[Senate Hearing 117-]
[From the U.S. Government Publishing Office]
DEPARTMENT OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2021
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U.S. Senate,
Subcommittee of the Committee on Appropriations,
Washington, DC.
[Clerk's note.--The subcommittee was unable to hold
hearings on departmental and nondepartmental witnesses. The
statements and letters of those submitting written testimony
are as follows:]
DEPARTMENTAL WITNESSES
Prepared Statement of the America's Public Television Stations and
the Public Broadcasting Service
On behalf of America's 159 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 $515 million in two-year
advance funding for the Corporation for Public Broadcasting (CPB) in
fiscal year 2023, $20 million for the Public Television Interconnection
System in fiscal year 2021 and $30 million for the Ready To Learn
program at the Department of Education in fiscal year 2021.
Corporation for Public Broadcasting: $515 million (fiscal year 2023)
two-year advance funded
Public television plays a key role in educating our children;
providing job training; preserving our culture and democracy; and
keeping Americans informed, safe and healthy. Federal funding for CPB
makes these services available to all Americans, including those in
rural and underserved areas, and this funding enjoys the overwhelming
support of the American people. At about $1.40 per person per year,
this funding provides an enormous return on investment for all
Americans.
Yet these vital community-based services were level-funded at $445
million for almost a decade--resulting in an approximate $100 million
in lost purchasing power.
Recognizing this loss, last year Congress increased the forward
funded fiscal year 2022 appropriation for CPB by $20 million. Public
television greatly appreciates that much-needed increase.
While public broadcasting is grateful for this increase, without
additional increase going forward, the public broadcasting system would
still be nearly $80 million, in inflation-adjusted dollars, behind
where the system was 10 years ago.
Public broadcasting respectfully requests that Congress take
another substantial step toward securing our current and future public
service goals in the fiscal year 2021 appropriations process.
The $515 million that public broadcasting is requesting in fiscal
year 2021 for fiscal year 2023 will help continue to restore lost
purchasing power and enable local stations to leverage advancements in
technology and make investments in the future that will educate more
children and adults, further enhance public safety and expand the civic
leadership work of local stations.
Given the success of public media, and its potential to do so much
more for so many, it is sound public policy to increase Federal funding
for this valuable service that provides an exceptional return on
investment.
education
Perhaps now, more than ever as the nation faces unprecedented
times, and families all across America are seeking ways to continue
educating their children while isolated at home, the power of public
media to serve as the nation's largest classroom has never been so
important.
Local stations have always served as the nation's largest
classroom, meeting their communities' lifelong learning needs by
providing the highest quality educational content and resources on
multiple media platforms and in-person. That content is available to
all Americans for free, delivered directly into their homes, no matter
how they receive their television programming.
Public television's educational broadcast content which has helped
more than 90 million pre-school age children get ready to learn and
succeed in school is also critical in keeping kids educated and engaged
in learning while the majority of Americans are now homeschooling due
to the COVID-19 pandemic.
Beyond the iconic, proven educational programming, PBS, in
partnership with local public television stations and school districts
provides additional content directly to classrooms and homes through
PBS Learning Media--which provides access to tens of thousands of State
curriculum-aligned digital learning objects--including videos,
interactives, lesson plans and more--for use in K-12 classrooms and at
home. Content is sourced from the best of public television in addition
to material from the Library of Congress, National Archives, NASA and
other high-quality sources.
Additionally, local public television stations throughout the
country have partnered with PBS to bring a first-of-its kind, free PBS
KIDS 24/7 channel and live stream to their communities--providing kids
throughout the country with the highest level of educational
programming, available through local stations any time, over-the-air
and streaming. During the COVID-19 pandemic, many stations are using
this expanded broadcast capacity to directly serve families and
students from Pre-K-12 with state standards aligned educational
content.
Public television stations are also leaders in adult education.
Public television operates the largest nonprofit GED program in the
country, helping tens of thousands of second-chance learners earn their
high school equivalency degree. In addition, public television stations
are leaders in workforce development, including the retraining of
American veterans by providing digital learning opportunities for
training, licensing, continuing education credits and more.
partners in public safety
Public broadcasting stations throughout the country are leading
innovators and essential partners to local public safety officers. In
partnership with FEMA, the public television interconnection system
supports the Wireless Emergency Alert (WEA) system that enables cell
subscribers to receive geo-targeted text messages in the event of an
emergency--reaching citizens wherever they are. The February 2019
Report from the FEMA National Advisory Council on Modernizing the
Nation's Public Alert and Warning System specifically recommends,
``Encouraging use of public media broadcast capabilities to expand
alert, warning, and interoperable communications capabilities to fill
gaps in rural and underserved areas.''
In addition, and separate from the WEA system, local public
television stations' digital infrastructure and spectrum enable them to
provide state and local officials with critical emergency alerts,
public safety, first responder and homeland security services and
information during emergencies through a process known as datacasting.
Datacasting uses broadcast spectrum to send encrypted data and video to
first responders with no bandwidth constraints.
In partnership with local public television stations and local law
enforcement agencies, the U.S. Department of Homeland Security (DHS)
has conducted several successful pilots throughout the country that, in
addition to other local initiatives, prove the effectiveness of
datacasting in a range of uses cases including: flood warning and
response; enhanced 911 responsiveness; over-water communications;
faster early earthquake warnings; multiagency interoperability; rural
search and rescue; high profile, large event crowd control; and
assistance with school safety, including in areas that lack broadband
or LTE services.
As a result of the successful pilots, the DHS Science and
Technology Directorate has partnered with America's Public Television
Stations to maximize and promote datacasting technology and the
opportunity to partner with local public television stations in
communities nationwide.
To support this nationwide effort, local public television stations
have committed to reserve up to 1 megabit per second of their spectrum
for the First Responder Network Authority (FirstNet).
Additionally, stations are increasingly partnering with their local
emergency responders to customize and utilize public television's
infrastructure for public safety in a variety of critical ways, with
many serving as their states' Emergency Alert Service (EAS) hub for
weather and AMBER alerts.
providing civic leadership
Public television strengthens the American democracy by providing
citizens with access to the history, culture and civic affairs of their
communities, their states and their country. As the nation grapples
with the COVID-19 pandemic, public television is providing essential
front-line coverage of the issue to arm citizens with the facts they
need to stay healthy and information on where they can turn for help if
they need it.
For the 17th year in a row, PBS was ranked the most trusted among
national institutions. That trust is more important than ever. At a
time when inaccurate information could endanger people's lives,
Americans can tune into their local public television station or view
their online resources for trusted information that could help keep
them safe.
Local public television stations often serve as the state-level
``C-SPAN'' covering state government actions. Local stations also
provide more public affairs programming, forums for discussion of local
issues such as the opioid crisis, local history, arts and culture,
candidate debates, agricultural news, and citizenship information of
all kinds than anyone else. What truly sets public television stations
apart is that stations treat their viewers as citizens rather than
consumers.
public broadcasting is a smart investment
All of this public service is made possible by the Federal funding
to CPB. This Federal investment sustains the public service missions of
public television, which are distinct from the mission of commercial
broadcasting and will not be funded by private sources, as the
Government Accountability Office concluded in a 2007 study commissioned
by Congress.
The need for Federal investment is particularly acute in small-town
and rural America, where lower population density, a lack of corporate
and philanthropic support, and challenging topography make the
economics of local television and public service more challenging. As a
result, public broadcasters are sometimes the only local broadcaster
serving rural communities--and only with the help of the Federal
investment.
For all stations, Federal funding is the ``lifeblood'' of public
broadcasting, providing indispensable seed money to stations to build
additional support from state legislatures, foundations, corporations,
and ``viewers like you.''
For every dollar in Federal funding, local stations raise six
dollars in non-Federal funding, creating a strong public-private
partnership providing a valuable return on investment and supporting
approximately 20,000 jobs across America.
And yet, until last year, this critical funding remained flat for a
decade, forcing stations to make difficult programming, staffing and
service decisions as operational costs rose with inflation, while CPB
funding did not. Despite this severe financial constraint, local public
television stations have continued their deep commitments to the
communities they serve. If CPB funding had kept up with the rate of
inflation over the last 10 years, CPB would be funded at $543 in fiscal
year 2023.
The $515 million that public broadcasting is requesting in fiscal
year 2023 is both prudent and necessary for the continued health of
local stations and the public broadcasting system as a whole--and for
long-delayed enhancements of the essential education, public safety and
civic leadership services described above.
two-year advance funding
Two-year advance funding is essential to the mission of public
broadcasting. This longstanding practice, proposed by President Ford
and embraced by Congress in 1976, establishes a firewall insulating
programming decisions from political interference, enables the
leveraging of funds to ensure a successful public-private partnership,
and provides stations with the necessary lead time to plan in-depth
programming and accompanying educational materials--all of which
contribute to extraordinary levels of public service and public trust.
Local stations leverage the two-year advance funding to raise
state, local and private funds, ensuring the continuation of this
strong public-private partnership. These Federal funds act as the seed
money for fundraising efforts at every local station, no matter its
size. Advance funding also benefits the partnership between states and
stations since many states operate on two-year budget cycles.
Finally, the two-year advance funding mechanism gives stations and
producers, both local and national, the critical lead time needed to
raise the additional funds necessary to sustain effective partnerships
with local community organizations and engage them around high-quality
programs. Producers like Ken Burns spend years developing programs like
The Vietnam War and Country Music,. It would be impossible to produce
this in-depth programming and the curriculum-aligned educational
materials that accompany it without the two-year advance funding.
Public Television Interconnection: $20 million
The public television interconnection system is the infrastructure
that connects PBS and national, regional and independent producers to
local public television stations around the country. The
interconnection system is essential to bringing public television's
educational, cultural and civic programming to every American
household, no matter how rural or remote. Without interconnection,
there is no nation-wide public media service. The interconnection
system is also critical for public safety, providing key redundancy for
the communication of presidential alerts and warnings, and ensuring
that cellular customers can receive geo-targeted emergency alerts and
warnings.
Congress has always provided Federal funding for periodic
improvements of the interconnection system. In fiscal year 2018,
Congress moved to fund interconnection for public broadcasting on an
annual, rather than decennial, basis to enable dynamic, incremental
upgrades in accord with increasingly rapid advances in technology.
Public television seeks level funding of $20 million for
interconnection in fiscal year 2021.
Ready To Learn: $30 million (Department of Education)
The U.S. Department of Education's Ready To Learn (RTL) competitive
grant program, reauthorized in the Every Student Succeeds Act, uses the
power of public television's on-air, online, mobile, and on-the-ground
educational content to build the literacy and STEM skills of children
between the ages of two and eight, especially those from low-income
families.
Through their RTL grant, CPB and PBS deliver evidence-based,
innovative, high-quality transmedia content to improve the math and
literacy skills of high-need children. CPB, PBS, and local stations
have ensured that the kids and families that are most in need have
access to these groundbreaking and proven effective educational
resources. In addition to children, this outreach focuses on adults
that care for kids to empower and help them understand the important
role they play in their children's educational success.
RTL investments have supported the production and academic rigor of
PBS KIDS series: Molly of Denali, Peg + Cat, SuperWhy!, Martha Speaks,
Odd Squad and other iconic programming for children.
But this investment does not solely rely on trusted, educational
children's programming. CPB, PBS, and local public television stations
employ a national-local model to reach parents, teachers, and
caregivers on-the-ground in communities to help them make the most of
these media resources locally. These include television, online and
mobile apps, digital technology, mobile learning labs and on the ground
events that provide valuable content and support to local school
districts, county non-profits, preschools, homeschools, Head Start and
other daycare centers, libraries, museums, and Boys and Girls Clubs,
among others.
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. Since 2005, more
than 100 research and evaluation studies have shown RTL literacy and
math content engages children, enhances their early learning skills and
allows them to make significant academic gains, helping bridge the
achievement gap. 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.\1\
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\1\ PBS KIDS Mathematics Transmedia Suites in Preschool Homes: A
Report to the CPB-PBS Ready To Learn Initiative (WestEd 2012).
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--Children who participated in the RTL Electric Company Summer
Learning Program showed significant learning gains from pre- to
post-assessment:
--41 percent gain in their mathematics vocabulary
--20 percent gain in their numeracy skills
--17 percent gain in their phonics skills \2\
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\2\ Evaluation of The Electric Company Summer Learning Program
(WestEd 2011).
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--Parents who used RTL math resources in the home became considerably
more involved in supporting their children's learning
outcomes.\3\
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\3\ Learning with PBS KIDS: A Study of Family Engagement and Early
Mathematics
Achievement (WestEd 2015).
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an excellent investment
In addition to being research-based and teacher tested, RTL also
provides excellent value for our Federal dollars. In the last five-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. RTL exemplifies how the public-private
partnership that is public broadcasting can change lives for the
better.
A funding level of $30 million is requested in fiscal year 2021 to
further enhance the impact of Ready To Learn created content and the
quantity and scope of local station outreach to the kids, families,
teachers and schools that need it the most.
Given the rigorous, thoughtful educational research and evaluation
that goes into the creation of Ready To Learn content, Ready To Learn
grants are awarded every 5 years and supported through annual
appropriations. Funding in fiscal year 2021 would provide the second
year of funding in the latest grant round. Providing $30 million for
Ready To Learn in fiscal year 2021 will ensure that the next round of
Ready To Learn grants can continue to create the highest quality,
proven effective kids educational media content, meeting kids,
caregivers and teachers where they are on a variety of platforms,
including television, while expanding local, on-the-ground outreach
through public television stations and their local partners.
conclusion
Americans across the political spectrum rely on and support Federal
funding for public broadcasting because we provide essential local
education, public safety, and civic leadership services that are not
available anywhere else. And none of this would be possible without the
Federal investment in public broadcasting.
Federal funding is the great equalizer that ensures that the best
of public broadcasting is available in both the urban centers of our
great cities and in Native American communities in America's heartland
and everywhere in between.
Federal funding for CPB is what ensures that young children in
Appalachia have the same access to the unparalleled PBS KIDS content as
their counterparts in Los Angeles. And Federal funding is what ensures
that all households, regardless of their ability to pay for cable have
access to local programming and the best of NOVA, Masterpiece,
NewsHour, Great Performances, and so much more.
Public broadcasters are the only broadcasters that reach nearly 97
percent of U.S. households, and it is CPB funding that makes this
possible.
For all of these reasons we request that Congress continue its
commitment to the highly successful, hugely popular public-private
partnership that is public broadcasting by providing $515 million in
fiscal year 2023 for CPB in addition to $20 million in fiscal year 2021
for public broadcasting's interconnection system and $30 million in
fiscal year 2021 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 serving communities throughout our country.
The Corporation for Public Broadcasting (CPB) requests funding of $515
million for fiscal year 2023, $20 million in fiscal year 2021 for the
replacement of the public broadcasting interconnection system and other
technologies and services, and $30 million for the Department of
Education's Ready To Learn program.
The Corporation provides leadership and stewards the Federal
appropriation to ensure a healthy and sustainable public media system.
With CPB funding to 1,500 local public television and radio stations
across the country, the Federal appropriation guarantees that important
educational content and services, news and public affairs programming,
and cultural treasures reach Americans living in rural, small town and
urban communities. Stations leverage the appropriation, raising, on
average, six times more from non-Federal funding sources than they
receive from CPB. While private funding and donations can and do make
up a significant portion of the finances of the public media system,
the Federal appropriation remains an essential part of the public-
private partnership for public media. This seed money pays invaluable
dividends to millions of Americans and their families, especially the
unserved and underserved. Only through Congressional funding can public
media maintain this universal access.
In order to meet the educational needs of young people, public
media provides award winning high-quality educational content on all
platforms. Through the Department of Education's Ready to Learn grant,
public television is preparing our youngest learners for school,
especially those in underserved communities, by delivering proven
educational resources and experiences to parents, teachers and
caregivers. While today's media environment offers abundant content
aimed at children, no other outlet provides safe, trusted, educational
content that is free of charge and commercial-free. The Federal
appropriation to CPB ensures that our children will continue to have
access to public media's content over the air, online, through mobile
apps and in their community.
Federal support through CPB helps local public media stations
provide new services that excite and engage students, teachers and
parents. For example, the Mobile Virtual Reality Lab (MVRL) at Georgia
Public Broadcasting utilizes virtual reality headsets to immerse
students in educational experiences. Through the MVRL, students are
transported to key moments in the Civil Rights Movement and can also
explore prehistoric cultures of Native American tribes.
Further to ensure that young people can access content of value to
their lives, CPB is helping launch TRAX, a new public media network of
original podcasts for ages 9 to 13 years old. Beginning this year, TRAX
will offer on-demand audio content that is educational and
entertaining, and diverse in genre, format and voice. In addition, CPB
is funding research at the Joan Ganz Cooney Center to explore new ways
public media can connect trusted, educational content to children ages
8 to 18. As learning becomes more personalized, Congress' support is
needed to continue to research, develop and test how educational media
and technology can improve students' learning outcomes.
Through public media initiatives such as American Graduate,
stations provide high-quality educational content and community
engagement that helps Americans prepare for success in school and
career. Nine years ago, public media addressed the high school dropout
crisis-one million students failing to graduate each year. Through
national and local content, award-winning documentaries, reporting and
town halls, the American Graduate initiative drove dialogue and put a
face on a statistic. As a result of the steadfast commitment of
initiatives such as American Graduate, the national graduation rate has
risen to an unprecedented 84.6 percent. Further, research shows that in
88 percent of those communities where American Graduate was active,
schools experienced an almost 10 percent increase in their graduation
rates-compared with the national average of 5.5 percent. Moreover,
recent government statistics showed that for the first time, black
students' graduation rates are on par with white youth. While we are
proud of this success, there is still work to be done.
Building on American Graduate's success, CPB expanded the
initiative to focus on connecting young people to essential workforce
skills and career opportunities. For example, Connecticut Public
Broadcasting facilitated a town hall where businesses shared what
success looks like for those who enter high-demand, skilled careers and
broke down multiple negative perceptions with data and storytelling.
With CPB support, Kentucky Educational Television (KET) created
Workplace Essential Skills--an online instructional system utilizing
videos, interactive learning tools and quizzes to guide learners
through the job application process and workplace environment. KET has
launched online certification courses in healthcare, manufacturing,
transportation/logistics, and in construction and information
technology. American Graduate is helping Americans improve their
everyday lives and rise to meet the challenges of tomorrow.
CPB seeks to increase the capacity of public radio and television
stations to create high-quality original and enterprise journalism by
supporting collaborations between public media stations. As local
journalism diminishes, public media stations have added more than 700
journalists to their staffs during the past 6 years. Local reporting
and community-led conversations on issues such as aging and mental
health provide resources and answers for those affected. With the
global outbreak of COVID-19 and the need for community information,
South Florida PBS is providing public television stations across the
country with health reports from medical experts, and is making
available a dedicated website that tracks the virus' spread and offers
information about treatment and prevention. KUOW-FM in Seattle is
providing live updates about the coronavirus online and on air and is
explaining who is most at risk for severe illness, as well as where
COVID-19 tests are available and its impact on businesses.
Further, CPB's investments in editorial integrity and regional
journalism collaborations allow public media to retain the trust of the
American people and deliver relevant news and information to local
communities and regions. Nationally, programs such as FRONTLINE, PBS
NewsHour, NOVA and All Things Considered examine critical issues facing
our society, providing trusted content to Americans striving to learn
more about our ever-changing world.
CPB supports initiatives that increase understanding of our shared
American experience by capturing and elevating the stories of everyday
people from differing backgrounds and viewpoints. CPB's Coming Home:
Connecting to Community celebrates the people, culture, and stories of
rural America through authentic local voices and talent. Working with
local partners, public media can uniquely preserve community stories
about traditions, aspirations, struggles and what it means to be an
American. CPB is also proud to support StoryCorps, including its
Military Voices Initiative, which records the stories of military
service members and their families to honor and better understand their
sacrifice.
Committed to building a pipeline of diverse talent, CPB funds the
National Multicultural Alliance, Firelight Media's Documentary Lab, the
Jacquie Jones Memorial Scholarship, the Werk It Podcast Festival, and
WXXI-Rochester's Move to Include initiative. Each of these efforts
increases the numbers of diverse storytellers, ensuring our nation's
public media service reflects the faces and voices of Americans.
Interconnection Infrastructure: Interconnection is the backbone of
the public media system, delivering content every day from public media
producers to public television and radio stations in communities
throughout the country. Without it, there is no nationwide public media
service. Recognizing its importance, Congress has funded public media's
interconnection system since fiscal year 1991 through a separate,
periodic appropriation for interconnection. Currently, CPB is investing
in new technologies and organizational change to ensure that the public
media system continues to provide essential services in the 21st-
century. For public media consumers, this will mean increased
accessibility and personalization across all public media digital
platforms and increased efficiencies for public media stations through
unified radio and television content management systems. These
efficiencies and technological improvements will advance the entire
system and benefit the American people.
CPB's fiscal year 2023 request of $515 million and fiscal year 2021
requests of $20 million and $30 million for interconnection and Ready
To Learn, respectively, provides essential support to stations--
particularly those serving rural, minority and other underserved
communities--and enables innovation and technological advances. We know
that Americans value their local public media stations. With your
support, CPB will continue to serve as a trusted steward of the Federal
appropriation and invest these taxpayer dollars in ways that connect to
Americans' daily lives and our shared future. Mr. Chairman and members
of the subcommittee, thank you for allowing me, on behalf of America's
public media, to submit this testimony. I appreciate your consideration
of our funding request.
[This statement was submitted by Patricia de Stacy Harrison,
President and CEO, Corporation for Public Broadcasting
______
Prepared Statement of the Railroad Retirement Board
Mr. Chairman and Members of the Committee:
The President's fiscal year 2021 proposed budget for the Railroad
Retirement Board (RRB) is $120.225 million. The RRB is requesting
$155.824 million. Appropriations for RRB operations are derived from
the railroad retirement trust funds and not the general revenue fund.
Appropriations language \1\ authorizes the RRB to access available
funding from its trust funds, in contrast to monies that would
otherwise be appropriated from the general revenue fund, to administer
comprehensive retirement/survivor and unemployment/sickness insurance
benefit programs for railroad workers and their families under the
Railroad Retirement (RRA) and Railroad Unemployment Insurance (RUIA)
Acts. The RRB also administers certain benefit payments and Medicare
coverage for railroad workers under the Social Security Act.
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\1\ ``Such amounts as determined by the Board from the railroad
retirement accounts and from moneys credited to the railroad
unemployment insurance administration fund.'' Further Consolidated
Appropriations Act, 2020, Public Law 116-94, Div. A, Title IV (December
20, 2019).
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During fiscal year 2019, the RRB paid benefits totaling $13.3
billion, net of recoveries and offsetting collections. Of this amount,
payments for the retirement/survivor benefits program totaled $13.1
billion to about 535,000 beneficiaries. The RRB also paid unemployment-
sickness benefits of $93.2 million. About 9,300 railroad workers
received unemployment insurance benefits, and approximately 14,700
received sickness insurance benefits. Finally, RRB paid vested dual
benefits of $17.3 million to about 9,000 beneficiaries. On behalf of
the Social Security Administration, the RRB paid benefits of $1.9
billion to about 125,500 beneficiaries (for which the RRB is
reimbursed).
The railroad employer and employee contributions are held in trust
funds to pay railroad benefits and support RRB operations. As
previously stated, enacted appropriation language authorizes the RRB to
access the funds available in the railroad retirement trust fund system
in order to finance operations. The Association of American Railroads
and the Rail Labor Division of the Transportation Trades Department,
American Federation of Labor and Congress of Industrial Organizations
(AFL-CIO) continue to support increased appropriations to address the
urgent staffing needs and ongoing information technology modernization
activities.
president's proposed funding for rrb administration
The President's proposed budget would provide $120.225 million for
RRB operations, to include IT initiatives, and support 672 full-time
equivalents (FTEs). The RRB requests $155.824 million, which is $35.599
million above the President's proposed budget. Of the $155.824 million
RRB requests, $141.974 million is necessary to support 880 FTEs and
$13.850 million in no-year funds to continue IT modernization efforts.
For the reasons explained below, the FTE level of 672 proposed in the
President's budget would pose too great a risk of failure to meet the
agency's mission as early as fiscal year 2021.
The RRB is asking for funding from the railroad retirement trust
fund system, not the general revenue fund, sufficient to support 880
FTEs, which is the number that is urgently needed to sustain mission
critical activities. The remainder of this testimony will focus on
these critical priorities and conclude with an overview of the
financial status of the trust funds.
critical priority: staffing
Since fiscal year 2017, the RRB has been appropriated $113.5
million for personnel and general operating costs to support benefits
administration, exclusive of funding for IT modernization despite
successive years of unfunded Cost of Living Adjustment (COLA) increases
in salary and associated benefits. The COLAs the RRB had to fund with
its stagnant budget include $1.388 million in 2017, $1.389 million in
2018, $1.364 million in 2019, and $2.066 million in 2020. Consequently,
the RRB has strained to absorb the impact of increases in civilian pay
and benefits costs. Roughly, 36 percent of the agency's most
knowledgeable and experienced staff will be eligible to retire by
fiscal year 2022. In fiscal year 2020, approximately 25 percent of its
workforce is eligible to retire. Unfortunately, these seasoned
employees are not easily replaced due to the complexity of RRB programs
and the tendency of new hires to seek higher paying work outside the
agency. Insufficient staffing levels have thus forced the RRB to focus
its limited resources on processing initial claim and related payments
timely. To date, these are the most visible performance metrics and
generally, with the exception of disability payments, RRB has been
successful in this regard. Sustained low staffing levels have
nevertheless reduced RRB's performance in less visible ways: inadequate
staffing levels have created backlogs of post adjudicative actions that
serve to ensure ongoing disability or retirement/survivor benefit
payments are accurate. Inadequate staffing has also impaired the RRB's
core training program, which ensures that new employees obtain an in-
depth understanding of the RRA and/or RUIA for effective and efficient
benefits administration. It can take one to 2 years for new staff to
become competent adjudicators and even longer for new staff to resolve
more complex and non-routine administrative issues. On the other hand,
RRB customer service metrics associated with deficient staffing levels
in the RRB's 53 field offices have sharply declined due to poor
customer service availability, unacceptable wait times for telephone
assistance and unpredictable temporary office closures. Representatives
of both rail management and rail labor have shared negative feedback
about and examples of RRB's poor customer service in recent months.
Therefore, the RRB requests $141.974 million to support 880 FTEs.
Investment in additional staff would help the RRB revitalize its
benefits administration training program, allowing the RRB to better
manage the impact of attrition and improve customer service
capabilities. After the new staff have been trained, the RRB would
begin to realize reductions in the backlog in retirement, survivor, and
disability casework and prevent future case build up. Increased
staffing levels are necessary until the modernized technology and
streamlined business processes can sustain organizational performance
at lower staffing levels in the future.
critical priority: information technology
We are grateful for the support and $30 million provided thus far
for the RRB's IT modernization efforts. Several of the seven
initiatives identified early in this modernization journey afforded two
major lessons learned. To start with, the RRB's IT Modernization
Program focused narrowly on seven initiatives and did not capture
significant outdated portions of the enterprise IT environment.
Secondly, while IT modernization is still the priority, we will
leverage the opportunity to transform core business processes and
customer service capabilities, simultaneously. As such, RRB's IT
modernization program has evolved into a Transformation that consists
of three phases--Stabilize, Modernize, and Perform. From an IT
perspective, this Transformation will still target the 70+ legacy
applications and transition its platforms to support continuous
delivery of capability enhancements securely and reliably. From a
business perspective, the Transformation will ensure that core process
modernizations span the continuum, to include streamlining the RRB's
core training program for claim examiners as well as infusing greater
flexibility and efficiency into benefit calculations and/or
adjustments.
The progress of the RRB's IT modernization activities is detailed
in the quarterly reports submitted to your office. The RRB requests
$13.850 million of no-year funding for ongoing modernization efforts,
shifting from the Stabilize to the Modernize phase of the
Transformation.
financial status of the trust funds
Railroad Retirement Accounts.--The RRB continues to coordinate its
activities with the National Railroad Retirement Investment Trust
(Trust), which was established by the Railroad Retirement and
Survivors' Improvement Act of 2001 (RRSIA) to manage and invest
railroad retirement assets for the payment of benefits. The net asset
value of Trust-managed assets on September 30, 2019, was $25.4 billion,
a decrease of almost $1.2 billion from the previous year.
The RRB's latest report required by the Railroad Retirement Act of
1974 and Railroad Retirement Solvency Act of 1983 was released in June
2018. The overall conclusion was, barring a sudden, unanticipated,
large drop in railroad employment or substantial investment losses, the
railroad retirement system will experience no cash flow problems during
the next 29 years. The report recommended no change in the employer or
employee tax rates.
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 2019. The report indicated that
even as maximum daily benefit rates are projected to rise approximately
44 percent (from $77 to $111) from 2018 to 2029, experience-based
contribution rates are expected to keep the unemployment insurance
system solvent. No financing changes were recommended at this time by
the report.
Thank you for your consideration of our budget request.
[This statement was submitted by Erhard R. Chorle, Chairman, John
Bragg, Labor Member, and Thomas Jayne, Management Member, Railroad
Retirement Board.]
______
NONDEPARTMENTAL WITNESSES
Prepared Statement of the Academy for Radiology &
Biomedical Imaging Research
Mr. Chairman and Members of the Subcommittee, my name is Dr.
Mitchell Schnall, and I am privileged to serve as President of the
Academy for Radiology & Biomedical Imaging Research (``the Academy'').
I am testifying today to thank you for your dedicated support of
medical imaging, and to request your support for raising the funding
for the National Institutes of Health (NIH) to no less than $44.7
billion and increasing the funding for the National Institute of
Biomedical Imaging and Bioengineering (NIBIB) to no less than $428.6
million.
In my ``day job'' I am Eugene P. Pendergrass Professor and Chair of
the Department of Radiology at the Perelman School of Medicine at the
University of Pennsylvania, Philadelphia, PA. I am also a member of the
American Society of Clinical Investigation and the Association of
American Physicians. Throughout my career, I have worked on the
interface between basic imaging science and clinical medicine. My work
has led to fundamental changes in imaging approaches to breast and
prostate cancer, as well to emerging technologies such as optical
imaging.
On behalf of the Academy, I would like to begin by thanking you for
your generous support for the NIH in the fiscal year 2020 LHHS
appropriations bill. The increase in funding of $2.6 billion is
critical to the important work of improving our biomedical research
infrastructure while also ensuring that the United States remains the
leader in medical innovation and technology.
As this subcommittee knows well, funding for NIH is spread
throughout the country. Approximately 83 percent of the amount
appropriated for NIH budget is used for peer-reviewed extramural grants
to researchers at universities, hospitals, and institutes in all 50
states. Approximately 10 percent funds very high-end research and
patient care on the NIH campus. Only about 7 percent of funding is used
for administrative purposes, maximizing the return on the investment.
Nowhere is the return on investment and impact on healthcare
diagnosis and treatment more significant than in the growing field of
biomedical imaging and bioengineering.
Our requests of this Subcommittee are critically important to the
physical and economic health of the nation, and I would like to state
them clearly here:
--Please fund the NIH at no less than $44.7 billion for fiscal year
2021.
--Please fund NIBIB at no less than $428.6 million for fiscal year
2021.
Mr. Chairman, medical imaging plays a unique and substantial role
in healthcare, both as an instrumental part of the medical care
delivery system and as a catalyst for innovation and technological
advancement in service of patient care. Imaging performs increasingly
central and irreplaceable roles in early disease detection, diagnosis,
treatment planning and monitoring. Precise and personalized care and
treatment plans are often developed based on decisions made through
imaging analysis and review. The Subcommittee's investment in NIH
broadly, and in NIBIB in particular, helps make this possible.
NIBIB's imaging and bioengineering research and development create
the vital methodology and tools utilized in so many areas of biomedical
research by other institutes, and more generally in America's
healthcare delivery system. Imaging and bioengineering research is a
significant component of the work of many institutes of the NIH,
representing 13 percent of all NIH research, while having a budget that
is less than 1 percent of the total NIH budget. It is important to note
that NIBIB research itself has led to an impressive number of approved
patents. In a study covering the 14-year period from 2000 to 2013,
\*\Battelle et al. found that for every $100 million of research
funding, NIBIB generated 25 patents and more than $575 million in
resulting economic activity and growth.
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\*\ Report available at: https://www.acadrad.org/battelle-report/.
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For nearly every patient--nearly every constituent--who receives a
cancer diagnosis, suffers a head injury, or experiences any of
thousands of other medical issues, or who cares for family members
experiencing such difficulties, the health benefits of imaging and
bioengineering research are profoundly felt. Few medical conditions do
not already benefit from any of the wide range of clinical imaging
modalities, from x-rays to MRI, CT, PET, fluoroscopy, angiography, and
ultrasound. Furthermore, scientific discoveries and technological
innovations are rapidly expanding the power of biomedical imaging and
bioengineering to improve medical care.
In the area of cancer, for example, emerging techniques for
molecular imaging will play a key role in realizing the dream of
molecularly-targeted treatment. Unlike biopsies, they can give a non-
invasive picture of the biological heterogeneity of cancer within and
across all tumors in a patient. Progress is accelerating rapidly in the
use of computer tools, including artificial intelligence (AI) and
machine learning (ML). Such tools are utilized to analyze both
anatomical and molecular images and identify mathematically defined
features not perceptible to the human eye. These tools can predict the
presence of cancer, its genetic profile, and how well it is likely to
respond to specific treatments. The use of increasingly advanced
imaging tools to guide medical interventions is allowing more precise,
less invasive procedures, in some cases with immediate assessment of
efficacy to enable necessary adjustments before a procedure is
concluded. Exploratory surgery is now far less common due to these new
advancements.
The Academy is involved in a broad effort to help maximize the
efficiency with which medical imaging is applied in research and
patient care. Since 2017, when the Interagency Working Group on Medical
Imaging (IWGMI) within the White House Office of Science Technology
Policy (OSTP) released its Roadmap report, the Academy has been working
to advance the report's four key objectives for ``high-value'' imaging:
--Standardizing image acquisition and storage;
--Applying advanced computation and machine learning to medical
imaging;
--Accelerating the development and translation of new, high-value
imaging techniques; and
--Promoting best practices in medical imaging.
The Academy is working closely across academia, government, and
industry to identify and pursue specific, effective steps to implement
the building of the Diagnostic Cockpit (DxCP), as envisioned by IWGMI.
The DxCP initiative will empower precision medicine by bringing
together the latest diagnostic sensor technology with advanced AI-based
computing to match patients to the best treatments. The Academy has
convened leaders in biomedical imaging and bioengineering from
academia, government, and industry to work collaboratively on this
initiative toward the development of tools that will leverage advances
in AI and ML to aggregate and synthesize medical data to improve
patient care. The DxCP is a vision for today and for the future that
will be made possible by a consistent and robust investment in
biomedical imaging research. The sooner we invest, the sooner your
constituents benefit.
Mr. Chairman, innovation is what keeps America healthy--both
physically and economically--and the NIH is a major contributor to our
strength. Since its creation, NIBIB has proven to have a significant
impact by creating the imaging and bioengineering tools that improve
the healthcare of Americans and contribute to our nation's economic
vitality and global leadership.
Thank you again for the opportunity to present this testimony to
you on behalf of the Academy for Radiology & Biomedical Imaging
Research. The Academy welcomes the opportunity to work with the
Congress to ensure that the American people benefit from their
investment in research and have access to the best technology to
address their imaging needs.
[This statement was submitted by Mitchell D. Schnall, M.D., Ph.D.,
Academy for Radiology & Biomedical Imaging Research.]
______
Prepared Statement of the Academy of Nutrition and Dietetics
The Academy of Nutrition and Dietetics appreciates the opportunity
to submit outside witness testimony to the Senate Subcommittee on
Labor, Health and Human Services, and Education, and Related Agencies.
The Academy is the world's largest organization of food and nutrition
professionals and is committed to improving the nation's health with
nutrition services and interventions provided by registered dietitian
nutritionists. Nationwide, the Academy represents over 107,000
registered dietitian nutritionists (RDNs), nutrition and dietetic
technicians, registered (NDTRs), and advanced-degree nutritionists.
For fiscal year 2021, we strongly urge you to provide robust
funding for Older Americans Act nutrition programs, which are on the
front lines of preventing senior hunger and malnutrition and promoting
social distancing during the COVID-19 crisis; the CDC Division of
Nutrition, Physical Activity, and Obesity; and the National Institute
of Diabetes, Digestive, and Kidney Diseases. We also request report
language related to obesity treatment within Medicare.
funding: acl older americans act nutrition programs
The Older Americans Act authorizes a wide array of service programs
through a national network of 56 state agencies on aging, 629 area
agencies on aging, nearly 20,000 service providers, 244 Tribal
organizations, and 2 Native Hawaiian organizations representing 400
Tribes.\1\ These programs are overseen by the HHS Administration for
Community Living. Most participants have household incomes below 100
percent of the Federal poverty level.\2\
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\1\ https://acl.gov/about-acl/authorizing-statutes/older-americans-
act.
\2\ https://fas.org/sgp/crs/misc/IF10633.pdf.
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During the COVID-19 crisis, service providers stopped providing
congregate meals and shifted those services to grab-and-go and home-
delivered meals to promote social distancing and prevent the spread of
the virus among this very vulnerable population. In addition to
continuing to combat senior hunger in this time of uncertainty, senior
meals programs also help reduce the need for seniors to leave their
homes to get food, further helping to limit their potential exposure to
COVID-19.
congregate nutrition services
Academy's Fiscal Year 2021 Request: $562 million--Fiscal Year 2020
Enacted Level: $510 million
Congregate Nutrition Services funds nearly 80 million meals per
year for 1.5 million participants and gives seniors access to
socialization. More than one-fifth of participants have been deemed to
be at high nutrition risk. These funds are also used to provide
nutrition screening and counseling to seniors who may be at risk of
malnutrition, food insecurity, or other related issues.
A national survey of OAA participants shows that in 2017, 48
percent of congregate nutrition survey respondents were aged 75 and
older; 47 percent lived alone; 11 percent had annual income of $10,000
or less; and 51 percent reported that the congregate meals program
provided one-half or more of their daily food intake.\3\ Furthermore,
many congregate nutrition participants reported these meals have
fostered greater socialization, with 83 percent saying that they saw
friends more often due to meals.
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\3\ https://fas.org/sgp/crs/misc/IF10633.pdf.
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home-delivered nutrition services
Academy's Fiscal Year 2021 Request: $285 million--Fiscal Year 2020
Enacted Level: $266 million
Home-Delivered Nutrition Services provides more than 140 million
meals per year to 850,000 participants and serves as a safety check for
isolated residents.\3\ More than one-half of participants have been
deemed to be at high nutrition risk. The program is also a primary
access point for other home- and community-based services for many
seniors. An ACL evaluation found that, compared to congregate meal
participants, a larger proportion of home-delivered meal participants
reported being in fair or poor health, being underweight, having
difficulty eating due to dental issues, and taking multiple
medications. For many seniors, Home-Delivered Nutrition Services are
their only consistent, dependable source of food.
A national survey of OAA participants shows that in 2017, 62
percent of home-delivered respondents were aged 75 and older; 58
percent lived alone; 23 percent had annual income of $10,000 or less;
and 57 percent said that the home-delivered meals program provided at
least one-half of their daily food intake.\3\ According to the survey,
home-delivered meals participants tend to be particularly frail and at
risk for institutionalization, in part due to the requirement that
participants be home-bound. Almost 4 out of 10 recipients (39 percent)
reported needing assistance with one or more activities of daily living
(ADLs); 14 percent of these recipients needed assistance with three or
more ADLs. In addition, 84 percent reported needing assistance with one
or more ADLs.
nutrition services incentive program
Academy's Fiscal Year 2021 Request: $181 million--Fiscal Year 2020
Enacted Level: $160 million
The Nutrition Services Incentive Program provides incentives for
providers to serve additional meals through cash and/or commodities
grants. Prior to the CIOVID-19 pandemic, more local service providers
were reporting waiting lists for home-delivered meals than in previous
years.\3\ As food insecurity increases across the country in the wake
of the COVID-19 pandemic, this incentive program is a key means to
reducing waiting lists for senior meals programs.
disease prevention and health promotion services
Academy's Fiscal Year 2021 Request: $28 million--Fiscal Year 2020
Enacted Level: $25 million
Disease Prevention and Health Promotion Services funds evidence-
based prevention programs to improve health and reduce disease and
injury among older adults.\4\ The program provides grants to states and
territories based on their share of the population aged 60 and older
for programs that support healthy lifestyles. Common program types
include class-based physical activity programs, falls prevention
programs, self-management programs, and one-on-one health interventions
within the home. Evidence-based disease prevention and health promotion
programs can reduce the need for more costly medical interventions.
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\4\ https://acl.gov/programs/health-wellness/disease-prevention.
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funding: cdc division of nutrition, physical activity and obesity
Academy's Fiscal Year 2021 Request: $125 million--Fiscal Year 2020
Enacted Level: $56.9 million
The CDC Division of Nutrition, Physical Activity, and Obesity
(DNPAO) oversees grant programs that provide funds to states and
localities to address the obesity epidemic in their communities.\5\
According to the CDC, the prevalence of obesity was 42.4 percent in
2017-2018.\6\ Obesity-related conditions include heart disease, stroke,
type 2 diabetes and certain types of cancer that are some of the
leading causes of preventable, premature death. In 2008, the annual
medical cost of obesity in the United States was estimated to be $147
billion; the medical cost for people who have obesity was $1,429 higher
than those of normal weight.
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\5\ https://www.cdc.gov/nccdphp/dnpao/state-local-programs/
funding.html.
\6\ https://www.cdc.gov/obesity/data/adult.html.
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state physical activity and nutrition program
Academy's Fiscal Year 2021 Request: $60 million--Fiscal Year 2020
Enacted Level: $15 million
One of the programs run out of DNPAO is the State Physical Activity
and Nutrition (SPAN) grant program, which awards competitive grants to
states to implement multi-component, evidence-based strategies at the
state and local level to improve nutrition and physical activity.\7\
With its current funding level, SPAN is only able to fund 16 states,
which is does via 5-year grants (currently fiscal year 2018-2022).
DNPAO estimates that it would cost an additional $1.2 million per state
to expand the program, so we are requesting $60 million in total
funding to allow every state to receive funding through SPAN.
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\7\ https://www.cdc.gov/nccdphp/dnpao/state-local-programs/span-
1807/index.html.
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funding: national institute of diabetes, digestive and kidney diseases
Academy's Fiscal Year 2021 Request: $2.2 billion--Fiscal Year 2020
Enacted Level: $2.1 billion
The National Institute of Diabetes, Digestive, and Kidney Diseases
(NIDDK) conducts and provides grant funding to support research on many
of the most common and costly chronic diseases. Key areas of focus
include diabetes, digestive diseases such as Celiac, kidney disease,
weight management, and more. This research advances clinical knowledge
about and treatment for these diseases. The $2.2 billion request would
help NIDDK to accelerate scientific understanding of some of the
costliest and most common chronic conditions in America:
--30.3 million people have diabetes (9.4 percent of the U.S.
population).\8\
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\8\ https://www.cdc.gov/diabetes/pdfs/data/statistics/national-
diabetes-statistics-report.pdf.
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--14.5 percent of adults over age 65 have chronic kidney disease and
more than 740,000 Americans have kidney failure.\9\
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\9\ https://www.usrds.org/2019/view/USRDS_2019_ES_final.pdf.
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--4.5 million adults have diagnosed liver disease (1.8 percent of
adult population).\10\
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\10\ https://www.cdc.gov/nchs/fastats/liver-disease.htm.
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--60 to 70 million people are affected by all digestive diseases
within the United States.\11\
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\11\ https://www.niddk.nih.gov/health-information/health-
statistics/digestive-diseases.
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report language: obesity treatment in medicare
We ask that you include report language that encourages CMS to
exercise their existing authority to provide full access to anti-
obesity medications under Medicare Part D and intensive behavioral
therapy for obesity under Medicare Part B. The language requested below
reflects the major provisions of the Treat and Reduce Obesity Act
(H.R.1530/S.595).
Obesity is a chronic disease and a public health crisis that
continues to strain the economy and health outcomes. According to the
Centers for Disease Control and Prevention, about 41 percent of adults
aged 60 and over had obesity in the period of 2015 through 2016,
representing more than 27 million people. The National Institutes of
Health has reported that obesity and overweight are now the second
leading cause of death nationally, with an estimated 300,000 deaths a
year attributed to the epidemic. Obesity increases the risk for chronic
diseases and conditions, including high blood pressure, heart disease,
certain cancers, nonalcoholic steatohepatitis (NASH), arthritis, mental
illness, lipid disorders, sleep apnea and type 2 diabetes.
To help address the high costs of comorbidities associated with the
chronic disease of obesity and to promote access to treatment of the
disease of obesity and chronic weight management, the Committee
encourages CMS to provide access to the full continuum of care with
obesity, including to anti-obesity medications under Medicare Part D
consistent with CMS's approach to pharmacotherapy agents used for
weight gain to treat AIDS wasting and cachexia.
The Committee also encourages CMS to update its Medicare Part B
national coverage determination for intensive behavioral therapy (IBT)
for obesity to be consistent with current United States Preventive
Services Task Force recommendations that IBT for obesity can be
provided, through referral, outside of the primary care setting and by
a broader range of qualified providers than are currently permitted to
bill under Part B for this service.
Recent research shows that obesity is the second greatest risk
factor, after older age, for hospitalization among COVID-19 patients.
For these reasons, the Centers for Disease Control and Prevention now
state that older people and younger adults with serious medical
conditions, such as obesity, heart disease, diabetes, lung disease and
asthma have a greater risk of becoming severely ill if they are
infected with the SARS-CoV-2 virus.
This crisis has also magnified the health disparities experienced
by minority communities. Minority populations have long faced chronic
disease health disparities due to socioeconomic inequalities and
reduced access to healthcare, healthy foods and safe places to be
active. It is these same groups that are now disproportionately
impacted by COVID-19. We encourage you to help reduce this important
driver of COVID-19 morbidity, mortality, and related disparities by
using report language to encourage CMS to offer full access to
evidence-based obesity treatments within Medicare.
Contact
Please feel free to contact me at [email protected] with any
questions. Thank you for the opportunity to submit testimony to the
Subcommittee.
[This statement was prepared by Hannah Martin, MPH, RDN, Director,
Legislative and Government Affairs, Academy of Nutrition and
Dietetics.]
______
Prepared Statement of the Ad Hoc Group
The Ad Hoc Group for Medical Research is a coalition of more than
330 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) through a recommendation of $44.7 billion
for NIH in fiscal year 2021.
As a result of the strong, bipartisan vision of Senate and House
Labor-HHS-Education Appropriations Subcommittees over the last 5 years,
Congress has helped the agency regain some of the ground lost after
years of effectively flat budgets. This renewed investment in NIH has
advanced discovery toward promising therapies and diagnostics,
reenergized existing and aspiring scientists nationwide, and restored
hope for patients and their families.
We are also grateful for the recent bipartisan agreements to
provide supplemental appropriations for NIH and other key health
programs as the healthcare and research community responds to the
ongoing coronavirus pandemic. To maximize our country's ability to
develop countermeasures against COVID-19 and sustain the research
momentum across all NIH research, the Ad Hoc Group recommends $44.7
billion for the NIH in fiscal year 2021, a $3 billion increase over the
NIH's program level funding in fiscal year 2020. This funding level,
supported by more than 330 stakeholder organizations, would allow for
meaningful growth above inflation in the base budget that would expand
NIH's capacity to support promising science in all disciplines in
addition to special initiatives. It also would ensure that funding from
the Innovation Account established in the 21st Century Cures Act would
supplement the agency's base budget, as intended, through dedicated
funding for specific programs.
