------------------------------------------------------------------------
\4\ Ibid.
\5\ Anema A, Chan K, Yip B, Weiser S, Montaner JSG, Hogg RS. Impact
of food insecurity on survival among HIV-positive injection drug users
receiving antiretroviral therapy in a Canadian cohort. 141st APHA
Annual Meeting, Nov. 2-6, 2013. Boston, MA. Abstract #: 290277.
---------------------------------------------------------------------------
--More missed primary care appointments & reduced use of
antiretroviral therapy.\6\
---------------------------------------------------------------------------
\6\ Aidala A., Yomogida M., and the HIV Food & Nutrition Study Team
(2011).
---------------------------------------------------------------------------
Lower Healthcare Costs
Millions of dollars in healthcare expenditures are saved through
the provision of FNS to PLWHA. A recent study comparing participants in
a medically-tailored FNS program vs. a control group within a local
managed care organization found that average monthly healthcare costs
for PLWHA fell 80 percent (more than $30,000) for first 3 months after
receiving FNS. \7\ If hospitalized, FNS clients' costs were 30 percent
lower, their hospital length of stay was cut by 37 percent and they
were 20 percent more likely to be able to be discharged to their homes
rather than a more expensive institution. \8\ Furthermore, FNS are a
very inexpensive intervention. For each day in a hospital saved, you
can feed a person a medically-tailored diet for half a year.
---------------------------------------------------------------------------
\7\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
\8\ Gurvey J, Rand K, Daugherty S, Dinger C, Schmeling J, Laverty
N. Examining Health Care Costs Among MANNA Clients and a Comparison
Group. OMG Center for Collaborative Learning, Philadelphia, PA, USA. J
Prim Care Community Health. 2013 Jun 3. [Epub ahead of print].
---------------------------------------------------------------------------
Improved Patient Satisfaction
Studies show nutrition counseling improves quality of life.\9\
Members overwhelmingly report that our services help them live more
independently, eat more nutritiously and manage their medical treatment
more effectively.
---------------------------------------------------------------------------
\9\ Rabeneck L, Palmer A, Knowles JB, Seidehamel RJ, Harris CL,
Merkel KL, Risser JMH, Akrabawi SS. A randomized controlled trial
evaluating nutrition counseling with or without oral supplementation in
malnourished HIV-infected patients. J Am Diet Assoc. 1998; 98: 434-438.
Schwenk A, Steuck H, Kremer G. Oral supplements as adjunctive treatment
to nutritional counseling in malnourished HIV-infected patients:
randomized controlled trial. Clinical Nutrition. 1999; 18(6): 371-374.
---------------------------------------------------------------------------
FNS and the National HIV/AIDS Strategy (NHAS)
Access to FNS for PLWHA is fundamental to fulfilling the goals of
the NHAS.
--NHAS Goal: Reducing new HIV infections: PLWHA who are food insecure
are less likely to have undetectable viral loads in a
statistically significant way. Undetectable viral loads prevent
transmission 96 percent of the time,\10\ thus, FNS is key to
prevention.\11\
---------------------------------------------------------------------------
\10\ M. S. Cohen et al., ``Prevention of HIV-1 Infection with Early
Antiretroviral Therapy,'' N. Engl. J. Med. 365, 493-505 (2011). HPTN
052.
\11\ Palar K, Laraia B, Tsai A, Weiser SD (2013). Food insecurity
is associated with sexually transmitted infections and HIV serostatus
among low income adults in the National Health and Nutrition
Examination Survey (NHANES) (1999-2010). Presented at the American
Public Health Association 141st Annual Meeting, Boston, MA, November 5,
2013.
---------------------------------------------------------------------------
--NHAS Goal: Increasing access to care and improving health outcomes
for people living with HIV: PLWHA who receive effective FNS are
more likely to keep scheduled primary care visits, score higher
on health functioning, are at lower risk for inpatient hospital
stays and are more likely to take their medicines.\12\
---------------------------------------------------------------------------
\12\ Aidala A, Yomogida M, Vardy Y & the Food & Nutrition Study
Team. Food and Nutrition Services, HIV Medical Care, and Health
Outcomes. New York State Department of Health: Resources for Ending the
Epidemic, 2014. Available at https://www.health.ny.gov/diseases/aids/
ending_the_epidemic/docs/key_resources/housing_and_supportive_services/
chain_factsheet3.pdf.
---------------------------------------------------------------------------
--NHAS Goal: Reducing HIV-related disparities and health inequities:
By providing FNS to PLWHA who are in need largely because of
poverty, we improve health outcomes, thereby reducing health
disparities.\13\
---------------------------------------------------------------------------
\13\ Weiser SD, Frongillo EA, Ragland K, Hogg RS, Riley ED,
Bangsberg DR. Food insecurity is associated with incomplete HIV RNA
suppression among homeless and marginally housed HIV-infected
individuals in San Francisco. J Gen Intern Med. 2009 Jan;24(1):14-20.
doi: 10.1007/s11606-008-0824-5. Epub 2008 Oct 25.
---------------------------------------------------------------------------
Conclusion
We are deeply aware of the difficult decisions that face the
members of the Subcommittee in the current fiscal environment. Yet,
research shows that investment in FNS, with the great return in
prevention and retention in HIV care, are vital to lowering the number
of new infections in the domestic HIV epidemic and ultimately reducing
healthcare costs and preserving healthcare resources for the future. A
client's diet can literally have life and death consequences. When
people are severely ill, good nutrition is one of the first things to
deteriorate, making recovery and stabilization that much harder, if not
impossible. Early and reliable access to medically-appropriate FNS
helps PLWHA live healthy and productive lives, produces better overall
health outcomes and reduces healthcare costs.
Most importantly, there remains a tremendous variation by State in
coverage of food and nutrition services both inside and outside of Ryan
White, making support for Ryan White all the more needed. Ultimately,
if we are going to achieve a more coordinated national response to the
HIV epidemic and our quest to reduce healthcare spending nationwide,
FNS must be included in all healthcare reform efforts, including the
Ryan White and the ACA.
Along with our colleagues, we appreciate the opportunity to offer
testimony regarding the fiscal year 2016 Appropriations process. We are
also pleased to offer our assistance and expertise, including
information from our Research Library.
[This statement was submitted by R. Shannon Hall, Executive
Director, Tulsa CARES.]
______
Prepared Statement of Rebecca Underwood
Thank you for this opportunity to provide outside witness testimony
for the record to the Senate Appropriations Subcommittee on Labor,
Health and Human Services, Education and Related Agencies.
I submit this testimony as a request that Congress prohibit the use
of appropriated Federal funds by any DHHS program to support activities
which attempt to downsize or close a Medicaid-licensed Intermediate
Care Facility for Individuals with Intellectual Disabilities (ICD/IID)
or any other Medicaid-licensed setting serving people with intellectual
disabilities, unless the purpose of the action is to remedy systemic
abuse.
I strongly object to the use of United States Department of Health
and Human Services (DHHS) appropriations to achieve public policies of
forced deinstitutionalization and to develop coercive and subversive
methods of deinstitutionalization resulting in the eviction of
individuals with severe, profound and extreme intellectual and
developmental disabilities (IDD) from their HHS-licensed and funded
homes, without regard to individual choice and need.
I am the mother and co-guardian of an adult son, aged 35 who, as
the result of profound neurological damage at birth, functions at the
level of a 4-12 week old infant with chronic and complex medical
issues. After providing his 24/7 care in our home for several years, we
accepted the reality that our son would benefit from the comprehensive,
synchronized medical care available in a highly specialized
intermediate care facility for individuals with intellectual
disabilities.
Our parenting decisions and our son's continued residence in his
current DHHS funded facility and receipt of the services uniquely
suited to meet his extensive and complex physical and medical needs,
which have proven beneficial for his survival, are under attack. A
number of DHHS funded programs are targeting forced displacement of our
most fragile constituency without regard to individual choice, need and
safety.
Several DHHS agencies, including AIDD and its programs, NCD , and
CMS use some of their Federal funding in support of forced
deinstitutionalization, the elimination of specialized services for
people with I/DD, contrary to Federal law and causing human harm. These
DHHS-funded deinstitutionalization activities include advocacy,
lobbying, class action lawsuits, and other tactics, resulting in the
downsizing and closure of DHHS-licensed ICF/IID homes, some specialized
group homes, sheltered workshops and day programs.
