[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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
                 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\
---------------------------------------------------------------------------
    \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\
---------------------------------------------------------------------------
    \5\ 2015 Alzheimer's Diesease Facts and Figures: http://
www.alz.org/facts/downloads/facts_figures_2015.pdf.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \8\ American Association of Colleges of Nursing. (2015). 2013-2014 
Enrollment and Graduations in Baccalaureate and Graduate Programs in 
Nursing. Washington, DC.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
  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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
   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\
---------------------------------------------------------------------------
    \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).
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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).
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
    \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).
---------------------------------------------------------------------------
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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
                               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.
---------------------------------------------------------------------------
    \1\ Http://www.health.state.mn.us/divs/orhpc/workforce/dt/
dtlegisrpt.pdf.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \2\ Http://familiesusa.org/press-release/2015/families-usa-
proposes-health-reform-20.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \3\ (Http://ndaonline.org/position-on-access-to-care-and-emerging-
workforce-models).
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \1\ AHA Annual Survey, Health Information Technology Supplement 
(2013).
---------------------------------------------------------------------------
    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).
---------------------------------------------------------------------------
                       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.
---------------------------------------------------------------------------
    \1\ Http://www.asbmb.org/asbmbtoday/201403/PresidentsMessage/.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \**\ 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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \1\ Http://www.hormone.org/hormones-and-health/the-endocrine-system 
Accessed March 19, 2015.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
  --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\
---------------------------------------------------------------------------
    \3\ Https://www.endocrine.org/news-room/current-press-releases/gut-
microbial-mix-relates-to-stages-of-blood-sugar-control Accessed March 
19, 2015.
---------------------------------------------------------------------------
  --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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
    \6\ Eric Seaborg, ``Family History.'' Endocrine News, Feb. 2015. 
15-17.
---------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
    \7\ Http://report.nih.gov/success_rates/Success_ByIC.cfm Accessed 
March 19, 2015.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \1\ CDC's Division of Vector-Borne Diseases Factsheet, http://
www.cdc.gov/ncezid/dvbd/pdf/dvbd_factsheet.pdf.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \2\ Data Hound (Berg J). Minding the Gap. Data Hound Blog, 
Sciencetopia. May 15, 2014.
---------------------------------------------------------------------------
    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
                                                         -----------------------------------------------------------------------------------------------
                                                           2004    2005    2006    2007    2008    2009    2010    2011   2012  2013  2014  2015e  2016e
--------------------------------------------------------------------------------------------------------------------------------------------------------
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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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?
---------------------------------------------------------------------------
    \2\ Morris, Z. S. et al. doi: 10.1258/jrsm.2011.110180.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \1\ 2014 U.S. Renal Data System Annual Report.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
                   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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
                       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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \8\ Mary Kay's Truth About Abuse. Mary Kay Inc. (May 12, 2009).
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \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:
---------------------------------------------------------------------------
    \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 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
ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½
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
ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½
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
ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½
 
    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
ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½
 
      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.
---------------------------------------------------------------------------
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:

------------------------------------------------------------------------
 
------------------------------------------------------------------------
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
------------------------------------------------------------------------

            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.
---------------------------------------------------------------------------
    \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.
                                 ______