In addition, due to the strain COVID-19 is placing on our
researchers and research infrastructure, and the strict limits of the
fiscal year 2021 discretionary spending caps, the Ad Hoc Group supports
bipartisan proposals to exempt key health programs, including NIH, from
the fiscal year 2021 budget caps. We believe that investments in
science and innovation are essential if we are to continue to meet
current and future health challenges, improve our nation's physical and
fiscal health, and sustain our leadership in medical research. As the
Subcommittee has recognized, to remain a global leader in accelerating
the development of life-changing cures, pioneering treatments, and
innovative prevention strategies, and in this time of unprecedented
scientific opportunity, it is essential that Congress sustain robust
increases in the NIH budget.
NIH: A Partnership to Save Lives and Provide Hope. The partnership
between NIH and America's scientists, medical schools, teaching
hospitals, universities, and research institutions is a unique and
highly productive relationship, leveraging the full strength of our
nation's research enterprise to translate this knowledge into the next
generation of diagnostics, therapeutics, and cures. More than 80
percent of the NIH's budget is competitively awarded through nearly
50,000 research and training grants to more than 300,000 researchers at
over 2,500 universities and research institutions located in every
state and Washington, D.C. The Federal Government has an essential and
irreplaceable role in supporting medical research. No other public,
corporate or charitable entity is willing or able to provide the broad
and sustained funding for the cutting-edge basic research necessary to
yield new innovations and technologies of the future.
NIH has supported biomedical research to enhance health, lengthen
life, respond to emerging health threats, and reduce illness and
disability for more than 100 years. The following are a few of the many
examples of how NIH research has contributed to improvements in the
nation's health.
--Amidst a global pandemic, steady investment over the past few years
in NIH has enabled NIH to rapidly scale up clinical trials of
candidates for a SARS-COV-2 vaccine. The record speed at which
we are seeing progress toward a vaccine is a testament to the
value of supporting basic and clinical research over time.
Vaccines continue to be one our most cost-effective public
health tools. Every $1 spent on routine childhood vaccinations
is estimated to save $5 in direct costs, and $11 in broader
costs to society.
--Breakthroughs in the treatment of depression came in 2019 with FDA
approval of two new drugs--one for treatment-resistant
depression and the first ever treatment for postpartum
depression. These approvals follow nearly three decades of
research funded by the NIH to identify novel mechanisms of drug
action.
--The NIH has supported research on sickle cell disease (SCD) since
1948, and the disease currently affects about 100,000
Americans. Today, an ongoing multi-center clinical trial is
using gene therapy to replace the defective gene that causes
SCD, beta globin, in patient's blood cells and effectively
curing them of disease.
--In 2007, induced pluripotent stem cells (iPSC) were discovered when
adult cells were re-engineered into early non-differentiated
versions of themselves. In late 2019, the National Eye
Institute launched a first-in-human clinical trial to test the
safety of a novel patient-specific iPSC therapy to treat the
``dry'' form of Age-related Macular Degeneration (AMD), the
most common form of the disease and the leading cause of vision
loss in the age 65+ population.
--NIH-supported researchers continue to work toward strategies to
better prevent, identify, and treat pain and substance use
disorders through the HEAL (Helping to End Addiction Long-term)
Initiative. HEAL aims to support research into new, non-
addictive medication and to establish public and private
partnerships to develop best practices in communities.
--Today, treatments can suppress HIV to undetectable levels, and a
20-year-old HIV-positive adult living in the U.S. who receives
these treatments is expected to live into his or her early 70s,
nearly as long as someone without HIV.
--NIH funding supported research that contributed to all of the 210
new drugs approved by the FDA between 2010 and 2016.
--The death rate for all cancers combined has been declining since
the early 1990s for adults and since the 1970s for children.
Overall cancer death rates have dropped by nearly 29 percent
with more than 2.9 million deaths avoided in total between 1991
and 2017. Research in cancer immunotherapy has led to the
development of several new methods of treating cancer by
restoring or enhancing the immune system's ability to fight the
disease.
For patients and their families, NIH is the ``National Institutes
of Hope.''
Sustaining Scientific Momentum Requires Sustained Funding. The
leadership and staff at NIH and its Institutes and Centers have engaged
the broader community to identify emerging research opportunities and
urgent health needs and to prioritize precious Federal dollars to areas
demonstrating the greatest promise. Sustained robust increases in NIH
funding are needed if we are to continue to take full advantage of
these opportunities to accelerate the development of pioneering
treatments and innovative prevention strategies.
One long-lasting potential impact of investments in NIH is on the
next generation of scientists. Sustained increases in NIH funding over
the last 5 years has allowed NIH to double the investment in early
stage investigators (ESIs). In 2015, NIH only funded about 600 grants
for ESIs and the career outlook for early career researchers seemed
grim. This past year, NIH was able to fund about 1300 grants for ESIs
reinvigorating the spirits of researchers in the biomedical workforce.
Sustained increases will allow NIH to continue support of new talent
and innovation in biomedical research.
Even with the recent investment in NIH, nearly 4 of every 5
research ideas that are proposed to NIH every year cannot be funded.
Additional funding is needed if we are to strengthen our nation's
research capacity, ensure a medical research workforce that reflects
the racial and gender diversity of our citizenry, and inspire a passion
for science in current and future generations of researchers.
NIH is Critical to U.S. Competitiveness. Our country still has the
most robust medical research capacity in the world; however, other
countries have significantly increased their investment in biomedical
science, which leaves us vulnerable to the risk that talented medical
researchers from all over the world may return to better opportunities
in their home countries. We cannot afford to lose that intellectual
capacity, much less the jobs and industries fueled by medical research.
The U.S. has been the global leader in medical research because of
Congress's bipartisan recognition of NIH's critical role. To continue
our dominance, we must reaffirm this commitment to provide NIH the
funds needed to maintain our competitive edge.
NIH: An Answer to Challenging Times. Research supported by NIH
drives local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries, and catalyzes
increases in private sector investment. A $1 increase in public basic
research stimulates an additional $8.38 investment from the private
sector after 8 years. A $1 increase in public clinical research
stimulates an additional $2.35 in private sector investments after 3
years. According to a United for Medical Research report, in 2019, NIH-
funded research supported more than 476,000 jobs across the U.S. and
generated more than $81 billion in new economic activity.
The Ad Hoc Group's members recognize the tremendous challenges
facing our nation and acknowledge the difficult decisions that must be
made to restore our country's fiscal health. Strengthening our
commitment to medical research, through robust funding of the NIH, is a
critical element in ensuring the health and well-being of the American
people and our economy. Therefore, for fiscal year 2021, the Ad Hoc
Group for Medical Research recommends that NIH receive $44.7 billion to
continue the momentum 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 (AIDS
Alliance) was founded in 1994 to help respond to the unique concerns of
HIV-positive and at-risk women, infants, children, youth, and families.
AIDS Alliance conducts policy research, education, and advocacy on a
broad range of HIV/AIDS prevention, care, and research issues. We are
pleased to offer written testimony for the record as part of the fiscal
year 2021 Labor, Health and Human Services, Education, and Related
Agencies appropriations measure and endorse maintaining separate
funding and support for Part D of the Ryan White Program.
ryan white part d funding request
Sufficient funding of Ryan White Part D, the program funded solely
to provide family-centered primary medical care and support services
for women, infants, children, and youth with HIV/AIDS has successfully
identified, linked, and retained these vulnerable populations in much
needed care and treatment, resulting in optimum health outcomes. We
thank the Subcommittee for its continuous support of the Ryan White
Program and respectfully request that the Subcommittee maintain its
commitment to the Ryan White Part D and increase Ryan White Part D
funding by $9.9 million in fiscal year 2021.
ryan white part d background and history
Congress first acted to address pediatric AIDS in 1987, due to the
alarming increase in the number of reported pediatric AIDS cases 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. Since the program's inception in 1988, Part D programs have
served approximately 200,000 women, infants, children, youth, and
family members. These programs have been and continue to be the entry
point into medical care for these vulnerable populations. 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.
Approximately $75.1 million was appropriated to Ryan White Part D
in fiscal year 2019 to provide comprehensive outpatient ambulatory
family-centered primary and specialty medical care and support services
for women, infants, children and youth with HIV. Ryan White Part D
provided funding to 115 community-based organizations, including
academic medical centers and hospitals, federally qualified health
centers, and health departments in 39 states and Puerto Rico. These
grant recipients also provide case management services (medical and
non-medical); referrals for inpatient hospital services; treatment for
substance use, and mental health services. Part D recipients also
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 three decades.
a response to women, infants, children, and youth
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,
infants, children, and youth. The groundbreaking results of the AIDS
Clinical Trial Group study 076 that proved the efficacy of AZT in
preventing mother-to-child transmission of HIV was significant for Ryan
White Part D programs as these programs played a leading role in
reducing mother-to-child transmission of HIV-from as many as 2000
babies born HIV-positive in 1990 to roughly 181 cases in 2012. As
appropriate funding is critical to maintain and improve upon this
success, AIDS Alliance was pleased that the President's fiscal year
2019 budget focused on accelerating the elimination of perinatal HIV
infection in the United States. Appropriate funding is critical to
maintain and improve upon this success, as an estimate for 2006
suggested that approximately 8,500 HIV-positive women that need
counseling services and support to prevent pediatric HIV infections
were giving birth every year in the United States. The most recent
available data reports that 11,355 infants (including HIV exposed
infants) and children were served by Ryan White Part D in 2010.
According to the CDC, youth aged 13-24 made up 21 percent of all new
HIV diagnoses in the country in 2017. Eighty-seven percent of those new
diagnoses among young men and thirteen percent were among young women.
Gay and bisexual men accounted for 69 percent of the 37,832 new HIV
diagnoses in 2018 and heterosexual men accounted for 7 percent of new
HIV diagnoses. Ryan White Part D programs are the entry point into
medical care for many of these HIV-positive youth as this is the age
group least likely to have access to quality healthcare. Though HIV
diagnoses among women have declined in recent years, more than 7,000
women received an HIV diagnosis in 2017. According to the Health
Resources and Services Administration, approximately 26.5 percent of
women received medical care from Ryan White Programs in 2018. Part D
provides medical and supportive services to a large number of women
over 50 who are 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. The
Ryan White Part D program will dramatically improve health access and
outcomes for many more women, infants, children, and youth living with
HIV disease.
ending the hiv epidemic
New efforts to end the HIV epidemic in the United States focus on
four key strategies: Diagnose Treat, Prevent, and Respond, in order to
reduce new HIV infections by 2030. Ryan White Part D programs are
essential to the success of the Ending the HIV epidemic as Ryan White
Part D is an effective model of care and has been extremely effective
in retaining our most vulnerable populations in care and treatment. The
comprehensive coordinated medical care and support services provided by
Ryan White Part D are uniquely tailored to address the needs of women,
including HIV positive pregnant women, HIV exposed infants, children
and youth living with HIV/AIDS and are central components of a highly
effective model of care designed to achieve optimal health outcomes.
The family-centered primary medical and specialty care along with
supportive services provided by Ryan White Part D funded programs have
enabled these programs to successfully engage and retain vulnerable
populations in much needed care and treatment, resulting in positive
health outcomes. Ryan White Part D is extremely cost effective relative
to the care and treatment services provided to populations highly
impacted by HIV and remain a critical component of the overall Ryan
White Program as their vast networks of service providers are fully
engaged in addressing and meeting the critical healthcare needs of
women, infants, children and youth with HIV and AIDS.
conclusion
The requested increase of $9.9 million in fiscal year 2021 will
enable Ryan White Part D programs, across the country to continue to
deliver life-saving HIV/AIDS care and treatment for women, infants,
children and youth with HIV and to ensure that these populations are
fully engaged and retained in care. We thank the Subcommittee for its
work in ensuring that women, infants, children, and youth, living with
HIV receive the much needed care and treatment services necessary to
sustain 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 Institute
Dear Chairman Blunt and Members of the Subcommittee:
The AIDS Institute, a national public policy, research, advocacy,
and education organization, is pleased to offer testimony in support of
domestic HIV and hepatitis programs in the fiscal year 2021 Labor,
Health and Human Services, Education, and Related Agencies
appropriation measure. Last year, you and your colleagues showed
incredible leadership by increasing funding for domestic HIV programs
by over $300 million. This funding will allow jurisdictions across the
United States to begin planning the Ending the HIV Epidemic Initiative
(ETE Initiative). We urge you to fully fund the request for year two of
the Initiative so that these jurisdictions can transition from planning
to implementation. We also request that core public health programs
that provide essential HIV prevention and treatment services are
adequately funded, and we request significant new funding for viral
hepatitis programs in order to combat the skyrocketing cases of viral
hepatitis in the country. Finally, we urge you to provide immediate
supplemental funding for HIV and hepatitis programs in order to
mitigate the impact COVID-19 has on people living with and at risk of
HIV and hepatitis.
hiv in the united states
There are currently over 1.1 million people living with HIV in the
United States. Since the height of the epidemic, there have been
tremendous advancements in HIV treatment and prevention. A person
living with HIV on treatment can expect to live a near full life, and
if they achieve an undetectable viral load, are unable to pass HIV on
to a partner. The toolbox for HIV prevention is ever expanding, with
pre-exposure prophylaxis (PrEP) now available in addition to
traditional prevention techniques like condoms and syringe service
programs. Despite these advancements, new cases of HIV have been
stagnant at around 39,000 cases a year since 2013, although we are
concerned that the disruption of in-person outreach and care caused by
COVID-19 may result in HIV outbreaks. Ending the HIV epidemic will
require increased Federal investments in the public health
infrastructure that serves people living with and at risk of HIV.
ending the hiv epidemic initiative
In last year's State of the Union Address, the president announced
the Ending the HIV Epidemic Initiative. This initiative has the goal of
reducing new HIV infections by 75 percent in the first 5 years and 90
percent by the tenth year. To do so, the Initiative focuses on 57
jurisdictions across the nation that have the highest burden of new
infections. We thank your Subcommittee for leading Congressional action
last year which resulted in $261 million for the first year of this
Initiative. Jurisdictions across the nation have been eagerly
developing plans to combat the HIV epidemics that cater to the unique
needs of their populations. A significant increase in funding is
necessary for year two of the EHE Initiative so that these
jurisdictions can transition from planning to implementation, directing
resources to areas at most need.
We urge you to fund year two of the EHE Initiative at the
administration's requested levels: $371 million for the CDC Division of
HIV/AIDS Prevention to do targeted testing, connection to treatment,
and robust surveillance; $165 million for the Ryan White HIV/AIDS
Program to increase access to high-quality HIV care and treatment; $137
million for HRSA's Community Health Center program to provide
prevention services emphasizing PrEP; $16 million for NIH's Centers for
AIDS Research to provide best practices to guide the plan; and $27
million for the Indian Health Service to provide HIV prevention,
treatment, education, and hepatitis C (HCV) elimination in Indian
Country.
cdc hiv prevention
CDC's Division of HIV/AIDS Prevention focuses resources on those
populations and communities most affected by investing in high-impact
prevention. One in seven people living with HIV in the United States
are unaware of their status, and many people newly diagnosed with HIV
have been living with HIV for many years. There is no single way to
prevent HIV, but jurisdictions use a combination of effective evidence-
based approaches including testing, linkage to care, education,
condoms, syringe service programs, and PrEP. We urge the Subcommittee
to fund CDC's HIV Prevention program at $1.293 billion, which includes
$100 million for school-based HIV prevention efforts and $371 million
for the Ending the HIV Epidemic Plan.
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program provides medications, medical care,
and essential coverage completion services to almost half of all people
living with HIV in the United States, many of whom are uninsured or
underinsured. With people living longer and continued new diagnoses,
the demands on the program continue to grow. The Ryan White Program
successfully engages individuals in care and treatment, increases
access to HIV medications, and helps over 86 percent of clients achieve
viral suppression. Science has proven that if a person achieves viral
suppression, they cannot transmit HIV to another person, making the
Ryan White Program also integral for preventing new HIV infections. The
AIDS Drug Assistance Program (ADAP), provides people access to
lifesaving medications by helping clients afford insurance premiums,
deductibles, and high cost-sharing of their medications, and is an
important component in the successful health outcomes for Ryan White
clients.
The AIDS Institute requests that the Subcommittee fund the Ryan
White HIV/AIDS Program at a total of $2.652 billion in fiscal year
2020, distributed in the following manner:
Part A at $686.7 million; Part B (Care) at $437 million; Part B
(ADAP) at $943.3 million; Part C at $225.1 million; Part D at $85
million; Part F/AETC at $35.5 million; Part F/Dental at $18 million;
and Part F/SPNS at $34 million; Ending the HIV Epidemic Plan at $165
million.
minority aids initiative
As racial and ethnic minorities in the U.S. are disproportionately
impacted by HIV/AIDS, it is critical that the Subcommittee continue to
fund the Minority HIV/AIDS Fund and Minority AIDS programs at SAMHSA.
We urge the Subcommittee to appropriate $105 million for the Minority
HIV/AIDS Fund; and $160 million for SAMHSA's Minority AIDS Initiative
Program.
viral hepatitis in the u.s
Over the past decade, there has been a resurgence of viral
hepatitis in the United States, largely driven by the opioid epidemic.
CDC data modeling suggests that approximately 3.2 million people are
currently living with HBV or HCV. However, because of insufficient
funding for testing and surveillance, only about half of those
individuals are aware of their infection. Annual diagnoses have
increased substantially, with a more than 400 percent increase in new
infections of HCV from 2010 to 2018. The CDC estimates that over 70
percent of the approximately 44,000 new cases identified in 2018 alone
were the result of injection drug use. Despite the availability of a
highly effective vaccine for HAV and HBV, there have been recent HAV
outbreaks in multiple states across the country, and an increase in HBV
cases nationwide, which are also related to the opioid epidemic.
Despite the availability of a cure for HCV, some 2.4 million people are
currently living with the disease. Left untreated, HBV and HCV can
cause liver damage, cirrhosis, and liver cancer. The Federal Government
must invest in testing, surveillance, and linkage to treatment in order
to staunch the viral hepatitis epidemics.
infectious disease impact of the opioid crisis
The clear link between viral hepatitis, HIV, and opioid use
indicate that there should be better coordination between programs
designed to combat opioid use and to address the HIV and viral
hepatitis epidemics.
Starting in fiscal year 2019, Congress allocated new funds to
enhance the nation's efforts to prevent and treat infectious diseases
commonly associated with injection drug use. That legislation also
authorizes CDC to expand surveillance for those diseases, which
includes viral hepatitis and HIV. The AIDS Institute supports the
administration's proposed $58 million for CDC's infectious diseases and
opioid epidemic efforts. This new funding would allow CDC to work
collaboratively with state and local health departments to improve
knowledge of the full scope and burden of these infectious diseases.
cdc viral hepatitis program
Despite the large increase in the number of cases, the CDC's Viral
Hepatitis program is only funded at $39 million in fiscal year 2020,
which is a far cry from the $393 million the CDC estimated it would
need for a national program focused on decreasing mortality and
reducing the spread of the disease.\1\ Unfortunately, the
administration did not request an increase in its fiscal year 2021
budget proposal. We cannot begin to address the rise in viral hepatitis
and combat the impact of the opioid crisis without a significant
increase in funding commensurate with the importance of eradicating the
epidemic. The AIDS Institute recommends $134 million for CDC viral
hepatitis prevention activities.
---------------------------------------------------------------------------
\1\ Centers for Disease Control and Prevention's Pathway to
Eliminating Hepatitis B and Hepatitis C and Professional Judgment
Budget, fiscal year 2018-fiscal year 2027.
---------------------------------------------------------------------------
syringe service programs
Syringe service programs (SSPs) are an important tool in the fight
to end the opioid, HIV, and hepatitis epidemics because they have been
proven to reduce the incidence of new HIV and viral hepatitis among
people who inject drugs: The presence of SSPs has been associated with
a 50 percent decline in new HIV and viral hepatitis incidence. When
these SSPs are combined with medication-assisted treatment, there is a
two-thirds reduction in HIV and HCV transmission. In order to ensure
that local jurisdictions have the capacity and flexibility to expand
SSPs in areas that could benefit from these services, Congress must
remove the restrictions on the use of Federal funds for the purchase of
sterile syringes. Sterile syringes are a large part of SSPs budgets and
removing this ban will encourage state and local governments to expand
these life-saving and effective programs.
One of our nation's most effective tools in fighting opioid-related
infectious diseases is syringe service programs. We urge your
Subcommittee to remove all restrictions on Federal funding for syringe
service programs, including for the purchase of sterile syringes.
hiv, hepatitis, and the impact of covid-19
The COVID-19 pandemic has significantly impacted the public health
infrastructure in the United States. Public health programs have had to
reckon with scarce resources, reassigned staff, and disruption of in-
person outreach and provision of services in order to protect their
staff and clients from the spread of COVID-19. Experts in HIV and viral
hepatitis are worried that these disruptions are resulting in new HIV
and hepatitis outbreaks because people are not able to access effective
preventive services during the pandemic. We urge your Subcommittee to
provide supplemental funding for these programs immediately to enable
them to grapple more effectively with these challenges and minimize the
damage to people in vulnerable communities and to our nation's effort
to eliminate these epidemics.
We urge you to provide $500 million in supplemental funding for the
Ryan White HIV/AIDS Program to meet the pressing needs of Ryan White
clients during the COVID-19 pandemic. Ryan White programs have been
simultaneously shifting their service delivery model to incorporate
telehealth services, increase case management, cover new costs for
their existing clients, and ensure that they have the capacity to care
for the many new clients they are likely to see as a result of the
economic downturn. Demand for Ryan White services, including the AIDS
Drug and Assistance Program (ADAP), will increase in the next year
because millions of people have lost their jobs and their job-based
health insurance; additional funding is needed immediately to ensure
continued access to care and uninterrupted HIV treatment.
HIV prevention programs across the United States have had to reduce
or suspend in-person testing, reassign staff to COVID-19 response,
suspend PrEP initiations, and transition to telehealth prevention
models. In order for these programs to continue to provide HIV
prevention services, and to reach the goals of the Ending the HIV
Epidemic Initiative, we urge your Subcommittee to provide $100 million
in supplemental funding to the CDC's Division of HIV/AIDS Prevention,
so that HIV prevention programs can expand the infrastructure needed to
provide telehealth prevention services including at-home testing, and
backfill gaps in programming that have occurred because resources and
personnel have been reassigned to COVID-19 response.
[This statement was submitted by Rachel Klein, Deputy Executive
Director, The AIDS Institute.]
______
Prepared Statement of AIDS United
As the committee continues its important deliberations on the
fiscal year 2021 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 and
request that you maintain the Federal Government's commitment to safety
net programs that protect the public health. Specifically, we ask that
you adequately fund the CDC Division of HIV prevention and surveillance
activities at $1.24 billion to prevent new infections, the Ryan White
Program at $2.65 billion to better ensure that all people living with
HIV (PLWH) receive treatment and are retained in care, and HIV/AIDS
Research at the National Institutes of Health at $3.5 billion to
support innovative research moving us ever-closer to a vaccine, better
prevention methods, or a cure. We also urge the committee to end the
ban on the use of Federal funds for syringe exchange to prevent HIV
outbreaks that many parts of the country are at greatly increased risk
of experiencing due to the opioid & overdose epidemics.
We can end the HIV epidemic in the United States. Once, this
sentiment would have been unthinkable, but now, nearly forty years
since the first identified cases, it is a concept endorsed by all major
public health agencies in the country. Recent scientific advances and
groundbreaking HIV research have shown us that not only is it possible
for people living with HIV to live long, healthy lives while on
antiretroviral medication, but that people living with undetectable
viral load cannot transmit the virus to their partners. We are in
possession of the science and the tools that are necessary to end the
HIV epidemic the United States, and the Federal Government has
committed to & developed plans to do so across administrations in the
2010 National HIV/AIDS Strategy and the A Plan for America: Ending the
HIV Epidemic initiative announced in 2018. But this knowledge and
planning alone will not affect the change we need; we must commit the
resources to make plans a reality.
Over one million Americans are living with HIV, and annual HIV
incidence continues to hover at 37,600 new HIV transmissions each year,
due in part to increases in injection drug use across the country
related to the opioid epidemic that are resulting in new HIV outbreaks,
especially in areas with scarce public health resources. It is only
through significant Federal investment and an unyielding commitment to
providing access to the support services needed to ensure communities
impacted by HIV are empowered to prioritize to their care and treatment
that we will be able to end the HIV epidemic.
We are encouraged by the Administration's increased funding request
for HIV prevention, care and treatment for the Ryan White HIV/AIDS
Program, HIV prevention programs at the Centers for Disease Control and
Prevention (CDC), and HRSA's Community Health Centers Program and urge
the Labor-HHS subcommittee to build upon these proposed funding
increases in your fiscal year 2021 budget. However, we also encourage
you to diverge with the Administration's budget request by providing
adequate funding for HIV/AIDS research at the National Institutes of
Health (NIH) and the Substance Abuse and Mental Health Services
Administration (SAMHSA). Below are specific discretionary programs we
ask you to support, along with accompanying justifications.
the ryan white hiv/aids program
The Ryan White HIV/AIDS Program, acting as the payer of last
resort, provides medications, medical care, supportive services, and
essential coverage completion services to almost 550,000 low-income,
uninsured, or underinsured individuals living with HIV. Those living
with HIV who are in care and on treatment have a much higher chance of
being virally suppressed, leading to reduced transmission of the virus,
and the Ryan White Program boasts significantly higher rates of viral
suppression than other care programs: over 85 percent of Ryan White
clients have achieved viral suppression, compared to just 49 percent of
all PLWH nationwide. It is precisely because Ryan White Program clients
can access high-quality, patient-centered, comprehensive care that is
financially accessible and culturally competent that they can remain in
care and adhere to treatment.
The Ryan White Program continues to serve populations that are
disproportionally impacted by HIV, including racial and ethnic
minorities, who make up three-quarters of Ryan White clients. Almost
two-thirds of Ryan White clients are living at or below 100 percent of
the Federal Poverty Level. To improve the continuum of care and
progress toward an HIV/AIDS-free generation, sustained funding for all
parts of the Ryan White Program is needed. With a changing and
uncertain healthcare landscape, continued funding for the Ryan White
Program is critically important to ensure that those at risk of or
living with HIV have uninterrupted access to healthcare, medications,
and services.
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 $2.652 billion in
fiscal year 2021, an increase of $263 million over fiscal year 2020,
distributed as follows: Part A, $686.7 million; Part B/Care, $437
million; Part B/ADAP, $943.3 million; Part C, $225.1 million; Part D,
$85 million; Part F/AIDS Education Training Centers, $58 million; Part
F/Dental, $18 million; Part F/Special Projects of National
Significance, $34 million; and $165 million in additional funding to
support activities in the Ending the HIV Epidemic initiative.
division of hiv/aids prevention and the cdc
Over the almost forty years since the beginning of the epidemic,
there has been incredible progress in the fight against HIV/AIDS.
Because of the efforts by CDC's National Center for HIV/AIDS, Viral
Hepatitis, STD and TB Prevention (NCHHSTP) and its grantees, hundreds
of thousands of new infections have been averted and billions of
dollars in treatment costs have been saved. This confirms that HIV
prevention efforts are working. Through expanded HIV testing efforts,
largely funded by the CDC, the number of people who are aware of their
HIV status has increased from 81 percent in 2006 to 87 percent in 2018;
while all progress is worth celebrating, new testing expansion
opportunities in the Plan for America initiative should equally
energize us to support new and existing, successful testing programs,
to the extent that Congress will fund them.
Continued funding for CDC's HIV prevention programs will support
HIV testing, targeted prevention interventions, public education
campaigns, and surveillance activities. Ending HIV will take a
multifaceted approach. This funding supports a combination of effective
evidence-based approaches including testing, linkage to care, condoms,
and syringe services programs; it also supports access to pre-exposure
prophylaxis (PrEP), the FDA-approved medication that keeps HIV negative
people from acquiring HIV in sexual encounters.
For fiscal year 2021, we urge you to fund the Division of HIV/AIDS
Prevention and the CDC at $1.293 billion.
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 &
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. HIV/AIDS research
supported by the NIH is far-reaching and has supported innovative basic
science for better drug therapies, and behavioral and biomedical
prevention interventions, saving and improving the lives of millions
around the world. Specifically, AIDS research supported by the NIH has
proved the efficacy of PrEP, the groundbreaking effectiveness of
treatment as prevention, and the first partially effective AIDS
vaccine. We are appreciative of the Committee's work to increase
funding for the NIH in recent years and urge you to direct some of
these resources and language to protect such funding to continued HIV/
AIDS research so that more effective HIV treatments and ultimately a
cure can be realized.
We request that HIV/AIDS research at the NIH receive a total $3.502
billion in fiscal year 2021.
combating viral hepatitis and protecting access to sterile syringes
AIDS United strongly urges the Committee to maintain current
language allowing the use of Federal funds for syringe services
programs, and expand eligibility beyond current, limiting allowances
for jurisdictions experiencing or at risk for an HIV outbreak or
elevated levels of HCV and where local public health or local law
enforcement authorities deem a site to be appropriate. People with HIV
infection in the United States are often affected by chronic viral
hepatitis; about one-third experience coinfection with either Hepatitis
B (HBV) or HCV, and viral hepatitis progresses faster and causes more
liver-related health problems among people with HIV than among those
who do not have HIV. Over the last several years, the opioid crisis has
led to concerning numbers of new infections tied to injection drug use,
resulting in nearly 55,000 new hepatitis cases each year. Throttled at
just $39 million a year for the past many years, CDC's viral hepatitis
programs do not have the needed resources to combat the infectious
diseases associated with the opioid epidemic.
The CDC has identified 220 counties that are most vulnerable to
outbreaks of HCV and HIV related to injection drug use. These counties
are spread across 26 states and represent only the top 5 percent of
vulnerable counties overall. At present, more than 93 percent of those
220 counties vulnerable to HIV/HCV outbreaks do not have comprehensive
syringe services programs. Over the past thirty years, the CDC has
collected compelling evidence of syringe services programs'
effectiveness, safety, and cost-effectiveness for HIV prevention among
program participants and for reductions in HIV, HCV, and HBV incidence
rates community-wide. Syringe services programs increase access to
comprehensive resources such as HIV and Hepatitis testing and linkage
to treatment, referral to substance use treatment and assistance,
behavioral health services, primary care, overdose treatment and
education, Hepatitis A and B vaccinations, connections and referrals to
other supportive services, and more.
Syringe services programs are recommended by AIDS United as a key
component of the Department of Health and Human Services' response to
the opioid crisis in CDC, HRSA, and SAMHSA appropriations, and as an
indispensable tool in any efforts to end the domestic HIV epidemic.
AIDS United urges the Committee to adequately fund the CDC Division
of HIV Prevention's surveillance activities at $872.7 million and to
increase funding for the CDC Division of Viral Hepatitis activities to
$134 million for the purpose of ensuring appropriate levels of testing,
education, screening and linkage to care, surveillance, and on-the-
ground syringe services programs that reduce the infectious disease
consequences of the nation's opioid crisis.
A comprehensive accounting of the community's fiscal year 2021
funding priorities may be accessed at bit.ly/ABACFY21 (note: case
sensitive link). Please do not hesitate to be in touch for more
information regarding HIV appropriations with our Vice President for
Policy & Advocacy, Carl Baloney, Jr., at [email protected].
AIDS United looks forward to a positive outcome for the funding
request for HIV/AIDS domestic programs that will enable us to end the
HIV epidemic in the United States. 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.
Sincerely.
[This statement was submitted by Jesse Milan, Jr., JD, President &
CEO, AIDS United.]
______
Prepared Statement of the Alliance to End Slavery and Trafficking
The Alliance to End Slavery and Trafficking (ATEST) thanks you for
your leadership in the fight to end child labor, forced labor and human
trafficking. We appreciate your efforts to pass legislation and provide
resources to Federal agencies engaged in combating these horrific
crimes. We seek your assistance in funding essential programs in the
fiscal year 2021 Labor, Health and Human Services, Education, and
Related Agencies Appropriations bill. The number of trafficking victims
significantly exceeds the availability of services at the Departments
of Labor (DOL), Health and Human Services (HHS) and Education (ED).
ATEST recommends robust funding and accountability for programs at
these key departments to fulfill the highest priority mandates of the
Trafficking Victims Protection Act (TVPA) and related legislation.
ATEST FISCAL YEAR 2021 APPROPRIATIONS REQUEST SUMMARY: LHHS
----------------------------------------------------------------------------------------------------------------
Fiscal Year 2020 Fiscal Year 2021
Department Program Enacted Authorized Funding Appropriation Request
----------------------------------------------------------------------------------------------------------------
Labor International Labor $96,000,000 $130,040,000
Affairs Bureau
-------------------------------------------------------------------------------------------
Employment & Training Report Language
Administration (see below)
----------------------------------------------------------------------------------------------------------------
Health & Human Administration for $28,255,000 $24,000,000 $38,000,000
Services Children and Families,
Victim Services
-------------------------------------------------------------------------------------------
Administration for $3,500,000 $3,500,000 $3,500,000
Children and Families,
National Human
Trafficking Hotline
-------------------------------------------------------------------------------------------
Administration for $147,421,000 $152,420,000 $165,000,000
Children and Families, and
Runaway and Homeless Report Language
Youth Act (see below)
-------------------------------------------------------------------------------------------
Administration for Report Language
Children and Families (see below)
Office of Trafficking
in Persons
----------------------------------------------------------------------------------------------------------------
department of labor
International Labor Affairs Bureau: $130,040,000.--The Bureau of
International Labor Affairs (ILAB) is an essential part of the U.S.
government's international response to forced labor, human trafficking
and child labor. ILAB's mandates touch on key elements of partnership,
prevention, protection and prosecution, such as child labor,
international labor diplomacy, international economic affairs, and
labor-related trade policy. Through highly respected research, grant
making and policy development work, ILAB identifies cases of goods
reported on the annual ``List of Goods Produced by Child Labor or
Forced Labor.'' ATEST was pleased that Congress recognized the need for
increased resources for ILAB's critical work in fiscal year 2020 and
encouraged Congress to continue to enhance efforts to identify . In
fiscal year 2021, we request $27,000,000 for the administration of
ILAB, $59,000,000 for the Child Labor and Forced Labor program,
$36,000,000 for the Workers' Rights program, and $8,040,000 for program
evaluation.
Employment and Training Administration: Report Language.--Labor
trafficking affects both U.S. citizens and foreign nationals working
across many industries, most commonly domestic work, agriculture,
manufacturing, janitorial services, hotel services, construction,
health and elder care, hair and nail salons, and strip club dancing.
DOL needs resources to protect and support victims, particularly with
much needed skills training and job placement services, as well as
providing referrals to shelter, medical care, mental health services,
legal services, and case management. Proposed Report Language: The
Committee encourages the Employment and Training Administration to
increase access and eligibility to employment and training services for
survivors of all forms of human trafficking as required by Sec. 107(b)
of the Trafficking Victims Protection Act (Public Law 106-386). The
Committee also encourages the development and integration of training
to identify potential signs of trafficking and referral options as a
regular activity for State Farmworker Monitor Advocates, and during the
provision of relevant services to particular at-risk populations,
including through the Youth Build, Job Corps and Reentry Employment
Opportunity programs. The Committee also encourages the Department to
continue and expand its pilot initiative to develop and support
networks of service providers in collaboration with HHS and DOJ.
department of health and human services
Administration for Children and Families, Victim Services (ACF):
$38,000,000.--ACF fulfills mandates of the Trafficking Victims
Protection Act to (1) Identify and serve victims who are foreign
nationals; and, (2) Create specialized case management programs to
assist U.S. citizen victims. The number of trafficking victims
certified as needing comprehensive, trauma-informed, gender-specific
services has risen dramatically but funding for services has not kept
pace. We encourage ACF to use a portion of increased funding for legal
services for victims. We request that increased funds be utilized
equally for services for both foreign national victims and U.S. citizen
and legal permanent resident victims, consistent with demonstrated
need.
Administration for Children and Families, the National Human
Trafficking Hotline (NHTH): $3,500,000.--The NHTH is a toll-free 24/7
center available to answer calls, online tips and email queries. The
NHTH collects tips on human trafficking cases, connects victims with
anti-trafficking services in their area (such as shelter, case
management, and legal services), and, where appropriate, reports
actionable tips to law enforcement. The NHTH serves both domestic and
foreign victims inside the U.S. Since 2007, NHTH has received reports
of 51,919 cases. The NHTH also collects and provides valuable data on
human trafficking trends and the prevalence of victims in the U.S. We
request that $3,500,000 be appropriated consistent with the
authorization levels, while preserving existing victim services
funding.
Administration for Children and Families, Runaway and Homeless
Youth Act: $165,000,000.--The Runaway and Homeless Youth Act has laid
the foundation for a national system of services for vulnerable young
people who are at risk of becoming or have already been victims of
exploitation and trafficking. These programs provide homeless and
victimized youth with hope, safety, healing, and opportunities for a
new life through: emergency shelters, family reunification when safe,
aftercare, outreach, education and employment, healthcare, behavioral
and mental health, transitional housing, and independent housing
options. These programs are often in the best position to prevent
trafficking and commercial sexual exploitation and provide early
identification of victims of these crimes. Congress recognized the
critical role that programs funded through RHYA serve to prevent
trafficking, identify survivors, and provide services to runaway,
homeless and disconnected youth by including a 2 year reauthorization
of RHYA in the Juvenile Justice & Delinquency Prevention Act of 2018.
We request $165,000,000, the level previously authorized, to increase
the capacity of programs that serve runaway and homeless youth to
address human trafficking ($140,000,000 for the Consolidated Runaway,
Homeless Youth Programs and $25,000,000 for Prevention Grants to Reduce
Abuse of Runaway Youth), and within these funds designate $5,000,000 to
increase capacity and provide training for service providers to
identify and serve exploited and trafficked youth, and $2,000,000 to
conduct the National Study on the Prevalence, Needs and Characteristics
of Homeless Youth.
Administration for Children and Families, Office of Trafficking in
Persons: Report Language.--In establishing the Office of Trafficking in
Persons (OTIP), HHS underscored the importance of coordinating
trafficking efforts across the Administration for Children and Families
(ACF). ACF works directly with all victims of human trafficking--men,
women, children, LGBTQ, foreign nationals and domestic clients--and the
diverse needs and vulnerabilities of these populations can only be met
by an effective coordinating body networked agency-wide. Proposed
Report Language: Within the funds provided, the Committee encourages
ACF to hire sufficient full time employees to support the Office of
Trafficking in Persons and coordinate trafficking efforts across ACF.
Administration for Children and Families, Family Youth Services
Bureau: Report Language.--The process of informing RHYA grantees has
restricted the ways in which service providers are able to continue to
provide services to vulnerable youth. For the past several years, RHYA
grantees have been notified if they will receive a grant or not within
one day before a grant period is to begin. This lack of sufficient
notice is extremely problematic for agencies and community based
organizations working to serve runaway and homeless youth who face
higher risks of trafficking and violence. We recommend that the current
bureaucratic process be streamlined, so that RHYA grant applicants are
notified regarding whether they will receive a grant or not within at
least 3 months in advance of the start date of a grant. Proposed Report
Language: That when awarding funds under the Runaway and Homeless Youth
Act program, the Secretary shall notify all applicants if they were
successful or not at least 30 days before the grant is to begin as well
as 30 days before an existing grant is set to end.
As a champion for the victims of child labor, forced labor and sex
trafficking, you understand the complexities of these issues and the
resources needed to respond. We have carefully vetted our requests to
focus on the most important and effective programs. We thank you for
your consideration of these requests and your continued leadership. If
you have any questions, please contact ATEST Coalition Co-Chairs Anita
Teekah ([email protected]) or Terry FitzPatrick (terry.fitz
[email protected]).
Sincerely.
Coalition to Abolish Slavery and Trafficking (CAST)
Coalition of Immokalee Workers (CIW)
Free the Slaves
Human Trafficking Institute
National Network for Youth (NN4Y)
Polaris
Safe Horizon
Solidarity Center
T'ruah: The Rabbinic Call for Human Rights
United Way Worldwide
Verite
Vital Voices Global Partnership
ATEST is a U.S.-based coalition that advocates for solutions to
prevent and end all forms of human trafficking and modern slavery
around the world.
______
Prepared Statement of the Alzheimer's Association and
Alzheimer's Impact Movement
The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
appreciate the opportunity to submit written testimony on the fiscal
year 2021 appropriations for Alzheimer's research and public health
activities at the U.S. Department of Health and Human Services.
Specifically, we respectfully request a $354 million increase for
Alzheimer's research at the National Institutes of Health (NIH) and $20
million for implementation of the Building Our Largest Dementia (BOLD)
Infrastructure for Alzheimer's Act (Public Law 115-406) at the Centers
for Disease Control and Prevention (CDC). We detail these requests
below but first want to thank the Subcommittee for it's crucial and
timely work to support Americans affected by COVID-19.
As you know, people living with Alzheimer's and other dementia are
at increased risk of having serious complications relating to COVID-19
due to their typical age and likelihood of coexisting conditions.
According to the CDC, older adults and those with serious chronic
medical conditions like heart disease, diabetes and lung disease are at
higher risk of getting very sick from this virus. There are currently
5.8 million Americans age 65 or older living with Alzheimer's dementia
and more than 95 percent of people with the disease have one or more
other chronic conditions. This includes 38 percent of people with
Alzheimer's that also have heart disease and 37 percent that also have
diabetes. Thank you for your quick, bipartisan work to address and
support this vulnerable population, and all Americans, during this
pandemic.
alzheimer's association/aim
Founded in 1980, the Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care, support, and
research. The Alzheimer's Association is the nonprofit with the highest
impact in Alzheimer's research worldwide and is committed to
accelerating research toward methods of treatment, prevention, and,
ultimately, a cure. The Alzheimer's Impact Movement (AIM) is the
advocacy arm of the Alzheimer's Association, working in strategic
partnership to make Alzheimer's a national priority. Together, the
Alzheimer's Association and AIM advocate for policies to fight
Alzheimer's disease, including increased investment in research,
improved care and support, and development of approaches to reduce the
risk of developing dementia.
alzheimer's impact on american families and the economy
The most important reason to address Alzheimer's is because of the
suffering it causes to millions of Americans and their families.
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. We have yet to
celebrate the first survivor of this devastating disease.
In addition to the suffering caused by the disease, however,
Alzheimer's is also creating an enormous strain on the healthcare
system, families, and Federal and state budgets. While there are over 5
million Americans currently living with the disease, without
significant action, as many as 14 million Americans will have
Alzheimer's by 2050 and costs will exceed $1.1 trillion (in 2020
dollars). 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.
Caring for people with Alzheimer's will cost all payers--Medicare,
Medicaid, individuals, private insurers, and HMOs--nearly $20 trillion
over the next 30 years. As noted in the 2020 Alzheimer's Disease Facts
and Figures report, in 2020 America will spend an estimated $305
billion in direct costs for those with Alzheimer's, including $206
billion in costs to Medicare and Medicaid. Average per person Medicare
costs for those with Alzheimer's and other dementias are more than
three times higher than those without these conditions. Average per
senior Medicaid spending is 23 times higher.
investing in alzheimer's treatments
Congress unanimously passed the National Alzheimer's Project Act
(NAPA) (Public Law 111-375) in 2010, requiring the creation of an
annually-updated strategic National Plan to Address Alzheimer's Disease
(National Plan). The National Plan must include an evaluation of all
federally-funded efforts in Alzheimer's research, care, and services--
along with their outcomes. The primary research goal of the National
Plan is to prevent and effectively treat the disease by 2025.
If America is going to succeed in the fight against Alzheimer's,
Congress must continue to provide the resources scientists need to do
their work. Understanding this, in 2014 Congress passed the
Consolidated and Further Continuing Appropriations Act of 2015 (Public
Law 113-235), which included the Alzheimer's Accountability Act (S.
2192/H.R. 4351). The Alzheimer's Accountability Act requires NIH to
develop a Professional Judgment Budget focused on the research
milestones established by the National Plan. This provides Congress
with an account of the resources that NIH has confirmed are needed to
reach the 2025 goal. The Alzheimer's Association and AIM urge Congress
to fund the research targets outlined in the Professional Judgment
Budget by supporting an additional $354 million for NIH Alzheimer's
funding in fiscal year 2021.
Recent funding increases have been critical to progress toward the
primary research goal to effectively treat and prevent Alzheimer's by
2025--including advances into new biomarkers to detect the disease;
building better animal models to enable preclinical testing of
promising therapeutics; and bolstering the Alzheimer's research
workforce to enable the expertise, experience, and new thinking needed
to understand the complex causes of Alzheimer's disease and related
dementias.
However, Alzheimer's continues to be the only leading cause of
death in the United States without a way to prevent, cure, or even slow
its progression. The primary reason this remains true is that
investment in Alzheimer's research is still only a fraction of what's
been applied over time to address other major diseases. Between 2000
and 2017, the number of people dying from Alzheimer's increased by 145
percent while deaths from other major diseases have decreased
significantly or remained approximately the same.
It is vitally important that NIH continues to increase the
investment in Alzheimer's research so we can see the same promising
advances that other major diseases have realized with sustained, robust
funding. An increase of $354 million in fiscal year 2021 would allow
scientists to target a precision medicine approach to deliver the right
treatments at the right stage of the disease; enable NIH to follow up
on successful Phase I drug trials by initiating more Phase II trials
focused on new therapeutic targets; and support the inclusion of
Alzheimer's phenotype and environmental exposure measures in non-
Alzheimer's cohorts, like cardiovascular disease and cancer, which have
a wealth of data that could unlock new discovery research and
accelerate cross-validation of discoveries made in Alzheimer's cohorts.
A disease-modifying or preventive therapy would not only save
millions of lives but would save billions of dollars in healthcare
costs. Specifically, if a treatment became available in 2025 that
delayed onset of Alzheimer's for 5 years (a treatment similar in effect
to anti-cholesterol drugs), savings would be seen almost immediately,
with Medicare and Medicaid saving a cumulative $535 billion in the
first 10 years.
public health approach to addressing alzheimer's
As scientists continue to search for a way to cure, treat, or slow
the progression of Alzheimer's through medical research, public health
plays an important role in promoting cognitive function and reducing
the risk of cognitive decline. Investing in a nationwide Alzheimer's
public health response will help create population-level improvements,
achieve a higher quality of life for those living with the disease and
their caregivers, and reduce associated costs.
In 2018, Congress acted decisively to address Alzheimer's through
the passage of the BOLD Infrastructure for Alzheimer's Act (Public Law
115-406). This strong bipartisan law authorizes $100 million over 5
years for the CDC to build a robust Alzheimer's public health
infrastructure across the country. We were glad to see CDC receive $10
million in fiscal year 2020 for the first year of BOLD's
implementation. While this funding is an important step forward, CDC
must receive the full $20 million authorized for fiscal year 2021 to
ensure the meaningful impact that Congress intended. The Alzheimer's
Association and AIM urge Congress to include the full $20 million for
the second year of BOLD's implementation at CDC in fiscal year 2021.
With this funding, CDC will establish Alzheimer's and Related
Dementias Public Health Centers of Excellence across the country and
fund state, local, and tribal public health departments to increase
early detection and diagnosis, reduce risk, prevent avoidable
hospitalizations, reduce health disparities, support the needs of
caregivers, and provide care planning for people living with the
disease. These important public health actions can allow individuals
with Alzheimer's to live in their homes longer and delay costly long-
term nursing home care. The law also aims to increase the analysis and
timely reporting of data. This data is critical to identifying
opportunities for public health interventions, helping stakeholders
track progress in the public health response, and enabling state and
Federal policymakers to make informed decisions when developing plans
and policies.
conclusion
The Alzheimer's Association and AIM appreciate the steadfast
support of the Subcommittee and its priority setting activities,
especially during this time. We thank the Subcommittee and Congress for
previous increases in Alzheimer's research activities at NIH, but the
current funding level is still short of the total investment needed to
meet the National Plan's primary research goal of finding a treatment
or cure for Alzheimer's and other dementias by 2025. We ask Congress to
continue to address Alzheimer's with the bipartisan collaboration
demonstrated in previous years by providing an additional $354 million
for Alzheimer's research activities at NIH and $20 million for
implementation of the BOLD Infrastructure for Alzheimer's Act at CDC in
fiscal year 2021.