These DHHS v. DHHS deinstitutionalization activities are a cruel
and absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision as a mandate
requiring deinstitutionalization to justify their policies and actions,
forced deinstitutionalization is actually counter to Olmstead which
only requires community placement when such placement is not opposed by
the individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community settings . .
. Nor is there any Federal requirement that community-based
treatment be imposed on patients who do not desire it.''
Olmstead, 119 S. Ct. 2176, 2187 (1999) (majority)
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), Public Law 106-402, which authorizes AIDD programs for
funding, such as Protection and Advocacy (P&A), DD Councils and
University Affiliated Programs, does not support forced
deinstitutionalization as it states that individuals and their families
are the ``primary decisionmakers'' regarding services, supports and
policies (42 U.S.C. 15001(c)(3) 2000).
Medicaid law and regulations requires that individuals eligible for
the level of care provided in an ICF/IID must be ``[g]iven the choice
of either institutional or home and community-based services.'' 42
C.F.R. Sec. 441.302(d)(2) and 42 U.S.C. s 1392n(c)(2)(C).
Administration on Intellectual and Developmental Disabilities
(AIDD) administers programs and grants created under Public Law 106-
402, Developmental Disabilities Assistance and Bill of Rights Act of
2000 (DD Act). While the DD Act was last reauthorized in 2000 and
authorizations for DD Act appropriations expired in 2007, Congress
continues to fund these programs. DD Act programs, including Protection
and Advocacy (P&A) and DD Councils, operate in every state. AIDD, now
under the umbrella of the Administration for Community Living (ACL)
within DHHS, administers the DD Act programs Federal funds. AIDD
programs routinely ignore the DD Act, Olmstead and Medicaid law by
pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs. DHHS has been
unresponsive to complaints from families of persons with severe,
profound and extreme forms of developmental disabilities about AIDD
policies. DHHS has turned a blind eye to the tragic, but predictable,
results for many individuals when they are forced from their
specialized Medicaid certified and funded congregate care homes.
Independent oversight of Federal AIDD and DD Act programs is
desperately needed.
National Council on Disability (NCD) is an independent Federal
agency funded through DHHS appropriations. In October 2012 the NCD
released a 300+ page policy paper and related ``tool-kit'' calling for
the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes of four or more people. This NCD policy
paper and related toolkit calls on the broader advocacy community to
engage in advocacy efforts and lawsuits to evict people with I/DD from
their homes. Families and guardians of these affected individuals who
lack the physical and cognitive ability to speak for themselves have
repeatedly called upon NCD to reject their stance on forced
deinstitutionalization. NCD has been unresponsive to these families. As
an ``independent Federal agency charged with advising the President,
Congress, and other Federal agencies regarding policies, programs,
practices and procedures that affect people with disabilities'' NCD
should not be taking any position which tramples on the rights of a
portion of the disability community.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that CMS considers too large or too close to specialized care settings
are at risk of no longer being eligible for Medicaid Home and Community
Based Services (HCBS) funding, without regard for individual choice and
needs, as Olmstead and Medicaid requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
It will be a travesty if the Federal Government is successful in
pigeon-holing disability policy into a one-size-fits-all, eliminating
choice, while continuing to ignore Supreme Court clarifications within
Olmstead regarding the care of those with the most severe forms of
cognitive and developmental disabilities. We need an increasing array
of viable options for services and support for our most vulnerable, not
less.
In conclusion I call upon Congress, through appropriations' bill
language, to prohibit the Department of Health and Human Services and
their various programs use of Federal appropriations for
deinstitutionalization activities that result in the eviction of
eligible individuals with intellectual and other developmental
disabilities from DHHS licensed and funded facilities and homes,
without regard to individual choice, need, and safety.
______
Prepared Statement of the United Negro College Fund
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, thank you for the opportunity to provide written
testimony on behalf of UNCF (the United Negro College Fund) regarding
our fiscal year 2016 appropriations priorities. I am the President and
CEO of UNCF, and we are the Nation's largest higher education
organization serving students of color, perhaps best known by the
iconic motto--``A mind is a terrible thing to waste, but a wonderful
thing to invest in.'' We also represent the interests of 37 private
Historically Black Colleges and Universities (HBCUs) that are members
of UNCF.
In our 71-year history, UNCF has raised more than $4 billion in
scholarship aid to help more than 400,000 students of color attend
HBCUs and 900 other colleges and universities across the country to
obtain the education they need to excel in the 21st century economy.
UNCF's largest scholarship is the Gates Millennium Scholarship offered
to high-achieving, low-income African American, American Indian/Alaska
Native, Asian Pacific Islander and Hispanic American students. UNCF has
awarded Gates Millennium Scholarships across the country, including $40
million to help 749 students from Missouri and Washington State, earn
college degrees. We have awarded $239 million to 4,325 Gates Scholars
to attend institutions in the States the Subcommittee represents.
UNCF's core priority, however, remains its partnership with the
Nation's 37 private HBCUs. The money raised by UNCF has become even
more important today as HBCUs have suffered from a ``perfect storm'' of
Federal disinvestments since 2011. Limitations on Pell Grant
eligibility requirements, sequestration cuts to the Title III HBCU
Program and Parent PLUS Loan reductions have resulted in a severe loss
of Federal resources to HBCUs. Specifically, Pell Grant funding to
HBCUs fell by 17 percent ($172 million) between 2010 and 2013. In
addition, Parent PLUS loan revenues to HBCUs decreased $269 million in
just 2012 and 2013 alone. Accounting for the $39 million decline in
investments to the HBCU Title III Institutional Aid program since
fiscal year 2010, HBCUs, in the aggregate, have lost nearly $500
million in Federal education resources since fiscal year 2010. Despite
these financial hardships, HBCUs still provide enormous value for
students and the Nation.
HBCUs represent approximately 3 percent of all 2- and 4-year
nonprofit colleges and universities; enroll 10 percent of all African
American college students; confer 18 percent of bachelor's degrees
awarded to African Americans; and generate 25 percent of the bachelor's
degrees in science, technology, engineering and mathematics (STEM)
awarded to African Americans. HBCUs accomplish this while serving
students with greater need: 71 percent of students who attend HBCUs are
low-income students who depend on Federal Pell Grants for their
education, a substantially greater share than the 40 percent of
students at other nonprofit colleges and universities. At the same
time, total cost of attendance at HBCUs is 30 percent lower, on
average, than other nonprofit institutions.
UNCF and its member institutions appreciate the efforts the
Subcommittee has made to find the resources needed to restore some of
the sequestration cuts impacting HBCUs and the students we serve. We
hope that you will do more in the fiscal year 2016 budget cycle to
restore the remaining sequestration cuts made since 2013, turn off the
sequestration cuts that loom ahead, and make the additional investments
in postsecondary education that are essential to our Nation's
prosperity.
fiscal year 2016 appropriations priorities
Looking to fiscal year 2016, a national strategy to produce more
college graduates, boost our economy and enhance global competitiveness
must include greater investment in HBCUs. UNCF strongly encourages the
Subcommittee to support our highest priority items at the funding
levels listed below.
--UNCF urges the Subcommittee to appropriate $267 million in
discretionary dollars and sustain the already-appropriated $85
million in mandatory dollars for the Title III--Strengthening
Historically Black Colleges and Universities Program. These are
formula funds awarded to HBCUs for operating support and
essential academic services, and they are being put to good
use. For example, Spelman College received Title III funds to
establish the SpelBots (Spelman's Robotic Team), a winning
robotics initiative included in the National Science
Foundation's technology showcase. Please reinvest in Title III
and restore the $39 million in discretionary funds cut from the
program since fiscal year 2010.
--The HBCU Capital Financing Program finances low-risk Federal loans
to help HBCUs, especially private institutions, improve
facilities, infrastructure and technology. Investing in capital
projects not only enhances the educational environment for
students but also reinvigorates our communities and provides
much needed jobs. UNCF urges you to increase the appropriation
for loan subsidies to $25 million, which would leverage $390
million in annual loans to meet the infrastructure needs of our
institutions.
--Without Pell Grants, most HBCU students could not pay for the
college education that is essential in today's economy. I urge
you to fund at least a $5,960 maximum Pell award to help our
students persist and complete college. UNCF's Frederick D.