______
Prepared Statement of the Alzheimer's Foundation of America
Dear Chairman Blunt, Ranking Member Murray and Members of the
Senate Appropriations Subcommittee on Labor, Health and Human Services,
and Education, and Related Agencies:
On behalf of the Alzheimer's Foundation of America (AFA), a
national organization whose mission is to provide support, services and
education to individuals, families and caregivers affected by
Alzheimer's disease and related dementias nationwide, and fund research
for better treatment and a cure, I am submitting the following
appropriation requests to the Senate Appropriations Subcommittee on
Labor, Health and Human Services, and Education, and Related Agencies
(the ``Subcommittee'') for programs impacting persons living with
dementia and their care partners in fiscal year 2021:
--an additional $354 million for a total $3.2 billion appropriation
for Alzheimer's disease clinical research at the National
Institutes of Health (NIH);
--$500 million to fund the Brain Research through Advancing
Innovative Neurotechnologies (BRAIN) Initiative, a trans-agency
effort to arm researchers with revolutionary tools to
fundamentally understand the neural circuits that underlie the
healthy and diseased brain;
--$44.7 billion (a $3 billion increase over fiscal year 2020) for
total spending at the NIH;
--an additional $50 million to fund caregiver supports and services
provided by programs administered by the Administration for
Community Living (ACL), including a $8.5 million increase for
the Alzheimer's Disease Program for a total expenditure of $35
million in fiscal year 2021;
--$20 million to support BOLD Act initiatives at the Centers for
Disease Control and Prevention (CDC); and
--$120 million over fiscal year 2020 spending at the Food and Drug
Administration (FDA) to almost $3.3 billion.
National Institutes of Health (NIH)
AFA is extremely grateful to the Subommittee for approving an
increase in funding for Alzheimer's disease research at NIH for fiscal
year 2020. The $350 million in additional resources for fighting
Alzheimer's disease and related dementias at NIH, coupled with other
increases in recent past fiscal years, will greatly increase our
chances that promising research gets funded as we move closer to the
goal of finding a cure or disease-modifying treatment by 2025 as
articulated in the National Plan to Address Alzheimer's Disease.
Yet, meaningful treatment is still some ways off and basic science
into dementia--the type of research funded through NIH--remains vital
to finding a cure.
AFA asks the Subcommittee to build upon past progress and continue
making the battle against Alzheimer's disease a national priority. To
this end, AFA urges the Subcommittee to provide an additional $354
million, for a total of approximately $3.2 billion for Alzheimer's
disease clinical research at NIH in fiscal year 2021.
The BRAIN Initiative is a large-scale effort to accelerate
neuroscience research by equipping researchers with the tools and
insights necessary for treating a wide variety of brain disorders,
including Alzheimer's disease, schizophrenia, autism, epilepsy, and
traumatic brain injury. By mapping whole brains in action, the ability
to identify thousands of brain cells at a time and development of
innovative brain scanners, BRAIN Initiative research advances and tools
are needed to better understand the brain and cognitive functioning.
AFA is asking that $500 million be allocated to conduct BRAIN
Initiative research for fiscal year 2021.
AFA also urges the Subcommittee appropriate at least $44.7 billion
for total NIH spending in fiscal year 2021, a $3 billion increase over
the NIH's program level funding in fiscal year 2020, as recommended by
the Ad Hoc Group for Medical Research. This funding level would allow
for meaningful growth above inflation in the base budget that would
expand NIH's capacity to support promising science in all disciplines.
It also would ensure that funding from the Innovation Account
established in the 21st Century Cures Act would supplement the agency's
base budget, as intended, through dedicated funding for specific
programs.
Centers for Disease Control and Prevention (CDC)
Last year Congress passed, and the President signed, the Building
Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act which
calls for the Centers for Disease Control and Prevention (CDC) to
establish Centers of Excellence in Public Health Practice dedicated to
promoting Alzheimer's disease management and caregiving interventions,
as well as educating the public on Alzheimer's disease and brain
health, will establish Alzheimer's disease a public health issue
increasing American awareness and care training around the disease. To
fund BOLD Act initiatives at CDC, AFA is requesting $20 million in
appropriations for fiscal year 2021.
Food and Drug Administration (FDA)
AFA is calling for a $120 million increase at FDA in fiscal year
2021. Such an increase would strengthen FDA systems that guide and
support agency decisionmaking and stimulate innovation for medical
products, including improvements in drug and device manufacturing,
advances in the use of real world evidence in medical product
development, revisions to the regulatory framework for digital health
technology, enhancements to research on rare diseases such as less
common forms of dementia, and new systems that could speed the
introduction of cost-saving generic drugs.
Administration on Community Living (ACL)
AFA is requesting a $50 million increase for vital ACL programming
across-the-board, including an $8.5 million increase to the Alzheimer's
Disease Program for a total funding of $35 million in fiscal year 2021.
In addition, AFA is requesting that the following amounts be allocated
to these programs that directly impact those living with dementia:
--National Family Caregiver Support Program (NFCSP): NFCSP provides
grants to states and territories, based on their share of the
population aged 70 and over, to fund a range of supportive
services that assist family and informal caregivers in caring
for those with dementia at home for as long as possible, thus
providing a more person-friendly and cost-effective approach to
institutionalization. AFA urges that an additional $27.2
million (for a total of $213.2 million) be appropriated in
fiscal year 2021 to support this important program.
--RAISE Act Family Caregiver Advisory Board: AFA recommends that the
Subcommittee allocate $300,000 fund and staff a Family
Caregiver Advisory Board to develop a national family caregiver
plan as envisioned under the RAISE Family Caregiver Act.
--Lifespan Respite Care Program (LRCP): AFA urges the Subcommittee to
allocate $20 million--a $14 million increase--to LRCP in fiscal
year 2021. LRCP provides competitive grants to state agencies
working with Aging and Disability Resource Centers and non-
profit state respite coalitions and organizations to make
quality respite care available and accessible to family
caregivers regardless of age or disability.
AFA understands that during this time of crisis, Congress is
working hard to stem fallout of both the human and fiscal toll of
COVID-19. We are grateful for your efforts and urge that the
Subcommittee continues making services and supports available to our
nation's most vulnerable populations- including those older Americans
with chronic conditions--a priority. We know that through
determination, sacrifice and resilience, Americans will rise to the
challenge and take the necessary steps to mitigate the fallout of this
public health emergency.
Again, AFA thanks the Subcommittee for the opportunity to present
our recommendations and looks forward to working with you through the
appropriations process. Please contact me at [email protected] or
Eric Sokol, AFA's senior vice president of public policy, at
[email protected], if you have any questions or require further
information.
______
Prepared Statement of the American Academy of Allergy,
Asthma, & Immunology
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, the American Academy of Allergy, Asthma, & Immunology
(AAAAI) thanks you for the opportunity to submit written testimony on
the U.S. Department of Health and Human Services (HHS) fiscal year 2021
appropriations bill. AAAAI respectfully requests the subcommittee to
include a $6.1 million increase in funding for the Consortium on Food
Allergy Research (CoFAR) which is within the National Institute of
Allergy and Infectious Disease (NIAID) at the National Institutes of
Health (NIH). In addition, we request report language reflecting the
importance of NIH engaging in trans-NIH research on food allergies.
Established in 1943, AAAAI is a professional organization with more
than 7,000 members in the United States, Canada, and 72 other
countries. This membership includes board certified allergist/
immunologists, other medical specialists, allied health and related
healthcare professionals--all with a special interest in the research
and treatment of patients with allergic and immunological diseases.
food allergies
Food allergies affect 32 million Americans, including 6 million
children. Each year, more than 200,000 Americans require emergency
medical care for allergic reactions to food--equivalent to one trip to
the emergency room every three minutes.
The Consortium on Food Allergy Research--CoFAR--was established by
the National Institutes of Health (NIH) within the National Institute
of Allergy and Infectious Disease (NIAID) in 2005. Over the following
15 years, CoFAR discovered genes associated with an increased risk for
peanut allergy and has also identified the most promising potential
treatments for egg and peanut immunotherapy, among many other
accomplishments. Breakthroughs like these, scaled across other major
food allergies, can significantly improve the quality of life for tens
of millions of Americans. Its annual $6.1 million budget is a
relatively small portion within NIH's almost $40 billion budget, yet
CoFAR has been able to achieve massive strides in the study of food
allergy prevention and treatment.
AAAAI enthusiastically supports an increase in funding for CoFAR of
$6.1 million, annually, bringing its yearly budget up to $12.2 million.
With its relatively low current level of funding, CoFAR has been able
to accomplish breakthroughs in the under-researched field of food
allergies. It is crucial that we continue investing at proportional
levels given the scale of this condition which impacts 10.8 percent of
the U.S. population.
AAAAI also requests that the Subcommittee's report accompanying the
fiscal year 2021 Labor/HHS appropriation reflects the importance of
trans-NIH research on food allergies. AAAAI strongly supports the
following NIAID report language submitted by Sen. Richard Blumenthal
(D-CT) that acknowledges the groundbreaking work of CoFAR and
encourages robust investment to expand its research breadth and
network.
Food Allergies.-The Committee recognizes the serious issue of food
allergies which affect approximately 8 percent of children and 10
percent of adults in the United States. The Committee commends the
ongoing work of NIAID in supporting a total of 17 clinical sites for
this critical research, including seven sites as part of the Consortium
of Food Allergy Research (CoFAR). The Committee includes $12,200,000,
an increase of $6,100,000, for CoFAR to expand its clinical research
network to add new centers of excellence in food allergy clinical care
and to select such centers from those with a proven expertise in food
allergy research.
In addition to AAAAI, the CoFAR funding request and report language
are supported by the American College of Allergy, Asthma & Immunology;
Allergy & Asthma Network; Asthma and Allergy Foundation of America;
Food Allergy & Anaphylaxis Connection Team; Food Allergy Research and
Education; and International FPIES Association.
penicillin allergy testing
AAAAI also wishes to express its appreciation to the subcommittee
for the inclusion of language regarding the importance of penicillin
allergy testing in the fiscal year 2020 appropriations bill. The
discovery of penicillin opened the door to medical innovation allowing
surgeries to be performed, organs to be transplanted, as well as combat
wounds and burn victims to be treated. AAAAI encourages more widespread
and routine performance of penicillin skin testing for patients with a
history of allergy to penicillin or another beta-lactam drug (e.g,
ampicillin or amoxicillin). Penicillin allergy testing can accurately
identify the approximately 9 of 10 patients who, despite reporting a
history of penicillin allergy, can safely receive penicillin. On behalf
of the patients we serve, thank you for your leadership in giving
penicillin allergy testing the attention it deserves.
Thank you for your consideration of these requests. Please contact
Sheila Heitzig, JD, MNM, CAE, AAAAI Director of Practice and Policy, at
[email protected] if you have any questions or would like additional
information.
______
Prepared Statement of the American Academy of Family Physicians
On behalf of the American Academy of Family Physicians (AAFP),
which represents 136,700 family physicians and medical students across
the country, I urge you to prioritize primary care in your fiscal year
2021 spending bills. Family physicians are specialists with training to
provide the full scope of care to patients of all ages and are caring
for the populations most vulnerable to COVID-19. According to a recent
survey,\1\ 47 percent of primary care clinicians report they have laid
off/furloughed staff, two-thirds report that less than half of what
they do is reimbursable, and 45 percent are unsure if they have the
funds to stay open for the next four weeks. Primary care practices
already have financially thin operating margins, The AAFP therefore
asks that the Committee provide the following appropriations for the
agencies and programs in the Department of Health and Human Services
(HHS) which our members and their patients rely on for access to care,
the research to improve efficacy and safety, essential family physician
workforce programs, and disease prevention and health promotion
efforts.
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\1\ Etz, Rebecca ``Quick COVID-19 Primary Care Survey'' https://
www.pcpcc.org/2020/04/23/primary-care-covid-19-week-6-survey.
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centers for medicare & medicaid services
We appreciate the swift action of the Congress to enact programs to
respond to the pandemic and steps taken by HHS and the Centers for
Medicare & Medicaid Services (CMS), but more support is needed for
primary care if we wish to maintain a viable healthcare system
throughout the pandemic and into the future.
The AAFP urges Congress to codify the Medicare Accelerated and
Advanced Payment (AAP) program for Part B providers and extend it until
at least the end of 2020. The abrupt suspension of the AAP for Part B
providers negatively impacted primary care physicians and hindered
their ability to maintain practice operations in the midst of this
pandemic. This mechanism, which was voluntary, provided an ability to
stem some of the losses that primary care physicians are experiencing.
While we were concerned with the short repayment deadline and high
interest rate, we believe that the program was an important component
of a multi-faceted strategy to get critical support to primary care and
we urge you to reinstate and extend it.
The COVID-19 pandemic has underscored that fee-for-service is an
inappropriate structure to meaningfully resource primary care. This
public health emergency should accelerate shifts to more sustainable
models of care such as prospective, global payments for primary care.
Several models have shown promise by resourcing practices in a
prospective manner to allow for investments and resources to treat
their population while balancing the need to deliver specialized care
based on unique patient needs. Primary Care First, which has been
approved by HHS for implementation in January 2021 on a limited scale,
is one such model for achieving this. Congress should direct the
Secretary of HHS to immediately expand Primary Care First (PCF) as a
national model and allow all primary care physicians, on a voluntary
basis, to begin participating in the model beginning January 1, 2021.
Payment rates in PCF should reflect the final 2020 Medicare
Physician Fee Schedule (MPFS) rule, in which CMS wisely adopted payment
changes to address the undervaluation of E/M office/outpatient visit
services to take effect in 2021. In addition to reopening and expanding
PCF participation for 2021, the AAFP also recommend that CMS add a 2022
program start date for physicians who are eager to move into the model
but require more time to do so. It is time that we fundamentally change
how primary care is financed by providing prospective payments to all
primary care physicians participating in Medicare coupled with
expanding Primary Care First as an appropriate bridge to a new future.
CMS will require an adequate appropriation for program management
to meet the current and future needs of the millions of Americans
enrolled in Medicare, Medicaid, the Children's Health Insurance Program
and private insurance coverage in the Marketplace. The AAFP asks that
the Committee provide CMS with at least $3.7 billion for program
management.
Immediate Financial Relief for Primary Care
Congress should authorize an additional $20 billion for HHS'
Provider Relief Fund or direct HHS to set-aside $20 billion of the
current Fund specifically for physicians and physician practices. The
AAFP recommends that HHS prioritize financial support to primary care
physicians--defined as family medicine, pediatrics, general internal
medicine and geriatrics--by distributing provider relief funds using
the foundation of the previously used model as follows:
Provide a one-time payment that is equal to the total Medicare
fee-for-service payments distributed to each eligible NPI and/
or TIN for July through December 2019 multiplied by 3 to
accommodate for lost revenue from traditional Medicare,
Medicaid, Medicare Advantage and commercial insurers.
[Total Medicare FFS Payments (July--December 2019) 3 = Payment
per primary care physician]
We believe that building on this existing formula allows HHS to
quickly and efficiently distribute financial support to primary care
practices.
health resources and services administration
The AAFP opposes the proposed cuts of $742 million in HRSA's
discretionary fiscal year 2021 budget proposal and calls for $8.8
billion for HRSA programs in fiscal year 2021. The AAFP supports the
bipartisan request of $512 million for the HRSA Title VII health
professions programs in fiscal year 2021. In particular, we recommend
$125 million for the Title VII Primary Care Training & Enhancement
which supports family medicine residencies and departments. These funds
are needed to support faculty retention, recruit and retain students
into primary care, develop new curriculum related to pandemic, and meet
the need to increase the number of full scope primary care physicians
to care for patients throughout the nation.
In addition, the AAFP requests that the Committee fund the Title
VII Diversity Pipeline Programs, Health Careers Opportunity Program,
Centers of Excellence, Faculty Loan Repayment, and Scholarships for
Disadvantaged Students at $100 million in fiscal year 2021. The AAFP
also requests $45.4 million for the Title VII Area Health Education
Centers to provide grant support for health professions workforce
development in shortage areas.
Another important health professions workforce initiative
administered by HRSA is the Rural Residency Planning and Development
Program. The AAFP asks that the Committee provide $11 million for the
HRSA Rural Residency Planning and Development Program to support the
development of new rural residency programs or Rural Training Tracks in
family medicine, internal medicine and psychiatry. Most of the 62
million people living in a rural community or county depend on a family
physician for their healthcare. The AAFP welcomes this important
initiative to address rural training challenges as a way to reduce
healthcare disparities facing rural communities.
The programs administered by HRSA's Office of Rural Health Policy
work to reduce the unique obstacles faced by physicians and patients in
rural areas. The impact of COVID-19 has been and will continue to be
devastating for the nation, but rural communities and the family
physicians who care for them are uniquely challenged by this pandemic
in significant and consequential ways. The AAFP strongly supports an
increased investment in the Office of Rural Health Policy to support
the following programs:
--Rural Outreach Network Grants ($87.5 million), a community-based
grant program aimed towards promoting rural healthcare services
by enhancing healthcare delivery in rural communities.
--Rural Research and Policy Analysis ($11.4 million), the only
Federal research program entirely dedicated to producing
policy-relevant research on healthcare and population health in
rural areas.
--State Offices of Rural Health ($12.5 million), a grant program is
to assist states in strengthening rural healthcare delivery
systems.
--Rural Communities Opioid Response ($121 million), funds multi-
sector consortia to enhance their ability to implement and
sustain SUD/OUD prevention, treatment, and recovery services in
underserved rural areas.
--Rural Hospital Flexibility Grants Program ($59 million) to support
critical access hospitals (CAHs) in quality improvement,
quality reporting, performance improvement, and benchmarking;
to assist facilities seeking designation as CAHs; and to create
a program to establish or expand the provision of rural
emergency medical services.
The AAFP commends the Committee for expanding in fiscal year 2020
the Rural Maternity and Obstetrics Management Strategies (RMOMS)
Program and urge that it be increased again to $9.9 million. In
addition, we recommend that the Committee provide $31.9 million for the
Office for the Advancement of Telehealth, including the telehealth
Network Grant Program for telehealth funding for the Small Rural
Hospital Improvement Grant Program as recommended by the National Rural
Health Association.
HRSA also administers the National Health Service Corps (NHSC)
which is plays a vital role in addressing the challenge of regional
health disparities arising from physician workforce shortages by
offering financial assistance to meet the workforce needs of
communities designated as health professional shortage areas. The AAFP
recommends that the Committee provide $132 million in discretionary
funding for the NHSC in fiscal year 2021, and we are working with NHSC
stakeholders to strongly urge Congress to provide a long term extension
of the program's mandatory trust fund.
The AAFP supports continued funding for HRSA's Title X Federal
grant program dedicated to providing women and men with comprehensive
family planning and related preventive health services. The AAFP
strongly recommends adequate funding to support Title X clinics which
offer necessary screening for sexually transmissible infections, cancer
screenings, HIV testing, and contraceptive care of $286.5 million for
HRSA's Family Planning Grants in fiscal year 2021.
agency for healthcare research and quality
Expanding the capacity for practice-based research supported by the
Agency for Healthcare Research and Quality (AHRQ) is particularly
critical in the face of the changes in medical practice brought on by
COVID-19. AHRQ-supported research has long been important to providing
the evidence basis for the comprehensive primary care medicine
practiced by America's family physicians. While the AAFP initially
supported the Friends of AHRQ request for fiscal year 2021 of $471
million in budget authority for AHRQ, which is consistent with the
fiscal year 2010 level adjusted for inflation, Congress must do more
than just allow AHRQ to rebuild portfolios terminated as a result of
years of past cuts.
The AAFP urges the Committee to provide an additional $71 million
to AHRQ in the next COVID-19 relief measure to allow the agency to
assess how physicians, healthcare professionals, hospitals, and health
systems are responding to COVID-19. It is critical to evaluate the
impact on healthcare of the rapid expansion of telemedicine during the
outbreak and to explore strategies to reduce needless administrative
burden related to telemedicine. Clearly, COVID-19 has had an impact on
medical practice, and AHRQ is uniquely qualified to research its impact
on quality, safety, and value of health systems' response. Further,
AHRQ-support research should examine the role of primary care practices
and professionals during the pandemic. Since patients have put off
going to see their family physician during the pandemic for non-
coronavirus-related needs, the impact on patients from deferred primary
care must also be studied. In addition, it is imperative that AHRQ
explore how to alleviate physical and emotional burdens on physicians,
patients, and communities.
centers for disease control and prevention
In the midst of the COVID-19 pandemic, Congress must reject the
proposed $693 million in cuts to the Centers for Disease Control and
Prevention (CDC) in the fiscal year 2021 budget request. The AAFP urges
that the Committee provide at least $8.3 billion in your fiscal year
2021 bill for the broad portfolio of prevention and public health
programs administered by the CDC. Family physicians provide preventive
care, including routine checkups, health risk assessments, immunization
and screening tests, and personalized counseling on maintaining a
healthy lifestyle. The AAFP is one of over 100 organizations supporting
the 22 by 22 campaign urging Congress to increase funding for the CDC
by 22 percent by fiscal year 2022.
The COVID-19 pandemic is changing rapidly and requires different
strategies to maintain clinical preventive services, including
immunization. The AAFP supports the important role in of the CDC's
National Center for Immunization and Respiratory Diseases programs and
urge that the Committee provide at least $830 million for current
programs and such sums as are needed when a COVID-19 vaccine is
approved.
Although CDC has a high profile role in addressing the COVID-19
pandemic, it continues to work on a wide variety of unrelated projects
that are designed to improve the nation's health. The AAFP recently
promoted to our members the many public awareness campaigns available
from the CDC's Division of STD Prevention. In February of 2020, we
provided the CDC's first comprehensive guidelines for the treatment of
latent tuberculosis infection. So, we were pleased that the fiscal year
2021 budget proposal included an increase for the CDC HIV/AIDS, Viral
Hepatitis, Sexually Transmitted Infections and Tuberculosis line to
$1.55 billion to increase the investment in both domestic HIV/AIDS
prevention and research and infectious diseases and the opioid
epidemic. We ask that the Committee provide at least $1.55 billion for
the CDC HIV/AIDS, Viral Hepatitis, Sexually Transmitted Infections and
Tuberculosis.
The AAFP values the CDC Chronic Disease Prevention and Health
Promotion funding to support our efforts to prevent and control chronic
diseases and associated risk factors and reduce health disparities. We
appreciate that the Committee rejected the eliminations proposed in
fiscal year 2020 for this important activity and increased its
appropriation to $1.24 billion and encourage the Committee to provide
$1.25 billion for CDC Chronic Disease Prevention and Health Promotion
in fiscal year 2021.
Smoking directly contributes to the deaths of more than 440,000
Americans annually, and the AAFP has called for bold new initiatives
are necessary to decrease the harm caused by tobacco and nicotine use.
We appreciate that the Committee increased funding for CDC Office on
Smoking and Health (OSH) by $20 million in fiscal year 2020 to $230
million, and we believe that additional investments in tobacco
prevention and cessation will save lives and reduce the cost of
treating tobacco-caused disease. The AAFP recommends that you to
increase funding for CDC's OSH to $310 million to enable CDC to address
the new challenges posed by e-cigarettes while continuing to make
progress reducing the death and disease caused by other tobacco
products.
The United States nationally is in the acceleration phase of the
pandemic. On behalf of our patients and our communities, the AAFP urges
the Committee to take prompt action on these vital priorities so that
we can return to our important work of providing preventive medical
care--including vaccinations, managing chronic diseases, and promoting
overall population health and wellness in our communities.
[This statement was submitted by Gary LeRoy, MD, FAAFP, President,
American Academy of Family Physicians.]
______
Prepared Statement of the American Academy of Pediatrics
The American Academy of Pediatrics (AAP), a non-profit professional
organization of 67,000 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 2021 and beyond. AAP urges all Members of
Congress to put children first when considering short and long-term
Federal spending decisions, and supports funding levels for the
following programs: $50 million for Firearm Injury and Mortality
Prevention Research at the Centers for Disease Control and Prevention
(CDC) and National Institutes of Health (NIH), $60 million for the
Administration for Children and Families (ACF)'s Child Abuse Prevention
and Treatment Act Plans of Safe Care Grants, $50 million for Pediatric
Subspecialty Loan Repayment at the Health Resources and Services
Administration (HRSA), $22.334 million for Emergency Medical Services
for Children (HRSA), $20 million for the Assistant Secretary for
Preparedness and Response (ASPR)'s Pediatric Disaster Care Pilot
Program, $168.5 million for CDC's National Center for Birth Defects and
Developmental Disabilities, $10 million for Pediatric Mental Health
Care Access Grants (HRSA), $8 million for Screening and Treatment for
Maternal Depression (HRSA), and $226 million for Global Immunizations
at CDC, as well as report language for Research on Adolescent E-
Cigarette Cessation at NIH.
firearm injury and mortality prevention research (cdc and nih)
The AAP is tremendously appreciative of and applauds Congress for
providing $25 million total, split evenly between CDC and NIH, for
firearm injury and mortality prevention research in fiscal year 2020.
federally funded public health research has a proven track record of
reducing public health-related deaths, whether from motor vehicle
crashes, smoking, or Sudden Infant Death Syndrome. This same approach
should be applied to increasing gun safety and reducing firearm-related
injuries and deaths, including suicides, and CDC and NIH research will
be as critical to that effort as it was to these previous public health
achievements. The dearth of research on how best to prevent firearm-
related morbidity and mortality makes it difficult to address this
public health problem.
Fiscal Year 2021 Request: $50 million total ($25 million to both CDC
and NIH);
Fiscal Year 2020 Level: $25 million total ($12.5 million to
both CDC and NIH).
child abuse prevention and treatment act (capta)
plans of safe care grants (acf)
The AAP appreciates the continued $60 million designated for CAPTA
Plans of Safe Care Grants in fiscal year 2020. CAPTA is the only
Federal law dedicated to primary prevention of child abuse. CAPTA
requires states to refer families to child welfare services if an
infant is identified at birth as affected by prenatal substance
exposure, withdrawal symptoms, or a Fetal Alcohol Spectrum Disorder.
Plans of safe care follow the best evidence for treating maternal
substance use, including early identification and screening,
appropriate treatment, consistent hospital screening of mothers and
their infants, and information sharing across systems. These expanded
requirements represent an opportunity to address the child health
impact of the opioid epidemic.
Fiscal Year 2021 Request: $60 million dedicated to Plans of Safe Care;
Fiscal Year 2020 Level: $60 million dedicated to Plans of Safe
Care.
pediatric subspecialty loan repayment program (hrsa)
The AAP requests $50 million in initial funding for the Pediatric
Subspecialty Loan Repayment Program, a Title VII health professions
program to improve access to care for children with special healthcare
needs by offering loan repayment to pediatric subspecialists and child
mental health providers who agree to serve in an underserved area. This
program was recently reauthorized for 5 years as part of the
Coronavirus Aid, Relief, and Economic Security (CARES) Act. The United
States' supply of pediatric subspecialists is inadequate to meet
children's health needs. Many children must wait more than 3 months for
an appointment with a pediatric subspecialist, and approximately 1 in 3
children must travel 40 miles or more to receive care from a
pediatrician certified in certain subspecialties such as developmental
behavioral pediatrics.
Fiscal Year 2021 Request: $50 million; Fiscal Year 2020 Level: Never
funded.
emergency medical services for children (hrsa)
The AAP urges the committee to maintain $22.334 million in funding
for the Emergency Medical Services for Children (EMSC) Program in
fiscal year 2021. EMSC 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 is available for the ill and injured child or
adolescent, pediatric services are well integrated into an EMS system
backed by optimal resources, and that the entire spectrum of emergency
services is provided to all children and adolescents no matter where
they live.
Fiscal Year 2021 Request: $22.334 million; Fiscal Year 2020 Level:
$22.334 million.
pediatric disaster care pilot program (aspr)
The Academy urges the Subcommittee to provide $20 million to ASPR's
National Disaster Medical System to continue and expand the Pediatric
Disaster Care pilot program. This funding will build on lessons learned
and expand local and statewide capabilities to develop a regional and
nationwide capability to respond to the needs of pediatric patients in
the ongoing COVID-19 pandemic and any future public health emergency.
The two Pediatric Disaster Centers of Excellence in California and Ohio
funded under this pilot are addressing appropriate planning and
response capabilities that support the specific needs of children
during public health emergencies and disasters, such as mass casualty
events. As the nation grapples with the impacts of the COVID-19
pandemic, including on children, the importance of this program and
ensuring increased, continued funding cannot be understated.
Fiscal Year 2021 Request: $20 million (also the level of the
President's Fiscal Year 2021 Budget Request); Fiscal Year 2020
Level: $6 million.
national center for birth defects and developmental disabilities (cdc)
The AAP requests $168.5 million for fiscal year 2021 for the
National Center for Birth Defects and Developmental Disabilities
(NCBDDD). According to the CDC, birth defects affect 1 in 33 babies and
are a leading cause of infant death in the United States. NCBDDD
conducts important research on fetal alcohol syndrome, infant health,
autism, attention deficit and hyperactivity disorders, congenital heart
defects, and other conditions like Tourette Syndrome, Fragile X, Spina
Bifida and Hemophilia. NCBDDD supports extramural research in every
State and has played a crucial role in the country's response to the
Zika virus. Furthermore, staff from NCBDDD are assisting in the
nation's response to the ongoing COVID-19 public health emergency.
Fiscal Year 2021 Request: $168.5 million; Fiscal Year 2020 Level:
$160.81 million.
pediatric mental health care access grants (hrsa)
The AAP appreciates the $10 million in fiscal year 2020 and urges
Congress to maintain funding at $10 million in fiscal year 2021 for
Pediatric Mental Health Care Access Grants, which support the
development of new statewide or regional pediatric mental healthcare
telehealth access programs, as well as the improvement of already
existing programs. Research shows pervasive shortages of child and
adolescent mental/behavioral health specialists throughout the U.S.
Integrating mental health and primary care has been shown to
substantially expand access to mental healthcare, improve health and
functional outcomes, increase satisfaction with care, and achieve costs
savings.
Fiscal Year 2021 Request: $10 million; Fiscal Year 2020 Level: $10
million.
screening and treatment for maternal depression (hrsa)
The AAP thanks the committee for providing $5 million in fiscal
year 2020 for the Screening and Treatment for Maternal Depression grant
program, which helps to establish, improve, or maintain programs that
increase screening, assessment, and treatment services for maternal
depression for women who are pregnant or have given birth within the
preceding 12 months. Maternal depression can lead to increased costs of
medical care, inappropriate medical care, child abuse and neglect,
discontinuation of breastfeeding, family dysfunction, and may adversely
affect early brain development in children.
Fiscal Year 2021 Request: $8 million; Fiscal Year 2020 Level: $5
million.
global immunization--polio and measles/other (cdc)
Vaccines are one of the most cost-effective and successful public
health solutions available, saving the lives of two to three million
children each year. The CDC provides countries with technical
assistance and disease surveillance support, with a focus on
eradicating polio, reducing measles deaths, and strengthening routine
vaccine delivery. Global mortality attributed to measles, one of the
top five diseases killing children, declined by 79 percent between 2000
and 2015 thanks to expanded immunization, saving an estimated 20.3
million lives. A global immunization campaign has reduced the number of
polio cases by more than 99 percent since 1988. However, until the
world is free of measles and polio, all children, even those in the
United States, remain at risk. In 2019, there were 1,282 individual
confirmed measles cases in 31 states. This was the highest number of
confirmed cases reported nationally since 1992, despite measles being
declared eliminated in the United States in 2000. This outbreak was in
part due to unvaccinated travelers importing the virus from parts of
the world where it remains common. Only two countries had indigenous
transmission of wild polio virus in 2018: Afghanistan and Pakistan. We
must complete polio eradication or face a potential global resurgence,
which could result in as many as 200,000 cases of polio annually within
a decade.
Fiscal Year 2021 Request: $226 million ($176 million for Polio and $50
million for Measles/Other); Fiscal Year 2020 Level: $226
million ($176 million for Polio and $50 million for Measles/
Other).
research to help adolescents quit e-cigarettes (nih)
The rise of JUUL and similar pod-based e-cigarettes has fueled
continued dramatic increases in adolescent e-cigarette use, with recent
surveys finding more than 5 million middle and high school students are
current users. The AAP urges Congress to include report language to
encourage research at the National Cancer Institute on adolescent e-
cigarette cessation as there is virtually no data on how to treat an
adolescent with e-cigarette dependence, and no randomized controlled
trials specific to adolescent e-cigarette cessation have been conducted
to date. The pediatric community is in urgent need of research to
conclusively identify the most effective tobacco cessation modalities
for adolescents addicted to e-cigarettes.
Fiscal Year 2021 Request: Report language--``Youth Tobacco
Cessation.--The committee is concerned about the increase in youth e-
cigarette addiction and the significant lack of research to inform
effective therapies to help youth quit. The United States Preventive
Services Task Force has determined that there is not sufficient
evidence to recommend adolescent use of existing pharmacological
tobacco cessation treatments that are currently approved for adults.
There is great need for additional clinical trials and other research
to determine if new or existing pharmacological treatments, behavioral
interventions, or combination therapies have the potential to benefit
adolescents in quitting cigarettes and other forms of tobacco,
including e-cigarettes.''
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 2021 and beyond. If we
may be of further assistance, please contact the AAP Department of
Federal Affairs, Patrick Johnson at [email protected]. Thank you for
your consideration.
[This statement was submitted by Sally Goza, MD, FAAP, President,
American Academy of Pediatrics.]
______
Prepared Statement of the American Alliance of Museums
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, thank you for the opportunity to submit this testimony.
My name is Laura Lott, and I am President and CEO of the American
Alliance of Museums (AAM). I urge you to provide the Office of Museum
Services (OMS) within the Institute of Museum and Library Services
(IMLS) with at least $42.7 million for fiscal year 2021, the amount
approved by the House of Representatives last year.
I want to express the museum field's gratitude for the $38.5
million in funding for OMS in fiscal year 2020, and we applaud the
bipartisan group of 41 Senators who wrote to you in support of fiscal
year 2021 OMS funding. This small program is a vital investment in
protecting our nation's cultural treasures, educating students and
lifelong learners alike, and bolstering local economies. The American
Alliance of Museums, representing more than 35,000 individual museum
professionals and volunteers, institutions of all types, and corporate
partners serving the museum field, stands for the broad scope of the
museum community.
In addition to regular appropriations, we request at least $6
billion in supplemental appropriations for IMLS-Office of Museum
Services to administer specifically for nonprofit museums in COVID-19
economic relief to provide emergency assistance.\*\ This would include
assisting museums in developing and sharing distance learning content,
as well as pandemic recovery planning and implementation. (Please see
this request letter from more than 50 national, regional, and state
museum associations.) Museums will be vital to our nation's recovery
from this pandemic, and after sudden and long-term closures, they will
require financial assistance to reopen, maintain their staffs, provide
educational programs to communities, and assist in rebuilding local
tourism economies.
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\*\ The $6 billion figure is a conservative estimate based on
budget numbers from several museum associations and data from the
Oxford Economics/AAM's ``Museums as Economic Engines'' study. The
American Alliance of Museums calculates that museums are losing at
least $33 million a day due to closures as a result of COVID-19, will
be in desperate need of significant Federal support, and that the U.S.
Congress needs to include at least $6 billion for nonprofit museums in
economic relief legislation to provide emergency assistance through
December. The study shows the museum field directly employs 372,100
people and generates $15.9 billion in income each year. It costs $1.3
billion to keep 370,000 people employed per month so the estimated cost
through December 2020 is approximately $6 billion minus the 2 months of
expected assistance from SBA-related loan programs.
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Even as museums are experiencing closures and significant losses in
revenue, they are meeting an increase in demand for their services and
safeguarding and supporting their communities. They are contributing to
the ongoing education of our country's children by providing free
lesson plans, online learning opportunities, and drop-off learning kits
to teachers and families. They are using their outdoor spaces to grow
and donate produce to area food banks and are maintaining these spaces
for individuals to safely relax, enjoy nature, and recover from the
mental health impacts of social isolation. They are donating their PPE
and scientific equipment to fight COVID-19, and providing access to
child care and meals to families of healthcare workers and first
responders. In the midst of financial distress, they are even raising
funds for community relief. Museums are pivotal to our nation's ability
to manage through the pandemic and recover from it as our nation opens
back up.
Museums are a robust and diverse business sector, including African
American museums, aquariums, arboreta, art museums, botanic gardens,
children's museums, culturally-specific museums, historic sites,
historical societies, history museums, maritime museums, military
museums, natural history museums, planetariums, presidential libraries,
public gardens, railway museums, science and technology centers, and
zoos.
Museums are economic engines and job creators: According to Museums
as Economic Engines: A National Report, U.S. museums support more than
726,000 jobs and contribute $50 billion to the U.S. economy per year.
For example, the total financial impact that museums have on the
economy in the state of Missouri is $852 million, including 13,653
jobs. For Washington, it is a $1.01 billion impact supporting 14,145
jobs. Museums spend more than $2 billion yearly on education activities
and the typical museum devotes 75 percent of its education budget to K-
12 students.
IMLS is the primary Federal agency responsible for helping museums
connect people to information and ideas. Its Office of Museum Services
(OMS) supports all types of museums by awarding grants that help them
better serve their communities. The 2018-2022 IMLS strategic plan
focuses on promoting lifelong learning, strengthening the capacity of
museums and libraries to serve their communities, increasing access to
information and ideas, and strategically aligning resources to maximize
public value.
OMS awards grants in every state to help museums digitize, enhance,
and preserve collections; provide teacher professional development; and
create innovative, cross-cultural, and multi-disciplinary programs and
exhibits for schools and the public. Congress reauthorized IMLS at the
end of 2018, by enacting the Museum and Library Services Act of 2018
(Public Law 115-410). This legislation was adopted with widespread
bipartisan support, including unanimous consent in the Senate and a
vote of 331 to 28 in the House, showing Congress' renewed support for
the agency's programs and commitment to its funding. IMLS grants to
museums are highly competitive and awarded through a rigorous peer-
review process.
In addition to the dollar-for-dollar match generally required of
museums, grants often spur more giving by private foundations and
individual donors. But current funding allows the agency to fund only a
small fraction of the highly rated grant applications it receives. For
example, in fiscal year 2019, the OMS received 938 applications
requesting nearly $134 million. Despite this funding shortfall the need
has never been greater: museum attendance prior to the pandemic had
increased, collections are subject to increasing risk, and museum staff
members need professional development in conservation, education, and
technology.
The Inspire! Grants for Small Museums program, designed to
encourage small institutions to apply for OMS funding, generated 202
applications in its first year. OMS awarded 30 grants totaling $1.1
million, representing 15 percent of the applicants and demonstrating a
need for continued support for the nation's small museums. In 2014,
IMLS launched Museums for All, a national access initiative. Today,
more than 500 participating museums offer deeply discounted admission
to visitors who receive Supplemental Nutrition Assistance Program
benefits. More than 1 million people visited a Museums for All museum
in 2019 and more than 2.5 million visits have occurred since 2014.
Here are just a few examples of how OMS helps museums better serve
their communities:
In 2018, The University of Missouri in Saint Louis received a
$49,979 National Leadership Grant to support a leadership team from the
university to partner with nine cultural heritage organizations,
including museums, to prototype a collaborative model for internships
that offers peer support and fosters mentorship to students from
faculty and site coordinators. The project team will bring students,
faculty, and site supervisors together for a project team kick-off
meeting to design a micro-internship program allowing diverse students
to participate in 2-3 week fully-paid internships at heritage sites
across the U.S. For two to three weeks, six to ten students will work
in pairs at preselected internship sites with the support of mentors.
The project activities will result in a curriculum and guide for future
micro-internships that attract diverse students into the heritage
museum workforce with additional opportunities and added career-
building potential.
In 2019, the Missouri History Museum in St. Louis was awarded a
$250,000 Museums for America Office of Museum Services grant to
process, survey, and make publicly accessible the 1,894 objects in its
Charles A. Lindbergh Collection. Objects include diverse personal
items, gifts associated with Lindbergh's 1927 transatlantic flight and
publicity tours, and wedding gifts presented to Charles and his wife
Anne. The museum will hire two collections specialists and one special
projects photographer, overseen by its collections manager, to perform
the work. Conservators specializing in objects, paintings, paper, and
textiles will perform detailed conservation surveys. Full records with
digitized images will be made publicly accessible via the museum's
online collections portal. The project will be the first phase of an 8-
year, multistage collections initiative culminating in 2027 with the
centennial of Lindbergh's legendary transatlantic flight.
In 2019, the Contemporary Art Museum St. Louis in Missouri was
awarded a $193,753 Museums for America grant to expand its ArtReach
programs in response to the needs of St. Louis students, teachers, and
schools. The museum will provide arts education opportunities for
middle and high school students by partnering with nearby schools
through multi-week engagements with teaching artists, hosting drop-in
workshops introducing contemporary art practices, and organizing field
trips to the museum. The project will also include mentoring for art
teachers in partner schools and a portfolio day to prepare high school
students for college admissions processes. With the guidance of an
evaluation consultant, the museum will measure success using formative
and summative evaluation techniques, and develop tools to consistently
track and analyze project activities.
In 2019, the Children's Museum of Tacoma, Washington, was awarded a
$186,567 National Leadership Grant to develop and disseminate an
evaluation tool that enables museums to measure the impact their
programming on military families. The museum will work with a variety
of partner organizations, including FRIENDS National Center for
Community-Based Child Abuse Prevention, the University of Kansas Center
for Public Partnerships and Research, and the Army Analytics Group, to
adapt two existing frameworks for use by museums. The project partners
will test iterations of the tool, which will be informed by focus
groups with military families. The museum will disseminate project
resources to support the evaluation of programming tailored for
military families by launching a web page with explanatory information,
downloadable content, and a recorded webinar. The museum and its
project partners will share project results through presentations at
national conferences.
In 2019, the Wing Luke Museum of the Asian Pacific American
Experience in Seattle, Washington, was awarded a $136,134 Museums for
America grant to draw on its collections to supplement the Asian
Pacific American (APA) history curriculum in Washington state schools.
Working with a committee of local educators, special education
teachers, and disability advocates, the museum will research, write,
and compile a new curriculum exploring the culture, immigrant and
refugee history, and APA experiences in the state. The curriculum will
align with state standards and address one grade at each level-
elementary, middle, and high school. Each lesson will be available
through an online web portal and will include multisensory lessons and
components that address a variety of learning styles. Additional
project activities will include teacher training opportunities, school
tours at the museum based on the curriculum, and a professional
evaluation.
In 2019, Imagine Children's Museum in Everett, Washington, was
awarded a $154,448 Museums for America grant to work with community
partners to develop the Positive Futures program to support resilience
in children who have experienced trauma. The program will focus on two
populations--those in kinship care and children who have an
incarcerated parent or loved one. A taskforce of museum staff and
community partners will incorporate the experiences learned in a
previous pilot program by adding elements to specifically address
social emotional and core life skills. Using playful learning formats,
the museum will present monthly programs for 12-15 families per group,
and take-home materials will build on the learning at the museum
between sessions. Working with an evaluation consultant the project
team will measure child learning and refine the programs based on
feedback from caregivers. The museum will also develop a playbook for
other children's museums interested in offering similar programs for
their communities.
In closing, I highlight recent national public opinion polling that
shows that 95 percent of voters would approve of lawmakers who acted to
support museums and 96 percent want Federal funding for museums to be
maintained or increased. Museums have a profound positive impact on
society. If I can provide any additional information, I would be
delighted to do so. Thank you again for the opportunity to submit this
testimony.
[This statement was submitted Laura L. Lott, President and CEO,
American
Alliance of Museums.]
______
Prepared Statement of the American Association for Dental Research
On behalf of the American Association for Dental Research (AADR), I
am pleased to submit testimony describing AADR's funding requests for
fiscal year 2021, which include at least $44.7 billion for the National
Institutes of Health and--within NIH--$512 million for the National
Institute of Dental and Craniofacial Research (NIDCR).
AADR is grateful to Congress for providing critical funding
increases for most federally funded research, including for NIH and
NIDCR, in previous years' funding cycles. We recognize that each year
Congress is faced with difficult funding decisions. Yet, lawmakers
continue to support these agencies and programs, signaling that
lawmakers both recognize and value the role that scientific research
and public health programs provide in improving the health and well-
being of the nation.
Looking ahead to fiscal year 2021, AADR recognizes the challenges
that Congress will face during the appropriations process. Not only
will appropriators navigate fiscal 2021 appropriations in the midst of
the emergency response to COVID-19, but they will also need to consider
increasing the amount of funding available to non-defense discretionary
(NDD) programs in fiscal 2021. Current budget legislation provides only
a $5 billion increase to divide among all NDD programs. While previous
years' increases have helped make up lost purchasing power among
Federal agencies, we cannot afford to slow progress by underfunding
Federal agencies this coming year. We must continue to prioritize
Federal research, which improves the health of Americans and supports
economic growth, or we risk sending our country backward.
NIDCR-the largest institution dedicated exclusively to research to
improve dental, oral and craniofacial (skull and face) health-provides
more than 700 competitive research and institutional training grants to
around 200 U.S. universities, hospitals, research institutions and
small businesses. The Institute also cultivates a strong and diverse
workforce by funding more than 300 aspiring scientists through
individual research training and career development awards. NIH's reach
expands even farther-with every state and almost every congressional
district earning a share of NIH's investment in biomedical research.\1\
In fiscal year 2017, it is estimated that NIH's extramural funding
generated approximately $68.8 billion in economic output nationwide.\2\
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\1\ United for Medical Research report on NIH's role in sustaining
the U.S. Economy. 2018 Update. http://www.unitedformedicalresearch.com/
advocacy_reports/nihs-role-in-sustaining-the-u-s-economy-2018-update/.
\2\ NIH's Role In Sustaining The U.S. Economy: 2018 Update Authored
by Dr. Everett Ehrlich, United for Medical Research, 2018. http://
www.unitedformedicalresearch.com/wp-content/uploads/2017/03/NIH-Role-
in-the-Economy-fiscal year 2016.pdf.
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The economic influence of NIH and NIDCR, driven by their research
portfolios, reveals how vital these Federal research agencies are to
our country's progress and advancement; importantly, they are having a
significant impact on the health and well-being of the American people.
Among AADR's requests to the Labor-HHS, Education and Related
Agencies Subcommittee for the coming fiscal year is to fund NIDCR at
$512 million. NIDCR is leading to ``a world where dental, oral and
craniofacial health and disease are understood in the context of the
whole body,'' \3\--an aim outlined in NIDCR's 2030 strategic visioning
initiative-and AADR has appreciated the regular increases to NIDCR's
budget over the past several years. While Congress' support for NIDCR
has allowed the Institute to expand into research areas, including
regenerative medicine, salivary diagnostics and the oral microbiome,
NIDCR's funding has not kept pace with the increases provided to NIH.
Indeed, NIDCR needs to expand its research portfolio in the public
interest to understand how coronavirus locates in salivary and nasal
secretions (craniofacial origin) to spread among people as well as how
to create lasting immunity, or at least temporary resistance. The
requested fiscal year 2021 amount would bring NIDCR funding into
alignment with the overall NIH request and allow NIDCR to build on its
myriad successes in fulfilling its mission to improve dental, oral and
craniofacial health.
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\3\ https://www.nidcr.nih.gov/research/research-priorities-nidcr-
2030.
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Oral health-too often considered in isolation-is integral to
overall health. The research being conducted at, and supported by,
NIDCR impacts the lives of millions of Americans. Most readily apparent
in someone's day-to-day life, oral health can affect activities that
may be taken for granted: the ability to eat, drink, swallow, smile,
communicate or maintain proper nutrition. The oral cavity can also
serve as a window into other potential health issues like COVID-19 and
as a site for important scientific discovery.
Among its contributions, NIDCR-supported research helps reduce the
societal costs of dental care and enhance the evidence base for the
dental profession. Additionally, the Institute is supporting research
that will address some of the day's most pressing public health
concerns, including non-opioid treatments for pain and the oral health
effects of e-cigarettes.
Beyond the broader, highly relevant public health issues, NIDCR is
also improving the lives of patients across the country. NIDCR's
portfolio encompasses a wide variety of basic, translational and
clinical research and research training related to craniofacial
disorders. For example, NIDCR research into craniofacial disorders aims
to understand the underlying biology of craniofacial development,
translate knowledge into treatment, and invest in well-known genetic
disorders, such as cleft lip and palate, and rare diseases, such as
Behcet's Disease, Fibrous Dysplasia and Cleidocranial Dysplasia. These
and other diseases and conditions affecting or connected to the
craniofacial tissues and organs will be addressed to improve quality of
life, reduce physical debilitation, and mitigate a major financial and
social burden.
The Institute's research examines the mechanisms underlying these
conditions and seeks to develop new treatments and therapies for
patients. Among NIDCR's contributions in this space is the FaceBase
Consortium, which began in 2009 with 11 research and technology grants
that seek to compile the biological instructions to both construct
parts of the human face and define the genetics underlying
developmental disorders, such as cleft lip and palate. Now in its third
phase, FaceBase is helping to achieve its goal of generating and
disseminating datasets to facilitate research; it is a one-stop shop
for researchers, clinicians and patients containing extensive data on
facial development.
The possibilities for NIDCR to use dental, oral and craniofacial
research to improve health and well-being is vast. We believe many of
these opportunities will be highlighted in the forthcoming release of
the U.S. Surgeon General's Report on Oral Health, a much-needed update
to the seminal ``Oral Health in America'' report from 2000. NIDCR is
the lead Federal agency working with the Surgeon General to produce the
report, which will document the progress in oral health since 2000 and
convey a vision for the future, including identifying challenges and
opportunities for research. The 2000 report shifted perspectives among
the public and policymakers by showing that oral health goes beyond
healthy teeth and gums and that it is essential to our general health
and well-being. We believe the 2020 report can have a similar impact.
As a research-centered association, AADR recognizes that public
health programs and Federal research are complementary; a discovery in
one area benefits another. Therefore, AADR encourages Congress, in
addition to supporting NIH and NIDCR, to support all Federal research-
from discovery to care delivery-in fiscal year 2021. Complementing our
NIH requests, our members urge you to provide $29 million for the CDC's
Division of Oral Health, $41 million for the Title VII Health Resources
and Services Administration (HRSA) programs that train the dental
health workforce, $471 million for the Agency for Healthcare Research
and Quality (AHRQ), and $189 million for the National Center for Health
Statistics (NCHS).
Finally, AADR implores Congress to use this opportunity and
momentum to provide dental, oral and craniofacial research with the
resources it needs to continue making a difference to all our citizens.
Thank you for the opportunity to submit this testimony. We stand
ready to assist the Congress in any way we can and to answer any
questions you may have.
[This statement was submitted by Mark C. Herzberg, D.D.S., Ph.D.,
President, Board of Directors, American Association for Dental
Research.]
______
Prepared Statement of the American Association of Colleges of Nursing
strengthening the current and future nursing workforce
On behalf of the American Association of Colleges of Nursing
(AACN), we would like to thank the Subcommittee for its leadership and
continued support of nursing education, the nursing profession, and
nursing research. AACN is the national voice for academic nursing,
proudly representing more than 840 member schools, 543,000 nursing
students, and more than 45,000 faculty across the country. As we work
to combat current public health challenges, such as COVID-19, ensuring
a robust nursing pipeline, now and in the future, requires a strong and
sustained Federal investment. For fiscal year 2021, AACN respectfully
requests your continued investment in America's health by providing at
least $278 million for the Nursing Workforce Development programs
(Title VIII of the Public Health Service Act [42 U.S.C. 296 et seq.]
administered by HRSA), at least $44.7 billion for NIH, and at least
$182 million for the National Institute of Nursing Research (NINR).
The Growing Nursing Workforce Demand
Nurses make up the largest sector of the healthcare workforce, with
more than four million Registered Nurses (RNs) and Advanced Practice
Registered Nurses (APRNs); including Nurse Practitioners (NPs),
Certified Registered Nurse Anesthetists (CRNAs), Certified Nurse-
Midwives (CNMs) and Clinical Nurse Specialists (CNSs), treating
patients across the entire life span and educating the next generation
of healthcare providers.\1\ These nurse educators, students, and
practitioners are leaders within their institutions and communities and
are on the frontlines as we address public health challenges, including
COVID-19.
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\1\ National Council of State Boards of Nursing. (2020). Active RN
Licenses: A profile of nursing licensure in the U.S. as of March 18,
2020. Retrieved from: https://www.ncsbn.org/6161.htm.
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As we address COVID-19, we have witnessed the dire need for
additional nurses. This demand is only expected to grow as we continue
to combat this pandemic and address the healthcare needs of our
communities, especially in rural and underserved areas. According to
the Bureau of Labor Statistics, the projected RN Workforce demand is
expected to increase 12 percent by 2028, representing a call for an
additional 371,500 nurses.\2\ Demand for most APRNs is expected to grow
by 26 percent.\3\
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\2\ U.S. Bureau of Labor Statistics. (2019). Occupational Outlook
Handbook- Registered Nurses. Retrieved from: https://www.bls.gov/ooh/
healthcare/registered-nurses.htm.
\3\ U.S. Bureau of Labor Statistics. (2019). Occupational Outlook
Handbook- Nurse Anesthetists, Nurse Midwives, and Nurse Practitioners.
Retrieved from: https://www.bls.gov/ooh/healthcare/nurse-anesthetists-
nurse-midwives-and-nurse-practitioners.htm.
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While nursing schools across the country are working to meet the
rising demand and educate all qualified applicants interested in the
profession, they are often stymied by a shortage of nursing school
faculty. Though AACN reported a 3.7 percent enrollment increase in
entry-level baccalaureate nursing programs in 2018, this increase is
not sufficient to meet the projected demand for nursing services,
including the need for more nurse faculty, researchers, and primary
care providers.\4\ That is why enhancing and preserving Federal
resources, such as Title VIII Nursing Workforce Development Programs
and NINR, are essential to bridging this chasm between supply and
demand, and ensuring we have an adequate nursing workforce ready to
respond at a moment's notice and positively impact healthcare outcomes
for all Americans.
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\4\ American Association of Colleges of Nursing. (2019). Nursing
Shortage Fact Sheet as of April, 2019. Page 2. Retrieved from https://
www.aacnnursing.org/Portals/42/News/Factsheets/Nursing-Shortage-
Factsheet.pdf.
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Nursing Workforce Investments: Ensuring Healthcare Access
As we have seen in efforts to combat the COVID-19 pandemic, a well-
educated nursing workforce is essential to ensuring the safety and
health of our Nation. The Title VIII Nursing Workforce Development
programs represent the largest dedicated Federal funding stream to
nursing education and the workforce. These indispensable programs
consistently and continually sustain the supply and distribution of
highly-educated nurses by strengthening nursing education at all
levels, from entry-level preparation through graduate study. Through
these indispensable Federal investments, the profession's ability to
serve America's patients continues in all communities, especially those
most in need.
Education and Sustaining a Strong Nursing Workforce:
Each Title VIII Nursing Workforce Development Program provides a
unique and crucial mission to support nursing education and the
profession. Together, these programs offer opportunities to help
educate nurses, address patient demand, and respond to any unforeseen
challenges, such as COVID-19. For example, the Advanced Nursing
Education (ANE) programs increase the number of APRNs in the primary
care workforce and supported more than 9,100 students in Academic Year
2018-2019 alone.\5\ The ANE programs support students studying to
become APRNs, and other nurses requiring a master's or doctoral degree,
by providing Federal support, as well as faculty development, to ensure
a robust nursing workforce. Other examples include the Nurse Faculty
Loan Program (NFLP) and Nursing Workforce Diversity (NWD) programs. In
Academic Year 2018-2019, the NFLP awarded 80 grants to schools that
supported 2,277 graduate nursing students, which effectively increases
the number of nurse educators.\6\ In the same academic year, the NWD
program awarded grants supporting 11,067 nursing students from
disadvantaged backgrounds, which supports the critical need of
recruiting culturally and economically diverse individuals into nursing
to better serve our nation's diverse patient population.\7\
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\5\ Department of Health and Human Services fiscal year 2021 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Pages 141-143. https://www.hrsa.gov/sites/
default/files/hrsa/about/budget/budget-justification-fy2021.pdf
\6\ Department of Health and Human Services fiscal year 2021 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Page 154. https://www.hrsa.gov/sites/
default/files/hrsa/about/budget/budget-justification-fy2021.pdf.
\7\ Department of Health and Human Services fiscal year 2021 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Page 146. https://www.hrsa.gov/sites/
default/files/hrsa/about/budget/budget-justification-fy2021.pdf.
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To ensure the stability of our nursing workforce, we request at
least $278 million for Title VIII Nursing Workforce Programs.
From Research to Reality: Nursing Science Protects Americans' Health
Scientific research and discovery are key to providing the best
care possible. As one of the 27 Institutes and Centers at NIH, NINR
plays a fundamental role in improving care and is on the cutting edge
of new innovations impacting how nurses are educated and how they
practice.
A prime example of this groundbreaking scientific work is an NINR-
funded study that has identified a protein that could be used to detect
mild traumatic brain injuries through a simple blood test.\8\ Annually,
millions of Americans experience these mild traumatic brain injuries
and this effective, fast-testing method could revolutionize diagnosis
and lower costs by eliminating the need for costly and time intensive
brain imaging.\9\
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\8\ National Institute of Nursing Research. (2020). Research
Highlights. Retrieved from: https://www.ninr.nih.gov/
researchandfunding/researchhighlights#highlight-1.
\9\ National Institute of Nursing Research. (2020). Research
Highlights. Retrieved from: https://www.ninr.nih.gov/
researchandfunding/researchhighlights#highlight-1.
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This is just one of countless examples showcasing the innovative
and pioneering work that nurse scientists are discovering through the
support of NINR. Yet, despite many research successes, NINR was only
able to fund 8.9 percent of grant applications in 2017, due to
insufficient funding.\10\ This is the lowest research project grant
(RPG) success rate among all NIH institutes and centers, and
significantly lower than the overall NIH RPG success rate of 18.7
percent.\11\ Despite these funding challenges, some NINR-funded
projects returned between $202 and $1,206 for each dollar awarded in
grants, according to a recent study in the journal Nursing Outlook.\12\
To further this vital work, we are requesting a total of at least $182
million for the National Institute of Nursing Research.
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\10\ Federal Funding of Nursing Research by the National Institutes
of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 9.
Retrieved from: https://www.nursingoutlook.org/article/S0029-
6554(19)30315-X/addons.
\11\ Federal Funding of Nursing Research by the National Institutes
of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 9.
Retrieved from: https://www.nursingoutlook.org/article/S0029-
6554(19)30315-X/addons.
\12\ Federal Funding of Nursing Research by the National Institutes
of Health (NIH): 1993-2017 Kiely, Daniel P. et al. (2019) Page 2.
Retrieved from: https://www.nursingoutlook.org/article/S0029-
6554(19)30315-X/addons.
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Strong investments in Title VIII Nursing Workforce Development
programs and NINR have a direct impact on the nursing pipeline and
patient access to high-quality, evidence-based care in communities
across the nation. During these challenging times, AACN respectfully
requests continued support in fiscal year 2021 of at least $278 million
for the Title VIII Nursing Workforce Development programs and $44.7
billion for the National Institute of Health, which includes $182
million for the National Institute of Nursing Research. Together, we
can ensure that such investments promote innovation and improve
healthcare in America.
[This statement was submitted by Susan Bakewell-Sachs, PhD, RN,
FAAN, Board Chair, American Association of Colleges of Nursing.]
______
Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
The American Association of Colleges of Osteopathic Medicine
(AACOM) leads and advocates for the full continuum of osteopathic
medical education to improve the health of the public. Founded in 1898
to support and assist the nation's osteopathic medical schools, AACOM
represents all 36 accredited colleges of osteopathic medicine--
educating nearly 31,000 future physicians, 25 percent of all U.S.
medical students--at 57 teaching locations in 33 U.S. states, as well
as osteopathic graduate medical education professionals and trainees at
U.S. medical centers, hospitals, clinics, and health systems.
AACOM strongly supports restoring funding for discretionary Health
Resources and Services Administration (HRSA) programs to $8.8 billion;
total funding of $790 million for key priorities in HRSA's Title VII
and Title VIII programs under the Public Health Service Act, including
adequate funding for the Centers for Excellence (COE), Health Careers
Opportunity Program (HCOP), Scholarships for Disadvantaged Students
(SDS) Program, Geriatrics Education Centers (GECs); $67 million for the
Area Health Education Centers (AHECs) Program; $60 million for the
Primary Care Training and Enhancement (PCTE) Program; $15 million for
the Rural Residency Planning and Development Program; long-term
sustainable funding for the Teaching Health Center Graduate Medical
Education (THCGME) Program; at least $120 million in level funding for
the National Health Service Corps (NHSC) and extension of the trust
fund; a minimum of $44.7 billion for the National Institutes of Health
(NIH); and $471 million in budget authority for the Agency for
Healthcare Research and Quality (AHRQ).
The Title VII health professions education programs, authorized
under the Public Health Service Act and administered through HRSA,
support the training and education of health practitioners to enhance
the supply, diversity, and distribution of the healthcare workforce,
acting as an essential part of the healthcare safety net and filling
the gaps in the supply of health professionals not met by traditional
market forces. Title VII programs are the only Federal programs
designed to train primary care professionals in interdisciplinary
settings to meet the needs of medically underserved populations, as
well as increase minority representation in the healthcare workforce.
AACOM supports total funding of $790 million for Title VII and Title
VIII programs.
As the demand for health professionals increases in the face of
impending shortages and the anticipated demand for access to care
increases, these needs strain an already fragile healthcare system.
AACOM appreciates the investments that have been made in these
programs, and we urge the Subcommittee for inclusion and/or continued
support for the following programs: the COE, the HCOP, the SDS Program,
the GECs, the AHECs, the PCTE Program, and the Rural Residency Planning
and Development Program.
The COE Program is integral to increasing the number of minority
youth who pursue careers in the health professions.
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.
The SDS Program provides scholarships to health professions
students from disadvantaged backgrounds with financial need, many of
whom are underrepresented minorities.
GECs are collaborative arrangements between health professions
schools and healthcare facilities that provide training between health
professions schools and healthcare facilities that provide the training
of health professions students, faculty, and practitioners in the
diagnosis, treatment, and prevention of disease, disability, and other
health issues.
The AHEC Program provides funding for interdisciplinary, community-
based, primary care training programs. Through a collaboration of
medical schools and academic centers, a network of community-based
leaders works to improve the distribution, diversity, supply, and
quality of health personnel, particularly primary care personnel in the
healthcare services delivery system, specifically in rural and
underserved areas. AACOM supports a request of $67 million for the AHEC
Program and strongly opposes any effort to eliminate this critical
program.
The PCTE Program provides funding to support awards to primary care
professionals through grants to hospitals, medical schools, and other
entities. AACOM supports a request of $60 million for this important
program.
The Rural Residency Planning and Development Program supports the
development of new rural residency programs or Rural Training Tracks in
family medicine, internal medicine, and psychiatry to help expand the
physician workforce in rural areas across the country. Health
professions workforce shortages are exacerbated in rural areas, where
communities struggle to attract and maintain well-trained providers.
AACOM supports the inclusion of $15 million for the Rural Residency
Planning and Development Program.
AACOM continues to strongly support the long-term sustainment of
the THCGME Program, which provides funding to support primary care
medical and dental residents training in community-based settings. The
majority of currently-funded medical residency programs are osteopathic
or dually-accredited (DO/MD). Currently, there are more than 728
residents being trained in 56 HRSA-supported THC residencies in 23
states. According to HRSA, physicians who train in teaching health
centers (THCs) are three times more likely to work in such centers and
more than twice as likely to work in underserved areas. The
continuation of this program is critical to addressing primary care
physician workforce shortages and delivering healthcare services to
underserved communities most in need. AACOM is pleased that Congress
supported this highly successful bipartisan program by providing a
short-term funding extension in the Coronavirus Aid, Relief, and
Economic Security (CARES) Act. However, funding for this program will
expire after November 30. Stable funding is necessary for the THCGME
Program to continue to expand and increase the number of physicians
that work in communities of need. AACOM strongly supports the
continuation of and permanent funding for the THCGME Program and will
continue to work with Congress to support a sustainable and viable
funding mechanism for its continuation. Furthermore, we strongly
support that the program's funding continues as mandatory funding.
The NHSC supports physicians and other health professionals who
practice in health professional shortage areas across the U.S. The NHSC
notes that a field strength of more than 13,000 primary care clinicians
are providing services nationwide in health professional shortage areas
in fiscal year 2020. While we were pleased to see a short-term funding
extension in the Coronavirus Aid, Relief, and Economic Security (CARES)
Act, stable funding is necessary for the continuation of this
critically effective program. Therefore, AACOM supports the stability
of the NHSC by requesting at least $120 million in level funding for
the NHSC and extension of the NHSC trust fund, which expires after
November 30.
Research funded by the NIH leads to important medical discoveries
regarding the causes, treatments, and cures for common and rare
diseases, as well as disease prevention. These efforts improve our
nation's health and save lives. To maintain a robust research agenda,
further investment will be needed. AACOM supports a funding level of at
least $44.7 billion for the NIH.
AHRQ plays an important role in producing the evidence base
research needed to improve our nation's health and healthcare. The
incremental increases for AHRQ's Patient Centered Health Research
Program in recent years will help AHRQ generate more of this research
and expand the infrastructure needed to increase capacity to produce
this evidence; however, more investment is needed. AACOM recommends
$471 million in budget authority for AHRQ. This investment will
preserve AHRQ's current programs while helping to restore its critical
healthcare safety, quality, and efficiency initiatives. Additionally,
AACOM opposes the consolidation of AHRQ into the NIH.
AACOM appreciates the opportunity to submit its views and looks
forward to continuing to work with the Subcommittee on these important
matters.
[This statement was submitted by Robert A. Cain, DO, FACOI, FAODME,
President and Chief Executive Officer, American Association of Colleges
of Osteopathic Medicine.]
______
Prepared Statement of the American Association of
Neuromuscular & Electrodiagnostic Medicine
fiscal year 2021 recommendations
_______________________________________________________________________
--Please continue to provide meaningful, annual funding increases for
healthcare fraud and abuse programs at the Centers for Medicare
and Medicaid Services (CMS) while allowing for flexibility and
innovation to address emerging challenges.
--Please continue to include timely recommendations in the Committee
Report accompanying the annual Labor-Health and Human Services-
Education (LHHS) Appropriations Bill encouraging CMS to take
substantive action to systematically address fraud, abuse, and
the quality of patient care in electrodiagnostic (EDX)
medicine.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to present the views of
the American Association of Neuromuscular & Electrodiagnostic Medicine
(AANEM) during the consideration of fiscal year 2021 LHHS
appropriations. The challenges and opportunities that I will review
today are not unique to AANEM, but impact a variety of medical
professional societies and patient communities who rely on proper EDX
testing. My comments are provided in the interest of spotlighting
serious issues that continue to undermine patient care and waste
Federal healthcare resources, while advancing policy tools to
efficiently and effectively address these issues. In this regard,
please consider the AANEM a resource moving forward. Thank you again
for this important opportunity.
about aanem
AANEM is a nonprofit membership association dedicated to the
advancement of neuromuscular (NM), musculoskeletal, and EDX medicine.
Our members--primarily neurologists and physical medicine and
rehabilitation (PMR) physicians--are joined by allied health
professionals and PhD researchers working to improve the quality of
medical care provided to patients with muscle and nerve disorders.
Founded in 1953, AANEM currently has over 4,500 members across the
country. Our mission is to improve quality of patient care and advance
the science of neuromuscular diseases and EDX medicine by serving
physicians and allied health professionals who care for those with
muscle and nerve disorders. Our members are dedicated to diagnosing and
managing a variety of nerve and muscle disorders including, but not
limited to, amyotrophic lateral sclerosis, muscular dystrophies, and
neuropathies, as well as more common conditions, such as pinched nerves
and carpal tunnel syndrome.
about edx medicine
When functioning properly, nerves send electrical impulses to the
muscles to activate them. A nerve disorder means that signals are not
getting through like they should. A muscle disorder means that muscles
aren't responding to the signals correctly. To determine whether your
nerves and muscles are working properly, your doctor may recommend you
have EDX testing, which generally includes both a nerve conduction
study (NCS) and needle electromyography (EMG) testing. Other tests may
include imaging, genetic testing, biopsies, biochemical tests, and
strength testing. The results of these tests help your doctor diagnose
your condition and determine the best treatment.
NCS.--These studies evaluate how quickly and efficiently electrical
impulses move through the nervous system. While it may sound straight-
forward, proper testing requires sophisticated equipment, an
understanding of the patient's health history, and, most importantly,
the ability to design/perform the study and interpret the results.
EMG.--This test evaluates muscles and nerves through the use of
electrodes under the skin. Since the procedure is invasive and highly
technical, it is considered to be the practice of medicine by the
American Medical Association;requiring training, study, and experience
to ensure patient safety and testing efficacy.
about edx fraud and abuse
In 2014, the HHS OIG published a report entitled, Questionable
Billing for Medicare Electrodiagnostic Tests, which found roughly $140
million in suspicious activity annually. But experience tells us that
this is just the tip of the iceberg. And the toll of patient suffering
and hardship as the result of fraudulent EDX testing is incalculable.
Unfortunately, since this report was released, the situation has
deteriorated rather than improved. Our members have anecdotally noted
an increase in fraud activity (both through solicitations and by re-
testing patients that were victims of improperly performed tests),
which appears to be supported by CMS utilization data. CMS revised the
EDX codes in 2013 which has actually made it harder to identify
systematic fraud and abuse in this area. Bad actors are aware of the
gaps in the current CMS regulatory and enforcement framework that
create unique blind spots for EDX testing, and this deficiency
continues to be exploited with many criminal endeavors operating in the
open for years as sham professional service providers (the small number
that are caught and convicted annually has not served as a deterrent).
To be clear, the victims continue to be the patients that are
improperly tested, subjected to a battery of studies, and over-billed,
with no intention of receiving an accurate diagnosis or who were never
in need of testing in the first place.
common fraud schemes
Mobile Labs.--Unlike traditional healthcare mobile labs that
conduct community outreach and deliver valuable clinical services, EDX
``mobile labs'' exist exclusively to perpetuate fraud. A provider is
solicited to have a technician sent to their office to conduct EDX
testing for all patients on a given day under the guise of generating
additional revenue and enhancing services offered. The provider is
often unaware that the testing is improper and that the fraudulent
company is using the untrained provider to technically fulfill the
requirement of ``supervising'' the tests. The testing is not guided
onsite nor in real time, as is required by the AMA's CPT codebook, and
as many nerves as possible are tested to increase billing. The tests
are then sent to a complicit, offsite clinician that ``reviews'' the
results after the fact and submits for reimbursement. From the
perspective of the third-party payer reviewing the billing, this system
of fraud is nearly impossible to identify.
Pain Fiber NCS.--Fraudulent activity in this area is increasingly
associated, in part, with disreputable pain clinics. Proprietary
devices claim to evaluate pain, and diagnose sensory radiculopathies (a
pinched nerve in the neck or back), or even fibromyalgia. These
machines are not actually capable of selectively stimulating nerve
fibers or recording the nerve responses so no nerve or muscle disorders
can be accurately or reliably diagnosed. CMS is aware of this and
created non reimbursable codes, but bad actors simply bill for the
procedure using standard NCS codes.
NCS without EMG Testing.--A complete EDX examination typically
involves both NCS and EMG studies, with NCS testing exclusively
required in a small number of cases. However, since needle EMG is an
invasive procedure and bad actors are relying on a technician, a high
rate of NCS-only studies is a hallmark of fraud and abuse.
______
prepared statement of aanem member dr. vince tranchitella
New NCS codes became effective on January 1, 2013. The new codes
were developed as a direct response to fraudulent activity that
resulted in the exponentially increased billing for NCSs.
Unfortunately, the new NCS codes failed to have the desired effect. In
the past 3 years alone, I have reviewed at least 27 EDX medicine fraud
cases, involving multiple providers each, affecting hundreds of
patients. Nine of these cases involved providers in the New York City
region. Most of the providers I reviewed did not receive appropriate
training in EDX medicine yet were still regularly conducting studies.
recent examples
EDX fraud not only wastes healthcare dollars, but, more
importantly, the quality of patient care suffers severely. As an
example, a recent case in which I testified in Houston working for the
FBI and the U.S. Attorney's Office, many patients' insurance companies
were being billed more than $30,000 for a study that should cost $800
to $1200. Of note, when a detailed review was performed, more than 85
percent of the diagnoses arrived at with these fraudulent studies were
incorrect and unreliable. These inappropriate and inaccurate studies
did not help these patients in finding appropriate treatments or
solutions to their medical problems. In fact, they often sent the
patients down costly and ineffective paths of treatment. In this case
alone the perpetrators were convicted of EDX fraud totaling nearly $5
million.
As is invariably the case with mobile EDX laboratories, quality of
care suffers while costs skyrocket and the real losers are,
unfortunately, the patients. In a case I had in California, a 47 year
old man had a mobile EDX study done that cost him (and his insurance
company) more than $7,500 and told him his symptoms were from a
``pinched nerve in his leg''. When I performed the correct study
(charging about $750) I found his true diagnosis to be ALS (or Lou
Gehrig's disease).
current opportunities
CMS, the FBI, and the HHS OIG have been doing tremendous work to
root out fraud and abuse in EDX medicine, but these dedicated public
servants are limited by the constraints of the current pay-and-chase
model. Additional resources for ongoing CMS efforts to address
healthcare fraud and abuse will facilitate incremental improvements and
further protect patients, but modernization is needed as well. Over
recent appropriations cycles, Congress has called on CMS to work with
the EDX community on innovative solutions that could better identify
bad actors conducting EDX testing or simply prevent payments for
improper studies before they are made. Please continue to work with CMS
through the fiscal year 2021 appropriations process to recommend
greater community collaboration and to encourage meaningful and timely
progress in the area of EDX fraud and abuse.
[This statement was submitted by Peter A. Grant, MD, EDX Fraud and
Abuse Consultant for FBI and OIG, American Association of Neuromuscular
& Electrodiagnostic Medicine.]
______
Prepared Statement of the American Association of Immunologists
The American Association of Immunologists (AAI), the nation's
largest professional society of research scientists and physicians who
are dedicated to understanding the immune system through basic,
translational, and clinical research, respectfully submits this
testimony regarding fiscal year 2021 appropriations for the National
Institutes of Health (NIH). AAI recommends an appropriation of at least
$44.7 billion for fiscal year 2021 to enable NIH to fund critically
important research to prevent dangerous infectious diseases and treat
debilitating chronic diseases, support meritorious scientists at all
career stages, and ensure a robust biomedical research enterprise that
maintains U.S. preeminence in science and innovation. Because of the
current COVID-19 pandemic, NIH will require, and AAI strongly supports,
the appropriation of additional emergency supplemental funding that is
being considered outside of the annual appropriations process.
public health importance of understanding the immune system
While recent attention to the immune system has focused on its
ability, properly harnessed, to kill malignant tumors and treat other
chronic diseases (immunotherapy), the coronavirus pandemic has
highlighted the immune system's critical role in protecting against
infectious agents--including viruses--that cause disease. The immune
system plays a significant role in preventing and fighting existing and
emerging infectious diseases such as HIV/AIDS, influenza, measles,
tuberculosis, and Ebola. It is also central to many chronic conditions
such as Alzheimer's and cardiovascular disease. Research into many of
these diseases has helped scientists take on our most recent challenge:
understanding the cause, prevention, and treatment of a novel
coronavirus, SARS-CoV2, and its consequent disease, COVID-19.
Significant recent developments in immunology research are described
below.
Vaccines for SARS-CoV2/Emerging Infectious Diseases
Vaccines are the most efficient and effective method of disease
prevention. Globally, vaccination against more than two dozen viral,
bacterial, and fungal diseases prevents about 2.5 million deaths and
reduces the severity of illness for millions of people annually.\1\ As
the world's population grows and becomes more interconnected, the
threat of a new emerging pathogen causing a worldwide pandemic, which
has long been feared, has been realized: on March 11, 2020, the World
Health Organization declared the novel coronavirus outbreak a pandemic.
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\1\ https://www.who.int/immunization/global_vaccine_action_plan/
GVAP_doc_2011_2020/en/.
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Although there is currently no approved vaccine for SARS-CoV2, NIH-
funded research conducted on other causative pathogens in recent
epidemics, including SARS (now known as SARS-CoV1) (2002) and MERS
(2012), has made possible the rapid development of vaccine candidates
for SARS-CoV2.\2\ While no vaccine is likely to be approved by the Food
and Drug Administration (FDA) for at least another year, eight
candidate vaccines are currently being tested in human subjects; \3\
this includes a candidate vaccine developed in part by researchers at
the National Institute of Allergy and Infectious Diseases' Vaccine
Research Center that moved into a clinical trial at a rate never before
observed in the history of vaccine development.\4\ In addition, anti-
viral therapeutics supported by NIH-funded research are already in, or
are moving toward, clinical testing for efficacy against SARS-CoV2.\5\
One such therapeutic, remdesivir, has already been approved by the FDA
for emergency use ``for the treatment of suspected or laboratory-
confirmed COVID-19 in adults and children hospitalized with severe
disease.'' \6\ AAI is optimistic that previously conducted research,
together with new research now being urgently pursued, will result in
new vaccines and additional treatments that will prevent and/or reduce
the lethality of COVID-19.
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\2\ https://www.niaid.nih.gov/diseases-conditions/coronaviruses
\3\ https://www.who.int/who-documents-detail/draft-landscape-of-
covid-19-candidate-vaccines; https://www.washingtonpost.com/health/
2020/05/18/coronavirus-vaccine-first-results/.
\4\ https://www.nih.gov/news-events/news-releases/nih-clinical-
trial-investigational-vaccine-covid-19-begins.
\5\ https://www.nih.gov/news-events/news-releases/nih-clinical-
trial-remdesivir-treat-covid-19-begins.
\6\ https://www.fda.gov/news-events/press-announcements/
coronavirus-covid-19-update-fda-issues-emergency-use-authorization-
potential-covid-19-treatment.
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With regard to other infectious diseases, NIH-funded research has
allowed scientists to make significant advances in understanding and
developing vaccines against many emerging infectious agents. In 2019
alone, this research helped lead to a FDA-approved Ebola vaccine, a
phase-I clinical trial for a Zika vaccine, and a multi-national phase-3
clinical trial for an HIV vaccine.\7\ Researchers have also begun
early-stage clinical trials of a universal vaccine for influenza, a
disease that results in 9--45 million illnesses and 12,000--61,000
deaths per year in the U.S.\8\ Without strong, steady support from NIH,
researchers will be ill-prepared to respond to new emerging diseases
threatening the safety of Americans and people around the world.
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\7\ https://directorsblog.nih.gov/2020/01/02/celebrating-
biomedical-breakthroughs-in-2019/; https://www.nih.gov/news-events/
news-releases/nih-begins-clinical-trial-live-attenuated-zika-vaccine;
https://www.nih.gov/news-events/news-releases/nih-partners-launch-hiv-
vaccine-efficacy-trial-americas-europe.
\8\ https://www.cdc.gov/flu/about/burden/index.html; https://
www.nih.gov/news-events/news-releases/nih-begins-first-human-trial-
universal-influenza-vaccine-candidate.
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Cancer Immunotherapy
Cancer immunotherapy harnesses the power of the immune system of
the patient to fight tumors, contributing to substantial reductions in
cancer mortality. These treatments include engineered tumor-specific
immune cells (adoptive cell therapy), therapies that restore cellular
functional capacity to exhausted immune cells (checkpoint blockade),
and vaccines to generate new immune responses against the tumor. In
2019, the FDA approved immunotherapies for several types of cancer,
including breast, bladder, uterine, kidney, and esophageal.\9\
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\9\ https://www.cancerresearch.org/immunotherapy/timeline-of-
progress#.
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--Adoptive Cell Therapy: The success of chimeric antigen receptor T
cells (CAR-T; T cells engineered to express novel receptors
targeting specific tumor-associated molecules) in the treatment
of B cell lymphomas has led to current NIH-funded clinical
trials testing the efficacy of CAR-T cells in solid tumors,
such as for patients with glioblastoma and pancreatic
cancer.\10\
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\10\ https://clinicaltrials.gov/ (NCT04003649, NCT02830724).
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--Checkpoint Blockade Therapy: Recent advances in this area have
provided substantial benefit in clinical trials to oncology
patients with solid tumors, including melanoma, non-small-cell
lung carcinoma, and glioblastoma.\11\ Additional research
efforts aim to increase the efficacy of this treatment by
identifying combinatorial therapies and biomarkers of
successful treatment.\12\
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\11\ https://www.ncbi.nlm.nih.gov/pubmed/30742122; https://
www.ncbi.nlm.nih.gov/pubmed/3040
7895.
\12\ https://www.ncbi.nlm.nih.gov/pubmed/31636208; https://
www.ncbi.nlm.nih.gov/pubmed/3031
8169.
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--Vaccines: An existing therapeutic vaccine targets prostate cancer,
with ongoing clinical trials testing novel vaccines designed to
combat multiple myeloma and breast cancer.\13\ Additionally,
meta-analyses of a decade of human papilloma virus (HPV)
vaccinations have provided compelling evidence of the vaccine's
efficacy and safety, leading to new efforts to reduce HPV-
related cervical cancer.\14\
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\13\ https://www.cancer.gov/about-cancer/treatment/types/
immunotherapy/cancer-treatment-vaccines; https://clinicaltrials.gov/
(NCT03376477, NCT00971737).
\14\ https://www.ncbi.nlm.nih.gov/pubmed/31255301; https://
www.ncbi.nlm.nih.gov/pubmed/3199
0905.
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Ongoing NIH-funded research seeks to identify new opportunities to
improve the efficacy of immuno-therapies for additional cancer types as
well as exploring its use as a treatment for other life-threatening or
debilitating conditions, including heart disease and autoimmune
conditions.\15\
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\15\ https://www.ncbi.nlm.nih.gov/pubmed/31511695; https://
www.ncbi.nlm.nih.gov/pubmed/3195
7209.
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Vaping
Since 2007, the U.S. has seen an exponential increase in the use of
e-cigarettes. In 2018, one in 20 middle school and one in five high
school students was using e-cigarettes.\16\ This increased use has
resulted in an outbreak of e-cigarette or vaping associated lung
injuries (EVALI), with nearly 3,000 cases of hospitalization or
death.\17\ Pathological analyses of lung injury patterns demonstrate
extensive lung inflammation in these cases.\18\ While inflammation--the
immune system's response to injury--is usually a sign of healing,
excessive inflammation for a prolonged period of time will cause lung
damage that can be fatal. As a result, NIH is currently supporting
research to investigate the pathogenesis of EVALI, including studies of
especially vulnerable populations, such as those with allergies or
asthma.\19\
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\16\ https://www.cdc.gov/tobacco/basic_information/e-cigarettes/
surgeon-general-advisory/index.
html.
\17\ https://www.cdc.gov/tobacco/basic_information/e-cigarettes/
severe-lung-disease.html.
\18\ https://www.hindawi.com/journals/cripu/2020/6138083/; https://
pubs.rsna.org/doi/10.1148/radiol.2020192585.
\19\ https://www.niaid.nih.gov/grants-contracts/vaping-and-lung-
injury.
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nih's essential role in the nation's--and the world's--biomedical
research enterprise
As the nation's major funding agency for biomedical research, NIH
supports more than 300,000 researchers at 2,500 universities, medical
schools, and other research institutions across the nation and inter-
nationally,\20\ as well as 6,000 additional researchers and clinicians
who work at NIH facilities around the country.\21\ By supporting these
researchers and laboratories, NIH funding strengthens state and local
economies; in 2019, NIH funding supported more than 476,000 jobs and
accounted for $81 billion in economic activity across the U.S.\22\ NIH-
funded basic research is also an essential and irreplaceable part of
the biomedical research pipeline, leading to lifesaving and life-
changing new drugs. In 2018, NIH-funded research contributed to all 210
of the new drugs approved by the FDA from 2010-2016.\23\
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\20\ https://www.nih.gov/about-nih/what-we-do/budget; https://
report.nih.gov/award/index.cfm.
\21\ https://irp.nih.gov/about-us/research-campus-locations.
\22\ https://www.unitedformedicalresearch.org/wp-content/uploads/
2019/04/NIHs-Role-in-Sustaining-the-US-Economy-FY19-FINAL-
2.13.2020.pdf.
\23\ https://directorsblog.nih.gov/2018/02/27/basic-research-
building-a-firm-foundation-for-biomedicine/.
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NIH also serves as an indispensable scientific leader both in the
U.S. and internationally. The steward of nearly $42 billion in Federal
funds, NIH keeps our nation's leaders apprised of scientific
advancements and research priorities and works to ensure that taxpayer
dollars are prudently spent. It oversees and establishes rules
governing the conduct of scientific research and the research
enterprise, working most recently to combat sexual harassment in
science and address concerns about foreign influence in science.
NIH also plays an essential role in responding to emerging threats;
during the current novel coronavirus pandemic, NIH is providing vital
scientific expertise to the President, Congress, and the American
public while supporting urgently needed efforts to develop treatments
and a vaccine. In April, working in collaboration with the Foundation
for the NIH (FNIH), NIH announced the formation of the Accelerating
COVID-19 Therapeutic Interventions and Vaccines (ACTIV) partnership.
This effort will bring together leading biopharmaceutical and biotech
companies and government agencies ``to develop an international
strategy for a coordinated research response to the COVID-19
pandemic,'' including developing ``a collaborative framework for
prioritizing vaccine and drug candidates, streamlining clinical trials,
coordinating regulatory processes and/or leveraging assets among all
partners to rapidly respond to the COVID-19 and future pandemics.''
\24\
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\24\ https://www.nih.gov/news-events/news-releases/nih-launch-
public-private-partnership-speed-covid-19-vaccine-treatment-options;
Corey et al. A Strategic Approach to COVID-19 Vaccine R&D. Science.
DOI: 10.1126/science.abc5312 (2020).
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funding increases continue to rebuild nih capacity
Congress, led by this subcommittee, has invested robustly in NIH in
recent years, including a $2.6 billion budget increase for fiscal year
2020. This increase has helped restore much of the purchasing power
that NIH lost after years of inadequate budgets and erosion from
biomedical research inflation; once more than 22 percent below its peak
funding level (2003), the gap has eased to 5.4 percent.\25\ Meaningful
budget growth remains necessary to close this gap and allow NIH to make
needed investments in important research priorities across all NIH
Institutes and Centers. Because the current cap on fiscal year 2021
nondefense discretionary spending could preclude the subcommittee from
making this investment, AAI requests a budget cap exemption for NIH.
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\25\ https://crsreports.congress.gov/product/pdf/R/R43341.
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As the baby boom generation continues to retire, it is even more
urgent to ensure a dynamic research environment that will allow for the
training, development, and support of our next generation of
researchers, doctors, professors, and inventors. Timely, robust funding
increases for NIH would instill further confidence in all researchers,
including these essential early- and mid-career researchers.
conclusion
AAI greatly appreciates the subcommittee's strong support for NIH
and urges an appropriation of at least $44.7 billion for fiscal year
2021. This funding level will provide needed growth across NIH,
including for vital immunologic research, support meritorious
scientists at all career stages, and help scientists discover ways to
prevent, treat, and cure diseases that afflict people in the U.S. and
around the world.
[This statement was submitted by Ross M. Kedl, Ph.D., American
Association of Immunologists.]
______
Prepared Statement of the American Chemical Society
Dear Chairman Blunt and Ranking Member Murray:
The American Chemical Society (ACS) urges you to support robust
funding for the National Institutes of Health (NIH) when the Labor,
Health and Human Services, Education and Related Agencies
appropriations bill is written. The work of the National Institute of
General Medical Sciences (NIGMS), National Center for Advancing
Translational Sciences (NCATS), and the National Institute of
Biomedical Imaging and Bioengineering (NIBIB) is vital to advancing
medical research and promoting the health of the American people, but
remains unfamiliar to many Americans compared to disease-specific
centers and institutes.
Through its research grants and fellowship programs, NIH also plays
an integral role in attracting and training the young scientists and
engineers who will help the United States remain a leader in medical
research and technology. Investing in the NIH now ensures a future of
well-trained scientists and continued medical advances to combat
diseases and public health crises.
As an organization of over 150,000 chemical scientists and
engineers, ACS understands the benefits of sustained, predictable
funding for NIH to the research community. For example:
NIGMS, which has supported more than 50 Nobel laureates, funds
high-quality, non-disease-specific basic research, laying the
scientific foundation for an array of advances in disease prevention,
diagnosis, and treatment used by other institutes. NIGMS funds the
MIDAS (Models of Infectious Disease Agent Study) Coordination Center,
which coordinates and facilitates infections disease modeling research.
The MIDAS collaboration brings together more than 300 scientists
conduct research on computational modeling to improve the detection,
control, and prevention of emerging infectious diseases. In response to
the COVID-19 pandemic, the coordinating center created a central online
repository for the scientific community-a clearinghouse for sharing
data and data-driven discoveries about COVID-19 to enable an
extraordinary international collection of data and information
regarding the outbreak.
NIBIB supports basic research and training through investigator-
initiated grants, contracts, program project and center grants, and
career development and training awards. The Institute also specializes
in the development and application of cutting-edge technologies based
upon engineering, mathematics, and the physical sciences for the
solution of challenges intersecting biology and medicine such as the
NIH Rapid Acceleration of Diagnostics (RADx) Initiative for COVID-19,
which aims to rapidly develop and scale up testing for COVID-19.
NCATS focuses on ensuring that groundbreaking research from
universities reaches the people who need it by streamlining the
pipeline from basic research to applied research to medicines and
techniques used in medicine. Furthermore, it is a partner in the
National COVID Cohort Collaborative (N3C), an effort to pool COVID-19
clinical data to answer research questions and address the pandemic.
NIGMS, NIBIB, and NCATS all contribute to the vibrant health and
medical research community in the United States, and to the critical
mission of NIH as a whole.
As the subcommittee completes its important work, please ensure
robust support for all of the institutes of the NIH, and its mission of
improving the health of the citizens of the United States. While recent
events have highlighted the important work of institutes focused
directly on infectious illnesses, scientific advancement in all facets
of biomedical research depend on steady funding.
Sincerely.
[This statement was submitted by Glenn S. Ruskin, Vice President,
External
Affairs & Communications.]
______
Prepared Statement of the American College of Cardiology
The American College of Cardiology (ACC) commends Congress for
boosting funding for the National Institutes of Health (NIH), Centers
for Disease Control and Prevention (CDC), and the Health Resources and
Services Administration's (HRSA) Title VII and Title VIII programs in
fiscal year 2020. The College also applauds the emergency supplemental
funding appropriated for these agencies in response to the COVID-19
public health emergency, including $3.5 billion for the NIH and $7.5
billion for the CDC for vaccine research, preparedness, and
surveillance. Since those with underlying conditions such as
cardiovascular disease may be at higher risk for developing severe
COVID-19 symptoms, ensuring robust funding for both pre-COVID and post-
COVID projects across these agencies is essential in the months ahead.
To continue this important progress in fiscal year 2021 and beyond, ACC
urges members of Congress to appropriate the following funds toward
agencies doing vital work in cardiovascular disease (CVD) treatment and
prevention: $3.885 billion for the National Heart Lung & Blood
Institute (NHLBI) and $2.621 billion toward the National Institute of
Neurological Disorders & Stroke (NINDS) to increase the NIH's
purchasing power and preserve U.S. leadership in research; $160 million
toward the CDC's Division for Heart Disease and Stroke Prevention to
strengthen heart disease prevention efforts at state and local levels,
$5 million toward CDC's Million Hearts to prevent 1 million heart
attacks and strokes by 2022, $46.7 million toward CDC's WISEWOMAN to
help uninsured or under-insured women prevent or control heart disease,
$10 million toward CDC congenital heart research to study its effects
over the patient's lifespan, and $310 million toward CDC's Office on
Smoking and Health to maintain the program's cost-effective tobacco
control efforts. ACC asks for the inclusion of report language
promoting HRSA's Title VII and Title VIII healthcare workforce
diversity programs: The committee supports programs that improve the
diversity of the healthcare workforce. HRSA's diversity pipeline
programs, including the Health Careers Opportunity Program, Centers for
Excellence, Faculty Loan Repayment, Nursing Workforce Diversity, and
Scholarships for Disadvantaged Students help advance patient care and
ensure opportunity for all healthcare providers.
ACC envisions a world where innovation and knowledge optimize
cardiovascular care and outcomes. As the professional home for the
entire cardiovascular team, the mission of the College and its more
than 52,000 members is to transform cardiovascular care and improve
heart health. The ACC bestows credentials upon cardiovascular
professionals who meet stringent qualifications and leads in the
formation of health policy, standards and guidelines. The College also
provides professional medical education, disseminates cardiovascular
research through its world-renowned JACC Journals, operates national
registries to measure and improve care, and offers cardiovascular
accreditation to hospitals and institutions.
CVD, a class of diseases that includes diseased blood vessels,
structural problems, and blood clots, continues to be the leading cause
of death among men and women in the United States and is responsible
for 1 in every 4 deaths.\1\ More than 92 million Americans currently
suffer from some form of CVD--nearly one-third of the population--but
it remains one of the most underfunded deadly diseases, as the NIH only
invests 4 percent of its research dollars on heart research.\2\ The
heart disease death rate has continued to drop since the 1970s \3\ due
to scientific advances and improved heart medications and procedures--
but to meet the challenges of an aging population, rising obesity rates
and unhealthy diets, the NIH must maintain its place at the forefront
of medical innovation for years to come. The NHLBI, the third-largest
institute at the NIH, conducts research related to heart, blood vessel,
lung, and blood diseases, generating drugs for lowering cholesterol,
controlling blood pressure, and dissolving blood clots. These
biomedical advancements have contributed to a 71 percent \4\ decrease
in death rates due to cardiovascular disease. NHLBI's recent
groundbreaking research found that more intensive management of high
blood pressure in people 50 years and older reduces cardiovascular
events by almost 25 percent.\5\ We recommend that NHLBI be funded at
$3.885 billion to maintain current activities and investment toward new
research and emerging technologies related to heart disease.
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\1\ Heart Disease Facts; Centers for Disease Control and
Prevention. https://www.cdc.gov/heartdisease/facts.htm.
\2\ National Coalition for Heart and Stroke Research; American
Heart Association. http://www.heart.org/HEARTORG/Advocate/
IssuesandCampaigns/Research/National-Coalition-for-Heart-and-Stroke-
Research_UCM_428347_Article.jsp#.Wt4h-m4vypo.
\3\ Decline in Cardiovascular Mortality; National Library of
Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5268076/.
\4,5\ HHS/NIH/NHLBI Fiscal Year 2017 Congressional Justification
Report; https://www.nhlbi.nih.gov/sites/default/files/media/docs/
Final%20NHLBI%202017%20CJ_R508_v1_0.
pdf.
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NINDS conducts research on brain and nervous system disorders,
including stroke prevention and treatment. Coronary heart disease and
stroke share many of the same risk factors such as high cholesterol
levels, high blood pressure, smoking, diabetes, physical inactivity,
and being overweight or obese. The NINDS Stroke Clinical Trials Network
develops high-quality, multi-site clinical trials focused on key
interventions in stroke prevention, treatment and recovery. We
recommend that NINDS be funded at $2.621 billion to enhance its
existing initiatives and explore new priorities in stroke prevention.