Patterson Research Institute has reported that need-based aid
increases college completion among low- and moderate-income
students. This aid is critical for African American students,
60 percent of whom rely on Pell Grants to attend college. In
addition to increasing the maximum award, I encourage you to
reinstate ``summer'' Pell Grants so students can earn their
college degrees faster and at a lower cost.
--UNCF supports the President's fiscal year 2016 request to designate
$60 million for Minority-Serving Institutions (MSIs) under the
First in the World program to bolster academic outcomes. Given
that half of the 459 fiscal year 2014 applications came from
MSIs, we recommend that Congress reserve not less than $60
million for MSIs so that this amount is a floor, not a ceiling,
on the resources for which MSIs may compete.
--I urge you to approve the College Opportunity and Graduation
Bonuses proposed in the President's budget, which would reward
institutions that enroll and graduate large numbers of low-
income students. UNCF recommends, however, that both the
numbers and percentages of low-income students graduating from
institutions are taken into consideration.
--Restore the Supplemental Educational Opportunity Grants program to
$748 million, provide $1.13 billion to Federal Work Study and
invest in new capital and funding for loan cancellations in the
Perkins Loan program. These campus-based aid programs support
school choice; fill in financial gaps after students reach
Direct Loan limits; leverage additional funds for financially
needy students through institutional matching requirements; and
reduce the amount of debt that low-income students must incur
to attend college.
UNCF's mission is to build a robust and nationally-recognized
pipeline of under-represented students who, because of UNCF support,
become highly qualified college graduates and to ensure that our
network of member institutions is a respected model of best practice in
moving students to and through college. The investments that the
Subcommittee makes in the key programs I have outlined are critical to
the ability of our member HBCUs to meet these goals.
Thank you for the opportunity to submit this testimony.
Sincerely.
[This statement was submitted by Dr. Michael L. Lomax, President
and CEO, United Negro College Fund.]
______
Prepared Statement of the United Tribes Technical College
United Tribes Technical College (UTTC) has for 46 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 a fully accredited institution. We are proud to be
preparing our students to participate in the new energy economy in
North Dakota and to be part of building a strong middle class in Indian
Country by training the next generation of law enforcement officers,
educators, medical providers, welders, technicians, and administrators.
We are governed by the five tribes located wholly or in part in North
Dakota. We are not part of the North Dakota State college system and do
not have a tax base or State-appropriated funds on which to rely. The
requests of the UTTC Board 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 $2.3 million
above the fiscal year 2015 level. These funds are awarded
competitively and distributed via formula. We are seeking a
change to the formula that is not so reliant on Indian Student
Count to avoid dramatic swings in annual awards.
--Forward Funding. We ask that the Section 117 Perkins funds, like
the other funds under the Carl Perkins Career and Technical
Education Act, be put on a forward funded basis.
--$30 million as requested by the American Indian Higher Education
Consortium for Title III-A (Section 316) of the Higher
Education Act, $4.3 million above the fiscal year 2015 level.
--Support the scheduled increase in the maximum Pell grant award from
$5,775 to $5,916.
Section 117 Perkins Funding.--We are extremely disappointed that
neither the fiscal years 2014 nor 2015 Appropriations Acts restored the
fiscal year 2013 sequestration to Section 117 Perkins even though
funding for the rest of the Perkins Act was restored. Perhaps Section
117 was overlooked as a source of job training as it is in the Higher
Education portion of the budget. 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.
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 relatively recent updates of our curricula to
meet job market needs. Indeed, the ramifications of the North Dakota
Bakken oil boom are apparent as we have seen faculty and students leave
education in pursuit of jobs in the Bakken region. We saw the need for
more certified welders in relation to the oil boom and have expanded
our certified welding program in response to the workforce need. We are
now able to train students for good paying in-demand welding employment
with a focus on career rather than just a job. Other courses reflect
new innovative approaches on energy auditing and Geographic Information
System Technology. UTTC is seeing increased interest in our online
programs of study and short term skill building training at the UTTC
Black Hills Learning Center, a distance learning site located at Rapid
City, SD. We are also working toward the establishment of an American
Indian Specialized Health Care Training Clinic on our established
Bismarck, ND campus.
Funding for United Tribes Technical College is a good investment.
We have:
--Renewed unrestricted accreditation from the North Central
Association of Colleges and Schools, for July 2011 through
2021, with authority to offer all of our full programs on-line.
We have 16 Certificate, 20 Associate, and three Bachelor degree
program. Five programs are fully developed and available as
online programs.
--Services including a Child Development Center, family literacy
program, wellness center, area transportation, BIE-funded K-8
elementary school, tutoring, counseling, family and single
student housing, and campus security.
--A projected return on Federal investment of 20-1 (2005 study).
--A semester retention rate of 68 percent and a graduate placement
rate of 79 percent. Over 45 percent of our graduates move on to
4-year or advanced degree institutions.
--Students from 49 tribes; 73 percent of our undergraduate students
receive Pell Grants.
--An unduplicated count of 605 undergraduate degree-seeking, 258
continuing education, and 42 dual credit enrollment students
for a total of 905 for 2014-2015.
--A dual-enrollment program targeting junior and senior high school
students, providing them an introduction to college life and
offering high school and college credits.
--A critical role in the regional economy. Our presence brings at
least $34 million annually to the economy of the Bismarck
region. A 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 $181,933,000 in
2012.
Forward Funding.--We ask that the Appropriations Committees provide
one-time funding for Section 117 Perkins to put it on a forward funded
basis. We do not know why it is not already forward funded, given that
the rest of the Perkins Act is forward funded. A number of years ago
Section 117 was moved to the Higher Education portion of the budget
even though it is authorized through the Perkins Act. Perhaps that has
something to do with it, although we note that many education programs
are forward funded. Forward funding allows planning for vital education
programs before the start of each school year, which is critically
important when appropriations are delayed and the government is funded
via Continuing Resolutions.
Title III-A (Section 316) Strengthening Institutions.--The Title
III-A Strengthening Institutions funding is very important for all the
tribal colleges. 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 other tribal
colleges serious issues of inadequate physical infrastructure.
We are constantly in need of additional student housing, including
family housing. With the completion of a Science, Math and Technology
building on our South Campus on land acquired with a private grant, we
urgently need housing for up to 150 students, many of whom have
families. While we have constructed three housing facilities using a
variety of sources in the past 20 years, approximately 50 percent of
students are housed in the 100-year-old buildings of what was Fort
Abraham Lincoln, as well as housing that was donated by the Federal
Government along with the land and Fort buildings in 1973. These
buildings require major rehabilitation. New buildings are actually
cheaper than rehabilitating the old buildings that now house students.
Pell Grants.--We support maintaining the Pell Grant program and
letting scheduled increases occur. We oppose the House Budget
Resolution that calls for a 10-year freeze on the program. This
resource makes all the difference in whether most of our students can
attend college. As noted above, 73 percent of our undergraduate
students receive Pell Grants.
The Duplication or Overlapping Issue.--As you know in March 2011,
the Government Accountability Office issued two reports regarding
Federal programs which may have similar or overlapping services or
objectives (GAO-11-474R and GAO-11-318SP). Funding from the BIE and the
DOEd's Carl Perkins Act were among the programs listed in the reports.
The full GAO report did not recommend defunding these programs; rather,
the possibility of consolidation of these programs was proposed to save
administrative costs. We are not in disagreement about possible
consolidation of our funding sources, as long as program funds are not
cut.
The Perkins funds supplement, but do not duplicate, the BIE funds.
Both sources of funding are critical to frugally maintaining our
institution. We actively seek alternative funding to assist with
academic programming, deferred maintenance, and scholarship assistance,
among other things. The need for career and technical education in
Indian Country is so great and the funding so small, that there is
little chance for duplicative funding. There are only two institutions
targeting American Indian/Alaska Native career and technical education
and training at the postsecondary level--UTTC and Navajo Technical
University. Combined, these institutions received less than $14.7
million in fiscal year 2015 Federal operational funds ($7.7 million
from Perkins; $6.9 million from the BIE). That is not an excessive
amount for two campus-based institutions who offer a broad array of
programs geared toward the educational and cultural needs of their
students and who teach job-producing career skills.