The CDC plays a vital role in protecting public health through
healthy lifestyle promotion and educational activities designed to curb
non-infectious diseases such as obesity, diabetes, stroke, and heart
disease. The CDC Division for Heart Disease and Stroke Prevention
supports efforts to improve cardiovascular health by promoting healthy
lifestyles and behaviors, healthy environments, and access to early
detection and affordable treatment. The division engages with local and
state health departments, and a variety of other partners, to provide
funding and resources, conduct research, track risk factors, and
evaluate current programs and policies relating to heart disease. We
recommend that the CDC Division for Heart Disease and Stroke Prevention
be funded at $160 million to continue its prevention activities among
the most vulnerable communities.
Launched in 2012 and co-led by the CDC and the Centers for Medicare
and Medicaid Services, the Million Hearts program coordinates and
enhances CVD prevention activities with the objective of preventing 1
million heart attacks and strokes by the year 2022. The initiative aims
to achieve this goal by encouraging the public to lead a healthy and
active lifestyle, as well as improving medication adherence for aspirin
and other medications to manage blood pressure, cholesterol, and
smoking cessation. We recommend that Million Hearts be funded at $5
million to enhance efforts preventing heart attacks and strokes.
CDC's WISEWOMAN initiative provides more than 165,000 under-
insured, low-income women ages 40-64 with services to help reduce heart
disease and stroke risk factors. Heart disease ranks as the leading
cause of death for women. Only 1 in 5 women \6\ believes heart disease
is her greatest health threat, and 11 percent \7\ of women remain
uninsured. We recommend that $46.7 million be allocated for WISEWOMAN
to provide preventive health services, referrals to local healthcare
providers, lifestyle programs, and counseling in all 50 states.
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\6\ WISEWOMAN; Centers for Disease Control and Prevention. https://
www.cdc.gov/
wisewoman/.
\7\ Women's Health Insurance Coverage; The Henry J. Kaiser Family
Foundation. http://kff.org/womens-health-policy/fact-sheet/womens-
health-insurance-coverage-fact-sheet.
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Congenital heart disease (CHD), a life-long consequence of a
structural abnormality of the heart present at birth, is the number one
birth defect in the U.S. While the diagnosis and treatment of CHD has
greatly improved over the years, most patients with complex heart
defects need special care throughout their lives, and only by expanding
research opportunities can we fully understand the effects of CHD
across the lifespan. As authorized by the Congenital Heart Futures
Reauthorization Act of 2017, we recommend that the CDC National Center
for Birth Defects and Developmental Disabilities be funded at $10
million for enhanced CHD surveillance and public health research.
Programs within CDC's Office on Smoking and Health (OSH) work to
prevent smoking among young adults and eliminate tobacco-related health
disparities in different population groups. In 2012, OSH launched the
national tobacco education campaign, Tips from Former Smokers, which
has motivated more than 5 million \8\ people to quit smoking, with at
least 400,000 quitting permanently.\9\ While these programs have proven
effective in tobacco cessation and prevention, more than 480,000 people
still die every year from causes attributable to smoking, and 33
percent of those deaths stem from heart disease.\10\ We recommend that
OSH be funded at $310 million to continue leading the nation's efforts
in preventing chronic diseases caused by tobacco use.
---------------------------------------------------------------------------
\8,9\ Office on Smoking and Health; Centers for Disease Control and
Prevention. https://www.cdc.gov/tobacco/about/osh/.
\10\ Smoking and Tobacco Use, Fast Facts; Centers for Disease
Control and Prevention. https://www.cdc.gov/tobacco/data_statistics/
fact_sheets/fast_facts/index.htm..
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Treating and preventing chronic disease is dependent on robust
healthcare workforce programs, which are vital given projections of
severe physician shortages.\11\ The HRSA Title VII and Title VIII
training and enhancement grants help expand the primary care and
nursing workforce to treat patients in rural and other underserved
areas. We encourage HRSA to enhance its diversity workforce programs to
address current and emerging healthcare quality and access challenges.
---------------------------------------------------------------------------
\11\ New Findings Confirm Predictions on Physician Shortage, AAMC.
https://www.aamc.org/news-insights/press-releases/new-findings-confirm-
predictions-physician-shortage.
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On behalf of our members who work to prevent and treat CVD, ACC
would like to thank members of Congress for supporting medical
innovation as we continue the fight against heart disease. Stable
funding for medical research and healthy lifestyle promotion, as well
as advancing our healthcare workforce will not only save lives, but
save healthcare costs in the long term. Medical research nurtures
economic growth by creating jobs and new technologies, which will
produce billions of dollars in Medicare and Medicaid savings over the
next decade. Please help us secure robust funding for NIH and CDC
funding to protect the health of future generations.
[This statement was submitted by Athena Poppas, MD, FACC,
President,
American College of Cardiology.]
______
Prepared Statement of the American College of
Obstetricians and Gynecologists
The American College of Obstetricians and Gynecologists (ACOG),
representing more than 60,000 physicians and partners dedicated to
advancing women's health, is pleased to offer this statement to the
Senate Committee on Appropriations, Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies. We thank Chairman
Blunt, Ranking Member Murray, and the entire Subcommittee for this
opportunity to provide comments on some of the most important programs
to support and advance women's health.
ACOG commends Congress for making great strides to support research
and data collection that advance the health of women and families.
Looking ahead, we urge you to make funding of the following programs
and agencies a priority in fiscal year 2021:
Safe Motherhood, Maternity and Perinatal Quality Collaboratives at
Centers for Disease Control and Prevention (CDC):
The United States has the highest rate of maternal mortality and
severe morbidity of any developed country. The Safe Motherhood
Initiative at CDC works with state health departments to collect
information on pregnancy-related deaths, gives technical assistance to
maternal mortality review committees, tracks preterm births, and
improves maternal outcomes through perinatal quality collaboratives.
These data and initiatives are imperative to addressing the nation's
maternal mortality and morbidity crisis. Important strides have been
made as nearly every state currently has, is in the process of
implementing, or is making plans to develop a state maternal mortality
review committee. We must continue to build on this progress and
improve maternal health outcomes. ACOG requests funding for the Safe
Motherhood Initiative at $76 million, including $30 million to help
states expand or establish maternal mortality review committees, and $2
million for state-based perinatal quality collaboratives.
Women's Health Research at the National Institutes of Health (NIH):
Women represent half of the U.S. population. As such, conditions
and diseases that are specific to women's health, or those that present
differently in women than men, must be a priority for federally funded
research. Women's health research is a central part of the Eunice
Kennedy Shriver National Institute of Child Health and Human
Development (NICHD)'s research mission and portfolio, and the Institute
has achieved great success in advancing research on women's health
throughout the life cycle; maternal, child, and family health; fetal
development; reproductive biology; population health; and medical
rehabilitation. With sufficient resources, NICHD can build upon its
existing initiatives to produce new insights and solutions to benefit
women and families. ACOG supports an appropriation of $44.7 billion for
the National Institutes of Health (NIH) in fiscal year 2021, including
$1.6 billion for NICHD. This amount would maintain a steady trajectory
of a $3 billion annual increase for the NIH.
ACOG also supports the convening of a consensus conference at NIH
to evaluate research currently underway related to women's health and
identify priority areas for additional study to advance women's health
research, including reproductive sciences.
ACOG also urges that additional funds appropriated to NIH pursuant
to the COVID-19 response be directed to NICHD for research specific to
COVID-19 and pregnancy. To date, no COVID-19 response funds have been
directed to NICHD, limiting the Institute's ability to support critical
and groundbreaking research on the impact of COVID-19 on pregnancy and
pregnancy outcomes.
Advancing Maternal Therapeutics at the NIH:
Each year, more than 4 million women give birth in the United
States and more than 3 million breastfeed. However, little is known
about the effects of most drugs on the woman and her child. In 2015 as
part of the 21st Century Cures Act (Sec. 2041 of Public Law 114-255),
Congress created the Task Force on Research in Pregnant Women and
Lactating Women (PRGLAC) to advise the Secretary of HHS on gaps in
knowledge and research on safe and effective therapies for pregnant and
breastfeeding women. In September 2018, PRGLAC produced a report to the
Secretary outlining 15 recommendations to facilitate the inclusion of
this population in clinical research. ACOG supports the implementation
of these recommendations under the oversight of NICHD, working with
other relevant NIH Institutes, the CDC, and the Food and Drug
Administration, and urges Congress to express its continued support.
ACOG also urges the Committee to ensure that additional funds
appropriated to support vaccine development pursuant to the COVID-19
response encourage the inclusion of pregnant and breastfeeding women,
including women of color. Pregnant and breastfeeding women are
currently excluded from these trials, placing them at risk of exclusion
from eventual immunization or treatment recommendations.
Title X Family Planning Program at Health Resources and Services
Administration (HRSA):
Family planning and pre-pregnancy care are imperative to ensuring
healthy women and healthy pregnancies. The Title X Family Planning
Program provides essential services to over 4 million low income men
and women who may not otherwise have access to these services. For many
individuals, particularly those who are low-income, uninsured, or
adolescents, Title X is essential to their ability to affordably and
confidentially obtain birth control, cancer screenings, STI tests and
other basic care. From 2010-2016, Title X funding was cut by $31
million, despite an increase of 1.5 million women in need of publicly
funded family planning services over the same period. ACOG requests
$400 million for Title X in fiscal year 2021 to ensure individuals in
need have access to evidence-based care.
ACOG is also deeply concerned about the impact of the Title X
program rule, which has caused more than 1.5 million patients to lose
access to medically accurate, comprehensive Title X-funded services,
and urges Congress to show its strong support for women's health by not
only funding this critical program but ensuring that no funds are used
to implement the harmful final rule.
Title V Maternal and Child Health Block Grant at HRSA:
The Title V Maternal and Child Health (MCH) Block Grant at HRSA is
a critical Federal program exclusively focused on improving the health
of mothers and children. The Block Grant is a cost-effective,
accountable, and flexible funding source used to address critical,
pressing, and unique needs of maternal and child health populations in
each state, territory and jurisdiction. Notably, through the Special
Projects of Regional and National Significance (SPRANS) discretionary
grant, the Block Grant supports the Alliance for Innovation on Maternal
Health (AIM)--a program that works with states and hospital systems to
implement evidence-based toolkits, or bundles, to improve maternal
outcomes and reduce rates of maternal mortality and severe morbidity.
ACOG requests at least $715 million for fiscal year 2021 to respond to
the increased demands placed on the Block Grant, including $15 million
within SPRANS to support continued implementation of AIM.
Investing in Data and Quality at the Agency for Healthcare Research and
Quality (AHRQ):
AHRQ is the Federal agency with the sole purpose of improving
healthcare quality. AHRQ produces data with the mission of making
healthcare safer, higher quality, more accessible, equitable, and
affordable. AHRQ works with HHS and other partners to ensure that the
evidence improves patient safety. ACOG supports $471 million for AHRQ
in fiscal year 2021, which is consistent with the fiscal year 2010
funding level for the agency adjusted for inflation.
Public Health Surveillance at CDC:
Uniform, accurate, and comprehensive data is essential for
addressing the rising rates of maternal mortality and severe maternal
morbidity in the United States. Unfortunately, the nation's public
health data systems are antiquated, lack interoperability and data and
reporting standards, and are in dire need of security updates. The
COVID-19 pandemic has demonstrated the shortcomings of these systems
and the need for a robust public health infrastructure. ACOG urges
Congress to demonstrate its commitment to public health surveillance
and requests funding be used to modernize these systems to improve
America's health. ACOG requests $100 million in fiscal year 2021 to
implement advanced technologies and train the next generation of data
scientists.
Firearm Morbidity and Mortality Prevention (CDC and NIH):
In 2017, there were more than 39,000 U.S. firearm-related
fatalities. federally funded public health research has a proven track
record of reducing public health-related deaths, whether from motor
vehicle crashes, smoking, or Sudden Infant Death Syndrome. This same
approach should be applied to increasing gun safety and reducing
firearm-related injuries and deaths, and CDC research will be as
critical to that effort as it was to these previous public health
achievements. The foundation of a public health approach is rigorous
research that can accurately quantify and describe the facets of an
issue and identify opportunities for reducing its related morbidity and
mortality. For fiscal year 2021, ACOG requests $50 million, shared
evenly between CDC and NIH, to conduct public health research into
firearm morbidity and mortality prevention.
Diagnosing and Treating Maternal Depression (HRSA):
About 1 in 5 women experience maternal depression, and ACOG
recommends that all patients be screened, yet women face barriers to
accessing treatment. ACOG commends Congress for fully funding Sec.
10005 of Public Law 114-255 to support the establishment of a program
at HRSA to expand depression screening and treatment for pregnant and
postpartum women. ACOG urges you to again fully fund the program at $5
million for fiscal year 2021.
Advancing Women's Health During the COVID-19 Pandemic:
ACOG commends Congress for its swift response to the COVID-19
pandemic through appropriations to support the nation's public health
response. This response, however, must not harm ongoing efforts to
advance women's health. ACOG urges Congress to provide additional
emergency funding to address the public health emergency or adjust the
fiscal year 2021 budget caps to allow for continued response to the
public health and medical needs of women, including pregnant and
postpartum women. Without these adjustments, Congress risks compounding
the harm of the pandemic by abandoning successful initiatives that
advance women's health.
Thank you again for the opportunity to submit our recommendations
to the Subcommittee, and for your commitment to improving women's
health.
[This statement was submitted by Rachel Tetlow, Federal Affairs
Director.]
______
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 2021.
ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
159,000 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 2021, ACP is urging
funding for the following proven programs to receive appropriations
from the Subcommittee:
--Health Resources Services Administration (HRSA), $8.8 billion;
--Title VII, Section 747, Primary Care Training and Enhancement
(PCTE), Health Resources and Services Administration (HRSA),
$71 million;
--National Health Service Corps (NHSC), $860 million in total program
funding;
--Agency for Healthcare Research and Quality (AHRQ), $471 million;
--Centers for Medicare and Medicaid Services (CMS), Program
Operations for Federal Exchanges, $268.9 million;
--Centers for Disease Control and Prevention (CDC), $8.3 billion,
Injury Prevention and Control, Research on Prevention of
Firearms-related Injuries and Deaths, $50 million;
--Public Health and Social Services Emergency Fund (PHSSEF); highest
possible funding level over the fiscal year 2020 $2.7 billon
enacted level;
--National Institutes of Health (NIH), $44.7 billion.
The United States is facing a shortage of physicians in key
specialties, notably in general internal medicine and family medicine-
the specialties that provide primary care to most adult and adolescent
patients. Current projections indicate there will be a shortage of
21,100 to 55,200 primary care physicians by 2032. Without critical
funding for vital workforce programs, this physician shortage will only
grow worse. HRSA is responsible for improving access to health-care
services for people who are uninsured, isolated or medically
vulnerable. 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. Therefore we urge the
Subcommittee to provide $8.8 billion for HRSA programs for fiscal year
2021 to improve the care of medically underserved Americans by
strengthening the health workforce.
The health professions' education programs, authorized under Title
VII of the Public Health Service Act and administered through HRSA,
support the training and education of healthcare providers to enhance
the supply, diversity, and distribution of the healthcare workforce.
Within the Title VII program, we urge the Subcommittee to fund the
Section 747 PCTE program at $71 million, in order to maintain and
expand the pipeline for individuals training in primary care. While the
College appreciates the $10 million increase to the program in fiscal
year 2018, ACP urges more funding because the Section 747 PCTE program
is the only source of Federal training dollars available for general
internal medicine, general pediatrics, and family medicine. For
example, general internists, who have long been at the frontline of
patient care, have benefitted from PCTE training models emphasizing
interdisciplinary training that have helped prepare them to work with
other health professionals.
The College urges at least $860 million in total program funding
for the NHSC. For fiscal year 2021, the NHSC's funding situation is
particularly dire and faces a funding cliff because its mandatory
funding is set to expire. In fiscal year 2020, the NHSC received $120
million in discretionary funding to expand and improve access to
quality opioid and substance use disorder treatment in underserved
areas, in addition to $310 million in mandatory funds. The NHSC awards
scholarships and loan repayment to healthcare professionals to help
expand the country's primary care workforce and meet the healthcare
needs of underserved communities across the country. In fiscal year
2019, with a field strength of over 13,000 primary care clinicians,
NHSC members are providing culturally competent care to over 13 million
patients at over 17,000 NHSC-approved healthcare sites in urban, rural,
and frontier areas. These funds would help maintain NHSC's field
strength helping to address the health professionals' workforce
shortage and growing maldistribution. There is overwhelming interest
and demand for NHSC programs, and with more funding, the NHSC could
fill more primary care clinician needs. In fiscal year 2016, there were
2,275 applications for the scholarship program, yet only 205 new awards
were made. There were 7,203 applications for loan repayment and only
3,079 new awards. Accordingly, ACP urges the subcommittee to double the
NHSC's overall program funding to $860 million to meet this need.
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 $471 million, restoring the
agency to its fiscal year 2010 enacted level adjusted for inflation.
This amount will allow AHRQ to help providers help patients by making
evidence-informed decisions, to fund research that serves as the
evidence engine for much of the private sector's work to keep patients
safe, to make the healthcare marketplace more efficient by providing
quality measures to health professionals, and, ultimately, to help
transform health and healthcare.
ACP supports at least $268.9 million in discretionary funding for
Federal exchanges within CMS' Program Operations, which has been funded
at $2.8 billion in fiscal year 2020. This funding would allow the
Federal Government to continue administering the insurance
marketplaces, as authorized by the Affordable Care Act, if a state has
declined to establish an exchange that meets Federal requirements. CMS
now manages and operates some or all marketplace activities in over 30
states. Without these funds it will be much more difficult for the
Federal Government to operate and manage a federally-facilitated
exchange in those states, raising questions about where and how their
residents would obtain and maintain coverage.
The Center for Disease Control and Prevention's mission is to
collaborate to create the expertise, information, and tools needed to
protect their health-through health promotion, prevention of disease,
injury, and disability, and preparedness for new health threats. ACP
supports $8.3 billion overall for this mission, especially in light of
the COVID-19 national emergency. The College also supports $50 million
for the CDC's Injury and Prevention Control to fund research on
prevention of firearms-related injuries and deaths and support 10 to 20
multi-year studies to continue to rebuild lost research capacity in
this area.
As the Federal Government responds to COVID-19, ACP supports the
highest possible funding level for the PHSSEF in fiscal year 2021 over
the $2.7 billion enacted in fiscal year 2020 for the Assistant
Secretary for Preparedness and Response to continue efforts to
research, prevent, control, and treat of illnesses associated with the
SARS-CoV-2 virus through the National Disaster Medical System, the
Strategic National Stockpile, the Hospital Preparedness Program,
Biomedical Advanced Research and Development Authority, and Medical
Reserve Corps. PHSSEF funding is crucial in providing personal
protective equipment (PPE) to the physicians and other clinicians on
the frontlines of the COVID-19 outbreak. The PHSSEF must be funded
adequately enough to maintain a robust pandemic response, especially
when emergency supplemental funds are no longer available.
Lastly, the College strongly supports $44.7 billion for NIH in
fiscal year 2021 so the nation's medical research agency continues
making important discoveries that treat and cure disease to improve
health and save lives and that maintain the United States' standing as
the world leader in medical and biomedical research.
The College greatly appreciates the support of the Subcommittee on
these issues and looks forward to working with Congress on the fiscal
year 2021 appropriations process.
[This statement was submitted by Jared Frost, Senior Associate,
Legislative
Affairs, American College of Physicians.]
______
Prepared Statement of the American College of Preventive Medicine
The American College of Preventive Medicine (ACPM) urges the Senate
Labor, Health and Human Services, Education, and Related Agencies
Appropriations Subcommittee to support training for preventive medicine
physicians and other public health professionals by providing $23.359
million in fiscal year 2020 to the Heath Resources and Services
Administration (HRSA) for the Public Health and Preventive Medicine
line item in Title VII of the Public Health Service Act.
In today's healthcare environment, especially during the COVID-19
pandemic, the tools and expertise provided by preventive medicine
physicians play an integral role in ensuring the effective functioning
of our nation's public health system. These tools and skills include
the ability to deliver evidence-based clinical preventive services,
expertise in population-based health sciences, and knowledge of the
social and behavioral determinants of health and disease. These are the
tools employed by preventive medicine physicians who practice at the
health system level where improving the health of populations,
enhancing access to quality care, and reducing the costs of medical
care are paramount. As the body of evidence supporting the
effectiveness of clinical and population-based interventions continues
to expand, so does the need for specialists trained in preventive
medicine.
Organizations across the spectrum have recognized the growing
demand for preventive medicine professionals. The Institute of Medicine
released a report in 2007 calling for an expansion of preventive
medicine training programs by an ``additional 400 residents per year,''
and the Accreditation Council on Graduate Medical Education (ACGME)
recommends increased funding for preventive medicine residency training
programs.
Preventive medicine is the only one of the 24 medical specialties
recognized by the American Board of Medical Specialties that requires
and provides training in both clinical and population-based medicine.
Preventive medicine residency training programs provide a blueprint on
how to train our future physician workforce; physicians trained to
provide individual patient care needs as well as practice at the
community and population level to identify and treat the social
determinants of health. Preventive medicine physicians have the
training and expertise to advance the population health outcomes that
public and private payers are increasingly promoting to their
providers. These physicians have a strong focus on quality care
improvement and are at the forefront of efforts to integrate primary
care and public health.
According to HRSA, and health workforce experts, there are
personnel shortages in many public health occupations, including
epidemiologists, biostatisticians, and environmental health workers
among others. According to the 2018 Physician Specialty Data Book
released by the Association of American Medical Colleges, preventive
medicine is one of only six specialties that saw a decrease in the
number of active physicians between 2012 and 2017. This represents a
worsening trend in the number of preventive medicine physicians in the
field that is not due to a lack of interest or need, but is due to a
lack of funding. Nearly 70 percent of preventive medicine physicians
are over age 55, and the funding gaps mean that there are not enough
entering the field to make up for the current and expected future
shortage. ACPM is deeply concerned about the shortage of preventive
medicine-trained physicians and the ominous trend of even fewer
training opportunities. This deficiency in physicians trained to carry
out core public health activities will lead to major gaps in the
expertise needed to deliver clinical prevention and community public
health services. The impact on the health of those populations served
by HRSA is likely to be profound.
Despite being recognized as an underdeveloped national resource and
in shortage for many years, physicians training in the specialty of
Preventive Medicine are the only medical residents whose graduate
medical education (GME) costs are not supported by Medicare, Medicaid
or other third party insurers. Training occurs outside hospital-based
settings and therefore is not financed by GME payments to hospitals.
Both training programs and residency graduates are rapidly declining at
a time of unprecedented national, state, and community need for
properly trained physicians in public health, disaster preparedness,
prevention-oriented practices, quality improvement, and patient safety.
Currently, residency programs scramble to patch together funding
packages for their residents. Support for faculty and tuition has been
almost non-existent. Directors of residency programs note that they
receive many inquiries about and applications for training in
preventive medicine; however, training slots often are not available
for those highly qualified physicians who are not directly sponsored by
an outside agency or who do not have specific interests in areas for
which limited stipends are available (such as research in cancer
prevention). HRSA--as authorized in Title VII of the Public Health
Service Act--is a critical funding source for several preventive
medicine residency programs, as it represents the largest Federal
funding source for these programs.
Of note, the preventive medicine residency programs directly
support the mission of the HRSA health professions programs by
facilitating practice in underserved communities and promoting training
opportunities for underrepresented minorities:
--Seventy-seven percent of HRSA-supported preventive medicine
graduates practice in medically underserved communities.
--Nearly half of preventive medicine training sites funded through
HRSA programs were are located in medically underserved
communities.
In addition to training under-represented minorities and physicians
who work in medically underserved areas, preventive medicine residency
programs equip our society with health professionals and public health
leaders who possess the tools and skills needed in the fight against
the chronic disease epidemic that is threatening the future of our
nation's health and prosperity. Chronic diseases currently cost the
U.S. billions of dollars per year, including heart disease and stroke
($315.4 billion per year), diabetes ($245 billion per year), and
obesity-related diseases ($145 billion per year). Correcting the root
causes of this critical problem of chronic diseases will require a
multidisciplinary approach that addresses issues of access to
healthcare; social and environmental influences; and behavioral
choices. Any efforts to strengthen the public health infrastructure and
transform our communities into places that encourage healthy choices
must include measures to strengthen the existing training programs that
help produce public health leaders.
Further, expanding the preventive medicine workforce strengthens
the disaster preparedness capabilities we must have to ensure our
nation's health security. Vulnerable populations, including those in
poor health, with disabilities, and chronic diseases are at an
increased risk of adverse health outcomes resulting from natural
disasters. New threats are always on the horizon and some, like the
Zika virus, require preventive medicine specialists working to find
ways to stop the spread before it becomes an epidemic.
Many of the leaders of our nation's local and state health
departments are trained in preventive medicine. Their unique
combination of expertise in both medical knowledge and public health
makes them ideal choices to head the fight against chronic disease as
well as other threats to our nation's health, such as the opioid
epidemic. Their contributions are invaluable. Investing in the
residency programs that provide physicians with the training and skills
to take on these leadership positions is an essential part of keeping
Americans healthy and productive. As such, the American College of
Preventive Medicine urges the Labor, Health and Human Services,
Education, and Related Agencies Appropriations Subcommittee to reaffirm
its support for training preventive medicine physicians and other
public health professionals by providing $23.359 million in fiscal year
2021 to HRSA for the Public Health and Preventive Medicine line item in
Title VII of the Public Health Service Act.
[This statement was submitted by Kate McFadyen, Director,
Government Affairs.]
______
Prepared Statement of the American College of Surgeons
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, on behalf of the more than 82,000 members of the American
College of Surgeons (ACS), thank you for the opportunity to submit
written testimony addressing fiscal year 2021 appropriations. The ACS
is a scientific and educational organization of surgeons that was
founded in 1913 to raise the standards of surgical practice and improve
the quality of care for all surgical patients. The College is dedicated
to the ethical and competent practice of surgery. Its achievements have
significantly influenced the course of scientific surgery in America
and have established it as an important advocate for all surgical
patients.
The ACS respectfully requests your consideration of the following
priorities as the Subcommittee works through the annual appropriations
process for fiscal year 2021:
MISSION ZERO Military and Civilian Partnership for the Trauma Readiness
Grant Program
Trauma, including car crashes, falls, head injuries, burns, and
firearm injuries, is the leading cause of death in America for those
ages 44 and younger and accounts for more years of life lost and
disability than any other disease, including cancer and heart disease.
Unfortunately, nearly 45 million Americans live in areas more than an
hour away from either a Level I or II trauma center. Ensuring access to
trauma care requires many crucial components including trauma centers
and appropriately trained physicians and nurses, all of which must
dedicate extensive resources around the clock so that seriously injured
patients have the best possible chance for survival.
In 2016, the National Academies of Science, Engineering, and
Medicine (NASEM) released a report titled, ``A National Trauma Care
System: Integrating Military and Civilian Trauma Systems to Achieve
Zero Preventable Deaths After Injury.'' This report suggests one of
four military trauma deaths and one of five civilian trauma deaths
could be prevented if advances in trauma care reach all injured
patients. The report concludes that military and civilian integration
is critical to saving these lives both on the battlefield and at home,
preserving the hard-won lessons of war, and maintaining the nation's
readiness and homeland security.
The MISSION ZERO Act was signed into law on June 24th, 2019 as part
of S. 1279, the Pandemic and All Hazards Preparedness and Advancing
Innovation (PAHPAI) Act (Public Law No: 116-22). MISSION ZERO takes the
recommendations of the NASEM report to create a U.S. Department of
Health and Human Services (HHS) grant program to cover the
administrative costs of embedding military trauma professionals in
civilian trauma centers. These military-civilian trauma care
partnerships will allow military trauma care teams and providers to
gain exposure to treating critically injured patients and increase
readiness for when these units are deployed. Similarly, best practices
from the battlefield are brought home to further advance trauma care
and provide greater civilian access.
By facilitating the implementation of military-civilian trauma
partnerships, this program will preserve lessons learned from the
battlefield, translate those lessons to civilian care, and ensure
service members maintain their readiness to deploy in the future. The
ACS strongly supports the funding of MISSION ZERO at the authorized
amount of $11.5 million for fiscal year 2021.
Funding for Cancer Research and Prevention
The ACS and the Commission on Cancer (CoC) are dedicated to
improving survival and quality of life for cancer patients through
advocacy of issues pertaining to prevention and research. To continue
the progress that has led to medical breakthroughs for treatment
therapies for millions of cancer patients, the ACS and CoC support the
following funding increases for fiscal year 2021.
The budget of the National Institutes of Health (NIH) should be
increased to at least $44.7 billion (a $3 billion increase), including
$6.9 billion for the National Cancer Institute (NCI). The ACS also
urges the inclusion of $555 million for cancer control and prevention
programs and $70 million for the National Program of Cancer Registries
(NPCR) through the Centers for Disease Control and Prevention (CDC).
Additionally, the ACS asks you to consider the inclusion of the
following report language recognizing the importance of the American
College of Surgeons Cancer Programs, which benefit an array of
healthcare professionals, patients, and facilities through standard-
setting, accreditation, and educational activities.
Quality Care for Cancer.--The Committee recognizes the importance
of voluntary accreditation by the American College of Surgeons Cancer
Programs, which provide tools, resources, and data to enable cancer
programs to deliver comprehensive, high-quality, multidisciplinary,
evidence-based, patient-centered care to patients with cancer and
diseases of the breast. This voluntary accreditation program includes
several key modules, including those focused generally on cancer,
breast cancer and diseases of the breast, rectal cancer, and data
sharing and performance accountability. The Committee applauds the work
of the American College of Surgeons Cancer Programs and encourages
facilities to seek its accreditation to support performance evaluation
and inform quality care improvements.
Firearm Morbidity and Mortality Prevention Research
The ACS supports an appropriations request of $50 million
specifically for public health research into firearm morbidity and
mortality prevention through the CDC for fiscal year 2021.
Federally funded research from the perspective of public health has
contributed to reductions in motor vehicle crashes, smoking, and Sudden
Infant Death Syndrome (SIDS). ACS believes a similar approach could
reduce firearm-related injuries and deaths in our communities.
Repeal the Ban on UPI
A Unique Patient Identifier (UPI) would help to ensure that
surgeons have a more accurate and consistent means of linking patients
to their health information across the continuum of care. Repealing the
twenty-year prohibition on the use of Federal funds to establish a
national UPI would provide HHS with the ability to evaluate a range of
patient identification solutions, enabling the agency to explore
potential challenges and identify cost-effective, scalable, and secure
solutions that protect patient privacy. The ACS supports removal of the
ban in Section 510 that prohibits HHS from spending any Federal dollars
to promulgate or adopt a unique patient identifier (UPI).
Thank you for your consideration of our requests. Please contact
Amelia Suermann, ACS Congressional Lobbyist, at [email protected] if
you have any questions or would like additional information.
______
Prepared Statement of the American Dental Association
On behalf of the American Dental Association (ADA) and our more
than 163,000 members, thank you, Chairman Blunt, Ranking Member Murray
and members of the Subcommittee for the opportunity to submit testimony
in support of Federal agencies and programs that work to expand access
to oral healthcare. Within the Department of Health and Human Services,
the American Dental Association is requesting for fiscal year 2021
(fiscal year 2021), $29 million for the Centers for Disease Control and
Prevention (CDC) Division of Oral Health; $40 million for the Health
Resources and Services Administration (HRSA) Oral Health Workforce
Development, including $24 million for Pediatric and General Dental
Residency programs; and $512 million for the National Institute of
Dental and Craniofacial Research (NIDCR) in the National Institutes of
Health (NIH). COVID-19 has highlighted the need for a strong public
health infrastructure. The following programs and efforts are important
to the foundation and future of oral health and dental care.
action for dental health act
The ADA applauds Congress for the passage of the Action for Dental
Health (ADH) Act to help ensure greater access to dental care for all
Americans. As you weigh ADA's funding requests for CDC and HRSA, please
consider ADH (Public Law 115-302, section 3) among the programs that
additional funding would support. The new law allows the CDC Division
of Oral Health and HRSA Oral Health Workforce Development program to
expand their roles in dental prevention, education, and continuity of
care in underserved communities. These efforts would include
initiatives such as the Community Dental Health Coordinator (CDHC) and
Emergency Department (ED) Referral programs. CDHCs are community health
workers who are members of the dental team. CDHCs provide oral health
prevention and education, care coordination, and patient navigation
services to people in underserved urban, rural, and Native American
communities. CDHCs serve in numerous community settings including,
health centers, private practices, schools and Head Start programs. In
a post-pandemic future, the role of CDHCs is even more critical to help
families reconnect with their dentists and re-establish their dental
treatment routines. CDHCs also play an important role in keeping
patients out of the ED by connecting them to other sources of care. In
2017, there were 2.1 million visits to EDs for dental-related reasons,
at a cost of $2.7 billion.\1\ There are seven different ED referral
program models where the EDs form alliances with graduate dental
education programs, non-profit agencies, community health centers, and/
or private dental practices. By referring patients to an ongoing and
comprehensive source of dental treatment, these programs are reducing
costs and helping to decrease opioid abuse.
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\1\ American Dental Association Health Policy Institute. Emergency
Department Visits for Dental Conditions-A Snapshot. https://
www.ada.org/en/science-research/health-policy-institute/publications/
infographics?utm_source=adaorg&utm_medium=hpifeaturedbox&utm_content=
infographics.
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cdc division of oral health ($29 million)
The CDC Division of Oral Health is a much needed and highly valued
source of support for state health departments to help reduce oral
health disparities through evidence-based community preventive
interventions and access to clinical preventive services. The
Division's investment in programs like oral health surveillance,
community water fluoridation, school-based dental sealant programs, and
oral health literacy has helped to significantly reduce the incidence
of oral disease among children and adults. In order to expand the
Division's capacity and outreach, more funding is needed to support
additional states with the infrastructure to develop and implement
policies and programs to prevent or minimize oral disease. Currently 20
states, including Alabama and New Mexico, which have some of the
highest poverty rates, have never received funding from the Division of
Oral Health. Additional funding would provide these states with the
capacity and infrastructure needed to translate health promotion and
disease prevention approaches into effective policies and healthcare
practices where all Americans benefit. Also, the Division's
contributions in the CDC response to COVID-19 has guided the dental
community through the uncertainty of the nation's public health
emergency. The dental community continues to look to the CDC and the
Division of Oral Health for further guidance as states begin to reopen.
hrsa--title vii, general and pediatric dental
residency programs ($24 million)
Within the amount requested for HRSA's Oral Health Workforce
Development Program, the ADA requests $24 million for Title VII--
General and Pediatric Dental Residencies. This amount includes funding
for the Dental Faculty Loan Repayment Program. Title VII is the only
Federal program focused on improving the supply, distribution, and
diversity of the dental profession workforce. By providing advanced
training opportunities to oral health professionals, the program plays
a critical role in helping the workforce adapt to meet the nation's
changing healthcare needs. We are pleased that Congress understands the
importance of this program and the impact that it has on medically
underserved communities.
hrsa--chief dental officer
The ADA believes that HRSA needs a leading voice on oral health to
oversee and lead all oral health programs and initiatives across the
agency. In 2012, the Chief Dental Officer (CDO) position was downgraded
to a senior dental advisor and moved several layers below HRSA
leadership without appropriate staff or resources. This occurred
despite the Administration's commitment in 2010 to establish the Oral
Health Initiative, which highlighted several HRSA programs to improve
access to oral healthcare, especially for underserved populations. We
thank the Subcommittee for its strong support directing HRSA to
reinstate the CDO with executive level authority. However, while the
title was restored in 2017, the function of the position remains
unchanged. We urge the Subcommittee to direct HRSA to fully restore
this position with the appropriate duties of a chief dental officer.
nih--nidcr ($512 million)
We extend our gratitude to Congress for supporting NIDCR research
over the years. Because of your efforts, NIDCR continues to conduct and
support research on some of our nation's most pressing public health
issues contributing to better oral and overall health for all
Americans. Those efforts include contributing to the knowledge base on
pain biology and management, including non-opioid treatments for pain;
salivary diagnostics; and the social, behavioral, and genetic
underpinnings of oral health disparities. The COVID-19 pandemic has
been a stark reminder of the crucial role that biomedical and public
health research play in our society. The research enterprise is
essential to safeguarding public health, national security, economic
growth and competitiveness in global scientific leadership. While
research institutions are understandably concentrating on coronavirus-
related research, most other research has been scaled back or stopped
entirely due to pandemic-induced closures of university campuses and
laboratories. The longer this pandemic continues, the more harm and
strain it will cause to our nation's research workforce and
capabilities; sustaining its strength will be vital if the United
States is to remain a leader in global research and in its ability to
respond to future public health crises. This funding request--in
addition to our emergency supplemental request of $170 million and $90
million--would help restore NIDCR research to pre-pandemic levels and
help align the agency's research agenda to reflect the new reality of
COVID-19 and the impact it will have on the practice of dentistry and
oral health. We respectfully request your continued support for NIDCR.
Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to share with you and the Subcommittee the importance of
access to dental care and the programs needed to help meet the nation's
changing oral healthcare needs. We understand the difficult task you
face as you put together the fiscal year 2021 Labor-HHS-Education-
Appropriations bill in the current environment of tight budget
constraints while dealing with a public health crisis. The ADA looks
forward to working with the Subcommittee in maintaining oral health as
a priority in healthcare.
______
Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA) represents all 68
U.S. dental schools, more than 1,000 allied and advanced dental
education programs, over 60 corporate partners and more than 20,000
individuals. ADEA submits this testimony on the Departments of Health
and Human Services, Education and Related Agencies budget for the
record and for your consideration as you begin prioritizing fiscal year
2021 appropriation requests.
According to the Health Resources and Services Administration
(HRSA), 59 million Americans live in one of the nearly 6,319 dental
care Health Professional Shortage Areas (HPSAs). To close this gap,
HRSA estimates that over 10,495 new practitioners are needed.
Dental schools have suffered the same challenges that other health
profession education institutions have faced related to the coronavirus
pandemic. ADEA is grateful for the support from the Committee on
Appropriations and the Congress in establishing the Providers Relief
Fund and look forward to working with you further to address the
infrastructure and modernization needs that will be required as we move
toward reopening our facilities and dental clinics.
Before these schools and programs can fully reopen for patient
care, most will require some modification to clinic spaces and
protocols. For dental students, patient care experience is obtained in
dental clinics, which are in all dental schools. These clinics must
include most of the major service areas of a hospital and adhere to the
rigorous guidelines that protect the health and safety of the public,
much like hospitals do. Dental schools operate full clinical facilities
with all the necessary treatment rooms and surgical suites, including
areas for sterilization, diagnostic services such as radiology and
pathology, and business operations. In contrast, medical schools
conduct the majority of their clinical teaching and training in
separate hospitals or affiliated academic health centers and do not
require the stringent protective guidelines in their education
buildings that are in place at dental school clinics.
Many dental schools are part of the same campus as the medical
schools which are often in underserved communities. Dental schools also
exist within Minority Serving Institutions.
During this crisis, some dental school clinics have been
retrofitted to accommodate hospital beds to assist the academic medical
centers, which are operating above capacity. Also, dental faculty and
residents who remain on campus to treat dental emergencies have
volunteered in many medical centers or hospitals to evaluate patients
coming to the ER and perform other duties within their scope of
practice (administering COVID-19 tests, for instance).
Dental schools are part of their local communities' healthcare
safety net and are a valuable untapped healthcare resource that could
be used at this time, and in future pandemics. Dental school clinics
serve the same geographic patient populations as their medical
colleagues, providing care at reduced rates. A large number of the
individuals who receive dental care in these clinics are members of
underserved populations and do not have private insurance or the
ability to pay private practice fees.
As you deliberate funding for fiscal year 2021, ADEA respectfully
urges your support for the following funding requests.
$40.7 million: Title VII, Section 748, Public Health Service Act
The dental programs in Title VII provide critical education for
pre-doctoral dental and dental hygiene students and training for post-
doctoral residents in general, pediatric and public health dentistry.
Support for these programs will help ensure an adequately prepared and
culturally competent dental workforce. The funding supports the
investment made by Title VII in educating dentists, dental therapists,
dental hygienists, dental assistants and dental laboratory technicians.
The program also expands access to care for underserved areas in
community-based settings located in HPSAs.
HRSA programs address the dental school faculty shortage with
Dental Faculty Development and Dental Faculty Loan Repayment Program
grants to those who teach pediatric, general or public health
dentistry, and dental hygiene. Currently, more than 250 open, budgeted
faculty positions exist in dental schools. These programs assist
schools with recruiting and retaining faculty. Additionally, ADEA is
increasingly concerned that the dental research community will not be
able to attract and grow the pipeline of new researchers into academic
dental institutions without this support and recognition of its
importance.
Title VII Diversity and Student Aid programs play a critical role
in ensuring the future health profession workforce reflects the
nation's changing demographics. For the last several years, these
programs have not received adequate funding to sustain the progress
necessary to meet the challenges of an increasingly diverse U.S.
population.
The Health Careers Opportunity Program (HCOP) provides a vital
source of support for dental professionals serving underserved and
disadvantaged patients by providing a pipeline for individuals from
these populations. This unique workforce program encourages young
people from diverse and disadvantaged backgrounds to explore careers in
healthcare generally, and dentistry specifically. ADEA and the
Association of American Medical Colleges, through the funding of the
Robert Wood Johnson Foundation, operate the Summer Health Professions
Education Program (SHPEP), a six-week academic enrichment program for
rising college sophomores and juniors from historically
underrepresented (HUR) populations who are interested in the health
professions. A study of participants from 2006 to 2015 found that 65
percent applied to dental school and, as of 2015, 589 have graduated
from dental school. These pipeline programs are effective in attracting
HUR individuals. ADEA requests that funding for HCOP be continued.
The Area Health Education Centers (AHEC) program enhances high-
quality, culturally competent care in community-based interprofessional
clinical training settings. The infrastructure development grants and
point-of-service maintenance and expansion grants ensure that patients
from underserved populations receive quality care and health
professionals receive experience working with diverse populations. ADEA
strongly encourages the Committee to continue funding the vitally
important AHEC program.
$512 million: National Institute of Dental and Craniofacial Research
Dental research serves as the foundation of the dental professions.
Discoveries stemming from dental research have reduced the burden of
oral diseases, led to better dental health for millions of Americans,
and uncovered important links between oral and systemic health. ADEA
and dental school researchers are grateful for the increase NIDCR
received in fiscal year 2020; however, we note that NIDCR continues to
have the smallest budget of all the Institutes.
The requested increase for fiscal year 2021 will not bring us to
parity, but it will bring us closer and provide the stable and
consistent growth that Dr. Collins seeks for research. Through NIDCR
grants, dental researchers in academic dental institutions have
enhanced the quality of the nation's dental and overall health. Dental
researchers are poised to make dramatic breakthroughs, such as
restoring natural form and function to the mouth and face as a result
of disease, accident, or injury, and diagnosing systemic disease (such
as HIV and certain types of cancer) from saliva instead of blood and
urine samples. These breakthroughs, and countless others that bolster
America's role as a global scientific leader, require adequate funding.
$29 million: Centers for Disease Control and Prevention (CDC) Division
of Oral Health
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 dental disease affecting children and vulnerable
populations. The current path of decreased funding will have a
significant negative effect on the overall health and preparedness of
the nation's states and communities.
$18 million: Ryan White HIV/AIDS Treatment and Modernization Act, Part
F: Dental Reimbursement Program (DRP) and Community-Based
Dental Partnerships Program
Patients with compromised immune systems are more prone to oral
infections, such as periodontal disease and caries (tooth decay). The
DRP is a cost-effective Federal/institutional partnership that provides
partial reimbursement to academic dental institutions for costs
incurred from providing dental care to people living with HIV/AIDS.
Simultaneously, the program provides educational and training
opportunities to dental students, residents and allied dental students.
However, DRP reimbursement only averages 26 percent of the dental
schools' unreimbursed costs. The current reimbursement rate is
unsustainable long-term. Adequate funding of the Ryan White Part F
programs will help ensure that people living with HIV/AIDS receive
necessary dental care.
ADEA thanks you for your consideration of these funding requests
and looks forward to working with you to ensure the continuation of
these critical programs and improve the oral and systemic health and
well-being of the nation. Please consider ADEA a resource on any matter
pertaining to academic dentistry and education of the dental workforce
under your purview. For additional information, please contact B.
Timothy Leeth, ADEA Chief Advocacy Officer, at [email protected].
______
Prepared Statement of the American Diabetes Association
For fiscal year 2021, the American Diabetes Association (ADA) urges
the Subcommittee to increase its investment in diabetes research and
prioritize funding for diabetes prevention to help stop the diabetes
epidemic in our country. This is best accomplished by the Subcommittee
providing funding levels of $2.25 billion for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) at the National
Institutes of Health (NIH), $185 million for the Division of Diabetes
Translation (DDT) at Centers for Disease Control and Prevention (CDC),
and $35 million for the National Diabetes Prevention Program (National
DPP) at CDC.
Over 34 million Americans live with diabetes and an additional 88
million Americans have prediabetes. Diabetes is personal to me as I
have had type 1 diabetes almost my entire life (since age 5) and have
two sons who were diagnosed with type 1 diabetes in their early teenage
years. Additionally, I have spent over 40 years as a physician
scientist at the University of Colorado School of Medicine and have
focused on advancing the science and medicine of diabetes. Research is
so important as it drives the unknown and allows researchers, like me,
to keep learning and gaining new knowledge. Thanks to medical
discoveries and advancements at the NIH and translation research from
the CDC, diabetes care has advanced tremendously in recent years and
has improved the quality of life and life expectancy for the millions
of individuals with diabetes.
Although insulin was discovered nearly a century ago, we are still
at the beginning of diabetes care. Newer insulins are available,
providing more options than we had in 1922, but we still see the impact
of the disease both in complications directly attributable to the
disease--blindness, kidney disease, amputations, cardiovascular
diseases--and in problems stemming from the stressors caused by the
disease, including increased depression among people with diabetes. The
only way to reverse the troubling consequences of the disease is better
research into understanding and treating diabetes.
NIH is the single most important funding source for diabetes
research. As a researcher, NIDDK funding has allowed me to study two
major unanswered questions regarding diabetes and impact of diabetes on
lipid and lipoprotein metabolism. Major unanswered questions among many
include why some children and adults with genetic predisposition to
type 1 diabetes develop diabetes, i.e. what are the environmental
influences for the etiology of type 1 diabetes? A major task also
relates to the etiology of type 2 diabetes, i.e. why beta cells do not
respond to the insulin resistance that occurs in people who are obese
and do not develop type 2 diabetes? We need the continuation of robust
funding for NIDDK in support of dedicated research to provide the best
hope both for those who have been living with diabetes for decades,
fortunately like me, and for those who are newly diagnosed.
The human cost of diabetes is significant. The lifetime risk for
developing diagnosed diabetes among U.S. adults is 40 percent. Today
alone, 4,110 Americans will be diagnosed with diabetes, diabetes will
cause 295 to undergo an amputation, and 137 will enter end-stage kidney
disease treatment due to diabetes. Every 80 seconds an adult with
diabetes is hospitalized in the U.S. for heart disease and every 2
minutes an adult with diabetes is hospitalized with stroke. People
living with diabetes are twice as likely to develop and die from
cardiovascular disease. In addition to the physical toll, diabetes is
economically devasting in our country and for individuals impacted by
the disease. Released in March 2018, ``Economic Costs of Diabetes in
the U.S. in 2017,'' found the total annual cost of diagnosed diabetes
in our country has skyrocketed by an astonishing 26 percent over 5
years, to $327 billion. This is unsustainable for our nation,
especially when 1 in 3 Medicare dollars is already spent caring for
people with diabetes and people with diagnosed diabetes have healthcare
costs 2.3 times higher than those without diabetes. Despite the
escalating physical and economic cost of diabetes to our nation and
families, the Federal investment in diabetes research and prevention
programs at the NIH and CDC still falls short of the need. The state of
our nation's diabetes epidemic justifies increased Federal funding in
fiscal year 2021.
background
Diabetes is a chronic disease that impairs the body's ability to
utilize food. The hormone insulin, which is made in the pancreas, is
needed for the body to convert food into energy. In people with
diabetes, the pancreas fails to produce insulin (type 1 diabetes), or
it does not create enough insulin to overcome cells that are resistant
to insulin (type 2 diabetes). Diabetes results in too much glucose in
the blood stream. Additionally, up to 9.2 percent of pregnancies are
affected by gestational diabetes, a form of glucose intolerance
diagnosed during pregnancy that places both mother and baby at risk for
complications and for type 2 diabetes later in life.
Diabetes does not have a cure, and management is necessary every
single day. People with diabetes make over 300 decisions about their
disease in a single day. They must carefully balance what they eat,
when they eat, when and how much they exercise, and manage insulin
injections constantly, knowing that one decision impacts all the
others. In my experience, individuals with diabetes can in part
overcome these challenges due to the advances with technology and are
able to carefully balance out the decisions they make daily.
national institute of diabetes, digestive, and kidney diseases at nih
ADA requests funding of $2.25 billion for NIDDK in fiscal year 2021
because NIDDK is responsible for major research breakthroughs that have
revolutionized how diabetes is treated and managed. People with
diabetes, including myself and my sons, can now use a variety of
insulin formulations, insulin infusion pumps, continuous glucose
monitoring (CGM) sensors, and regimens far superior to those used in
the past, which has significantly reduced the risk for serious
complications of diabetes
Although NIDDK research has led to the development of CGMs and
insulin pumps, which are life-changing managements tools for patients,
there is even more promising research that Congress needs to fund.
Diabetes researchers across the country are working on fruitful
proposals that can lead to the goal--a cure for this devasting disease.
NIDDK would be able to fund additional investigator-initiated research
grants to meet critical needs in areas with increased funding. This
includes: research biomarkers that can improve the treatment of
diabetic foot ulcers and ultimately reduce lower-limb amputations;
better understand gestational diabetes; the continued progress on the
artificial pancreas; understanding the relationship between diabetes
and neuro-cognitive conditions like dementia and Alzheimer's disease;
and study important emerging areas such as the incidence of type 2
diabetes in youth and artificial pancreas systems, particularly in
underrepresented populations. Mechanisms that relate to how diabetes
increases the risk of eye/kidney/nervous system complications, and
importantly cardiovascular disease is also under the purview of NIDDK.
the division of diabetes and translation at cdc
The Federal Government's efforts to prevent diabetes and its
serious complications through the DDT and its evidenced-based, outcome-
focused diabetes programs are essential to help stop the diabetes
epidemic. DDT's mission is to eliminate the preventable burden of
diabetes through research, education, and by translating science into
clinical practice. DDT has a proven record of success in primary
prevention efforts, as well as programs to help those with diabetes
manage their disease and complications.
The ADA urges Congress to provide DDT with $185 million in fiscal
year 2021. The increased funding will allow DDT to continue diabetes
prevention activities at the state and local levels. Additionally,
increased funding will support these efforts through the State and
Local Public Health Actions to Prevent Obesity, Diabetes, and Heart
Disease grants, which focus on improving prevention at the community
and health systems levels in populations with the highest risk for
diabetes; diabetes prevention efforts under the State Public Health
Actions grant program for cross-cutting approaches to prevent and
control diabetes, heart disease, and stroke; and allow for DDT to
translate research into more effective ways to prevent and treat
diabetes in communities and continue its valuable diabetes surveillance
work. DDT's surveillance work includes integrating and modernizing the
data collection CDC receives regarding prediabetes determining best
practices and addressing social determinates of health.
the national diabetes prevention program at cdc
It is alarming that 88 million Americans have prediabetes and are
on the cusp of developing type 2 diabetes. Nine out of ten individuals
with prediabetes do not know they have it, and within 5 years 15-30
percent of individuals with prediabetes will develop type 2 diabetes.
The National DPP managed by the CDC, can make progress in lowering the
incidence of diabetes in high-risk populations. The National DPP is
made up of a combination of public-private partnership of community
organizations, private insurers, employers, healthcare organizations,
faith-based organizations, and government agencies. This national
network of local sites provides trained staff, who work with
individuals who have a high risk of developing type 2 diabetes, with
cost-effective, group-based lifestyle intervention programs.
The National DPP grew out of a successful NIDDK clinical study
showing weight loss of 5-7 percent of body weight, achieved by reducing
calories and increasing physical activity to at least 150 minutes,
reduced the risk of developing type 2 diabetes by 58 percent in people
with prediabetes, and by 71 percent for those over 60 years old. Also,
the DPP conducted additional translational research, which showed the
National DPP works in the community setting, at a lower cost of about
$425 per participant.
The ADA urges Congress to provide $35 million for the National DPP
in fiscal year 2021 to continue its nationwide expansion. It is
imperative that Congress increase funding for National DPP to allow CDC
to increase the number of sites that offer this effective program,
specifically in the hardest-hit communities, continue to manage
National DPP programs, ensure sites follow the evidence-based
curriculum to achieve the same high level of results, and support
programs as they become Medicare suppliers.
conclusion
Congress must continue to make progress and invest in diabetes
research, education, and prevention: the 32 million Americans with
diabetes cannot wait. I urge the Subcommittee to make decisions for
fiscal year 2021 appropriations that reflect the necessity of reversing
the human and economic burden of this staggering disease. I look
forward to working with you and the ADA to stop diabetes.
[This statement was submitted by Robert H. Eckel, MD, President,
Medicine & Science, 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. As Congress
continues to address the current public health and economic needs
related to COVID-19, there are ongoing education research programs and
statistical infrastructure needs that would be appropriately addressed
through the regular appropriations process. AERA recommends that the
Institute of Education Sciences (IES) within the Department of
Education receive $670 million in fiscal year 2021. This recommendation
is also consistent with the request from the Friends of IES coalition,
for which we are a leading member. In addition, AERA recommends $44.7
billion for the National Institutes of Health (NIH) in fiscal year
2021, in support of important research in the Eunice Kennedy Shriver
National Institute of Child Health and Human Development (NICHD) and
the Office of Behavioral and Social Science Research (OBSSR).
AERA is the major national scientific association of 25,000
faculty, researchers, graduate students, and other distinguished
professionals dedicated to advancing knowledge about education,
encouraging scholarly inquiry related to education, and promoting the
use of research to improve education and serve the public good. Our
members, as well as state and Federal policymakers and practitioners,
rely on IES to provide and support reliable education statistics, data,
research, and evaluations.
IES is the independent and nonpartisan statistics, research, and
evaluation arm of the U.S. Department of Education charged with
supporting and disseminating rigorous scientific evidence on which to
ground education policy and practice. While located within the
Department of Education, the mission of IES as a science agency is more
closely aligned with other Federal agencies such as the National
Science Foundation and the National Institutes of Health.
This is a critical time to invest in education research, data, and
statistics to produce essential knowledge about teaching and learning
across all levels of education due to the unprecedent impact of the
COVID-19 pandemic on educational institutions and the students,
parents, teachers, and school leaders they serve. No institution is
more vital than education to developing essential capacities and
skills, to the economic wherewithal of our country, and to building a
sense of community and citizenship. Yet, without monitoring the
conditions of education and generating the knowledge we need and in
real time, we will diminish our effectiveness in adapting to changing
conditions that we inevitably will face. IES is already working
proactively to provide data and evidence-based resources, including,
for example, the addition of questions on longitudinal surveys
undertaken by National Center for Education Statistics (NCES) to gauge
the impact of COVID-19, conducting a meta-analysis study to highlight
effective distance learning practices, and webinars and guidance from
the Regional Educational Laboratories (RELs). But additional resources
seem both wise and prudent.
Outside of the response to the current crisis, we see numerous
examples of bipartisan support for scientific research and evidence-
based decisionmaking.
--The Department of Education is implementing the provisions of the
Foundations of Evidence-Based Policymaking Act, which directs
Federal agencies to leverage data and evaluations to inform
policy decisions. NCES as the statistical agency within the
Department has special responsibilities with respect to data
integrity, linkages, and analysis that simply cannot be assumed
elsewhere with the same degree of confidentiality and trust, as
mandated by this bi-partisan act.
--School districts are implementing school improvement plans for
their lowest performing schools under the framework provided
under the Every Student Succeeds Act (ESSA), and research and
evidence-based resources from IES are important tools for
supporting student needs and fostering school improvement.
--IES is increasing investment in research on career and technical
education, which also includes involvement in research and
evaluation activities specified in the Strengthening Career and
Technical Education for the 21st Century Act.
In short, the data and research infrastructure to build evidence
for improving educational outcomes require additional funding
necessitating action by your committee.
Since IES was created in 2002, it has made visible scientifically-
based contributions to the progress of education. Take, for example,
IES-supported research at the Community College Research Center (CCRC)
that led to significant changes in the remedial education program in
the North Carolina Community College System. In a partnership between
the system and CCRC, there was a shift from remedial education toward
an accelerated structure of developmental education that increased
student retention and degree completion. At the same time, the money
saved from restructuring remedial education was reinvested into STEM
and high-demand technical education. Despite the potential of research
to inform key policy decisions, we have much left to do to provide
high-quality education to all of our students.
As states are moving forward implementing their Every Student
Succeeds Act (ESSA) state plans, they are increasingly depending on
their Statewide Longitudinal Data Systems (SLDS). Initially developed
to help states measure accountability, these administrative data have
transformed from a hammer to a flashlight, increasing understanding
about student performance and teacher effectiveness without needing
major and sustained investments in research. To date, IES has
unfortunately been unable to meet the state demand for SLDS grants. In
2015, only 16 of 43 states that submitted applications received grants.
Those states that have benefitted from SLDS grants have clear success
to show from the Federal investment, but others are without this
information source to use. State leaders in Georgia and Mississippi
have testified in front of Congress about their use of SLDS to improve
student outcomes in their states.
I also want to bring to your attention the numerous ways that
Congress has signaled support for the use of education data in
decisionmaking. The most recent bipartisan, bicameral draft of the IES
reauthorization includes the continuation of SLDS, and we appreciate
Congress continuing to invest in this program despite proposals to
eliminate funding in recent budget requests. Eliminating this program
would act in direct contrast to the broad bipartisan support to
increase the use of data to inform policy decisions. Furthermore, cuts
to SLDS hurt states working to build data capacity at the same time
that ESSA is requiring states to make evidence-based decisions. Rather
than eliminating the SLDS program, AERA encourages this committee to
expand upon this very successful program. In addition, AERA opposes the
proposal to eliminate the Regional Educational Laboratories in the
fiscal year 2021 budget.
AERA also is concerned with the reduced staff capacity at IES, and
I would like to draw particular attention to the decades-long staff
attrition at NCES. As the second-oldest principal Federal statistical
agency in the U.S., NCES provides objective, nonbiased data on a wide
range of education indicators, including information on teacher
salaries, the amount of loans taken out by undergraduate students, and
the participation of students in English language learner programs.
NCES staff are also responsible for the development and administration
of the National Assessment of Educational Progress, detailing
longitudinal trends in student achievement. In recognizing the need for
NCES to produce accurate and reliable data and report in it
objectively, we encourage the subcommittee to ensure that NCES and IES
have the appropriate level of staff in order to effectively carry out
their missions in the Program Management line. Essential work is being
stymied and delayed in ways that are not cost effective from a public
policy perspective.
We also have concerns about the inclusion of proposals to
reauthorize the Education Sciences Reform Act (ESRA) in the fiscal year
2021 IES Congressional Justification to support the administration's
request for IES. Of particular concern is the proposal to create a new
assessment center within IES. In light of the May 12 blog post from IES
Director Mark Schneider detailing his argument for this center, we wish
to emphasize a fundamental problem in separating statistics, data, and
assessment. Every statistical agency worthy of that role needs to
examine outcomes with rigorous, reliable measures and statistics. Thus,
the very ambition that Director Schneider has for high-quality
assessments could be undermined by less, rather than more,
connectivity.
At a time of fiscal constraint when more expert staff are sorely
needed rather than an expanded administrative apparatus, the creation
of a separate assessment center seems ill-timed. It also seems hasty to
skip thoughtful consideration of a significant change to the structure
of IES that is in the jurisdiction of authorizing committees. We
strongly urge against the inclusion of appropriations language that
would establish an assessment center in absence of ESRA
reauthorization.
In addition to IES, AERA recommends $44.7 billion for the National
Institutes of Health (NIH) in fiscal year 2021 with proportional
increases for the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD) and the Office of Behavioral and
Social Science Research (OBSSR). NICHD supports research at the
intersection of health and education, including the genetic and
behavioral risks for child obesity, the use of opioids by mothers and
potential impact on infant and child brain development, and
interventions for students with learning disabilities who struggle with
reading. Investment in NICHD will allow the institute to continue
research both to increase understanding of the impact of opioid use
across the educational lifespan and to reduce risk for addiction, and
to bolster the professional development of early career researchers.
OBSSR plays an important role in coordinating and co-funding behavioral
and social science research across NIH that contribute to the
understanding of influences on health and interventions to improve
health outcomes.
Thank you for the opportunity to submit written testimony in
support of $670 million for IES and $44.7 billion for NIH in fiscal
year 2021. AERA welcomes working with you and your subcommittee on
strengthening investments in essential research, data, and statistics
related to education and learning.
[This statement was submitted by Felice J. Levine, PhD, Executive
Director, American Educational Research Association.]
______
Prepared Statement of the American Foundation for Suicide Prevention
My name is John H. Madigan, Jr. and I am the Senior Vice President
and Chief Public Policy Officer for the American Foundation for Suicide
Prevention (AFSP). I am pleased to submit this written testimony today
on behalf of our over 28,000 Field Advocates nationwide, and the
thousands of individuals who participate in our Out of the Darkness
Walks each year. AFSP has Chapters in all 50 states and sponsors a
variety of events and programs across the country each year. In
addition to raising to raising funds for research, education, and
advocacy, our Chapters also disseminate resources and programs in their
communities. This written testimony includes information that outlines
the suicide crisis in the United States and information about each of
AFSP's recommendations to the Subcommittee for fiscal year 2021.
Suicide is a major public health crisis in the United States.
Suicide is the second leading cause of death for ages 10-34, the fourth
leading cause of death for ages 35-54, and the tenth leading cause of
death overall in the United States. I lost my sister Nancy to suicide,
23 years ago. Every year over 10 million people seriously consider
suicide, over 1 million attempt suicide, and in 2018 we lost 48,344
Americans to suicide. Each of these individuals lost to these
preventable deaths are survived by tens of thousands of family,
friends, and community members. Despite such a high rate of incidence
and despite nearly 1-in-5 Americans living with a mental health
condition, more than half of those individuals won't seek treatment due
to poor public access to suicide prevention and treatment resources,
sparse and inadequate mental health services, and deeply entrenched
stigma. The most recent data from the Centers for Disease Control and
Prevention (CDC) confirmed that suicide rates are rising in the United
States. Suicide deaths across the country increased over 30 percent
since the turn of the century and continue to do so every year.
AFSP believes Congress must prioritize suicide prevention research,
programs, and education at funding levels commensurate with other
leading causes of death in the United States. We thank the
Subcommittee, Chairwoman Blunt and Ranking Member Murray for this
opportunity. Please find below AFSP's recommendations on funding and
report language for the Subcommittee to consider for fiscal year 2021.
Suicide Prevention Programs at the Substance Abuse and Mental
Health Administration (SAMHSA) need a greater investment towards crisis
and support services for suicide prevention activities throughout the
country. The National Suicide Prevention Lifeline (Lifeline) (1-800-
273-8255), one of SAMHSA's most effective and far reaching suicide
prevention initiatives, which provides free 24/7 confidential support
and resources for individuals experiencing distress, as well as
prevention, education, and best practices for professionals. The
Lifeline was funded at $19 million in fiscal year 2020 and the
President's fiscal year 2021 budget proposes keeping the Lifeline at
that same funding level. AFSP proposes an increase of $31 million, for
a total of $50 million for the National Suicide Prevention Lifeline
program to ensure more dedicated funding can be directed to the states
with the lowest answer rates and with the highest need, and for
national initiatives to better improve Lifeline quality and services.
Given the current COVID-19 pandemic in the United States, these
funds are urgently needed. During moments of acute public stress, the
Lifeline has seen surges in distressed individuals in need of crisis
services. In the current situation, calls to the National Suicide
Prevention Lifeline have increased depending on many factors, and the
majority of those reaching out are doing so related to anxiety, feeling
isolated, or related to loss. Mental health organizations are already
responding to unique challenges \1\ that the nearly 1-in-5 individuals
living with mental health conditions will face during this national
emergency. Following high profile suicides, the Lifeline has seen
nearly an eightfold increase in crisis calls \2\ and call volumes can
double after natural disasters.\3\ It is crucial that the Lifeline be
adequately resourced to respond to public demand for crisis services.
---------------------------------------------------------------------------
\1\ https://www.nami.org/getattachment/Press-Media/Press-Releases/
2020/COVID-19-and-Mental-Illness-NAMI-Releases-Importan/COVID-19-
Updated-Guide-1.pdf?lang=en-US.
\2\ https://www.usatoday.com/story/news/nation/2014/08/14/suicide-
hotline-calls-surge/14053415/.
\3\ https://www.sprc.org/news/puerto-rico-%E2%80%98i-sit-cry-all-
day%E2%80%99-suicide-hotline-calls-double-puerto-rico-six-months-after.
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--fiscal year 2020 actual: $19 million
--fiscal year 2021: $50 million--proposed
Suicide prevention research conducted at the National Institute of
Mental Health (NIMH) will allow for better understanding, treatment and
prevention of suicidality. NIMH has awarded grants totaling roughly $65
million over the last year on direct suicide prevention research, and
while this is a step in the right direction, we believe that more can
be done given the increasing rate of suicide across our country. AFSP
is the largest funder for suicide prevention research outside of the
Federal Government and much of what is known about suicide comes from
studies that AFSP has helped sponsor. Our studies open up new areas of
inquiry, and our council of scientific advisors helps set the national
research agenda.
There is no single cause to suicide. It most often occurs when
stressors exceed current coping abilities of someone suffering from a
mental health condition. Suicide prevention research is a vital tool in
identifying prevention, intervention, and postvention strategies that
save lives and inform best practices and future approaches and areas of
inquiry. Through encouraging increased synergy between the National
Institute for Mental Health (NIMH), the National Institute on Drug
Abuse (NIDA), and National Institute on Alcohol Abuse and Alcoholism
(NIAAA) a multifaceted approach to suicide prevention research beyond
the current work that the NIH is conducting can be applied. It is
important that we can evaluate suicide as the complex condition that it
is and find treatments and interventions for comorbid conditions that
will save lives. Therefore, the American Foundation for Suicide
Prevention encourages the House and Senate Appropriations Committee to
adopt report language that will increase suicide prevention research at
the NIMH.
--Proposed Report Language: Suicide Prevention.--The Committee
continues to be alarmed by the growing rates of suicide across
the country, with the CDC reporting a 30 percent increase since
1999. Suicide is currently the 10th leading cause of death for
all ages and the 2nd leading cause of death for young people
aged 10-34. The Committee commends NIMH for consistently
increasing the resources dedicated to suicide screening and
prevention research over the last three fiscal years and
encourages the Institute to provide an additional increase for
this purpose in fiscal year 2021, with special emphasis on
producing models that are interpretable, scalable, and
practical for clinical implementation, including mental and
behavioral healthcare interventions. The Committee also
encourages NIMH to consider the recommendations included in the
Action Alliance for Suicide Prevention's A Prioritized Research
Agenda for Suicide Prevention when allocating resources for
this purpose. In addition, the Committee believes increased
collaboration between NIMH and other NIH Institutes holds
immense value. The Committee strongly encourages NIMH to
partner with NIDA and NIAAA to examine the multifaceted
relationship between suicide and substance use disorder (SUD),
including opioid abuse. Enhanced research into these
relationships will provide critical knowledge surrounding
suicide warning signs. The Committee directs NIMH to provide an
update on these efforts in the fiscal year 2022 justification
materials.
The Centers for Disease Control and Prevention (CDC) is the
nation's leading health protection agency, and so it is a natural fit
that the CDC expand their suicide prevention efforts.
Through investing further in the CDC's new Suicide Prevention line
which began fiscal year 2020 at the National Center for Injury and
Prevention, there is a more holistic approach to suicide prevention
programming beyond the work that SAMHSA and the NIH are implementing,
evaluating, and researching. CDC data show that while depression and
other mental health conditions are a significant risk factor for
suicide, less than half of the individuals who die by suicide have a
known mental health condition. Further, the latest data show that there
is no single determining cause. Instead, suicide occurs in response to
multiple biological, psychological, interpersonal, environmental, and
social influences that interact with one another, often over time. This
evidence demonstrates a need for a comprehensive public health approach
to address suicide from all vantage points.
Currently, there is no complete set of suicide attempt data in the
United States, and through pilot programs to enhance the completeness
of data, researchers may be able to identify further connections
between suicide attempt behavior, and its connection to suicide, thus
allowing for improved prevention strategies. In order to prevent
suicide, programs implemented within communities must be scalable and
allow for sustainable efforts. Therefore, as the suicide rate continues
to grow each year, there is a need to make strategic investments that
will help save lives and reduce the suicide rate, such as the work that
the CDC is implementing through the Suicide Prevention line.
--fiscal year 2020: $10 million
--fiscal year 2021: $15 million--proposed
--Proposed Report Language: Suicide.--The Committee recognizes that
suicide is devastating communities across the U.S., as
evidenced by more than 48,344 deaths in 2018, and is the tenth
leading cause of death in America. While depression and other
mental health conditions are a significant risk factor for
suicide, less than half of the people who die by suicide have a
known mental health condition. The Committee includes
$15,000,000, an increase of $5,000,000 to build on the initial
appropriation in fiscal year 2020, for CDC to expand research
on the leading mechanisms of suicide deaths and identify
prevention strategies to reduce the deaths by suicide through
pilot projects to enhance the completeness of data to capture
mechanisms of death; expand syndromic surveillance; and support
research and evaluation projects to understand the pathways and
mechanisms that contribute to suicide attempts, and identify
prevention strategies that can be scaled at the community
level.
The Core State Violence and Injury Prevention Program (Core SVIPP)
in the National Center for Injury Prevention and Control (NCIPC) at the
CDC. Injuries and violence are the leading causes of death during the
first four decades of life, regardless of gender, race or socioeconomic
status. The inclusion of this dedicated funding through the National
Center for Injury Prevention and Control, housed under the Injury
Prevention Activities line would contribute in a meaningful way to
suicide prevention by empowering states to implement, evaluate, and
disseminate effective violence and injury prevention programs and
policies of their choice in addition to the core four areas identified
by the CDC: child abuse and neglect, traumatic brain injury, motor
vehicle crash injury and death, and intimate partner/sexual violence.
Currently, the Core SVIPP is only funded in 23 states, and serves the
purpose of reducing violence related morbidity and mortality, and
increases the sustainability of injury prevention programs.
--fiscal year 2020: $6.7 million
--fiscal year 2021: $20 million--proposed
We thank you for your consideration and hope that Congress is
willing to make greater investments in suicide prevention and crisis
services. The American Foundation for Suicide Prevention is dedicated
to saving lives and bringing hope to those affected by suicide. AFSP
creates a culture that's smart about mental health through education
and community programs, develops suicide prevention through research
and advocacy, and provides support for those affected by suicide.
Please let me know if you or any of your staff have any additional
questions.
[This statement was submitted by John H. Madigan, Jr. Senior Vice
President and Chief Public Policy Officer, American Foundation for
Suicide Prevention.]
______
Prepared Statement of the American Gastroenterological Association
national institute of allergy and infectious diseases
Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee, I would like to start by thanking you for the opportunity
to submit testimony on the U.S. Department of Health and Human Services
(HHS) fiscal year 2021 appropriations bill. I am Dr. Colleen Kelly, and
I am an associate professor of medicine at the Alpert Medical School of
Brown University. I am submitting testimony on behalf of the American
Gastroenterological Association (AGA) and its Fecal Microbiota
Transplant National Registry, whose principal investigators include
myself, Dr. Loren Laine from Yale School of Medicine, and Dr. Gary Wu
from the University of Pennsylvania School of Medicine. The AGA was
founded in 1897, and today, it has expanded its membership to include
more than 16,000 professionals who are dedicated to the advancement of
science, practice, and research in the field of gastroenterology. We
respectfully request the subcommittee to provide robust funding for the
National Institutes of Health (NIH). Additionally, we request report
language to support the Fecal Microbiota Transplant (FMT) National
Registry, a national data registry funded by the National Institute of
Allergy and Infectious Diseases (NIAID) that assesses short and long-
term safety and effectiveness of FMT as it relates to recurrent
Clostridioides difficile infection (CDI) and other clinical
indications.
Antimicrobial Resistant Infections
CDI is associated with the use of antibiotics and is the most
frequently transmitted infection in healthcare settings. CDI affects
more than 500,000 Americans each year, leading to hospitalizations,
which in turn, provide increased opportunity for the infection to
spread. Today, approximately 30,000 annual deaths can be attributed to
the condition. In recent years, there has been a concerning rise in
community acquired CDI and cases which are more severe or resistant to
standard therapies.
The human gastrointestinal system contains trillions of bacteria,
viruses and other microorganisms that collectively are known as the gut
microbiota. These microorganisms play an essential role in the body's
immune and digestive systems. However, the health of this microbial
community is adversely affected when antibiotics are used to treat an
underlying bacterial infection. The resultant loss of beneficial
organisms increases the risk for pathogens, such as C. difficile to
overgrow and cause disease. Like other resistant infections, the annual
incidence of CDI continues to rise with the widespread use of
antibiotics.
According to the Centers for Disease Control and Prevention (CDC),
patients who receive antibiotics are 7-10 times more likely to contract
CDI, with the risk increasing significantly for the elderly,
immunocompromised, and those with an extended stay in a hospital or
assisted living facility. Recent studies have confirmed elevated risk
of infection for certain demographics and hospital-related exposure.
For example, a 2011 study showed that 57 percent of CDI cases occurred
in patients older than 65 and 56 percent of cases occurred in females.
Remarkably, the same study also showed that 65 percent of cases were
contracted in a healthcare setting.
When CDI does not self-resolve after the cessation of antibiotic
treatments, many seek medical attention due to the severity of their
symptoms. At this point, additional antibiotics are used to treat the
infection, but approximately 25 percent of patients will experience a
recurrence. In cases where CDI persists after multiple rounds of
antibiotics, FMT may be used to treat the patient.
Fecal Microbiota Transplantation
FMT involves the delivery of a stool sample, containing the entire
community of microorganisms, from a healthy donor to a recipient in
order to restore the health of the gut microbiome. This process is
highly effective in treating recurrent CDI; nearly 90 percent of
patients do not experience a recurrence of symptoms after FMT. However,
this therapy presents a number of safety concerns, including risk of
infection transmission, and more research is necessary to understand
the short and long-term effects of FMT in the treatment of CDI.
Currently, the Food and Drug Administration (FDA) has not approved
the use of FMT, as it has designed the therapy as a drug and biological
product that requires an investigational new drug (IND) application;
yet, the agency has recognized the benefits of FMT treatment in
patients with CDI who have not responded to other therapies. To that
end, the FDA issued guidance in 2013 whereby it exercised enforcement
discretion to accommodate the needs of patients with recurrent CDI that
did not respond to standard therapies. While the enforcement discretion
policy ensures patient access to FMT, it has consequently left a void
in the surveillance of safety and effectiveness that must be addressed
as the practice of FMT continues to expand. Physicians and scientists
have learned the importance of vigilance in collecting information on
the outcomes of medical interventions after a generation of patients
was infected with HIV and hepatitis C from blood transfusions.
Real-world surveillance of FMT is more important than ever due to
the emergence of the novel coronavirus SARS-CoV-2 and the associated
coronavirus disease 2019 (COVID-19). As reported by the Centers for
Disease Control and Prevention, COVID-19 has led to over 78,000 deaths
in the U.S. as of May 10, 2020. FMT procedures have largely stopped
across the U.S. as many clinics perform FMT using endoscopic
techniques, and these ``elective'' procedures have been discouraged
during the COVID-19 pandemic. In addition, the novel coronavirus has
been detected in the stool of patients hospitalized for COVID-19 and it
remains unknown whether SARS-CoV-2 can be transmitted from person to
person through feces. When COVID-19 subsides, it will be critical to
monitor how clinics performing FMT are screening stool donors and
testing donated stool for the presence of SARS-CoV-2. It will also be
important to track the outcomes of patients receiving FMT, including
the incidence of COVID-19.
FMT National Registry
In August of 2016, the FMT National Registry was developed and
received 5 years of funding from the National Institute of Allergy and
Infectious Diseases (NIAID) to study patients receiving FMT or other
gut-related microbiota products. The AGA collaborated with the Crohn's
and Colitis Foundation, Infectious Diseases Society of America and
North American Society for Pediatric Gastroenterology, Hepatology and
Nutrition to create the registry and our steering committee includes
physician liaisons from each of these partners. The registry aims to
collect data from 75 clinical sites across the country to monitor
patients 30 days, 6 months, 1 year, and 2 years after they receive FMT.
The registry will also collect patient-reported outcomes directly from
participants annually, starting at 1 year and up to 10 years after
their FMT.
To date, more than 250 patients have been observed through the
first benchmark of 30 days and have seen an initial success rate of 90
percent. Of these patients, more than 150 have been observed through
the second benchmark of 6 months and 96 percent of those with an
initial success remained cured. From the perspective of safety, no new
infections were reported in 95 percent of patients and no deaths were
reported at the first benchmark of 30 days. At the second benchmark of
6 months, 90 percent of patients remained without any life-threatening
infections. Though four deaths were reported at the second benchmark,
none were for reasons determined to be related to the FMT procedure.
In June 2019, the FDA announced the death of a patient receiving
FMT caused by a contaminated donor sample. Consequently, sites
performing FMT under an IND permit have additional donor screening
criteria and testing requirements to detect the presence of antibiotic
resistant bacteria in donor samples. The FMT National Registry fills
the information gap for sites performing FMT under the FDA's
enforcement discretion policy, for whom these requirements are non-
binding. In addition to patient safety and effectiveness outcomes, the
registry collects procedural information such as donor screening
criteria and method of FMT delivery. This data is especially important
given the emergence of the novel coronavirus, and the unknowns
regarding potential transmission of the virus through stool. Therefore,
the registry will serve as a central hub to gather information on donor
screening and stool testing procedures related to COVID-19.
Beyond CDI, FMT is being studied for many other clinical
applications with known associations to the gut microbiome. These
include gastrointestinal disorders such as inflammatory bowel disease
(i.e., Crohn's disease, ulcerative colitis), irritable bowel syndrome
and hepatic encephalopathy; central nervous system diseases such as
autism, Parkinson disease and multiple sclerosis; obesity and metabolic
syndrome; and cancers, particularly colorectal cancer, as well as the
effectiveness of cancer immunotherapies and the treatment of graft-
versus-host disease in patients who have received stem cell
transplantation. As such, the FMT National Registry has been built with
the flexibility to collect data on these other indications.
The NIH funding received thus far has been instrumental in the
development of future treatments for millions of patients. The FMT
National Registry has provided us with valuable insights regarding the
safety and effectiveness of FMT in the treatment of CDI. The AGA
recognizes the continued need to collect systemic data on the short and
long-term outcomes of FMT. Therefore, the AGA urges the subcommittee to
include the following report language that would allow NIH to continue
its support of the FMT registry.
FMT National Registry.--The Committee recognizes that the FDA has
allowed for enforcement discretion to promote continued patient access
to fecal microbiota transplantation (FMT) for recurrent C. difficile
infections. To help inform clinicians and patients, Congress encourages
NIH to continue to support the FMT National Registry and related
research efforts to better understand the short- and long-term safety
and effectiveness of FMT.
In addition to the AGA, the requested report language is supported
by the following organizations: American College of Gastroenterology,
American Neurogastroenterology and Motility Society, American Society
for Gastrointestinal Endoscopy, Association of Gastrointestinal
Motility Disorders, Crohn's & Colitis Foundation, Digestive Disease
National Coalition, Global Liver Institute, Infectious Diseases Society
of America, Massachusetts Gastroenterology Association, The National
Chronic Pancreatitis Support Network, No Stomach For Cancer, North
American Society for Pediatric Gastroenterology, Hepatology and
Nutrition, North Carolina Society of Gastroenterology, The Oley
Foundation, Peggy Lillis Foundation, Society of Gastroenterology Nurses
and Associates, and United Ostomy Associations of America.
On behalf of AGA, its members, and the FMT National Registry, I
would like to thank you for your consideration of this request. If you
have any questions, please contact Kathleen Teixeira, Vice President of
Government Affairs, at [email protected].
[This statement was submitted by Dr. Colleen Kelly, MD, FACG,
Associate
Professor of Medicine, Brown Alpert Medical School, American
Gastroenterological Association.]
______
Prepared Statement of the American Geophysical Union
The American Geophysical Union (AGU), a non-profit, non-partisan
scientific society, appreciates the opportunity to submit testimony
regarding the fiscal year 2021 appropriation for the National Institute
of Environmental Health Sciences (NIEHS). AGU, on behalf of its
community of 110,000 Earth and space scientists, respectfully requests
that the 116th Congress appropriate $860.3 million for the NIEHS. AGU's
appropriations request takes into consideration previous budget cuts
and accounts for both inflation and a necessary real four-percent year-
over-year growth, to ensure that the U.S. remains at the forefront of
research and innovation.\1\
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\1\ This amount of growth is recommended by the Innovation: An
American Imperative statement, which was authored by nine large U.S.
corporations and endorsed by over 500 leading industry, higher
education, science, and engineering organizations from across the 50
states. https://innovation-imperative.herokuapp.com/index.html.
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Under the umbrella of the National Institutes of Health (NIH), the
NIEHS conducts essential, innovative research that advances our
understanding of the effects of environmental changes or exposures on
human health and disease in the U.S. and across the globe. Through
NIEHS research, policymakers have access to vital, unbiased science
that is necessary for making informed decisions when addressing public
health issues. A few examples of the NIEHS's invaluable work are
provided below.
Improving Disaster Response, Reducing Health Impacts, & Preventing
Future Harm
The NIH Disaster Research Response program, launched by the NIEHS
and the National Library of Medicine, helps to address the ongoing need
for time-sensitive research in the aftermath of disasters, such as
hurricanes, wildfires, oil spills, and public health crises. Such
research helps scientists, government agencies, and communities better
understand immediate environmental exposures and injury risks,
potential short-term and long-term health impacts, the effectiveness of
health response efforts and environmental cleanup efforts, as well as
factors affecting post-disaster recovery and resiliency to future
events. To support timely gathering of the environmental and toxicology
data needed, the program has readily available research protocols, data
collections tools, and training resources.\2\
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\2\ See, NIH Disaster Research Response Program (DR2), https://
dr2.nlm.nih.gov/.
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Increasing Knowledge of Health Effects Related to PFAS Exposure
The NIEHS continues to be at the forefront of research on
perfluoroalkyl and polyfluoroalkyl substances (PFAS). A year ago, at
least 610 locations in 43 states were known to be affected by PFAS
contamination, which included drinking water systems serving an
estimated 19 million people.\3\ Research into the possible health
impacts of PFAS chemicals exposure has already unmasked many links to
adverse health outcomes. For example, research has revealed that PFAS
exposure may increase a woman's risk of pregnancy complications.\4\
However, there is still much to understand regarding the effects of
PFAS exposure, which is why the NIEHS continues to conduct research and
award grants to external organizations across the nation.
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\3\ Based on data analysis by the Environmental Working Group and
Northeastern University. Walker, B., (6 May 2019). Mapping the PFAS
contamination crisis: New data show 610 sites in 43 states, EWG News
and Analysis, https://www.ewg.org/news-and-analysis/2019/04/mapping-
pfas-contamination-crisis-new-data-show-610-sites-43-states.
\4\ Broadfoot, M., (February 2020). Replacement chemicals may put
pregnancies at risk. Environmental Factor, NIEHS Newsletter, https://
factor.niehs.nih.gov/2020/2/science-highlights/replacement/index.htm.
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Growing the Environmental Health Science Workforce
To further expand the world's understanding of environmental
impacts on human health and disease and support interdisciplinary
scientific research, the NIEHS provides training and educational
opportunities for students of all ages-from the high school and
undergraduate levels to graduate students and faculty. For example, the
NIEHS Medical Student Research Fellowship program provides medical
students an opportunity to train in environmental health-related
research for a year at the NIEHS.\5\ The NIEHS also awards NIH Summer
Research Experience Program (R25) grants that give high school and
college students and science teachers an opportunity to gain valuable
research experience at a higher education institution during the
summer.\6\
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\5\ See, NIEHS Medical Student Research Fellowships, https://
www.niehs.nih.gov/careers/research/med-students/index.cfm.
\6\ See, the NIH Summer Research Experience Programs (R25), https:/
/www.niehs.nih.gov/research/supported/irt/summer_research/index.cfm.
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conclusion
AGU recognizes that difficult decisions must be made within the
constraints of the current budget environment and believes that the
future of the U.S. is best served by a strong and sustained investment
in the full scope of our research enterprise-including new, innovative
research regarding the impact of environmental factors on human health
generated by the NIEHS. Thank you for your thoughtful consideration of
this request and for the opportunity to submit this testimony.
[This statement was submitted by Michael Villafranca, Senior
Specialist, Public Affairs.]
______
Prepared Statement of the American Geriatrics Society
The American Geriatrics Society (AGS) greatly appreciates the
opportunity to submit this testimony. The AGS is a national non-profit
organization of nearly 6,000 geriatrics healthcare professionals and
basic and clinical researchers dedicated to improving the health,
independence, and quality of life of all older Americans. As the
Subcommittee works on its fiscal year 2021 Labor, Health and Human
Services, and Related Agencies Appropriations Bill, we ask that you
prioritize funding for the geriatrics education and training programs
under the Title VII of the Public Health Service (PHS) Act, and for
aging research within the National Institutes of Health (NIH) and
National Institute on Aging (NIA).
We are appreciative of your ongoing support of the Title VII and
VIII Geriatrics Health Professions Programs at the Health Resources and
Services Agency (HRSA), which includes the Geriatrics Workforce
Enhancement Programs (GWEPs) and Geriatrics Academic Career Awards
(GACAs). However, the AGS believes it is urgent that we increase the
educational and training opportunities in geriatrics and gerontology
and ensure that HRSA receives the funding expansion necessary for these
critically important programs for the care and health of older adults.
We ask that the Subcommittee consider the following funding levels
for these programs in fiscal year 2021:
--At least $51 million to support the Geriatrics Workforce
Enhancement Program and the Geriatrics Academic Career Award
Program (PHS Act Title VII, Sections 750 and 753(a))
--An increase of $3 billion over the enacted fiscal year 2020 level
in the fiscal year 2021 budget for total spending at NIH and a
minimum increase of $354 million to invest in biomedical,
behavioral, and social sciences aging research efforts across
NIH and research on Alzheimer's disease and related dementias
over the enacted fiscal year 2020 level
Sustained and enhanced Federal investment in these initiatives is
essential to delivering high-quality, better coordinated, efficient,
and cost-effective care to our older Americans whose numbers are
projected to increase dramatically in the coming years. According to
the U.S. Census Bureau, the number of people age 65 and older is
projected to more than double from 49 million today to more than 94
million by 2060,\1\ while those 85 and older is projected to more than
triple from 6 million today to 19 million by 2060.\2\ As our aging
population increases, so too will the prevalence of diseases
disproportionately affecting older people-most notably Alzheimer's
disease and related dementias (including vascular, Lewy body, and
frontotemporal dementia)--and the economic burden associated with these
diseases.
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\1\ U.S. Census Bureau. (2018). An Aging Nation: Projected Number
of Children and Older Adults. Retrieved from https://www.census.gov/
library/visualizations/2018/comm/historic-first.html.
\2\ Ibid.
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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
Geriatrics Workforce Enhancement Program and Geriatrics Academic Career
Awards (at least $51 million)
Our healthcare workforce receives little, if any, training in
geriatric principles,\3\ which leaves us ill-prepared to care for older
Americans as health needs evolve, especially during the current crisis.
With our nation continuing to face a severe shortage of geriatrics
healthcare providers and academics with the expertise to train these
providers, the AGS believes it is urgent that we increase the number of
educational and training opportunities in geriatrics and gerontology.
The requested increase in funding over fiscal year 2020 levels would
help ensure that HRSA receives the funding necessary to expand these
critically important programs commensurate with the increasing need.
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\3\ Only 3 percent of medical students take even one class in
geriatric medicine and fewer than 1 percent of RNs, pharmacists,
physician assistances and physical therapists are certified in
geriatrics or gerontology. Yet estimates are that by 2030, 3.5 million
additional healthcare professionals and direct-care workers will be
needed to care for older adults. 2018 Issue Brief, Eldercare Workforce
Alliance, available at: https://eldercareworkforce.org/wp-content/
uploads/2018/03/GWEP_OnePager_v2.pdf.
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The GWEP is currently the only Federal program designed to increase
the number of providers, in a variety of disciplines, with the skills
and training to care for older adults. The GWEPs educate and engage the
broader frontline workforce, including family caregivers, and focus on
opportunities to improve the quality of care delivered to older adults,
particularly in underserved and rural areas. The GWEP was launched in
2015 by HRSA with 44 three-year grants provided to awardees in 29
states. In 2019, HRSA funded a second cohort of 48 GWEPs across 35
states and two territories (Guam and Puerto Rico) and provided
extension grants to 15 former GWEP awardees. Due to GWEPs' partnerships
with primary care and community-based organizations, GWEPs are uniquely
positioned to rapidly address the needs of older adults and their
caregivers.
The GACA program is an essential complement to the GWEP. GACAs
ensure we can equip early-career clinician educators to become leaders
in geriatrics education and research. It is the only Federal program
designed to increase the number of faculty with geriatrics expertise in
a variety of disciplines. The program was eliminated in 2015 through a
consolidation of several training programs. However, the program was
reestablished in November 2018 when HRSA released a funding opportunity
indicating their intention to fund 26 GACAs for 4 years starting
September 1, 2019. Since 1998, original GACA recipients have trained as
many as 65,000 colleagues in geriatrics expertise and have contributed
to geriatrics education, research, and leadership across the U.S.
Our nation currently faces an unprecedented public health
emergency, the novel coronavirus, significantly impacting our older
loved ones. Access to a well-trained workforce and appropriate care for
medically complex older adults is imperative to maintaining the health
and quality of life for this growing segment of the nation's
population. As our nation works toward recovery and resilience from the
pandemic, our population will continue to age, and the need for
training in geriatrics and gerontology will continue to increase.
To address this issue, we ask the Subcommittee to provide a fiscal
year 2021 appropriation of at least $51 million for the GWEPs and
GACAs. This small increase in funding over fiscal year 2020 levels
would help ensure that HRSA receives the funding necessary to carry
these critically important programs forward. Additional funding will
also allow HRSA to expand the number of GWEPs and GACAs and move
towards closing the current geographic and demographic gaps in
geriatrics workforce training.
research funding initiatives
National Institutes of Health/National Institute on Aging (additional
$500 million for aging research efforts and a minimum increase
of $354 million for Alzheimer's disease and related dementias
research)
The institutes that make up the NIH and specifically the NIA lead
the national scientific effort to understand the nature of aging and to
extend the healthy, active years of life. As a member of the Friends of
the NIA (FoNIA), a broad-based coalition of aging, disease, research,
and patient groups committed to the advancement of medical research
that affects millions of older Americans-the AGS urges you to include
an increase of at least $500 million in the fiscal year 2021 budget for
biomedical, behavioral, and social sciences aging research efforts
across NIH and a minimum increase of $354 million for research on
Alzheimer's disease and related dementias over the enacted fiscal year
2020 level.
The Federal Government spends a significant and increasing amount
of funds on healthcare costs associated with age-related diseases. By
2060, for example, the number of people affected by dementia is
estimated to reach 14.9 million cases-nearly triple the number in
2020.\4\ Further, chronic diseases related to aging, such as diabetes,
heart disease, and cancer continue to afflict 80 percent of people age
65 and older \5\ and account for more than 75 percent of Medicare and
other Federal health expenditures.\6\ Continued and increased Federal
investments in scientific research will ensure that the NIH and NIA
have the resources to conduct groundbreaking research related to the
aging process, foster the development of research and clinical
scientists in aging, provide research resources, and communicate
information about aging and advances in research on aging.
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\4\ Matthews, K. A., Xu, W., Gaglioti, A. H., Holt, J. B., Croft,
J. B., Mack, D., & McGuire, L. C. (2019). Racial and ethnic estimates
of Alzheimer's disease and related dementias in the United States
(2015-2060) in adults aged* 65 years. Alzheimer's & Dementia, 15(1),
17-24.
\5\ National Prevention Council. (2016). Health Aging in Action:
Advancing the National Prevention Strategy. Retrieved from https://
www.cdc.gov/aging/pdf/healthy-aging-in-action508.pdf.
\6\ Erdem, E., Prada, S.I., Haffer, S.C. (2013). Medicare Payments:
How Much Do Chronic Conditions Matter? Medicare & Medicaid Research
Review, 3(2). Retrieved from http://dx.doi.org/10.5600/mmrr.003.02.b02.
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Additionally, the AGS supports a $3 billion increase over the
enacted fiscal year 2020 level in the fiscal year 2021 budget for total
spending at NIH. We believe that a meaningful increase in NIH-wide
funding, in combination with aging and prevalence of diseases
increases, will be essential to sustain the research needed to make
progress in addressing chronic disease, Alzheimer's disease, and
related dementias that disproportionately affect older people.
Strong support such as yours will help ensure that every older
American is able to receive high-quality care. We greatly appreciate
the Subcommittee for the opportunity to submit this testimony.
______
Prepared Statement of the American Heart Association
On behalf of our 40 million volunteers and supporters, the American
Heart Association (AHA) thanks Congress for its ongoing commitment to
the National Institutes of Health (NIH) and Centers for Disease Control
and Prevention (CDC). We also commend Congress for its bipartisan
response to the COVID-19 pandemic, which places heart disease and
stroke patients at heightened risk. According to emerging data, 40
percent of hospitalized coronavirus patients have some form of
cardiovascular disease, and experience 2 to 3 times higher death rates.
Doctors are reporting that hospitalized coronavirus patients are
experiencing cardiovascular complications such as heart-rhythm
disorders, blood clots, inflammation of the heart, and myocarditis,
which can lead to heart failure. Research from several countries has
also found cardiac damage in as many as 1 in 5 patients, even among
those with no signs of respiratory distress or previous heart disease.
Furthermore, new studies indicate that children with multisystem
inflammatory syndrome caused by COVID-19 may experience heart failure.
Although advances in research and prevention have produced large
reductions in mortality over many decades, cardiovascular disease (CVD)
stubbornly remains the leading cause of death and disability in the
United States, affecting 121.5 million Americans and accounting for 1
in every 6 healthcare dollars spent. Recent data shows that nearly half
(48 percent) of U.S. adults have some form of cardiovascular disease.
Even more troubling, the overall decline in population mortality rates
for CVD is slowing with actual increases for some groups, especially
for those living in rural counties in the United States. Data from the
2017 Centers for Disease Control and Prevention (CDC) National Health
Interview Survey showed a 40 percent higher prevalence of heart disease
among rural residents compared with their counterparts in small
metropolitan and urban areas, a gap that has grown over the past
decade. Among leading causes, rural areas have significantly higher
rates of uncontrolled cardiovascular risk factors including tobacco
use, physical inactivity, diabetes, high cholesterol, obesity, and
substance abuse.
Placing the highest burden on our nation's health and economy,
heart disease, stroke and other forms of cardiovascular disease remain
our nation's top killer and most expensive disease, costing nearly $1
billion a day. This cost is projected to reach over $1 trillion a year
by 2035. The American Heart Association calls on Congress to respond to
the challenges presented by cardiovascular disease by supporting the
NIH and CDC heart disease and stroke programs.