Thank you for your consideration of our requests.
[This statement was submitted by Leander ``Russ'' McDonald, PhD,
President, United Tribes Technical College.]
______
Prepared Statement of the University of Kansas Medical Center
Mr. Chairman and Members of the Subcommittee; thank you for the
opportunity to submit this statement regarding fiscal year 2016 funding
for the National Institutes of Health's Institutional Development Award
or ``IDeA'' Program. The IDeA program is funded by NIH's National
Institute of General Medical Sciences (NIGMS), and was authorized by
the 1993 NIH Revitalization Act (Public Law 103-43). I submit this
testimony on behalf of the Coalition of EPSCoR/IDeA States \1\, the
Kansas IDeA program, and the University of Kansas Medical Center. The
Coalition of EPSCoR/IDeA States respectfully requests that the
Subcommittee provide $310 million for the IDeA program in fiscal year
2016.
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\1\ Alabama, Alaska, Arkansas, Delaware, Guam, Hawaii, Idaho, Iowa,
Kansas, Kentucky, Louisiana, Maine, Mississippi, Missouri, Montana,
Nebraska, Nevada, New Hampshire, New Mexico, North Dakota, Oklahoma,
Puerto Rico, Rhode Island, South Carolina, South Dakota, Tennessee,
Utah, Vermont, Virgin Islands, West Virginia, and Wyoming
---------------------------------------------------------------------------
I would first like to provide some basic information about the IDeA
program. The IDeA program increases our Nation's biomedical research
capability by improving research in States that have historically been
less successful in obtaining biomedical research funds. Twenty-three
States and Puerto Rico are eligible. The program funds only merit-
based, peer-reviewed research that meets NIH's biomedical research
objectives. While IDeA was authorized by the 1993 NIH Revitalization
Act (Public Law 103-43), sizable increases in funding only began in
fiscal year 2000. The IDeA program then grew rapidly, due in large part
to the thoughtful actions of this Subcommittee. This initial funding
permitted the launch of two initial program elements: the COBRE and
BRIN/INBRE programs.
The first was the COBRE program or ``Centers of Biomedical Research
Excellence,'' which are research clusters targeting specific biomedical
research problems. The COBRE program is designed to increase the pool
of well-trained investigators in the IDeA States by expanding research
facilities, equipping laboratories with the latest research equipment,
providing mentoring for promising candidates, and developing research
faculty through support of a targeted multi-disciplinary center, led by
an established, senior investigator with expertise in the research
focus area of the center.
The second IDeA program was BRIN or ``Biomedical Research
Infrastructure Networks,'' which targeted key areas such as
bioinformatics and genomics, and facilitated the development of
cooperative networks between research-intensive universities and
primarily undergraduate colleges. The BRIN grants underwent competitive
renewals in 2004 and were funded under the new name of ``IDeA Networks
of Biomedical Research Excellence,'' or INBRE.
The INBRE programs are designed to increase the pipeline of
outstanding students and enhance the quality of science faculty in the
IDeA States by research-intensive networking with undergraduate
institutions. The INBRE program supports research infrastructure and
mentoring of young investigators, and prepares students for graduate
and professional schools as well as careers in the biomedical sciences
at participating institutions. As you can see, these two programs play
complementary roles in developing research capability and human capital
in biomedical fields in the IDeA States.
Finally, the IDeA program has established a third mechanism named
the IDeA- Clinical and Translational Research (IDeA-CTR) program. This
program encourages and supports IDeA States to develop infrastructure
for clinical and translational research, which is a key step in moving
basic science discoveries forward into clinical treatments.
Impact of the IDeA Program on Kansas
Since the year 2000, Kansas has received more than $220 million in
awards from the IDeA program. Those IDeA investments have greatly
enabled our investigators to secure National Institutes of Health
grants and more than double the amount of funding coming into Kansas.
The IDeA program has resulted in funding of 570 biomedical research
grants, supported 71 core biomedical research core facilities, and has
resulted in 1,152 new research related jobs.
The Kansas INBRE (K-INBRE) program consists of three research-
intensive universities and seven primarily undergraduate universities.
Over its 14-year history, the K-INBRE has provided significant benefits
to the State of Kansas, including training a skilled workforce and
helping to drive scientific commercialization potential. Over $47.4
million from the NIH, numerous Kansas Universities, as well as
philanthropies and industry support to the K-INBRE has benefitted
Kansas Universities by significantly aiding Kansas's faculty to
increase NIH funding from $50.3 million (2000) to $109.4 million
(2014). The K-INBRE has significantly improved in the dissemination of
knowledge throughout Kansas via videoconferencing, symposia and
increased intra- and inter-State collaborations.
The K-INBRE was responsible in establishing the first
bioinformatics cores in Kansas on three institutional campuses and been
instrumental in preparing for new advances in increased medical
informatics and translational research. The K-INBRE has also assisted
with building the Kansas biomedical science industry by facilitating
collaborations between academia and industry. This is critical, as the
growth of the Kansas bioscience sector is climbing at more than twice
the national rate.
Finally, the K-INBRE has contributed to building a skilled
workforce for Kansas by assisting with the building of the biomedical
workforce in Kansas, and by supporting research training for over 900
undergraduates, numerous post-docs and new faculty investigators.
Importantly, the K-INBRE has helped broaden student research
participation of under-represented groups (rural and ethnic). In 2014
alone, 176 graduate and undergraduate students throughout the State of
Kansas were supported by K-INBRE funds. More importantly, these funds
have broadened research participation by under-represented rural and
ethnic groups, and NIH-level research infrastructure has been initiated
in seven of ten campuses within the K-INBRE network.
Overall, the implementation of the K-INBRE program facilitates the
generation of new strengths in Cell and Developmental Biology in the
State of Kansas, and ultimately contributes to the development of new
tools and strategies for improving human health.
Kansas researchers are currently involved in six active COBRE
awards. Three of these COBREs are located at University of Kansas
Medical Center in Kansas City, KS. The Molecular Regulation of Cell
Development and Differentiation COBRE has established a thriving
multidisciplinary research group focused on the molecular regulation of
cell development. This COBRE has been highly successful in helping
numerous young faculty obtain NIH funding. The purpose of the Nuclear
Receptors in Liver Health and Disease COBRE has been to establish a
recognized center to study liver function in health and disease. This
COBRE has also been very successful at aiding young faculty in
obtaining NIH funding. It has also created a valuable ``liver bank''
from many strains of inbred mice. The objective of the Novel Approaches
for Control of Microbial Pathogens COBRE is to promote and enhance the
research capabilities of tenure track junior faculty members of
participating institutions in the State of Kansas with an emphasis on
inhibiting microbial pathogens. This COBRE has been critical in
enabling Kansas faculty to obtain over $52 million in NIH funding and
has established a highly utilized flow cytometry core facility at the
University of Kansas Medical Center.
The remaining three COBRE programs reside in Lawrence, Kansas at
the University of Kansas. The Center of Biomedical Research Excellence
in Protein Structure and Function conducts basic research in health-
related protein structure and function. By better understanding the
structure, function, and interaction of proteins present in human
cells, researchers are gaining a deeper understanding of how proteins
carry out critical functions within cells. This COBRE has helped 13
faculty establish independent NIH funding and two faculty supported by
this COBRE have gone on to receive national recognition for their
research.
The Center for Molecular Analysis of Disease Pathways (CMADP) COBRE
brings together junior and senior faculty from the physical,
biological, and pharmaceutical sciences at the University of Kansas and
other academic institutions in Kansas to conduct multidisciplinary
research to develop and implement cutting-edge technologies for
elucidating the genetic, chemical, and physical mechanisms of
biological processes involved in disease. This COBRE has established a
much needed Genome Sequence Core that provides state of the art
sequencing capabilities for researchers in Kansas.
Finally, the Center for Cancer Experimental Therapeutics (CCET)
COBRE brings together researchers from the University of Kansas
Lawrence campus, Kansas State University and the University of Kansas
Medical Center. The Center combines the resources and faculty of
Kansas' institutions to create the infrastructure needed to pursue
cancer-related research and experimentation at the interface between
chemistry and biology. This is the oldest of the COBRE programs in
Kansas and the CCET works to identify novel bioactive compounds that
will be useful basic biomedical research tools and potential
therapeutic agents. Scientists from the participating schools fight
cancer through research projects focusing on specific types of cancer
and the discovery of new anti-cancer drugs and therapies. This COBRE
has established two important research cores associated with medicinal
chemistry and high throughput screening, two key services that are
important for drug discovery. The CCET was also instrumental in
establishing a National Cancer Institute Designated Cancer Center at
the University of Kansas Medical Center in 2012.