National Institutes of Health (NIH)--Propelling Scientific and Economic
Growth
Robust NIH-funded research helps prevent and cure disease,
transforms patient care, propels economic growth, drives innovation,
and preserves U.S. leadership in pharmaceuticals and biotechnology. NIH
continues to be the world's leader of basic research-the basis for all
medical progress and a basic Federal Government role the private sector
cannot emulate. Unfortunately, our country's competitive edge in
research has been eroded recently by inadequate resources.
Specifically, the U.S. has fallen out of the top 10 in innovation and
China is on the path to surpass our Nation in spending on science
research and development.
In addition to enriching health, NIH generates a strong return on
investment. In 2019, NIH supported more than 476,000 U.S. jobs and more
than $81 billion in economic activity in every state and in nearly all
congressional districts. Between 2010-2016 NIH research investments led
to 210 new medicines winning FDA approval and for every dollar increase
in public basic research an additional $8.38 of industry research and
development is stimulated. Yet, due to insufficient funding, NIH lost
over 20 percent of its purchasing power since 2003, as other countries
have boosted scientific investments, some by double digits. Moreover,
NHLBI extramural heart research dropped 22 percent in constant dollars
since 2003. This threatens to stall scientific progress and could deter
young scientists from pursuing careers in research unless Congress acts
now.
American Heart Association Advocates: We urge Congress to
appropriate $44.7 billion to the NIH to build on recent investments and
to improve health, spur economic growth, and preserve U.S. leadership
in biomedical research. We ask Congress to prioritize funding for heart
disease and stroke research to reflect the devastating burden they
inflict on Americans and to restore progress that has been stalled in
the battle against cardiovascular disease.
Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
People with underlying health conditions, such as cardiovascular
disease, hypertension, and diabetes have a higher risk for severe
COVID-19 complications and death. In severe cases, the SARS-CoV2
triggers an inflammatory response that can damage many organs in the
body including the heart, lung, and vascular systems. With initial
supplemental funding provided in the CARES Act, the National Heart,
Lung, and Blood Institute (NHLBI) is supporting research that will
improve our understanding of how COVID-19 attacks the body. This newly
acquired knowledge will in turn catalyze safe and effective treatments
against the virus. Recognizing the disparate impact the coronavirus is
having on segments of the American population, NHLBI is also leveraging
existing clinical trials and community-based studies to uncover the
different manifestations of the virus and its biomarkers.
To expand its investment in vital basic, clinical, and
translational research that addresses COVID-19 while also sustaining
current activities and investment in promising and critically needed
scientific research, AHA supports $3.924 billion for NHLBI. This
funding will allow the institute to tandemly address the COVID-19
pandemic while aggressively advancing the fight against heart disease,
stroke, heart failure, congenital heart disease, and vascular dementia
identified in NHLBI's Strategic Vision. Funding will also target
reducing heart disease deaths for women including mothers. The U.S.
maternal mortality rate is the worst among industrialized nations and
heart disease is the number one reason for maternal mortality.
Furthermore, many women who experience conditions like preeclampsia or
gestational diabetes are at greater risk for heart disease later in
life.
Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
Stroke continues to inflict a massive burden on our nation's long-
term health and economic stability. An estimated 795,000 Americans will
suffer a stroke this year, and more than 146,000 will die. Many of the
7 million survivors face grave physical, mental, and emotional
distress. Stroke costs an estimated $45.5 billion in medical expenses
and lost productivity annually. Projections also show that stroke's
medical direct costs will more than double by 2035. Since the onset of
the coronavirus pandemic, hospitals are reporting unusually high
numbers of stroke victims infected with COVID-19. These strokes are
believed to be caused by blood clots that form as the virus damages
blood vessel linings throughout the body. Experts say that this can
happen in any patients regardless of age, and even in those with few or
no symptoms.
AHA recommends $2.621 billion for NINDS. This funding level will
enhance existing initiatives and proactively advance the top priorities
in stroke prevention, treatment, and recovery research. This includes
supporting basic research and large population-based studies exploring
genetic, lifestyle, and other risk factors related to stroke in diverse
populations, including in rural communities that are found in the
stroke belt. Additional support will also fund ongoing stroke research
conducted under the BRAIN Initiative; research exploring how the
accumulation of white matter lesions in the brain can lead to stroke
and dementia; and ongoing clinical trials that are developing new
treatments and improved approaches to stroke recovery and
rehabilitation.
Preventing Cardiovascular Disease: Centers for Disease Control and
Prevention (CDC)
Cardiovascular disease is largely preventable -yet, risk factors
such as the increasing prevalence of diabetes mellitus, childhood
obesity, and hypertension rates are rising. Additionally, the use of e-
cigarettes has reached an epidemic level and threatens to erase decades
of progress to reduce tobacco use, especially among youth. We join the
CDC Coalition in asking for $8.3 billion for the Centers for Disease
Control and Prevention. In addition, we request $1.73 billion for the
National Center for Chronic Disease and Health Promotion to support
chronic disease prevention and public health initiatives. Chronic
diseases are responsible for 7 in 10 deaths each year and account for
most of our nation's healthcare costs.
The association requests $192 million for the Division for Heart
Disease and Stroke Prevention (DHDSP) as part of the national effort to
reduce COVID-19 related health complications and mortality. This $50
million in additional funding will expand and enhance the division's
ongoing activities to improve the nation's overall cardiovascular
health through risk factor screening and promoting behavioral health
interventions. These funds and resources should be focused on
communities with the highest burden of heart disease and stroke;
especially among populations where cardiovascular disease mortality
rates have recently increased.
As part of an overall strategy to prevent the development of
cardiovascular disease, AHA requests $125 million for the Division for
Nutrition, Physical Activity, and Obesity (DNPAO) to invest in
effective strategies that support healthy eating and active living.
Currently, DNPAO funds a limited number of states and communities to
support these evidence-based strategies. An increase in funding will
allow the CDC to fund all 50 states and the District of Columbia.
Cardiovascular disease is the leading cause of death for women. To
help combat this largely preventable disease, AHA proposes $46.7
million for WISEWOMAN to expand access to this state-based initiative
to the entire nation. WISEWOMAN helps uninsured and under-insured low-
income women ages 40 to 64 understand and reduce their risk for heart
disease and stroke by providing risk factor screenings and connecting
them with lifestyle programs, health counseling, and other community
resources.
We further recommend $5 million for Million Hearts to advance its
goal of preventing 1 million heart attacks and strokes by 2022.
Additional support will help to identify best practices to reduce heart
disease and stroke, conduct surveillance and data analysis to improve
interventions in high burden populations, and to administer recognition
programs for hospitals and health systems that are committed to working
systematically to improve the cardiovascular health of the communities
they serve.
AHA also supports a $310 million appropriation for the Office on
Smoking and Health (OSH). Additional resources will allow OSH to
address the new threat to public health posed by skyrocketing rates of
youth e-cigarette use while continuing to prevent and reduce other
forms of tobacco use.
Bridge Funding to Protect Nonprofit Research Pipeline
Supporting the biomedical research enterprise is more important
than ever for learning from this pandemic, creating evidence-based
clinical guidelines and robust systems of care, understanding the
epidemiology of infectious and chronic disease, and assuring population
health and well-being. The AHA is deeply concerned about the economic
consequences that the COVID-19 pandemic will have on America's research
ecosystem including the nonprofit and voluntary health community, which
is a critical pillar of America's drug research and development
pipeline as the fourth largest contributor for U.S. medical and health
research and development expenditures, and funder of thousands of early
and mid-career scientists and researchers each year. The decreases in
revenue that the sector is experiencing as a direct result of the
COVID-19 pandemic will significantly impact its ability to fund new
basic or clinical research and halt completion of ongoing clinical
trials, effectively bringing innovation to a stand-still. The AHA urges
Congress to provide at least $2 billion in emergency funding to support
organizations by offsetting the costs associated with stalled research,
costs for restarting research once researchers can return to their
labs, and unanticipated delays resulting from the COVID-19 pandemic
that will cause funding overages.
[This statement was submitted by Robert A. Harrington, M.D., FAHA,
President, American Heart Association.]
______
Prepared Statement of the American Indian Higher Education Consortium
On behalf of the nation's 37 Tribal Colleges and Universities
(TCUs), which collectively are the American Indian Higher Education
Consortium (AIHEC), we thank you for the opportunity to share our
fiscal year 2021 funding requests. The following is a list of
recommendations including Department, program, and funding requests.
Department of Education
Office of Postsecondary Education
--Strengthening Institutions HEA Title III--Part A (Sec. 316):
$45,000,000 (discretionary)
--Perkins Career and Technical Education Programs (Sec. 117):
$12,000,000
Department of Education
Office of Indian Education
--Indian Education Professional Development Program: $20,000,000
Department of Health and Human Services
--Administration for Children and Families/Office of Head Start
--TCU-Head Start Partnership Program: $8,000,000 in existing funds
Tribal Colleges and Universities: Serving Students Across Indian
Country and Rural America
Currently, 37 TCUs operate more than 75 campuses and sites in 16
states. TCU geographic boundaries encompass 80 percent of American
Indian reservations and Federal Indian trust lands. American Indian and
Alaska Native (AI/AN) TCU students represent more than 230 federally
recognized tribes and hail from more than 30 states. Nearly 80 percent
of these students receive Federal financial aid, and more than half are
first generation students. In total, TCUs serve over 165,000 American
Indians, Alaska Natives, and other rural residents each year through a
wide variety of academic and community-based programs. Funding cuts of
any amount to even one TCU program would force TCUs to scale back vital
programs and services that students rely on to complete degree and
certificate programs needed to succeed in their chosen career paths.
Any reduction in funding will threaten TCU accreditation status and
will further stretch overtaxed faculty and staff or result in cuts to
faculty and staff. The following are justifications for TCU fiscal year
2021 funding requests.
u.s. department of education
Strengthening Tribal Colleges (HEA Title III--Part A--Section 316):
TCUs urge the Subcommittee to provide $45,000,0000 for the
Strengthening Tribal Colleges program (HEA Title III--Part A).
The Strengthening Institutions HEA Title III program for TCUs
(Section 316) is specifically designed to address the critical, unmet
needs of AI/AN students and their communities. Through this program,
TCUs are able to provide student support services, native language
preservation, basic upkeep of campus buildings and infrastructure,
critical campus expansion, enterprise management systems, faculty for
core courses, and other necessary elements for a quality educational
experience. The Strengthening Institutions program provides formula-
based aid to 35 TCUs through two funding sources: Part A discretionary
funding (fiscal year 2020, $36.6 million) and Part F mandatory funding
(fiscal year 2020, $28.2 million). Last year, TCUs feared losing nearly
half of Title III funding with the anticipated expiration of Part F
funding. Fortunately, the ``Fostering Undergraduate Talent by Unlocking
Resources to Education Act (Public Law 116-91) was signed in to law on
December 20, 2019, permanently authorizing Part F mandatory funding at
$30 million for TCUs. Part A and Part F of the Title III program are
essential in supporting institutional development and student services.
We strongly urge the Subcommittee to fund the Strengthening
Institutions HEA III Part A--TCU Program (Section 316) at $45,000,000
million.
Carl D. Perkins Career and Technical Education Programs
Tribally Controlled Postsecondary Career and Technical
Institutions: AIHEC requests $12,000,000 to fund
grants under Sec. 117 of the Perkins Act.
Carl D. Perkins Career and Technical Education Act provides a
competitively awarded grant opportunity for tribally chartered career
and technical institutions (Sec.117), which provide critical workforce
development and job creation education and training programs to AI/ANs
from tribes and communities with some of the highest unemployment rates
in the nation.
Native American Career and Technical Education Program (NACTEP):
NACTEP (Sec. 116) reserves 1.25 percent of appropriated funding to
support AI/AN career and technical programs. The TCUs strongly urge the
Subcommittee to continue to support NACTEP, which is vital to the
continuation of career and technical education programs offered at TCUs
that provide job training and certifications to remote reservation
communities.
Office of Indian Education
Indian Education Professional Development Program: AIHEC
requests $20,000,000 for grants to TCUs and other
institutions of higher education.
The Indian Education Professional Development Program, administered
by the Office of Indian Education at the U.S. Department of Education,
provides grants to institutions of higher education to prepare and
train AI/ANs to serve as teachers and school administrators at
elementary and secondary schools. There is a growing teacher shortage
across the country, especially in urban and rural communities with high
AI/AN populations, where teacher recruitment and retention pose unique
challenges. In communities with teacher shortages, existing obstacles
to student success such as inadequate facilities and limited broadband
are further compounded by overcrowded classrooms. Targeted resources
like the Indian Education Professional Development Program help address
this shortage and ensure that AI/AN students receive high quality
elementary and secondary education.
Report Language Needed: Funding for two distinct activities is
provided under the ``Special Programs for Indian Children'' account:
the Indian Education Professional Develop Program and Native Youth
Community Projects. Despite increased funding in 2016 to the overall
account, increases were only provided to Native Youth Community
Projects; the Indian Education Professional Development Program did not
receive increased funding. In fiscal year 2019, the Special Programs
for Indian Children account received $67,993,000, of which $9,564,000
was provided to the Indian Education Professional Development Program.
AIHEC requests specific report language in order to increase funding
for the Indian Education Professional Development Program, at a minimum
of $20,000,000 in fiscal year 2021.
u.s. department of health and human services programs
Administration for Children and Families--Office of Head Start: Tribal
Colleges and Universities Head Start Partnership Program: AIHEC
requests $8,000,000 for the TCU-Head Start Partnership program.
The TCU Head Start Partnership program was re-established with the
designation of $4,000,000 within the fiscal year 2020 LHHS
appropriations bill. TCUs have had marked success in training early
childhood educators and Head Start teachers that are urgently needed
across Indian Country. In 2017, 74.5 percent of Head Start teachers
nationwide held a bachelor's degree as required by Federal law; but
less than 42 percent of Head Start teachers met the requirement in
Indian Country (Head Start Region 11); only 70 percent of workers in
Region 11 met the associate-level requirements or were enrolled in
associate's programs, compared to 90 percent nationally. TCUs are the
most cost-effective way for filling this gap. From 2000 to 2007, the
U.S. Department of Health and Human Services provided modest funding
for the TCU-Head Start Program (42 U.S.C. 9843g), which helped TCUs
build capacity in early childhood education by providing scholarships
and stipends for Indian Head Start teachers and teacher aides to enroll
in TCU early childhood/elementary education programs. Before the
program ended in 2007 (ironically, the same year that Congress
specifically authorized the program in the reauthorization of the Head
Start Act), TCUs had trained more than 400 Head Start workers and
teachers, many of whom have since left for higher paying jobs in
elementary schools. Today, TCUs such as Salish Kootenai College (Pablo,
MT) are providing culturally based early childhood education free of
charge to local Head Start professionals. In Michigan, Bay Mills
Community College provides online education programming for $50/credit
to Head Start staff nationwide. However, many Head Start programs in
Indian Country are paying far more for other sources to provide
training. With the restoration and continuation of this modestly funded
program, TCUs can aid in building an early childhood education
workforce to better serve the education needs of our AI/AN children.
substance abuse and mental health services administration
NEW Tribal College and University Centers for Excellence in Behavioral
Health/Substance Abuse Prevention: AIHEC requests $10,000,000
to establish this program.
The goal of the TCU Centers of Excellence program, similar to an
existing SAMHSA (Substance Abuse and Mental Health Services
Administration) program for HBCUs, is to grow a well-skilled and
culturally competent AI/AN behavioral health workforce by developing an
apprenticeship-based network of TCUs and partners from the health
industry and local, tribal, state, and regional providers. The TCU
Centers of Excellence would share best practices in curriculum
development, program implementation, and apprenticeships; recruit
students to careers in behavioral health fields to address mental and
substance use disorders; provide job training in behavioral health
fields; and prepare students for achieving credentials in behavioral
health fields. The TCU Centers of Excellence would emphasize education,
awareness, workforce training, and preparation for careers in mental
and substance use treatment, prevention, and research, including
addressing opioid abuse prevention, opioid use disorder treatment,
serious mental illness, and suicide prevention.
Conclusion
Tribal Colleges and Universities provide thousands of AI/AN
students with access to high quality, culturally appropriate,
postsecondary education opportunities, including critical early
childhood education and behavioral health programs. The modest Federal
investment in TCUs has paid great dividends in terms of employment,
education, and economic development. We ask you to renew your
commitment to help move our students and communities toward self-
sufficiency and request your full consideration of our fiscal year 2021
appropriations requests. Thank you.
______
Prepared Statement of the American Library Association
The American Library Association (ALA) urges the Subcommittee to
include in its regular fiscal year 2021 appropriations bill at least
the authorized level of $232 million for programs for the Library
Services and Technology Act (LSTA), $24.5 million for the Laura Bush
21st Century Librarian Program administered by the Institute of Museum
and Library Services (IMLS), and at least $30 million for the
Innovative Approaches to Literacy (IAL) program under the Department of
Education (DOE).
Libraries, like other public and private institutions, are
struggling to keep up with community needs for information resources,
particularly during the national emergency. As the crisis continues,
reduced tax revenue from state and local governments are already
impacting library budgets and forcing furloughs for library staffs. At
the same time, community demand for library services for economic
recovery will increase markedly (as we saw during the Great Recession).
Libraries offer streaming support for business advancement, career
development, and online resume building for those who have been
recently unemployed, and access to telehealth resources and trusted
sources for public health information. Many libraries also have hotspot
lending programs to help underserved families and students who do not
have access to the Internet at home. Libraries are thinking creatively
to provide services to patrons, such as streaming ``story times'' and
author discussions to encourage young children and adult learners to
keep reading in their homes. Libraries are leading the way in
supporting student distance learning needs through 24-hour WiFi access
in parking lots, homework help, mobile hotspots and other services.
ALA is the foremost national organization providing resources to
inspire library and information professionals to transform their
communities through essential programs and services. For more than 140
years, the ALA has been the trusted voice for academic, public, school,
government and special libraries, advocating for the profession and the
library's role in advancing learning and ensuring access to information
for all.
LSTA funding of at least $232 million for Grants to States and
$24.5 million for the Laura Bush 21st Century Librarian Program will
support your local library. If Senators haven't been to a library
recently, we urge Senators to visit their local library and see the
range of services they provide constituents.
The bulk of LSTA funds are distributed to each state through the
Institute of Museum and Library Services (IMLS) according to a
population-based grant formula. Each state must provide a 33 percent
match and determines at the state level how to meet local needs and
best allocate its LSTA grant awards. Libraries have used LSTA funding
for a broad range of diverse and innovative programs that profoundly
touch and better the lives of tens of millions of Americans in every
state in the nation, including particularly service to people with
disabilities, veterans, and job seekers. LSTA is truly a local
decisionmaking success story and a shining example of how a small
Federal investment can be efficiently and reliably leveraged into
dramatic state and local social and economic results. Here are just a
few current examples among many thousands made possible by LSTA over
time:
--Libraries across Missouri have used LSTA Grants to participate in
the annual Beanstalk Reading Challenge. The Challenge provides
customized reading support, books, tracking, and incentives for
young readers at numerous libraries in the state, including
Carthage Public Library, Little Dixie Regional Libraries, Rolla
Public Library, and University City Public Library.
--LSTA Grants have supported the activities of the Washington Digital
Heritage in carrying out a variety of digital initiatives
focuses on archival and special collections of cultural and/or
historical significance. These grants help preserve the stories
of local communities and celebrate a common heritage.
--The Alabama Regional Library for the Blind and Physically
Handicapped has provided digital recordings and equipment,
braille material, and services to more than 4,500 active
patrons since 1978. LSTA Grants help make these services
possible.
--Caswell (NC) County Public Library used its grant to create a
Learning Lab and Workforce Development Lab assisting local
businesses access to tailored employment assistance, equipment,
and access to a business and career center. A state-wide
priority includes meeting needs of local business for workforce
support.
--Dr. Soohyung Joo, assistant professor at the University of Kentucky
School of Information Science, was awarded a Laura Bush 21st
Century Librarian Program Planning Grant for her work towards
helping UK libraries examine research needs of patrons,
librarians, administrators, and scholars. This research helped
refocus the services and curricular provided at UK libraries.
Patrons described above were the direct beneficiaries of the LSTA
``Grants to States'' program administered by IMLS. Grants support
veterans, entrepreneurs, job seekers, taxpayers, children, and many
others throughout our nation. The President's proposal to eliminate
LSTA funding, in fact any cut to LSTA, will jeopardize vital and highly
cost-effective programs that benefit millions of Americans in every
state, and help build our economy one job and one community at a time.
These community resources are needed now more than ever.
Thanks to LSTA and other IMLS funds, many state libraries can
support Libraries for the Blind and Physically Handicapped or Talking
Book services, which provide access to reading materials in alternate
formats. There is no dedicated Federal funding stream for these
individuals at the local and state level. LSTA Grants to States funding
often fills this need.
Native American tribes are eligible to apply for LSTA grants
through the Native American Library Services program which currently
accounts for more than 8 percent of LSTA funding. These grants support
existing library operations for tribal communities, enhancing digital
connections, supporting professional development, and promote lifelong
learning for tribes. Recent recipients of these grants include the
Native Village of Port Graham (AK), Aroostook Micmac Council (ME),
Little Travers Bay Bands of Odawa Indians (MI), and Kat Nation (OK).
Accordingly, ALA asks that the Subcommittee provide at least $232
million for LSTA and $24.5 million for the Laura Bush 21st Century
Librarian Program in fiscal year 2021 to ensure that Americans of all
ages continue to have access to important resources at their local
library. ALA respectfully submits that there can be few, if any, more
democratic, cost-effective and impactful uses of Federal dollars than
LSTA in the entirety of the Federal budget.
In addition to supporting LSTA, ALA also asks that you maintain the
modest, but critical, Federal investment of $30 million in the
Innovative Approaches to Literacy (IAL) program, which was authorized
under Every Student Succeeds Act. IAL provides competitive awards to
school libraries and national not-for-profit organizations (including
partnerships that reach families outside of local educational agencies)
to put books into the hands of children and their families in high-need
communities.
Providing books and childhood literacy for such children is crucial
to their learning to read, which is crucial to their--and the
nation's--economic futures. Studies have shown that developing early
childhood reading proficiency is directly correlated to success in K-12
and college education and in careers. IAL also supports parental
engagement in their children's reading life and focuses on promoting
student literacy from birth through high school. IAL grants have been
awarded during the life of the program to almost every state in the
nation. Schools and non-profits across the country have received
grants, including the Bering Strait (AK) School District, The
Children's Reading Foundation (Kennewick, WA), Kansas City (MO) School
District, Cuero (TX) School District, and as well as many others.
For families living in poverty, access to reading materials is
severely limited. Children in such households have fewer books in their
homes than their peers, which hinders their ability to prepare for
school and to stay on track. IAL helps bridge that gap. Accordingly, we
urge the Subcommittee to foster this work by continuing to invest at
least $30 million in IAL.
ALA understands the tight fiscal constraints on the Subcommittee,
and we appreciate its continued dedicated support of LSTA and IAL.
Thank you for your commitment to sustaining and strengthening our
communities and our nation by supporting America's libraries.
[This statement was submitted by Kathi Kromer, Associate Executive
Director, American Library Association.]
______
Prepared Statement of the American Liver Foundation
summary of fiscal year 2021 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with a
funding increase of at least $3 billion for to bring total
agency funding up to a minimum of $44.7 billion annually.
--Please provide proportional increases for NIH Institutes and
Centers, including the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) and the National
Institute of Allergy and Infectious Diseases (NIAID).
--Please provide the Centers for Disease Control and Prevention (CDC)
with a funding increase of at least $500 million in
discretionary resources to bring total agency funding up to a
minimum of $8.3 billion annually.
--Please provide $5 million in line-item funding for a CDC
``Chronic Disease Education and Awareness Program'' as
outlined in the fiscal year 2020 House L-HHS Appropriations
Bill.
--Please provide at least $58 million for the CDC's new Elimination
Initiative focused on the nexus of the opioid epidemic and
the spike in infectious diseases.
--Please provide a meaningful fiscal year 2021 funding increase of
$95 million for the Division of Viral Hepatitis (DVH) at
the National Center for HIV/AIDS, Viral Hepatitis, STD, and
TB Prevention, which was level-funded at $39 million for
fiscal year 2020.
--Please provide the Health Resources and Services Administration
(HRSA) with a funding increase to at least $8.8 billion for
fiscal year 2021.
--Please continue to support and encourage efforts to improve organ
donation and otherwise enhance the ability of donor livers
for individuals waiting on the transplant list for a
donated liver.
_______________________________________________________________________
Thank you for the opportunity to submit testimony on behalf of the
American Liver Foundation (ALF) and the liver disease community.
Chairman Blunt, Ranking Member Murray, and distinguished members of the
subcommittee, we extend our thanks for the significant investments in
HHS, particularly NIH, provided for fiscal year 2020. Please maintain
this commitment and further enhances this support for medical research
and public health programs during the fiscal year 2021 appropriations
process. Thank you again.
about the foundation
Founded in 1976, the American Liver Foundation (ALF) is the
nation's largest patient advocacy organization for people with liver
disease. ALF reaches more than?2?million individuals each year with
health information, education and support services via its national
office,?16?U.S. divisions and an active online presence. Recognized as
a trusted voice for liver disease patients, ALF also operates a
national toll-free helpline (800-GO-LIVER), educates patients,
policymakers and the public, and provides grants to early-career
researchers to help find a cure for all liver diseases. ALF is
celebrating more than 40 years of turning patients into survivors. For
more information about ALF, please visit liverfoundation.org.
liver facts
The liver is one of the body's largest organs, performing hundreds
of functions daily including, removal of harmful substances from the
blood, digestion of fat, and storing of energy. Non-alcoholic fatty
liver disease (NAFLD), hepatitis C, and heavy alcohol consumption are
the most common causes of chronic liver disease or cirrhosis (severe
liver damage) in the U.S. Approximately 30 percent of adults and 3-10
percent of children have excessive fat in the liver or NAFLD which can
lead to a severe liver disease called non-alcoholic steatohepatitis
(NASH). Approximately 4.4 million Americans are living with Hepatitis B
or C but most do not know they are infected. More than 2 million
Americans are living with alcohol related liver disease. Approximately
5.5 million Americans are living with chronic liver disease or
cirrhosis. Vaccinations for hepatitis A and B and treatments for
hepatitis C are helping to change the course of this chronic life
altering disease for the patient community.
liver cancer public health at cdc
CDC hosts many important programs for cancer as well as chronic
disease, but none focused on addressing liver cancer. While liver
cancer is a leading killer, it is also preventable and more easily
managed if diagnosed early. The reality though is that risk factors are
not well known and there is an overall lack of public and professional
awareness about preventative practices and properly managing the
condition. CDC should have dedicated resources and congressional
encouragement to conduct liver cancer activities so this patient
community can enjoy the same benefits and public health improvements as
similar communities with ongoing CDC programs. Rather than having
Congress constantly adding and removing funding for timely activities,
public health experts at CDC should have a dedicated pot of resources
to administer grants and partnerships in meritorious and impactful
areas.
organ donation
Consistently, the number of organs available for transplantation on
an annual basis amounts to only a fraction of the number of patients on
the transplant list. Compounding this situation is the fact that fatty
liver disease affects a large and growing number of individuals and
makes livers unavailable for transplantation. Another complicating
factor is the fact that the rationing of cures for hepatitis ensures
that many patients who could otherwise be healthy end up on the
transplant list too and arbitrarily deny available organs to other
patients facing a variety of life-threatening illnesses. Please promote
organ donation and otherwise work to ensure Medicaid and other patients
impacted by hepatitis receive curative therapy when medically
appropriate.
the opioid epidemic
CDC has dubbed opioids and the infectious diseases that arrive in
the wake of the opioid crisis a ``dual epidemic''. Due to the rise in
rates of injection drug use, CDC has identified a 400 percent increase
in rates of hepatitis C among 20--29 year olds an 300 percent increase
among 30--39 year olds. Last year, the elimination initiative was
established at CDC, and the current budget request recommends greatly
enhancing support from $5 million to $58 million. Significantly
enhanced investment in this area is certainly warranted given the
ongoing need.
patient perspectives
Alison.--Alison is now a healthy 25-year-old from Trumbull,
Connecticut, only 5 years ago she was near death. Alison had been
suffering for most of her life with primary sclerosing cholangitis
(PSC), a condition that left her in need of a live-saving liver
transplant. On October 19th, 2009, Alison began her new life when her
transplant was successfully performed at Yale-New Haven Hospital.
Further complications ensued. Alison needed three additional surgeries
to ensure her health and that of her new liver. Today, she is healthy.
Kevin.--In May 2007, a medical team at New York Columbia
Presbyterian Hospital conducted its first living donor liver transplant
surgery on a bile duct cancer patient. The patient was Kevin, my
younger brother. I was the living donor. The transplant worked, but
Kevin had to endure multiple follow-up surgeries to address a bile
leakage that would not stop. But now, over 10 years later, he has long
since healed and doing great. We were lucky. And we know it.
Despite advances in medical and surgical science, the demand for
organs continues to vastly exceed the number of donors. Here, in New
York, only 27 percent of people age 18 and over have enrolled in the
New York State Donate Life Registry. But every ten minutes another
person is added to the national transplant waiting list. We need to
encourage more people to sign up to donate organs.
David.--In October 2014 my mother Geraldine passed away after a
very brief and completely unexpected battle with late-stage NASH. They
call NASH the ``silent killer'' and in Mom's case it was certainly
true; she was never diagnosed with any form of liver disease at all
before NASH. We had noticed some yellowing of her eyes and convinced
her to go to the doctor about a month earlier, but it took time to get
an appointment with a specialist, who checked her into a hospital upon
the visit. I founded NASHAWARE.com to help raise awareness and educate
others. If I can help even a few people it will all be worth it. But I
still want to do much more.
[This statement was submitted by Lynn Seim, Executive Vice
President and COO, American Liver Foundation.]
______
Prepared Statement of the American Lung Association
The American Lung Association is pleased to submit its
recommendations for fiscal year 2021 to the Labor, Health and Human
Services, and Education Appropriations Subcommittee.
The American Lung Association was founded in 1904 to fight
tuberculosis and is one of the oldest voluntary health organizations in
the United States. Since the beginning, the Lung Association has been
on the front lines advocating for laws that protect the air we breathe
and our lungs. Accordingly, the Lung Association is the leading
organization working to save lives by improving lung health and
preventing lung disease through education, advocacy and research. As
the result of funding from this Committee, public health and research
programs will help to prevent lung disease, improve health and, by
extension, save the lives of millions of Americans.
strengthening and rebuilding public health infrastructure
The COVID-19 pandemic has unscored the need for more robust
investments in our nation's public health infrastructure and supporting
programs that respond to public health emergencies. Several ideas have
been discussed, including a revision of the fiscal year 2021
discretionary budget caps in general, an exemption of certain public
health programs from the caps, and the creation of a health defense
program designed to address emerging crises that would not be confined
to the caps. The American Lung Association urges the committee to
consider these and other approaches to build and strengthen the
capacity of our national public health system.
The COVID-19 pandemic has also highlighted the importance of
preventing and managing chronic lung conditions. Individuals living
with lung disease are among the most at risk of serious health
complications as a result of COVID-19. The Lung Association recognizes
the tremendous challenge the Committee faces in responding to COVID-19
and urges the Committee to continue to invest in CDC programs that help
smokers quit, promote asthma control and support prevention and
treatment of other lung diseases, including COPD and lung cancer.
improving public health and maintaining our investment in medical
research
The American Lung Association strongly supports an increase in
funding to $44.7 billion for the National Institute of Health (NIH). We
need sustained investments in NIH so that the promise of biomedical
research can be achieved. The Lung Association supports robust funding
increases for the individual institutes within NIH, recognizing the
need for research funding increases to ensure the pace of research is
maintained across NIH.
lung disease
Lung disease is the third highest killer in America, taking the
lives of almost 414,000 Americans each year. It has been estimated that
more than 36 million Americans suffer from a chronic lung disease and
lung disease costs the economy $129 billion each year.
the prevention and public health fund
The Lung Association strongly supports the Prevention and Public
Health Fund that was established in the Affordable Care Act. We ask 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 the Centers for Disease Control and Prevention
(CDC) and its critical public health initiatives. The Prevention Fund
also supports CDC's media campaign ``Tips from Former Smokers.''
lung cancer
Lung cancer is the number one cancer killer of both women and men.
It is estimated that 228,820 new cases of lung cancer will be diagnosed
in 2020, and more than 135,000 Americans will die from the disease in
2020. Survival rates for lung cancer tend to be lower than those of
other leading cancers due to the lack of early detection and diagnosis.
African Americans are more likely to die from lung cancer than persons
of any other racial group. We ask the Committee to increase funding for
the National Institutes of Health to $44.7 billion in fiscal year 2021
and to include increased funding for lung cancer research as well as
support for the Cancer Moonshoot and the All of Us Program.
tobacco use
The use of tobacco is the number one preventable cause of death in
the United States. More than 37 million American adults smoke and
approximately half a million people die of tobacco-related disease each
year. Annual healthcare and lost productivity cost more than $300
billion in the U.S. each year. Each day, about 1,600 kids under 18
years of age try their first cigarette and close to 200 kids become
new, regular daily smokers. Additionally, e-cigarette use continues to
increase among our nation's youth, and now 1 in 3 high school students
use at least one tobacco product.
The CDC Office on Smoking and Health (OSH) must continue to receive
robust funding to help combat the tobacco-caused diseases that are
burdening the nation. Public health interventions have been
scientifically proven to reduce tobacco use, the leading cause of
preventable death in the United States. The American Lung Association
urges that $310 million be appropriated to OSH for fiscal year 2021.
The American Lung Association respectfully requests the Committee's
support for the Office of Smoking and Health and the ``Tips from Former
Smokers'' Campaign. Over the past 5 years, 500,000 Americans have
successfully quit smoking because of ``Tips'' and millions more have
made quit attempts. The ``Tips'' campaign has been an incredible return
on investment that continues to generate positive outcomes. An accepted
threshold for cost-effective public health interventions is
approximately $50,000. The 2012 Tips campaign spent $480 per smoker who
quit and $393 per year of life saved.
asthma
Over 24 million Americans have asthma, including 5.5 million
children. It is a highly prevalent and costly disease. The nation is
making progress to combat asthma, but this advancement can only
continue with sustained investment. Asthma costs the U.S. an estimated
$82 billion in healthcare costs, lost productivity and mortality.
Almost half of children in the U.S. miss one or more days of school due
to asthma symptoms.
The American Lung Association asks that you appropriate $34 million
to CDC's National Asthma Control Program (NACP) in fiscal year 2021.
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. Currently, only 24 states
and Puerto Rico receive funding--leaving a nationwide public health
void that can lead to unnecessary asthma-related attacks and healthcare
costs. Increased funding could help develop asthma programs in the
remaining 26 states and the District of Columbia as well as allow for
better surveillance, management and treatment of asthma. Currently, the
CDC does not have comprehensive surveillance data for asthma
nationwide, which makes it difficult to compare statistics across
states, cities and territories. An increase in funding would provide
CDC with resources to conduct better monitoring of asthma and identify
states, regions and communities with the greatest burden of disease.
Additionally, we recognize the importance of robust and sustained
increases for the National Heart, Lung and Blood Institute, the
National Institute of Allergy and Infectious Diseases and the National
Institute for Environmental Health Sciences. With increased support,
these agencies will be able to continue their investments in asthma
research in pursuit of treatments and cures.
chronic disease education and awareness
COPD is the fourth leading cause of death in the U.S. More than 18
million U.S. adults had evidence of impaired lung function, indicating
an under diagnosis of COPD. In 2016, 151,078 people in the U.S. died of
COPD, representing one COPD death every 3.5 minutes. The American Lung
Association also asks the Committee to continue its support of the
National Heart, Lung and Blood Institute working with CDC and other
appropriate agencies to act on its national action plan to address
COPD, which should include public awareness and surveillance
activities. The American Lung Association requests sustained and robust
funding for the National Heart, Lung and Blood Institute as well as
funding for CDC to implement the National COPD Action Plan.
In fiscal year 2020, the House created a new line for chronic
disease education and awareness within CDC's National Center for
Chronic Disease Prevention and Health Promotion. This additional line
will allow CDC to respond to chronic diseases--including COPD--that do
not have stand-alone programs. The American Lung Association is
requesting an initial investment of $5 million in funding for this
program.
impact of climate change on lung health
CDC's Climate and Health Program is the only HHS program devoted to
identifying the risks and developing effective responses to the health
impacts of climate change, including worsening air pollution; diseases
that emerge in new areas; stronger and longer heat waves; and more
frequent and severe droughts, and provides guidance to states in
adaptation. Pilot projects in 16 states and two city health departments
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 $15 million for the Centers for Disease Control and
Prevention's Climate and Health Program.
tuberculosis
TB, an airborne infectious disease, is a leading global infectious
killer, causing 1.3 million deaths annually. In the U.S., every state
reports cases of TB (Tuberculosis) annually, with California, Texas,
Hawaii and Alaska having the highest burdens. TB outbreaks continue to
occur across the country in schools, workplaces and prisons, costing
the U.S. over $460 million annually. Drug-resistant TB poses a
particular challenge to TB control due to the high costs of treatment
and intensive healthcare resources required. Treatment costs for
multidrug-resistant (MDR) TB range from $100,000 to $300,000 per case
and can be over $1 million for treatment of extensively drug resistant
(XDR) TB, which can outstrip state and local public health department
budgets. We request that Congress increase funding for tuberculosis
programs at CDC to $243 million for fiscal year 2021.
conclusion
Lung disease remains a growing problem in the United States and is
leading the nation as the third highest killer. The COVID-19 pandemic
demonstrates the critical need to invest in public health programs so
that they can respond to new and emerging diseases while continuing to
direct resources towards chronic lung disease. The level of support
this Committee approves for lung disease programs should be reflective
of the urgency and magnitude of impact that lung disease has had on
Americans.
The American Lung Association respectively requests that the
Committee supports funding requests and strongly encourages you to
oppose all policy riders on appropriations bills. Policy riders can
weaken key lung health protections, including those in the Affordable
Care Act, the Clean Air Act and the Tobacco Control Act. The Lung
Association is appreciative of your support, and we thank you for your
consideration of our recommendations.
[This statement was submitted by Harold P. Wimmer, National
President and CEO, American Lung Association.]
______
Prepared Statement of the American Massage Therapy Association
The American Massage Therapy Association (AMTA) appreciates the
opportunity to submit a statement to the Senate Subcommittee on Labor,
Health and Human Services, and Education, and Related Agencies in
support of continued robust funding in fiscal year 2021 for the
National Center for Complementary and Integrative Health (NCCIH) within
the National Institutes of Health (NIH).
Established in 1943 and numbering over 94,000 members, AMTA works
to advance the massage therapy profession through the promotion of fair
and consistent licensing of massage therapists in all states, public
education on the benefits of massage therapy, and support of research
to advance knowledge about massage therapy. Massage therapists are
currently licensed in 45 states and the District of Columbia.
We would like to note at the outset some examples of the growing
support and recognition of the health benefits of massage therapy that
have occurred as a direct result of an ever-growing body of research,
after which we will note some examples of areas where continued Federal
support is crucial to help us continue to move forward.
Research has served to increase support for massage therapy by
policymakers at both the Federal and state level, as we learn more
about the health benefits of massage therapy as part of an integrative
approach to patient care. NCCIH notes the value of massage therapy for
a wide variety of health conditions involving both acute and chronic
pain, including low back pain, neck and shoulder pain, symptoms and
side effects associated with certain cancers, fibromyalgia, HIV/AIDS,
among others.
In addition to NIH, massage therapy is supported by the American
College of Physicians and The Joint Commission. Massage is currently
utilized in many nationally renowned hospitals and other institutions,
such as the Mayo Clinic, M.D. Anderson Cancer Center, Duke Integrative
Medicine, the Cleveland Clinic, and Memorial Sloan Kettering Cancer
Center. Finally, CMS includes massage therapy provided by a state
licensed massage therapist as a supplemental benefit for pain
management in Medicare Advantage plans, and massage is also a covered
benefit for our nation's veterans and active duty military personnel
In recent years, policymakers have also recognized the benefits of
massage therapy as a non- pharmacologic alternative to opioid use to
manage pain. Massage therapy is specifically supported in the May 2019
final report of the ``HHS Best Practices Pain Management Task Force
(PMTF)'' and is included in the PMTF ``Pain Management Toolbox'' as an
example of a treatment modality that should be considered as part of an
overall integrative and collaborative care model to ensure optimal
patient outcomes. https://www.hhs.gov/sites/default/files/pmtf-final-
report-2019-05-23.pdf.
As well, massage has been specifically noted in guidelines for non
pharmacologic opioid alternatives issued by the Attorney General of
West Virginia; and, it is among a list of four non-pharmacologic
approaches to pain in a September 18, 2017 letter to American's Health
Insurance Plans, signed by 37 Attorneys General, which urges health
insurance companies to encourage healthcare providers to prioritize
non-opioid pain management options for chronic pain, as follows:
``When patients seek treatment for any of the myriad conditions
that cause chronic pain, doctors should be encouraged to explore and
prescribe effective non-opioid alternatives, ranging from non-opioid
medications (such as NSAIDs) to physical therapy, acupuncture, massage,
and chiropractic care.''
Despite the demonstrated value and efficacy of massage therapy
through research, we know that more needs to be done. Long standing CMS
policy notes the critical importance of research in driving Medicare
coverage and reimbursement for medical procedures, therapies, and
interventions. As such, additional research is needed to help assess
any potential risks and the optimal benefits of massage for particular
demographic groups, including patients as young as infants up to
Medicare beneficiaries, as well as the scope and length of time needed
for massage therapy for specific conditions in order to determine the
optimal amount of therapy needed to achieve both short and long term
results. Last, we need to better understand the underlying mechanisms
of pain, and how and why pain manifests differently for different
patients.
For the last 30 years, the Massage Therapy Foundation (MTF) a
501(c) (3) organization, working with AMTA, has provided over $1
million in research grants studying the science behind therapeutic
massage. This seed money has funded needed research on a wide range of
topics including: the effectiveness of massage therapy in decreasing
muscle atrophy to help individuals recover from muscle disuse, the
benefits of massage for patients with severe heart failure, and the
effect of massage therapy on opioid use in hospital pediatric
populations. Many of these efforts have been specifically designed to
include racially diverse and underserved populations.
While the MTF seed money has helped refine our collective
understanding about massage in many important areas, it is critical
that NCCIH continue to drive forward the most promising science
surrounding massage and other integrative therapies to address both
acute and chronic pain conditions. In these most challenging times, the
need to advance and support evidence-based non-opioid alternatives for
pain management has likely never been more important.
Many experts believe that COVID-19 and opioid misuse will
unfortunately impact and worsen each other, because of the volume of
deferred medical treatments over these last months, combined with
overall rising levels of anxiety and stress throughout our society.
More research is needed to determine the impact of the COVID-19
pandemic on patients currently experiencing chronic pain: early
anecdotal evidence appears to indicate that patients with chronic pain
during the COVID pandemic are beginning to exhibit symptoms similar to
those who are have PTSD.
We know that massage therapy can improve health outcomes and is
also among the most cost-effective therapies that can save healthcare
expenditures in the long run. Massage therapy demonstrably reduces or
mitigates reliance on opioids to address pain. Massage therapy can
serve as a 'portal' to increase patient involvement in other important
health activities, e.g. research shows that patients who obtain massage
are more likely to be able to move better, and thus engage in other
physician-prescribed activities such as corrective exercise programs.
We recognize the challenges that Congress faces in these difficult
times. We encourage the Subcommittee to include a sustained and
meaningful funding level for NIH and NCCIH that supports the role of
integrative therapies to help mitigate opioid abuse and misuse, and
which will enable continued advancements in the use of non
pharmacologic therapies such as massage.
Sincerely.
[This statement was submitted by James Specker, Director, Industry
and
Government Relations, American Massage Therapy Association.]
______
Prepared Statement of the American National Red Cross and
the United Nations Foundation
Chairman Roy Blunt, Ranking Member Patty Murray, and Members of the
Subcommittee, the American Red Cross and the United Nations Foundation
appreciate the opportunity to submit testimony. We are writing today in
support of measles and rubella control activities of the U.S. Centers
for Disease Control and Prevention (CDC).
We request that Congress invest $50 million for CDC's global
measles and rubella elimination efforts for fiscal year 2021. The
American Red Cross and United Nations Foundation recognize the
leadership that Congress has shown in funding CDC in prior years and
urge Congress to protect the CDC's funding necessary for their global
measles control activities for fiscal year 2021 at $50 million, which
is part of the $226 million for the overall Global Immunization
Programs line.
covid-19 environment
The outbreak and eventual pandemic status of the COVID-19 disease
has ushered in a new global reality, particularly related to infectious
disease. Immediate supplemental funding for the emergency response is
critical to turn the tide against the COVID-19 both domestically and
abroad. However, investments in global health programs through the
regular appropriations process are equally vital to ensure that gains
made in reducing maternal and child mortality and morbidity are not
lost, and that the global health infrastructure established through
these investments is preserved and strengthened.
Global estimates indicate that more than 117 million children in 37
countries may miss out on life-saving measles vaccines. Measles
immunization campaigns are delayed in more than 24 countries increasing
the risk of future outbreaks. Among other benefits, this global health
architecture is vital to protecting global health security by detecting
emerging infectious diseases like COVID-19, establishing networks of
laboratories capable of processing diagnostics, and bolstering the
global public health workforce of trained professionals and volunteers
who are often the first responders during health crises.
eliminating measles and rubella: american leadership through cdc
The United States is the leader in the drive to eliminate measles
and rubella globally. Congressional support has enabled CDC to detect,
prevent, detect, respond to vaccine preventable threats including
measles and rubella. With this context in mind, we respectfully provide
the following justification for robust investment in CDC's global
measles and rubella elimination efforts. The global immunization
infrastructure is built off investments initially made by polio
eradication and strengthened by continuing under measles and rubella
elimination. In 2019, there were major outbreaks of measles in every
major region of the world. CDC supported 8 measles outbreak countries
and immunization activities in 6 non-outbreak countries leading to more
than 26 million people vaccinated globally in 2019. In February 2020,
CDC's Center for Global Health activated the Measles Incident
Management System (MIMS) to help accelerate the response to global
measles outbreaks. The Measles & Rubella Initiative, of which CDC is a
core partner, is fully committed to supporting countries to maintain
and restart measles immunization campaigns when it is safe to do so.
CDC's core strength is disease surveillance and data analysis,
which allows countries to better design, plan, and implement measles
elimination activities and outbreak response immunization campaigns.
CDC played a key role in assuring the quality of supplemental campaigns
in Samoa's measles outbreak and helped re-establish case-based, lab-
supported measles surveillance in Samoa as the outbreak ended. In D.R.
Congo, CDC's data analysis helped the country strengthen its measles
program and conduct outbreak response activities. The result has been a
marked decrease in measles cases after vaccination, while the country
also fought outbreaks of Ebola and circulating vaccine-derived
poliovirus. Finally, the CDC Global Measles and Rubella laboratory
provides the backbone of support for training laboratorians, providing
reagents needed for measles testing, and serving as a global reference
lab for measles and rubella.
why measles and rubella?
U.S. leadership has saved the lives of 21.1 million children
between 2000 and 2018 the Measles & Rubella Initiative drove measles
deaths down by 73 percent.
Measles is a highly contagious disease that can cause blindness,
swelling of the brain, and death. Nine out of ten people who are not
immune to measles will contract the disease if they come into contact
with a contagious person, and there are long-term damages to the immune
system for those who contract the virus. The rubella virus is a leading
infectious cause of birth defects in the world despite availability of
an affordable, effective vaccine since 1969. Every day, roughly 384
children still die of measles-related complications. When rubella
occurs early in a pregnancy, it can cause miscarriages, stillbirths, or
a constellation of severe birth defects that can impact vision,
hearing, heart health, overall development.