Conclusion
We request that this committee recommend the program be funded in
fiscal year 2016 at $310 million. As you know, the EPSCoR/IDeA
Coalition has maintained that the IDeA program should constitute at
least 1 percent of the total NIH budget. This level of funding would
continue funding for COBRE and INBRE, provide funding for the IDeA
Program Infrastructure for Clinical and Translational Research (IDeA-
CTR) program, and provide co-funding which would allow researchers and
institutions to merge with the overall national biomedical research
community.
On behalf of the University of Kansas Medical Center, I express
gratitude to this Subcommittee for the efforts it has made over the
years to provide increased funding for IDeA, in particular this
committee's work to ensure the successful inclusion of a $50 million
increase for the program in fiscal year 2012. I hope that you will
continue to invest in this biomedical research program, which is so
important to almost half of the States in the Union. Every region of
the country has talent and expertise to contribute to our Nation's
biomedical research efforts--and every region of the country must
participate if we are to increase our Nation's biomedical research
capacity substantially. On behalf of the EPSCoR/IDeA Coalition, the
University of Kansas Medical Center and our partner institutions across
Kansas, I thank the Subcommittee for the opportunity to submit this
testimony.
[This statement was submitted by Douglas Wright, Ph.D., Professor
and Vice Chair, Principal Investigator, Kansas INBRE, Department of
Anatomy and Cell Biology, University of Kansas Medical Center.]
______
Prepared Statement of the U.S. Chamber of Commerce
Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to provide written testimony regarding fiscal year 2016
appropriations for the U.S. Department of Labor (``Labor Department''
or ``DOL''). The U.S. Chamber of Commerce is the world's largest
business organization representing the interests of more than 3 million
businesses of all sizes, sectors, and regions. Our members range from
``mom-and-pop'' shops and local chambers to leading industry
associations and large corporations.
Businesses play an exceedingly important role in ensuring that
Americans are able to enjoy a financially secure retirement. As private
employers, businesses of every size seek to maintain a long-held
commitment to providing voluntary benefits, such as defined benefit and
defined contribution plans, that support the welfare of their workers.
Financial sector businesses have also over the past several decades
innovated in ways making access to tax-deferred investment vehicles--
notably the individual retirement account (``IRA'')--a reality for
millions of American households. This private sector system has
contributed significantly to the retirement needs of millions of
seniors, and the Chamber and its members are committed to continuing
the success of the system and ensuring the long-term retirement
security of Americans.
It is precisely because of our commitment to protecting the
retirement security of America's workers that we have such serious
concerns about the Labor Department's impending rule re-proposal that
would expand the definition of a ``fiduciary'' under the Employee
Retirement Income Security Act (``ERISA'') of 1974. We are concerned
that the DOL's regulatory initiative will significantly increase costs
and reduce access to much-needed financial education and advice for
millions of workers and retirees.
It is hard to overstate the scope of the Labor Department's
original proposal in 2010. As the Chamber and many other commenters
noted at the time, the 2010 proposal would have seriously inhibited the
ability of plan participants to obtain valuable investment education,
and would have also had a particularly harmful impact on the IRA
market. Specifically, the rule would have made it either impossible or
cost prohibitive for a large number of investors with moderate
retirement assets to open or maintain an IRA, and to be able to work
with a financial professional on an ongoing basis. The limited
information currently available from the White House and the Labor
Department suggests that the re-proposed regulation will be similarly
broad, and will likely elicit many of these same concerns.\1\
---------------------------------------------------------------------------
\1\ See, e.g., White House Fact Sheet, ``Strengthening Retirement
Security by Cracking Down on Backdoor Payments and Hidden Fees,''
February 23, 2015 and ``FAQs: Conflicts of Interest Rulemaking'' at
http://www.dol.gov/featured/ProtectYourSavings/faqs.htm.
---------------------------------------------------------------------------
The Chamber believes that the DOL and the Administration have
failed to properly take into consideration the effectiveness of the
existing regulatory regime for broker-dealers and others who provide
retirement products and services to workers and retirees. Of particular
concern to us are the contents of an internal White House memo that was
recently made public, in which senior Administration officials argue
that ``consumer protections for investment advice in the retail and
small plan markets are inadequate and . . . the current regulatory
environment creates perverse incentives that ultimately cost savers
billions of dollars a year.'' \2\ Many of these same arguments were
recycled in the President's recent comments.
---------------------------------------------------------------------------
\2\ See White House memo from Council of Economic Advisers members
Jason Furman (Chair) and Betsey Stevenson http://www.scribd.com/doc/
253449711/WH-DOL-memo.
---------------------------------------------------------------------------
The Chamber fundamentally disagrees with the conclusions reached in
the White House memo regarding current regulation of market
participants, in particular broker-dealers who play a large role in the
IRA market. Indeed, we believe that the DOL and White House have failed
to take into account the important roles played by the Securities and
Exchange Commission (``SEC'') and the Financial Industry Regulatory
Authority (``FINRA'') in their oversight of broker-dealers. A recent
report lays out in detail the current comprehensive regulatory regime
that oversees broker-dealers and other financial professionals.\3\
---------------------------------------------------------------------------
\3\ See white paper from Morgan Lewis: ``Department of Labor
Retirement Initiative Fails to Consider Current Regulatory Regime,
Which Comprehensively Protects Investors, Including IRA Investors, and
Preserves Investor Choice.'' March 2015 http://www.morganlewis.com//
media/files/publication/morgan%20lewis%20title/white%20paper/
im_whitepaper_dolretirementinitiative_
march2015.ashx.
---------------------------------------------------------------------------
Despite the long-established roles of the SEC, FINRA, banking, and
insurance regulators to govern the conduct of financial professionals,
and of the Internal Revenue Service (``IRS'') to enforce IRA
requirements, the DOL on its own seeks to fundamentally alter the rules
governing how investment advice is provided with respect to nearly $15
trillion in capital, roughly half of which is held in IRAs. On behalf
of our members and their employees, we have serious doubts that the
Department of Labor is the proper regulatory agency to attempt such
broad regulation of financial services, especially for retail investors
in IRAs.
This concern is especially significant given that many of the
primary financial regulators are already focusing on areas in which the
White House and DOL claim there are regulatory shortcomings, notably in
the IRA rollover market. For example, FINRA issued new guidance less
than 15 months ago expanding the requirements for determining the
suitability of a rollover to an IRA.\4\ SEC Chair Mary Jo White
recently announced that the SEC could soon begin promulgating a
regulation to harmonize the suitability and fiduciary standards under
the securities laws, as authorized in the Dodd-Frank law.\5\ The Labor
Department is not acting to fill a void where there is insufficient
regulation--rather, it is promulgating a regulatory standard that could
well conflict with, or even trump, the actions of other regulators.
---------------------------------------------------------------------------
\4\ See FINRA Regulatory Notice 13-45, https://www.finra.org/sites/
default/files/NoticeDocument/p418695.pdf.
\5\ ``SEC's Mary Jo White Says Agency Will Develop Fiduciary Rule
Brokers'' Investment News March 17, 2015.
---------------------------------------------------------------------------
Indeed, SEC Commissioner Dan Gallagher expressed significant
reservations about the DOL regulatory process in a recent speech,
saying the reported coordination between SEC and DOL on DOL's fiduciary
rule `` . . . has been nothing more than a `check the box' exercise by
DOL designed to legitimize the runaway train that is their fiduciary
rulemaking.'' \6\ The DOL response to the Education and the Workforce
Committee's letter requesting the Department specifically document its
coordination efforts with the SEC did little to dispel this concern.\7\
The DOL response indicated merely that Secretary Perez and SEC Chair
White have had a handful of telephone calls and meetings over the past
year and a half to discuss the DOL rule, and that staff have had
``numerous'' phone calls and meetings.\8\
---------------------------------------------------------------------------
\6\ Speech of Commissioner Daniel M. Gallaher at ``The SEC Speaks
in 2015,'' February 20, 2015.
\7\ March 4, 2014 letter to Secretary Perez from Chairman Kline and
Subcommittee Chairman Roe.
\8\ March 16, 2015 response from Assistant Secretary Jayaratne to
Chairman Kline and Subcommittee Chairman Roe.
---------------------------------------------------------------------------
We are deeply concerned that the approach taken by the Labor
Department in the 2010 proposal, and presumably in the re-proposal,
relies on the prohibited transaction exemptions (``PTEs'') under ERISA
and the Tax Code. These extremely blunt regulatory tools are ill-suited
for nuanced regulation that preserves access to valuable investment
advice while preventing abuse.
The Chamber recently issued a report entitled ``Using PTEs to
Define a Fiduciary Under ERISA: Threading the Needle with Rope'' that
discussed these concerns in detail.\9\ The reality is that the
prohibited transaction regime administered by the DOL is a very
difficult and often unworkable method to effectively address the issues
that arise with an overly broad rule. While the Labor Department and
the Administration assure us that the re-proposal will provide some
narrow ``principles-based'' exemptions to these rules,\10\ real-world
experience with PTEs suggests that these narrow exemptions will not
prevent workers and investors from being denied access to advice.
---------------------------------------------------------------------------
\9\ The Chamber's report can be found at: http://
www.centerforcapitalmarkets.com/wp-content/uploads/2013/08/White-Paper-
Using-PTEs-to-Define-a-Fiduciary-Under-ERISA-2.19.15-FINAL.pdf.
\10\ White House Fact Sheet, ``Strengthening Retirement Security by
Cracking Down on Backdoor Payments and Hidden Fees,'' February 23,
2015.
---------------------------------------------------------------------------
For example, the DOL finalized prohibited transaction exemptions in
2011 that were intended to improve access to investment advice by
retirement plan participants. However, the DOL's own economic analysis
showed that even after the exemptions were adopted, participants would
still lose approximately $100 billion every year due to investments
errors from a lack of advice.\11\ Even if the White House's dubious
estimates are correct that ``conflicted'' advice results in $8-$17
billion of losses per year,\12\ the economic harm to American workers
and retail investors of being denied access to investment advice is
five to ten times greater, a figure that would increase even further if
the expanded fiduciary definition further restricts the availability of
advice.
---------------------------------------------------------------------------
\11\ See Investment Advice--Participants and Beneficiaries, 76 FR
66,136, 66,151-153 (October 25, 2011).
\12\ Fact Sheet, February 23, 2015.
---------------------------------------------------------------------------
In summary, Mr. Chairman, we are deeply concerned that the
Department of Labor's regulatory effort to expand the definition of a
fiduciary may ultimately harm the very working Americans it purports to
help by further limiting their access to, and choice of, investment
advice providers. We ask that the Committee use its authority to
require the Labor Department to provide detailed information on its
coordination with the SEC as a condition of receiving the funding
necessary to continue its work. On their current course, the DOL and
SEC could very well end up promulgating regulations that are
duplicative or conflict with one another. Additionally, given that the
DOL will likely require a significant amount of funding in order to
enforce an expanded definition of fiduciary, the Committee should also
seek answers as to whether the DOL will require additional resources in
future years in order to enforce these new rules. Active Congressional
oversight of these regulatory processes will be essential to ensure
American workers continue to benefit from our private retirement
system.
______
Prepared Statement of the U.S. Hereditary Angioedema Association
summary of fiscal year 2016 recommendations
_______________________________________________________________________
--Provide $32 billion for the National Institutes of Health (NIH)
--Support the NIH hereditary angioedema research portfolio
--Encourage the Centers for Disease Control and Prevention (CDC) to
advance hereditary angioedema education and awareness
_______________________________________________________________________
Thank you for the opportunity to present the views of the U.S.
Hereditary Angioedema Association (U.S. HAEA) regarding fiscal year
2016 funding for the National Institutes of Health (NIH) and the
Centers for Disease Control and Prevention (CDC). On behalf of U.S.
HAEA, I urge Congress to support hereditary angioedema research and
public awareness.
U.S. 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
U.S. HAEA recommends that Congress provide an overall funding level
of $32 billion for NIH in fiscal year 2016. In addition. U.S. HAEA
urges Congress to include recommendations in accompanying committee
reports emphasizing the importance of advancing HAE research per the
findings of the October 2014 scientific conference, Expanding
Boundaries of our HAE Knowledge.
In October 2014, the NIH National Institute of Allergy and
Infectious Diseases (NIAID), the National Center for Advancing
Translational Sciences (NCATS), and U.S. HAEA partnered on the state-
of-the-science conference, Expanding Boundaries of our HAE Knowledge.
This conference brought together top HAE researchers as well as other
medical researchers across disciplines in order to identify promising
avenues for future research. NIH should capitalize on this conference
by issuing requests for applications or other opportunities for HAE
research based on the findings of the conference.
As a rare disease community, HAE patients are also stakeholders of
the Office of Rare Diseases Research (ORDR) and may benefit from
programs like the Therapeutics for Rare and Neglected Diseases (TRND)
program. U.S. HAEA also urges Congress to robustly support NCATS and
the NIH rare disease portfolio in fiscal year 2016.
cdc public awareness and education to prevent hae deaths
In order to prevent deaths, eliminate unnecessary surgeries, and
improve patients' quality of life, it is critical that CDC pursue
programs to educate the public and medical professionals about HAE in
fiscal year 2016.
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 help patients lead a productive life. Education and
awareness is needed to reach patients and providers with this message.
Thank you for the opportunity to present the views of the HAE
patient community. I hope Congress will support research and education
on HAE.
[This statement was submitted by Anthony Castaldo, President, U.S.
Hereditary Angioedema Association.]
______
Prepared Statement of James Veach
Based on our family experience with pressure on the guardian to
agree to move a family member from an ICF/IID I support the testimony
of VOR.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mary Vigil
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Alissa Vilagi
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Mary A. Vitale
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of VOR
I. Introduction
VOR is a national nonprofit organization advocating for high
quality care and human rights for all people with intellectual and
developmental disabilities (I/DD).
VOR urges the Subcommittee to include language in its Labor, HHS,
and Education and Related Agencies Appropriations bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including but not limited to AIDD and
its programs, NCD, and CMS.
As explained below, we strongly believe such forced
deinstitutionalization activities are contrary to Federal law and cause
human harm. These deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics by some
HHS-funded agencies that result in the downsizing and closure of HHS-
licensed ICF/IID homes, some specialized group homes, sheltered
workshops and day programs. These HHS v. HHS deinstitutionalization
activities are a cruel and absurd use of Federal funding.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. Bill language prohibiting the very actions that lead to human
harm and are contrary to Federal law is desperately needed.
II. The Law: The Olmstead Decision, Medicaid Law, and the Developmental
Disabilities Assistance and Bill of Rights Act (DD Act) Protect
Choice Based on Individual Need
HHS-funded organizations pursuing forced deinstitutionalization
cite the landmark Supreme Court decision of Olmstead v L.C. (1999) as
justification for its position to close HHS homes. Like many
organizations that support deinstitutionalization, these Federal
agencies misread and misapply the Olmstead decision's requirements. The
Supreme Court is clear in its holding that the Americans with
Disabilities Act (ADA) requires individual choice before community
placement can be imposed and recognizes the need for specialized care:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community settings . .
. Nor is there any Federal requirement that community-based
treatment be imposed on patients who do not desire it.''
Olmstead, 527 U.S. 581, 601-02 (1999) (1999) (majority).
``As already observed [by the majority], the ADA is not
reasonably read to impel States to phase out institutions,
placing patients in need of close care at risk . . . `Each
disabled person is entitled to treatment in the most integrated
setting possible for that person--recognizing on a case-by-case
basis, that setting may be an institution' [quoting VOR's Amici
Curiae brief].'' Id. at 605 (plurality).
Likewise, Medicaid law and regulation requires that ICF/IID
residents be ``[g]iven the choice of either institutional or home and
community-based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42
U.S.C. Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
The DD Act, which authorizes for funding AIDD programs such as
Protection & Advocacy Agencies, DD Councils, and University Affiliate
Programs, and related Congressional history, support residential choice
and recognizes that individuals and their families are in the best
position to make care decisions:
``Individuals with developmental disabilities and their families
are the primary decisionmakers regarding the services and
supports such individuals and their families receive, including
regarding choosing where the individuals live from available
options, and play decisionmaking roles in policies and programs
that affect the lives of such individuals and their families.''
DD Act, 42 U.S.C. 15001(c)(3)(2000).
``[T]he goals expressed in this Act to promote the greatest
possible integration and independence for some individuals with
developmental disabilities may not be read as a Federal policy
supporting the closure of residential institutions'' [H. Rep.
103-442 (March 21, 1994)].
III. Using HHS Funds to Eliminate HHS-Supported Homes Causing Human
Harm: The Administration on Intellectual and Developmental
Disabilities (AIDD) and its State-based Developmental
Disabilities Assistance and Bill of Rights Act (DD Act)
Programs
It has been 15 years since Congress last reauthorized the DD Act.
Authorizations for DD Act appropriations expired in 2007; however,
Congress continues to fund these programs. DD Act programs, including
Protection & Advocacy (P&A), DD Councils, and University Programs,
operate in every State. AIDD, within HHS, administers the DD Act
programs.
Independent oversight of Federal AIDD and DD Act programs is nearly
non-existent.\1\ DD Act programs are using their public funds to
achieve dangerous deinstitutionalization, evicting vulnerable people
with I/DD from Medicaid-certified homes, disregarding individual choice
and the legal right to appropriate services, as required by the ADA (as
interpreted by the Olmstead decision) and Medicaid law, as outlined
above.
---------------------------------------------------------------------------
\1\ See, VOR Federal Comments Urging Objective Performance--Not
More Self-Reporting--of DD Act Programs (January 25, 2012) (vor.net/
images/VORCommentDDActEvaluation
Jan2012.pdf).
---------------------------------------------------------------------------
AIDD persists in its support for DD Act programs'
deinstitutionalization activities and even proposed a recommendation to
``[d]evelop and implement plans to close public and private
institutions,'' and ``[k]eep people with disabilities out of congregate
institutions,'' in collaboration with DOJ and The Arc (2011). Hundreds
of families and others objected; the recommendation has not yet been
finalized. Likewise, the national organizations for the three DD Act
programs have referred to families who select HHS-licensed homes (ICFs/
IID) as ``clueless'' and ``unaware,'' \2\ a view not shared by the
Supreme Court (see, Heller v. Doe, 509 U.S. 312, 329 (1993) (``. . .
close relatives and guardians, both of whom likely have intimate
knowledge of a mentally retarded person's abilities and experiences,
have valuable insights which should be considered during the
involuntary commitment process.'')).
---------------------------------------------------------------------------
\2\ June 14, 2010 and July 30, 2007 letters to Congress referring
to families as ``unaware'' and ``clueless,'' respectively.
---------------------------------------------------------------------------
With AIDD directive, State-level DD Act program
deinstitutionalization activities continue, exacting great harm on the
very people Congress entrusted these HHS-entities to protect.
In a recent example, Disability Rights Ohio (DRO), the State's
designated P&A, cited Olmstead and threatened a class action lawsuit
purportedly on behalf of thousands of Ohioans with intellectual and
developmental disabilities who receive care and support in licensed
State and private ICFs/IID, sheltered workshop, or day program settings
(July 1, 2014 letter to State officials). Without consulting with what
its authorizing legislation calls ``primary decisionmakers''--the
individuals and their families--DRO instead cites the experiences of
three individuals with disabilities to make the case that ``thousands''
are equally unsatisfied with their present situations. DRO's
allegations and threats of litigation, in part, prompted draconian
budget proposals that will force thousands of individuals with profound
disabilities from their homes, workplace, and day program settings.
In response to DRO allegations and threats, more than 18,000
families signed a petition objecting to the budget proposals and many
have testified prompting legislators to ask ``who does DRO speak for?''
Yet, as recently as March 26, 2015, DRO reiterated its threat, in
spite of the families' petition and testimony which makes clear the
widespread opposition to the budget proposals, writing, ``Without the
complete package of reforms laid out in the proposed budget, there
would be no foundation for a future agreement and no alternative for
class members but to pursue their claims in court.'' (March 26, 2015
letter to State officials).
Lawsuits have been a favorite tool of P&As over the years, so DRO's
fear mongering comes as no surprise. Since 1996, more than fifteen (15)
P&A class action lawsuits for closure (not relating to conditions of
care) and other deinstitutionalization tactics have been pursued over
the objection of residents and their families. The P&A class action
lawsuits are a particularly egregious use of Federal funds; they equate
HHS suing itself because the targets of these HHS-funded lawsuits are
HHS/Medicaid-licensed ICFs/IID.
AIDD and its State-based programs persist in their ideological
devotion to community placement despite reports of hundreds of deaths
in Georgia (Augusta Chronicle, March 2015); 1,200 ``unnatural and
unknown'' deaths in New York (New York Times, 2011-2012); a risk of
mortality in community settings of up to 88 percent in California (peer
reviewed studies, 1996-2005); more than 100 deaths in Connecticut
(Hartford Courant, March 2013); 53 deaths in Illinois (Belleville News-
Democrat, June 27, 2012); hundreds of deaths in the District of
Columbia (Washington Post, reports since 1999); plus many more reports
of abuse, neglect and death across the majority of all States (see e.g,
Widespread Abuse, Neglect and Death in Small Settings Serving People
with Intellectual Disabilities (VOR, 2015)).
IV. Using HHS Funds to Eliminate HHS-Supported Homes: National Council
on Disability
The National Council on Disability (NCD) is an HHS-funded,
independent Federal agency that advises the President, Congress, and
other Federal agencies on issues affecting people with disabilities.
On October 23, 2012, NCD released a 300-page policy paper and
related toolkit calling for the closure of residential homes for people
with I/DD, arbitrarily targeting residential homes for four or more
people. NCD spent nearly $150,000 in Federal funds to prepare and
publish ``Deinstitutionalization: Unfinished Business,'' calling on the
broader advocacy community to engage in advocacy efforts and lawsuits
to evict people with I/DD from their homes.
NCD did not consult with the individuals who could be evicted from
their homes, nor their families and legal guardians. Instead, NCD
accuses these caring families and guardians of violating their family
members' civil rights for choosing a care setting of four or more
people. NCD has since received more than 350 letters from families
opposing forced deinstitutionalization.
NCD's support for deinstitutionalization is contrary to Federal law
and reckless. ICFs/IID have an array of services not often available
elsewhere (e.g., on-site medical care, dental care, other specialties,
and involvement in their broader communities). As discussed above,
tragedies are predictable when residents are separated from life-
sustaining supports.
V. Centers for Medicare & Medicaid Services (CMS) Rule on Eligible Home
and Community-Based Settings (HCBS) Narrows Options and Runs
Counter to the Americans with Disabilities Act (ADA)
Last year, CMS finalized a new regulation (``rule'') that defined
settings which qualify as ``home and community-based'' for the purpose
of receiving Medicaid HCBS funding. Individuals living in settings
deemed too ``congregate'' or too close to ICFs/IID would not be able to
continue to receive necessary HCBS supports. According to CMS, along
with its overarching goal ``to improve Medicaid HCBS, we seek to ensure
that Medicaid is supporting needed strategies for States in their
efforts to meet their obligations under the ADA and the Supreme Court
decision in Olmstead v. L.C., 527 U.S. 581 (1999).'' [79 FR 11 (Jan.
16, 2014)].
The ADA, however, forbids public entities from excluding or denying
individuals with disabilities equal opportunity to receive program
benefits and services, and must provide services, programs and
activities in the most integrated setting appropriate to the needs of
qualified individuals with disabilities. [Olmstead at 6, citing the
ADA, 28 CFR Sec. 35.130(d) (1998)]. The new CMS rule defines
``community'' so narrowly that it will disqualify certain community
homes, essentially redefining them as ``institutions'' for the purpose
of HCBS funding eligibility. In so doing, CMS has effectively denied
individuals with disabilities access to the very services they want and
need by disqualifying some community settings that are in fact ``the
most integrated setting appropriate to the needs of qualified
individuals with disabilities,'' in direct violation of ADA.
VI. Solution and Conclusion
HHS-funded agencies should not be allowed to advance an ideological
agenda in support of evicting eligible people from HHS-licensed homes,
contrary to the DD Act, Medicaid law, and the ADA/Olmstead. Such
actions are a cruel and absurd use of Federal funding that is exacting
great harm on our Nation's most vulnerable citizens, and contrary to
societal values which respect individual and family decisionmaking.
Please support language to prohibit the use of HHS appropriations
in support of deinstitutionalization activities which evict eligible
individuals with I/DD from HHS-licensed and funded homes. No Federal
agency should define ``choice'' so narrowly and illegally as to
disenfranchise the most vulnerable segment of our disabled population.
______
Prepared Statement of John Stephen Waldo
I am an 84 year old man writing with personal but somewhat distant
knowledge of my nephew aged 55 who was born in 1958 with a healthy body
but with a brain damaged suchwise that the body continues to function
well, but his thinking and social capabilities never developed beyond
that of a two o to three year old child.
*With considerable effort his parents raised and cared for him,
along with his six very capable siblings, till he approached the age to
``go to school.'' Sadly but with determination to do the best for him,
they placed him in a State Institution (Louisiana) while remaining his
legal guardians. There, with their regular visits and less so those of
his siblings, he lived along with other variously disabled residents a
healthy, largely contented, busy within the limits of his abilities,
and often enough clearly happy life. The parents were gratified to find
that their son did so well in his new surroundings, clearly better than
he had when still living in his home. The surroundings with the other
``disabled residents'' along with the staff's direction made possible
many things not possible in their life at home.
When his parents passed away about 10 years back, an older sister
(my niece) assumed his guardianship. Those siblings who remained in the
local area were her back-up. Some 5 years back Federal and/or state
legislation or regulations made it necessary to move him from this
rather large institution to a much smaller community oriented setting.
This placed much greater responsibility for management and presence on
his guardian and family, as also occurred with the families of the
other two other residents. The time of adapting was not easy, but
apparently both the disabled and the families involved seem to have
come to an acceptable way of managing and living.
I personally know of the above from my contacts with my disabled
nephew over the years when he was brought to very occasional family
reunions by his father, and in more recent years through phone calls or
emails with my niece, his guardian, and also conversations with some of
his other siblings. I have myself most of my adult life distant from
Louisiana.
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decisionmakers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Karen Weaver
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Edward D. Wentrcek
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Kristen Wentrcek
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Patricia T. Wentrcek
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AAIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community settings . .
. Nor is there any Federal requirement that community-based
treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AAIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AAIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
My brother has neither the mental or physical capabilities to exist
in a group home with questionable supervision and lack of a staff
trained in many disciplines. The State supported living center is the
least restrictive and most humane situation for people with similar
disabilities. It is their home in every sense of the word.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Robert L and Alice J. White
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Richard J. Williams and Sandra K. Williams
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision-makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
``[g]iven the choice of either institutional or home and community-
based services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization: Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision-makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______
Prepared Statement of Sue Yacovissi
Please urge the Subcommittee to include language in its Labor, HHS
and Education and Related Agencies bill that expressly PROHIBITS the
use of appropriations for any HHS program in support of activities
which attempt to downsize or close a Medicaid-licensed Intermediate
Care Facility for Individuals with Intellectual Disabilities (ICF/IID)
or any other Medicaid-licensed settings serving people with
intellectual disabilities, unless the purpose of action is to remedy
systemic abuse.
I believe they are misusing the intention of Olmstead--basically
rewriting what the Supreme Court language intention was--so they can
control the flow of the money into directions they approve. Forced
deinstitutionalization is basically forced removal of specialized
services for the most vulnerable of the DD population. It is placing a
specific language of agenda--that if the DD population wants services--
they can have ``choice''--but only the ``choice'' that is dictated to
them through funding and through idiotic legal suits.
I have a daughter that receives her highly specialized level of
care services through an ICF. She spent quite a few of her earlier
years in community waiver services. The ``community'' waiver services
do not provide the level of care that she currently requires. That
simple. I am her advocate--her voice. She requires a higher level of
services--this is in her medical record over a period of time--She
qualifies for the Medicaid-licensed facility where she receives an
outstanding level of care. She also has a large degree of ``self-
determination rights'' where appropriate. She has ``choice'' written
into her plan of care how she spends her time in the evening and
weekends. She has ``choice'' in whether she takes a bath each day or
can space it out. These are just 2 simple examples of how she still has
a level of ``choice or self-determination'' in her daily life--in her
daily level of activities.
Please stop this foolishness of government agencies trying or
actually redirecting the flow of money to the agenda that they see fit.
I am the advocate for my daughter. These government agencies--they just
want my daughters money for their own agenda. I disagree strongly with
that. Waiver services are a good program--but to take government money
and use legal means to take away specialized care of services to the
most vulnerable of the developmental disability population is absurd.
And to require these individuals to take a downsized version of their
plan of services--because of civil rights--that civil right argument to
me does not make a lick of sense.
Sue Yacovissi
mom
______
Prepared Statement of Keith Zimmerman
I am writing to urge that the Subcommittee to include language in
its Labor, HHS, and Education and Related Agencies bill that expressly
prohibits the use of appropriations for any HHS program in support of
activities which attempt to downsize or close a Medicaid-licensed
Intermediate Care Facility for Individuals with Intellectual
Disabilities (ICF/IID) or any other Medicaid-licensed settings serving
people with intellectual disabilities, unless the purpose of the action
is to remedy systemic abuse.
Several HHS agencies use some of their Federal funding in support
of forced deinstitutionalization, the elimination of specialized
services for people with I/DD, including AIDD and its programs, NCD,
and CMS, contrary to Federal law and causing human harm.
These HHS-funded deinstitutionalization activities, including
advocacy, lobbying, class action lawsuits, and other tactics result in
the downsizing and closure of HHS-licensed ICF/IID homes, some
specialized group homes, sheltered workshops and day programs.
These HHS v. HHS deinstitutionalization activities are a cruel and
absurd use of Federal funding.
Often citing the Supreme Court's Olmstead decision, forced
deinstitutionalization is actually counter to Olmstead which only
required community placement when such placement is not opposed by the
individual. The Court also stated:
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle or benefit from community
settings...Nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.''
The Developmental Disabilities Assistance and Bill of Rights Act
(DD Act), which authorizes for funding AIDD programs, such as
Protection & Advocacy, DD Councils and University Affiliated Programs,
does not support forced deinstitutionalization and states that
individuals and their families are the ``primary decision makers''
regarding services, supports and policies (42 U.S.C. 15001(c)(3)(2000).
Medicaid law and regulation requires that ICF/IID residents be
given the choice of either institutional or home and community-based
services.'' 42 C.F.R. Sec. 441.302(d)(2); see also, 42 U.S.C.
Sec. 1396n(c)(2)(C) and 42 C.F.R. Sec. 441.303.
AIDD programs routinely ignore the DD Act, Olmstead and Medicaid
law by pursuing lawsuits and lobbying in support of the elimination of
specialized care settings, including ICFs/IID, other specialized
facilities, sheltered workshops, and day programs.
NCD released a 300-page policy paper and related toolkit calling
for the closure of residential homes for people with I/DD, arbitrarily
targeting residential homes for four or more people.
``Deinstitutionalization : Unfinished Business'' calls on the broader
advocacy community to engage in advocacy efforts and lawsuits to evict
people with I/DD from their homes.
CMS' new Federal regulation defines ``Home and Community-Based
Services'' so narrowly that specialized and innovative care settings
that are deemed to large or too close to specialized care settings are
at risk of no longer being eligible for Medicaid HCBS funding, without
regard at all for individual choice and needs, as Olmstead and Medicaid
requires.
Tragedies are widespread and predictable when fragile citizens are
removed from specialized care. The legally-protected rights of families
and legal guardians to serve as primary decision makers are routinely
ignored. The Labor, HHS, and Education and Related Agencies
appropriations bill must include language prohibiting the use of HHS
funding for forced deinstitutionalization which separates individuals
with I/DD from the specialized care and settings they require without
regard to individual choice and need, contrary to Federal law and
causing human harm.
VOR, a national nonprofit organization advocating for high quality
care and human rights for all people with I/DD, has submitted written
testimony for the record with a consistent request. I support VOR's
testimony.
______