Since 2000, measles vaccines have been the single greatest
contribution in reducing preventable child deaths globally. We've had
safe and effective vaccines for both rubella and measles for over 50
years, but unfortunately vaccination rates globally have stagnated for
almost a decade.
domestic implications
In 2019 the U.S. reported 1,282 cases of measles in 32 states, the
largest number of cases since 1992. Major outbreaks in New York and
Washington state have been linked to importation of the disease from
Israel and Ukraine by unvaccinated travelers. Controlling measles and
rubella cases in other countries also protects adults and children in
the U.S. In the United States, measles control measures have been
strengthened, and endemic transmission of measles cases has been
eliminated since 2000 and rubella in 2002. However, importations of
measles cases into this country continue to occur each year.
Measles spreads much more quickly than the flu or the Ebola virus.
A single person infected with measles can infect up to 18 other
unvaccinated people, compared with three for Ebola. The 2014-2015 Ebola
outbreak in Guinea, Sierra Leone and Liberia killed a total of 11,310
people. By comparison 2014, measles killed nearly 115,000 people
worldwide, more than 10 times the number of deaths from Ebola. Measles
can also cause severe complications such as pneumonia and encephalitis.
In addition, each year more than 100,000 children are born with
congenital rubella syndrome (CRS). CRS is the leading vaccine
preventable cause of severe birth defects worldwide. These birth
defects can include blindness, deafness, heart defects and mental
retardation. CRS 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.
Responding to a measles outbreak can cost state and local health
departments $100,000 per case to halt disease spread. One in four cases
of measles requires hospitalization, costing up to $15,000 per patient.
For people experiencing complications such as encephalitis, occurring
in one in 1,000 cases, the diagnosis and treatments can cost patients
more than $100,000. In the U.S., caring for a person with congenital
rubella syndrome can cost close to $1 million over the patient's
lifetime.
Eliminating measles and rubella is the right thing to do for
children to meet their full potential. The $58 to $1 return on
investment, coupled with the benefit of protecting American children
against importation of measles into the U.S., demonstrates that
investments in CDC's measles and rubella elimination program is an
excellent use of taxpayer dollars.
the measles & rubella initiative
The Measles & Rubella Initiative (M&RI)--which includes the
American Red Cross, CDC, UNICEF, the United Nations Foundation and WHO,
as well as Gavi, the Vaccine Alliance, helps countries respond to
measles outbreaks, through key interventions like supplementary
vaccination campaigns and emergency response.
M&RI has achieved outstanding results by supporting the vaccination
of nearly three billion individuals in over 90 countries since 2001 and
saving the lives of more than 21.1 million children. In part due to
M&RI, global measles mortality has dropped 73 percent, from an
estimated 545,000 deaths in 2000 to an approximately 114,000 in 2018
(the latest year for which data is available), mostly children under
the age of five. During this same period, measles deaths in Africa fell
by 86 percent.
Despite these gains, we continue to see unfortunate and preventable
deaths and complications due to both measles and rubella. In 2018, the
last year for which data is available, every day approximately 384
children died of measles-related complications. These deaths could have
been prevented with a safe, effective and inexpensive vaccine--
generally, less than $2 USD in lower income countries. 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. The rubella virus is a
leading infectious cause of birth defects in the world despite
availability of an affordable, effective vaccine since 1969.
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. The
provision of multiple child health interventions during a single
campaign is far less expensive than delivering the interventions
separately and has a far greater impact on a child's health than a
single campaign. In addition to measles vaccine, other health
interventions are often distributed during campaigns, including:
administering vitamin A, which is crucial for preventing blindness in
under nourished children; de-worming medicine to reduce malnutrition;
doses of oral polio vaccines; and distributing insecticide treated bed
nets to help prevent malaria and screening for malnutrition.
In addition to the lifesaving benefits of measles vaccines,
immunization makes sound economic sense. A recent study by Johns
Hopkins University revealed the economic benefits of increased
investment in global vaccination programs. The study compared the costs
for vaccinating against 10 disease antigens in 94 low- and middle-
income countries during the period 2011-2020 versus the costs for
estimated treatments of unimmunized individuals during the same period.
Their findings show, on average, every $1 invested in these 10
immunizations produces $44 in savings in healthcare costs, lost wages,
and economic productivity. The return on investment for measles
immunization was particularly high, at $58 saved for every $1 invested.
Securing sufficient funding for measles and rubella-control
activities both globally and nationally is critical. The decrease in
donor funds available at a global level to support measles and rubella
elimination activities makes increased political commitment and country
ownership of the activities critical for achieving and sustaining the
goal of reducing measles mortality by 95 percent. Implementation of
timely measles and rubella campaigns is increasingly dependent upon
countries funding these activities locally, which can be challenging
under such downward financial pressure.
If such challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles death and
disability will occur. Measles is one of the most contagious diseases
know to humans and, due to our highly interconnected world, measles can
be spread globally including to countries that have already eliminated
the disease. The threat of importation of measles was one of the
reasons that the Global Health Security Agenda has selected measles as
an important indicator of whether a country's routine immunization
system is vaccinating all children.
the role of cdc in global measles mortality reduction
Since fiscal year 2001, Congress has provided funding to protect
children and their families from the threat of measles and rubella in
developing countries. Funding for measles and rubella globally has
remained level since fiscal year 2010, at the $50 million level the
American Red Cross and United Nations Foundation recommend. This
support has assisted 90 countries around the world and has contributed
to saving the lives of 21.1 million children.
In 2018, the number of measles cases increased 167 percent globally
compared to 2016. Some regions were harder hit than others: Africa
alone saw an increase of 246 percent. The most affected countries--the
countries with the highest incidence rate of the disease--were
Democratic Republic of the Congo (DRC), Liberia, Madagascar, Somalia
and Ukraine. These five countries accounted for almost half of all
measles cases worldwide.
In 2018 the support of the Measles & Rubella Initiative in 37
countries meant that nearly 350 million children were vaccinated during
45 supplemental immunization activities. For this support, we extend
our deep appreciation to Congress. This support permitted the provision
of technical support to Ministries of Health that specifically
included: (1) planning, monitoring, and evaluating large-scale measles
vaccination campaigns; (2) conducting epidemiological investigations
and laboratory surveillance of measles outbreaks; (3) CDC's Global
Measles Reference Laboratory to serve as the leading worldwide
reference laboratory for measles and rubella. The reference laboratory
provides specimen confirmation and testing as well as training for
country and regional labs; and (4) 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 the WHO, UNICEF, the United Nations Foundation, and
the American Red Cross to strengthen measles and rubella control
programs at global and regional levels and will continue to work with
these and other partners in implementing and strengthening rubella
control programs. There is no doubt that CDC's financial and technical
support--made possible by the funds appropriated by Congress--were
essential in helping achieve the sharp reduction in measles deaths in
just fifteen years.
The American Red Cross and United Nations Foundation would like to
acknowledge the leadership and work provided by CDC and recognize that
CDC brings much more to the table than just financial resources. The
Measles & Rubella Initiative is fortunate to have a partner that
provides critical personnel and technical support for vaccination
campaigns and in response to disease outbreaks. CDC personnel have
routinely demonstrated their ability to effectively coordinate and plan
with international organizations and provide solutions to complex
problems that help critical work get done faster and more efficiently.
Since fiscal year 2010, the CDC's measles and rubella elimination
program has been funded at approximately $50 million. In fiscal year
2021, the American Red Cross and United Nations Foundation respectfully
requests the continuation of level funding of $50 million. This
investment will allow CDC to maintain measles and rubella control and
elimination activities, safeguard the progress made over the last
decade and protect Americans by preventing measles cases and deaths in
the United States. The overall CDC Global Immunization Program, through
which the Measles & Rubella Initiative is funded, has been highly
successful and we support full funding for the overall account. All the
programs funded through the Global Immunization Program line help to
build stronger health systems. We respectfully request $50 million for
CDC measles elimination activities, as part of level funding of $226
million for the entire Global Immunization account in fiscal year 2021.
Thank you for the opportunity to submit testimony, and for your
continued commitment to ending preventable death and disability from
measles and rubella.
[This statement was submitted by Koby J. Langley, Senior Vice
President,
International Services and Service to the Armed Forces, American
National Red Cross, and Peter Yeo, Senior Vice President, United
Nations Foundation.]
______
Prepared Statement of the American Physiological Society
The American Physiological Society (APS) thanks the subcommittee
for its ongoing support of the National Institutes of Health (NIH). The
$3 billion funding boost you provided in fiscal year 2020, following on
the increases you provided between fiscal years 2016 2019, have put the
NIH on a path toward sustainable budget growth. These much-needed
increases will help NIH address critical health problems and emerging
challenges through cutting-edge research. The APS urges you to sustain
this vital effort by providing the NIH budget with at least $44.7
billion in fiscal year 2021.
Breakthroughs in basic and translational research are the
foundation for new drugs and therapies that help patients, fuel our
economy, and provide jobs. Federal investment in research is essential
because the NIH is the primary funding source for discovery research
through its competitive grants program. We look to the private sector
to develop new treatments, but the private sector relies upon this
federally-funded research to identify where to find the next break-
through . This system of public-private partnership has been critical
to U.S. leadership in the biomedical sciences. A recent article in the
Proceedings of the National Academy of Sciences showed that all of the
210 new molecular entities approved by the Food and Drug Administration
between 2010 and 2016 were associated with NIH-supported research.
Importantly, 84 of those new drugs were first-in-class, meaning they
work through a novel mechanism of action or target.\1\
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Federal research dollars also have a significant impact at the
local level: Approximately 83 percent of the NIH budget is awarded to
some 30,000 researchers who work in institutions throughout the
country. They in turn use these grant funds to train students, pay
research and administrative staff, purchase supplies and equipment, and
cover other costs associated with their research. According to an
updated 2020 report, NIH research funding in fiscal year 2019 supported
more than 475,000 jobs nationwide, generating over $81 billion in total
economic activity nationwide.\2\
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The increases Congress has provided NIH over the last 5 years are
helping to correct the devastating effects of sequestration and several
years of budgets that declined in real terms due to inflation. To keep
the agency on the right path forward, we urge you to continue providing
meaningful and predictable annual budget increases that will keep up
with the rate of inflation and take full advantage of the incredible
opportunities for discovery that are before us.
As specified in the 21st Century Cures Act, NIH continues to pursue
a number of important initiatives including the Cancer Moonshot, the
All of Us program (formerly the precision medicine initiative), and the
Brain Research through Advancing Innovative Neurotechnologies (BRAIN)
Initiative. These programs focus resources on specific areas of
scientific opportunity that are ripe for innovation, but it is
important to bear in mind that these projects build upon decades of
basic research. If we are to advance our knowledge and lay the
groundwork for similar opportunities for innovation in the future, NIH
must continue to invest in creative investigator-initiated research.
Over the past several decades, NIH has used a merit-based peer
review system to identify and fund the best research proposals. To
date, NIH has supported the work of 160 Nobel Laureates, including the
2019 winners of the Economic Sciences and Physiology or Medicine
prizes. Thanks to NIH research, Americans can expect to live longer and
healthier lives. NIH also plays an important role in training the next
generation of scientists, supporting trainees through individual
fellowships and institutional grants as they complete their graduate
degrees and seek the post-doctoral training necessary to pursue
successful independent research careers.
Today significant challenges loom before us: the growing threat to
public health posed by the novel coronavirus outbreak requires a
coordinated government response with a robust investment in research to
advance understanding of the virus, the disease it causes and
strategies to treat and prevent infection. NIH acted quickly when
COVID-19 emerged as a problem in China and already has in place efforts
to develop and test a vaccine and medications to treat the disease.\3\
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In addition to the urgent threat posed by the novel coronavirus and
other new and emerging diseases, the opioid epidemic continues to
represent a national public health crisis. An aging population will
bring an increase in diseases that contribute to death and disability
such as heart disease, diabetes, kidney disease, arthritis, and cancer.
If we are to continue to advance new and innovative ways to address
these and other challenges on the horizon-including developing the
workforce necessary to do so-the NIH will need stable and predictable
funding increases in future years.
The APS joins the Federation of American Societies for Experimental
Biology (FASEB) in urging that NIH be provided with no less than $44.7
billion in fiscal year 2021. This represents a $3 billion increase over
fiscal year 2020.
research with nonhuman primates
We would also like to draw to your attention the importance of
encouraging researchers to work with the most appropriate research
models for the diseases they are studying. We appreciate the language
you included in Division A of the Managers' Amendment to the fiscal
year 2020 Labor-HHS-Education appropriations conference report noting
the importance of research with nonhuman primates while also urging NIH
to seek alternatives that can reduce and replace them. Some comments on
this are in order.
Once researchers who are studying nonhuman primates have answered
certain questions about a disease or biological process, they can look
for alternative research models. These alternatives need to provide an
accurate representation of what is being studied but require either
fewer animals, a different species, or a non-animal alternative. As a
matter of both law and ethics, scientists must do their best to ensure
that research minimizes the pain or distress animals experience.
Reducing pain and distress often also has the added benefit of reducing
the numbers of animals needed to get scientifically valid results. The
number of nonhuman primates needed may also decrease when parts of the
question can be answered by studying a different animal species or
using technologies such as computer simulations or organs-on-a-chip.
The biggest challenge in biomedical research is that there are
still so many unknowns. When researchers try to understand a complex
biological process or a new pathogen such as the coronavirus
responsible for COVID-19, their priority is to find the best research
model as quickly as possible. The optimal choice is an animal whose
anatomy, physiology, immune system, etc. closely resembles that of
humans. For infectious diseases, complex neurological disorders and a
host of other research challenges mandated by Congress, this often
means a nonhuman primate species such as macaques, squirrel monkeys or
marmosets. Recognizing this, NIH has stated that more nonhuman primates
will be needed in the coming years.
Nonhuman primates are expected to play an important role in finding
treatments and cures for COVID-19 because of how closely their immune
systems resemble that of humans. In order to develop a vaccine,
scientists must first determine how the virus invades cells and then
find ways to prevent that from happening. While a strain of genetically
modified mice developed during the 2003 outbreak of Severe Acute
Respiratory Syndrome (SARS) may be useful, before such a vaccine can be
given to people, it must be tested in appropriate animal models to
assess its safety and effectiveness. In addition, the only treatment we
can currently offer to people who have COVID-19 is supportive care to
help their bodies fight the disease. Therefore, researchers also need
to find animal species that develop clinical symptoms of disease.
Nonhuman primates are expected to feature prominently in this research.
The APS is a nonprofit devoted to fostering education, scientific
research and dissemination of information in the physiological
sciences. The Society was founded in 1887 with 28 members and now has
over 8,000 members, most of whom hold doctoral degrees in physiology,
medicine and/or other health professions.
[This statement was submitted by Dennis Brown, Ph.D., Chief Science
Officer, American Physiological Society.]
______
Prepared Statement of the American Psychological Association
APA is the largest scientific and professional organization
representing psychology in the U.S., numbering over 121,000
researchers, educators, clinicians, consultants and students. Many
programs in the Labor-HHS-Education Appropriations bill strengthen the
public health workforce and support research, education and access to
needed services for the diverse populations served by psychologists.
Given the challenges of responding to the COVID-19 pandemic, it is
clear that the U.S. healthcare system and public health infrastructure,
from bench to bedside, to community, must be strengthened, access to
health and mental health services enhanced, and support for data-
informed approaches to education and public welfare at all levels be
made priorities.
Research Funding: To increase knowledge to advance health and
education, APA supports investments in the Institute of Education
Sciences (IES), National Institutes of Health (NIH), and Centers for
Disease Control and Prevention (CDC).
IES.--APA supports $670 million for IES, an independent and
nonpartisan statistics, research, and evaluation division of the
Department of Education. This would restore the nearly 10 percent loss
in research funding power since fiscal year 2011. IES supports and
disseminates rigorous scientific evidence on which to base education
policy and practice and conducts rigorous analysis of educational
programs and initiatives, as well as innovative research into, many
aspects of teaching and learning.
NIH (NIDA): Opioid Initiative.--Approximately 174 people die each
day in the U.S. from drug overdose (over 100 from opioids), making it
one of the most common causes of non-disease-related deaths for
adolescents and young adults. To combat this crisis, APA supports at
least $250 million for research related to preventing and treating
opioid misuse and addiction. With additional funding for NIDA targeted
at addressing this epidemic, the following areas should be among those
targeted: studies to create a comprehensive care model in communities
to prevent opioid misuse, expand treatment capacity, enhance access to
overdose reversal medications, and enhance prescriber practice; and
interventions in justice system settings to expand the uptake of
medication-assisted treatment and methods such as non-pharmacological
pain management to scale up these interventions for population-based
impact.
NIH (NIDA): Healthy Brain and Child Development Study.--It is not
currently known how infant and childhood development is affected by
early exposure to opioids and COVID-19. The HBCD Study will establish a
large cohort of pregnant women from regions of the country
significantly affected by the opioid crisis and follow them and their
children for at least 10 years. This research will help understand
normative childhood brain development as well as the long-term impact
of pre- and postnatal opioid and other drug and adverse environmental
exposures including COVID-19. This knowledge will be critical to help
predict and prevent some of the known impacts of pre- and postnatal
exposure to certain drugs or adverse environments, including risk and
resilience for future substance use, mental disorders, and other
behavioral and developmental problems as well as the unknown effects of
COVID-19 exposure. APA supports the $33.5 million requested to initiate
Phase II of HBCD.
NIH Office of the Director: Office of Behavioral and Social
Sciences Research (OBSSR).--OBSSR coordinates and promotes basic,
clinical, and translational research in the behavioral and social
sciences to support the NIH mission. Partnering with other Institutes
and Centers, OBSSR co-funds highly rated grants that the ICs cannot
fund alone. The Office also coordinates NIH's new, high-priority
program on gun violence prevention research. APA asks the Committee to
direct NIH to provide an increase of $22.5 million to OBSSR. As seen in
previous pandemics including HIV, in the absence of a vaccine the only
data-informed path to prevention is via people's behavior. Behavioral
and social science research findings have informed our current response
to COVID-19, but there must be additional research in the pipeline to
improve targeted response to future disasters and pandemics,
particularly for underserved and minority populations who are at
greater risk of morbidity and mortality. In the short term, a National
Academies study will clarify the path ahead for NIH-supported research.
Infrastructure improvements in the longer term will make possible
additional tools to fight pandemics and other emergencies, and faster
and more targeted responses. At least $1 million of this increase
should go to OBSSR's base budget, given that the OBSSR budget has
remained relatively flat during this recent period of growth to the
overall NIH budget.
NIH: OBSSR: National Academies Study.--Pandemics represent global
health crises, which require large-scale behavior change to optimize
pandemic response, and pose significant psychological, economic, and
societal burdens that can be prepared for and ameliorated with an
investment in scientific research. APA requests $1.5 million for the
NIH Office of Behavioral and Social Sciences Research to enter into an
agreement with the National Academies of Sciences, Engineering and
Medicine to provide an evidence-based analysis of behavioral and social
science research relevant to different dimensions of pandemic response.
The analysis should include a review of research related to navigating
threats, social and cultural factors including the heavier burdens on
poor and marginalized populations, science communication, moral
decisionmaking, governance and coping with stress and uncertainty. The
Committee recommends that the results of the interdisciplinary evidence
review be used to make recommendations for actions that can be
immediately applied to optimize response to the current COVID-19
pandemic, and also identify important gaps that would help guide future
research infrastructure development and specific research projects
aimed at preventing and mitigating future pandemics.
NIH: OBSSR: Infrastructure Improvements.--APA asks for $20 million
so that OBSSR may coordinate among partner NIH institutes and centers,
including NIMH and NIMHD, for critical scientific infrastructure
projects to advance collaboration and develop tools for the behavioral
and social sciences which may include:
--Creating a social science and health data hub/cohort to serve as a
data enclave with APIs [application programming interface] to
various data sets to facilitate data linkage.
--Establishing one or more behavioral and social sciences research
(BSSR) clinical trials networks to allow trials of behavioral
interventions to be established quickly, and with more diverse
populations.
NIH and CDC: Gun Violence Prevention Research.--In fiscal year
2021, APA supports $50 million in funding shared evenly between CDC and
NIH to conduct research into firearm morbidity and mortality
prevention.
Workforce and Access to Healthcare: To strengthen the public health
workforce and improve access to healthcare, APA supports enhanced
budgets for targeted programs in the Health Resources and Services
Administration (HRSA) and the Substance Abuse and Mental Health
Services Administration (SAMHSA). The nation's mental and behavioral
health workforce must be expanded to respond adequately to the opioid
epidemic and healthcare needs of our increasingly diverse and aging
population. Psychologists, as researchers and practitioners, are
integral to a healthcare system in which more than half of U.S.
mortality is linked to behavior, and where mental and behavioral
disorders are a significant health concern.
HRSA: GPE, BHWET and Geriatric Workforce Grants: HRSA projects a
shortage of 14,300 psychologists by 2030 to address the growing needs
for behavioral interventions, which will be exacerbated by a surge in
COVID-19 related mental and behavioral health problems-including
increases in anxiety, depression, and post-traumatic stress disorder.
APA recommends $23 million for the interprofessional Graduate
Psychology Education Program, to increase the number of health service
psychologists trained to provide integrated services to high-need,
underserved populations in rural and urban communities. In addition,
APA recommends $120 million for the Behavioral Health Workforce
Education and Training programs, including $69 million for the
Behavioral Health Workforce Education and Training Grant Program
(BHWET). To expand access to non-pharmacological pain management to
improve pain care and reduce the incidence of opioid use disorders, APA
recommends $10 million for a program for education and training in pain
care, as authorized by the SUPPORT Act under Section 759 of the Public
Health Service Act (42 U.S.C. 294i). As the number of Americans over
age 65 will likely double between 2000 and 2030, APA further recommends
$51 million for the Geriatric Workforce Enhancement Program and
Geriatric Academic Career Awards to provide training for health
professionals, faculty, family caregivers, and consumers in the unique
needs of older adults.
SAMHSA (Minority Fellowship Program).--Given the disproportionate
impact of COVID-19 on minority populations, APA requests a $2.5 million
increase to $16.7 million for the MFP. This increase helps support a
diverse behavioral health workforce addressing substance use disorders
and mental health issues impacting minority and underserved
populations.
To fill key gaps in affordability and access to education services:
Given the heavy burden of student loan debt, APA supports added
investments in grant programs for graduate study, including at least
$35 million for the Graduate Assistance in Areas of National Need
(GAANN) Program, where psychology has been recognized as a national
need area. Additionally, APA urges the committee to direct the
Department of Education to fully implement the nearly $800 million
appropriated since 2018 for the Temporary Expanded Public Service Loan
Forgiveness (TEPSLF) program. Only 1 percent of TEPSLF applications
have been approved as of May 2019. Until the Department addresses
concerns with the implementation and management of the PSLF, the TEPSLF
program provides needed resources to support borrowers who have
received incorrect information that has consequently jeopardized their
eligibility for the program. To ensure that our students receive a
well-rounded education, and access to mental health counseling and
programs that foster safe and healthy schools, APA requests $1.6
billion for the Student Support and Academic Enrichment (SSAE) block
grant under Title IV-A. APA requests level funding for CRD data
collection in the Department of Education's Office of Civil Rights for
collecting data on exclusionary discipline by disability status and
seclusion/restraint data.
To make additional improvements in access to healthcare and the
social safety net: APA urges $10 million for the Lifespan Respite Care
Program under the Administration for Community Living. The Program
increases the availability of quality respite for caregivers,
regardless of age or disability.
Indian Health Service.-- Increase funding for medical equipment by
$33,706,000. Many IHS and tribal healthcare facilities are using
outdated equipment. Updating equipment will allow for better mental
health treatment.
SAMHSA: Suicide Prevention.--APA also supports maintaining current
funding for the Garrett Lee Smith Memorial Act (GLSMA) programs, which
increase young adults' access to prevention, education, and outreach
services to reduce suicide risk in states, tribes, and institutions of
higher education: $35.4 million for the State and Tribal Youth Suicide
Prevention Program; $6.5 million for the Campus Mental and Behavioral
Health Program; and $8 million for the Suicide Prevention Resource
Center, an increase of $1 million over the enacted level.
APA supports the appropriation of an additional $35 million, for a
total of $757.5 million, for the Community Mental Health Services Block
Grant to fund a 5 percent set aside for all states to fund crisis care
services. APA supports $1.7 billion for the Social Services Block
Grant, to provide vital social services (e.g. protective services,
special services to people with disabilities). To prevent child abuse
and neglect, strengthen families, and reduce the need for foster care
placement, APA supports increased funding for the Child Abuse
Prevention and Treatment Act (CAPTA): $270 million for Title I and $270
million for Title II, as well as $60 million to support safe care plans
for infants with prenatal substance exposure and families impacted by
substance use disorders. APA also requests $19 billion for the Child
Care Development Fund and $11.87 billion for Head Start to expand
access to safe, affordable childcare and learning opportunities for
working families. At the CDC, APA supports $4 million for Adverse
Childhood Experiences Prevention and $10 million for Child Sexual Abuse
Prevention.
HIV Programs: CDC Division of Adolescent and School Health
(DASH).--APA urges the Committee to fund the CDC DASH at $100 million
in fiscal year 2021, an increase of $66.9 million over fiscal year
2020. APA also supports SAMHSA's Minority AIDS Initiative, providing
for evidence-based, culturally appropriate, HIV/AIDS-related mental
health and substance use disorder treatment services among vulnerable
populations. We recommend $160 million to expand efforts to prevent
domestic HIV transmission and to increase treatment options for those
living with co-morbid conditions.
Medicare Cuts.--APA is deeply concerned about the Centers for
Medicare and Medicaid Services' (CMS) final Medicare Physician Fee
Schedule rule for CY 2020, which included broad changes to incentivize
the use of evaluation and management services (E/M) through increased
payments. APA is deeply concerned about the significant payment cuts
psychologists will receive as a result of the current requirement for
budget neutrality. Psychologists are the core mental and behavioral
health provider in Medicare, and beneficiaries will face significant
access issues in the coming months. This issue is exacerbated by the
COVID-19 crisis, as psychologists struggle to find ways to treat their
patients through remote access and soon may be determining how to keep
their practices viable financially. Therefore, APA urges Congress to
waive the budget neutrality requirements stipulated in Section
1848(c)(2) of the Social Security Act for the finalized E/M code
proposal for a period of no less than 5 years. This much-needed action
by Congress would provide a critical reprieve for a broad scope of
healthcare providers facing substantial payment reductions in the
coming months.
[This statement was submitted by Katherine B. McGuire, Chief
Advocacy Officer, American Psychological Association.]
______
Prepared Statement of the American Public Health Association
APHA is a diverse community of public health professionals that
champions the health of all people and communities. We are pleased to
submit our requests for fiscal year 2021 funding for the Centers for
Disease Control and Prevention and the Health Resources and Services
Administration. We urge a funding level of at least $8.3 billion for
CDC's programs and least $8.8 billion for the Health Resources and
Services Administration. These requests do not reflect any additional
emergency resources that may be needed to address the immediate and
ongoing efforts to combat the COVID-19 pandemic. CDC and HRSA programs
are especially critical as the U.S. grapples with the COVID-19
pandemic. Adequate funding for programs that promote public health and
prevention, support surveillance of infectious disease and bolster
America's public health workforce will be critical in facing the short-
term and long-term health impacts of COVID-19.
Centers for Disease Control and Prevention: 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. We believe
Congress should support CDC as an agency, not just its individual
programs. Although we believe an even more significant increase is
truly needed to address the nation's current health challenges, at a
minimum, we urge a funding level of at least $8.3 billion for CDC's
programs in fiscal year 2021. We are grateful for the important
increases provided for CDC programs in fiscal year 2020 and urge
Congress to build upon these investments to strengthen all of CDC's
programs many of which remain woefully underfunded. We also urge your
continued support for the Prevention and Public Health Fund which
currently makes up approximately 11 percent of CDC's budget.
CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the COVID-
19 in the U.S., to monitoring and investigating disease outbreaks in
the U.S., to pandemic flu preparedness, to educating the public about
the value and importance of vaccines, 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. Programs like CDC's
Public Health Emergency Preparedness Cooperative Agreement enables
states, cities and territories respond to public health emergencies.
CDC oversees immunization programs for children, adolescents and
adults. Childhood immunizations provide one of the best returns on
investment of any public health program. For every dollar spent on
childhood vaccines to prevent thirteen diseases, more than $10 is saved
in direct and indirect costs. Over the past 20 years, CDC estimates
childhood immunizations have prevented 732,000 deaths and 322 million
illnesses. Congress must provide funding to support efforts to
strengthen emergency preparedness activities and to stop current
vaccine-preventable disease outbreaks and prevent more from occurring.
We thank Congress for providing CDC with dedicated funding for
firearm morbidity and mortality prevention research in fiscal year 2020
and we strongly urge you to maintain and increase this funding in
fiscal year 2021 to $50 million for CDC and NIH. This funding will
allow CDC to conduct research into important issues including the best
ways to prevent unintended firearm injuries and fatalities among women
and children; the most effective methods to prevent firearm-related
suicides; and the measures that can best prevent the next shooting at a
school or public place.
CDC's National Center for Environmental Health works to control
asthma, protect against threats associated with natural disasters and
climate change, reduce and monitor exposure to lead and other
environmental health hazards and ensure access to safe and clean water.
We urge you to provide at least $243 million for NCEH in fiscal year
2021, including a $5 million increase for CDC's Climate and Health
program. Climate change is happening now and is threating our health in
many ways including through the increased spread of vector-borne
diseases, degraded air quality from ozone pollution and wildfire smoke,
hotter temperatures and more extreme weather events. Increased funding
will allow CDC to fund an additional 14 health departments to help them
prepare for and respond to the health impacts of climate change in
their communities. CDC will also be able to begin to evaluate the work
of existing grantees to identify and share best practices with
communities nationwide.
Programs under the National Center for Chronic Disease Prevention
and Health Promotion address heart disease, stroke, cancer, diabetes
and tobacco use that are the leading causes of death and disability in
the U.S. and are also among the most costly to our health system. CDC
provides funding for state programs to prevent disease, conduct
surveillance to collect data on disease prevalence, monitor
intervention efforts and translate scientific findings into public
health practice in our communities. We once again strongly oppose the
administration's proposal to block grant and cut funding for many of
these programs.
Health Resources and Services Administration: HRSA is the primary
Federal agency dedicated to improving health outcomes and achieving
health equity. HRSA's 90-plus programs and more than 3,000 grantees
support tens of millions of geographically isolated, economically or
medically vulnerable people, in every U.S. state and territory, to
achieve improved health outcomes by increasing access to quality
healthcare and services; fostering a healthcare workforce able to
address current and emerging needs; enhance population health and
address health disparities through community partnerships; and promote
transparency and accountability within the healthcare system.
We are grateful for the increases provided for HRSA programs in
fiscal year 2020, however HRSA's discretionary budget authority remains
over 20 percent below the fiscal year 2010 level (adjusted for
inflation). We recommend Congress build upon the important increases
they provided for HRSA programs in fiscal year 2020 and provide at
least $8.8 billion for HRSA's total discretionary budget authority in
fiscal year 2021.
HRSA programs and grantees are providing innovative and successful
solutions to some of the nation's greatest healthcare challenges
including the rise in maternal mortality, the severe shortage of health
professionals, the high cost of healthcare and behavioral health issues
related to substance use disorders--including opioid misuse. Additional
funding will allow HRSA build upon these successes and pave the way for
new achievements by supporting critical HRSA programs, including:
--Primary Health Care that supports over 11,000 health center sites
in medically underserved communities across the U.S., providing
access to high-quality preventive and primary care to more than
28 million people including over 8.4 million children and
350,000 veterans.
--Health Workforce supports the health workforce across the entire
training continuum and offers scholarship and loan repayment
programs to ensure a well-prepared, well-distributed and
diverse workforce that is ready to meet the current and
evolving healthcare needs of the nation.
--Maternal and Child Health supports initiatives that promote optimal
health, reduce infant mortality, minimize disparities, prevent
chronic conditions and improve access to quality healthcare for
vulnerable women, infants and children; and serves more than 76
million people through the MCH block grant.
--HIV/AIDS delivers a comprehensive and robust system of care to more
than 550,000 individuals impacted by HIV/AIDS, improving health
outcomes for people with HIV and reducing the chance of others
becoming infected, and provides training for health
professionals treating people with HIV/AIDS. HRSA's Ryan White
HIV/AIDS Program effectively engages clients in comprehensive
care and treatment, including increasing access to HIV
medication, which has resulted in 87 percent of clients
achieving viral suppression, compared to just 59 percent of all
people living with HIV nationwide.
--Family Planning Title X services ensure access to comprehensive
family planning and related preventive health services to
nearly 4 million people, thereby reducing unintended pregnancy
rates, limiting transmission of sexually transmitted infections
and increasing early detection of breast and cervical cancer.
--Rural Health supports community and state-based solutions to
improve efficiencies in delivering rural health services and
expand access, including supporting activities that aim to
increase access to opioid treatment in rural areas, leverage
the use of health information technology and telehealth and
advise on rural health policy issues.
In closing, we emphasize that the public health system requires
stronger financial investments at every stage. This funding makes up
less than 1 percent of Federal spending. Cuts to public health and
prevention programs will not balance our budget and will only lead to
increased costs to our healthcare system. Investing in CDC and HRSA
programs will enable us to meet the mounting health challenges we
currently face and to become a healthier 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) is one of the largest
life science societies, composed of more than 30,000 scientists and
health professionals. Our mission is to promote and advance the
microbial sciences. ASM respectfully requests that Congress provide at
least $44.7 billion for the National Institutes of Health (NIH) and at
least $8.3 billion for the Centers for Disease Control and Prevention
(CDC) in fiscal year 2021. Within the CDC budget, we call on Congress
to provide $57 million for the Advanced Molecular Detection (AMD)
program in the National Center for Emerging and Zoonotic Infectious
Diseases. These requests do not take into account any additional
emergency supplemental funding that will be necessary to support these
agencies in the wake of the COVID-19 pandemic.
support in unprecedented times
ASM is grateful for the recent bipartisan agreements that have led
to significant supplemental appropriations for CDC, NIH and other key
health and preparedness programs as our nation responds to the ongoing
COVID-19 pandemic. It is no longer a question of if, but when, the next
pandemic will hit. Knowing that this is not our first pandemic, nor
will it be our last, Congress should prioritize continued long-term
investments in public health and in research at CDC and NIH. Congress
should also encourage collaboration with other Federal science agencies
to build on the wealth of existing knowledge and to leverage existing
supercomputing and laboratory resources as well as capacity for
epidemiological modeling and surveillance.
In addition to focusing on the urgent and more immediate needs of
our public health agencies and infrastructure, ASM remains deeply
concerned about the serious consequences of the current disruption to
the broader research enterprise. As is the case in the overall economy,
researchers, students, post-docs and lab personnel have had their work
cut short. This has implications not only for the workforce--where
hiring has been disrupted and employees furloughed--but also on the
process of scientific discovery. Experiments will need to be restarted,
animal colonies repopulated, and fieldwork rescheduled for an
indeterminate later time. The longer the slowdown continues, the more
serious the consequences will be, especially on the people who comprise
the research workforce, including graduate students, postdocs,
principal investigators, laboratory and technical support staff.
While our nation's research capacity has demonstrated it can absorb
shocks, the scale of this one is still growing and unprecedented in
duration and impact. As such, it is vital that the Federal government
take measures to increase support for the research enterprise. The need
for basic research continues, and providing robust, sustained and
predictable funding for the NIH is the only way we will seize the
unparalleled scientific opportunities in microbial research that lie
before us, and the only way we will be equipped to address the research
and development demands that novel infectious disease pandemics such as
COVID-19 place on our scientific enterprise.
Maintaining a Strong Investment in Microbial Science Through the NIH
We thank the United States Congress for its longstanding,
bipartisan support for the NIH and for its commitment to basic,
translational, and clinical microbial research funded through multiple
Institutes and Centers, particularly through the National Institute of
Allergy and Infectious Diseases (NIAID). We especially thank Senate
Appropriations Subcommittee on Labor, Health and Human Services (HHS),
Education Chairman Roy Blunt and Ranking Member Patty Murray for their
unwavering support for the NIH and leadership over the past 5 years,
during which they and their House counterparts have worked in a
bipartisan manner to place the NIH budget back on path of meaningful
growth above inflation. By increasing funding by more than 33 percent
since fiscal year 2015, NIH has advanced discovery toward promising
therapies and diagnostics, reenergized existing and aspiring scientists
nationwide, and restored hope for patients and their families.
NIH Funding has Transformed the Microbial Sciences
We live in an extraordinary time of scientific opportunity in the
field of microbial research, and NIH funding plays a unique and
indispensable role in supporting the discovery and application of new
knowledge to prevent, detect, and treat infectious diseases. Amidst a
global pandemic, steady investment over several years in NIH allowed
NIAID to rapidly scale up and initiate clinical trials, now underway at
record speed, to develop a vaccine for the novel coronavirus (SARS-COV-
2). The investment over time, coupled with emergency supplemental
funding is funding also is facilitating the commencement of clinical
trials to test antiviral drugs like Remdesivir and innovative
approaches like human convalescent plasma (HCP) therapy on those who
are infected with the virus in the hope that therapeutic options can be
made available as soon as possible.
In non-pandemic times, investments in microbial research at NIH
have led to great strides in protecting and improving human health. In
addition to preparing today's scientists to combat our current
pandemic, past NIH projects have led to the following advances:
--A young person diagnosed with Human Immunodeficiency Virus (HIV)
today who receives treatment will have a near normal life
expectancy. The AIDS death rate has dropped 80 percent from its
peak in 1995.
--Routine childhood vaccinations prevent millions of cases of
illness. For children vaccinated in 2009, an estimated $82
billion in costs will be saved and 20 million cases, including
42,000 early deaths, will be prevented.
--The first preventive vaccine and experimental treatments were
recently deployed in Africa against the Ebola virus, marking a
significant public health achievement. The Ebola virus, which
ravaged West Africa in 2013 and continues to cost lives in the
Democratic Republic of the Congo, has killed more than 10,000
people and severely strained regional socioeconomic stability.
--The Human Microbiome Program (HMP) has transformed our
understanding of the human/microbiome ecosystem by mapping the
normal bacteria that live in and on the healthy human body.
Microbiome research at NIH now extends well beyond the HMP to
include research at several NIH Institutes, further revealing
how microbial community makeup can vary from person-to-person
and may correlate with health and disease. With a better
understanding of what a ``normal'' human microbiome looks like,
researchers are now exploring how changes in the microbiome are
associated with, or even cause, illnesses.
Looking Ahead: Continued Progress Requires a Sustained Commitment to
Funding
Even in the face of the promise and progress highlighted above, we
have seen the human and economic devastation that results when we are
confronted with a pandemic caused by an emerging infectious disease
such as SARS-COV-2. Novel diseases present incalculable health,
economic and social challenges as we have witnessed over the past few
months, but they also present opportunities for innovation and new
developments. Seasonal flu continues to cost the
U.S. billions annually in direct medical costs and lost
productivity due to illness, not to mention thousands of Americans lose
their lives to flu each year. Through sustained funding to NIAID,
scientists continue the quest for a universal flu vaccine, which will
dramatically reduce the toll the virus takes on the U.S. each year, as
well as reduce the chances of pandemic flu. In the past year, the first
in human trials of a universal flu vaccine candidate were launched at
the NIH Clinical Center. In light of the continued threat posed by
COVID-19, it is imperative that we continue our efforts to combat known
seasonal threats to reduce the toll that the two pathogens circulating
together could take on our population.
CDC's Indispensable Role in Preventing and Controlling Infectious
Disease
The programs and activities supported by CDC are essential to
protect the health of the American people. ASM appreciates the
important increases that Congress provided for many CDC programs in
fiscal year 2020. Today's challenges reinforce the need for a strong
CDC and regular investments in our public health infrastructure. We
urge Congress to recommit to robust support for the CDC in fiscal year
2021, including funding for the Infectious Disease Rapid Response
Reserve Fund and the Prevention and Public Health Fund. CDC aids in
surveillance, detection and prevention of global and domestic outbreaks
from novel Coronavirus, to Ebola, to the measles, to seasonal flu. CDC
is the nation's expert resource and response center, coordinating
communications and action, and serving as the laboratory reference
center. We are seeing in real time during that COVID-19 pandemic how
states, communities, and international partners rely on CDC for
accurate information, direction, and resources to respond in a crisis.
Three areas that ASM would like to highlight under CDC are: (1)
advanced molecular detection technology; (2) antimicrobial resistance;
and, (3) laboratory capacity.
--The Advanced Molecular Detection (AMD) program brings cutting edge
genomic sequencing technology to the front lines of public
health by harnessing the power of next- generation sequencing
and high performance computing with bioinformatics and
epidemiology expertise to study pathogens. Due to increasing
costs and demands but continued flat funding, the program's
ability to support its mission is threatened. With additional
funds, the AMD program can promote greater innovation, expand
workforce development, and enter into productive partnerships
with academic research institutions and state/local public
health agencies. ASM requests $57 million in for AMD fiscal
year 2021, in order for this program to fully achieve its
potential.
--Multiple programs support antimicrobial resistance, which is one of
the most daunting health challenges we face today. ASM requests
funding for the Antibiotic Resistance Solutions Initiative at
$200 million, the National Healthcare Safety Network at $25
million, and the Division of Global Health Protection at $275
million will ensure that we have the resources across multiple
programs to address this urgent public health challenge.
--Support for laboratory capacity is paramount, and the Emerging and
Zoonotic Infectious Disease labs are the world's reference
labs. But maintaining labs costs more each year, from quality
and safety initiatives, to the cost of shipments and supplies,
to recruiting and retaining specialized and highly trained
staff. ASM applauds the inclusion of additional funding of to
$10 million in the President's fiscal year 2021 request for lab
capacity at the CDC, we urge you to consider this additional
funding as a floor for additional resources to this area.
ASM looks forward to working with you to ensure that researchers
and public health professionals have the resources they need to apply
fundamental microbial science research to meet 21st Century challenges
in public health promotion, the prevention, detection and treatment of
infectious diseases, and the prevention of future outbreaks.
[This statement was submitted by Allen Segal, Public Policy and
Advocacy
Director, American Society for Microbiology.]
______
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 2021 appropriations. The American Society for Nutrition (ASN)
respectfully requests at least $44.7 billion dollars for the National
Institutes of Health (NIH) and $189 million dollars for the Centers for
Disease Control and Prevention/National Center for Health Statistics
(CDC/NCHS) in fiscal year 2021. ASN is dedicated to bringing together
the world's top researchers to advance our knowledge and application of
nutrition, and has more than 7,000 members working throughout academia,
clinical practice, government, and industry.
national institutes of health
The NIH is the nation's premier sponsor of biomedical research and
is the agency responsible for conducting and supporting 86 percent of
federally funded basic and clinical nutrition research. Although
nutrition and obesity research make up less than 8 percent of the NIH
budget, some of the most promising nutrition-related research
discoveries have been made possible by NIH support. NIH nutrition-
related discoveries have impacted the way clinicians prevent and treat
heart disease, cancer, diabetes and other chronic diseases. For
example, from 2001 to 2011, the U.S. death rate from heart disease has
fallen by about 39 percent and from stroke by about 35 percent.\1\
However, the burden and risk factors remain high. With additional
support for NIH, additional breakthroughs and discoveries to improve
the health of all Americans will be made possible.
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\1\ https://www.heart.org/idc/groups/ahamah-public/@wcm/@sop/@smd/
documents/downloadable/ucm_470704.pdf.
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Investment in biomedical research generates new knowledge, improved
health, and leads to innovation and long-term economic growth. From
fiscal year 2003 to 2015, the NIH lost 22 percent of its capacity to
fund research due to budget cuts, sequestration, and inflationary
losses. Such economic stagnation is disruptive to training, careers,
long-range projects and ultimately to progress. Since fiscal year 2016,
Congress has begun to restore the NIH budget but there is much work to
be done; in real dollars, the NIH budget is still 16 percent below the
fiscal year 2003 level. ASN recommends at least $44.7 billion dollars
for NIH in fiscal year 2021 to support NIH nutrition-related research
that will lead to important disease prevention and cures. A budget of
$44.7 billion will allow NIH to continue its commitment to the Next
Generation Researchers Initiative; provide $404 million already
authorized through the 21st Century Cures Act for key research
initiatives; and provide a 3 percent budget increase across NIH
Institutes and Centers, allowing them to bolster research areas in need
of resources. NIH needs sustainable and predictable budget growth to
fulfill the full potential of biomedical research, including nutrition
research, that is aimed at improving the health and wellbeing of all
Americans, as well as global populations.
centers for disease control and prevention/national center
for health statistics
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 2021 funding
level of $189 million dollars for NCHS to help ensure uninterrupted
collection of vital health and nutrition statistics and help cover the
costs needed for technology and information security maintenance and
upgrades that are necessary to replace aging survey infrastructure. The
U.S. is a leader in this area and a decade of flat funding has taken a
significant toll on NCHS's ability to keep pace.
The NCHS provides critical data on all aspects of our healthcare
system, and it is responsible for monitoring the nation's health and
nutrition status through surveys such as the National Health and
Nutrition Examination Survey (NHANES), that serve as a gold standard
for data collection around the world. Nutrition and health data,
largely collected through NHANES, are essential for tracking the
nutrition, health and well-being of the American population, and are
especially important for observing nutritional and health trends in our
nation's children. This is an invaluable source of data that has been
and can continue to be used to address major health issues as they
arise.
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, iron, folate, iodine, vitamin
D, and other micronutrients which are consumed in inadequate amounts by
many subsets of our population. Data such as these are critical to
guide policy development in health and nutrition, including food
safety, food labeling, food assistance, military rations and dietary
guidance. For example, NHANES data are used to determine funding levels
for programs such as the Supplemental Nutrition Assistance Program
(SNAP) and the Women, Infants, and Children (WIC) clinics, which
provide nourishment to low-income women and children.
Thank you for the opportunity to submit testimony regarding fiscal
year 2021 appropriations for the National Institutes of Health and the
CDC/National Center for Health Statistics. Please contact John E.
Courtney, Ph.D., ASN Executive Officer, at 9211 Corporate Boulevard,
Suite 300, Rockville, Maryland 20850, [email protected], if ASN
may provide further assistance.
Sincerely.
[This statement was submitted by Richard Mattes, M.P.H., Ph.D., RD
2019-2020, President, American Society for Nutrition.]
______
Prepared Statement of the American Society of Hematology
The American Society of Hematology (ASH) represents more than
18,000 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 disease, thalassemia, and hemophilia.
Hematologists have been pioneers in the fields of bone marrow
transplantation, stem cell biology and regenerative medicine, and gene
and immunotherapy.
fiscal year 2021 request: national institutes of health
American biomedical research has led to new medical treatments,
saved innumerable lives, reduced human suffering, and spawned entire
new industries, none of which would have been possible without support
from the National Institutes of Health (NIH). Hematology research,
funded by 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), the National Institute on Aging (NIA), and the National
Institute of Allergy and Infectious Diseases (NIAID), has been an
important component of this investment in the nation's health.
With the advances gained through an increasingly sophisticated
understanding of how the blood system functions, hematologists have
changed the face of medicine through their dedication to improving the
lives of patients. NIH-funded research has led to tremendous advances
in treatments for children and adults with blood cancers and other
hematologic diseases and disorders. Hematology advances also help
patients with other types of cancers, heart disease, and stroke. Basic
research on blood has aided physicians who treat patients with heart
disease, strokes, end-stage renal disease, cancer, and AIDS. Additional
Federal investment in research will form the basis for continued
scientific progress in hematology and other fields of medicine for
years to come.
ASH thanks Congress for the robust bipartisan support that has
resulted in several consecutive years of welcome and much needed
funding increases for NIH, including the more than $2 billion increase
that Congress provided in fiscal year 2020. For fiscal year 2021, ASH
strongly supports the Ad Hoc Group for Medical Research recommendation
that NIH receive $44.7 billion. This funding level, supported by more
than 330 other stakeholder organizations, would allow for meaningful
growth above inflation in the base budget that would expand NIH's
capacity to support promising science in all disciplines. It also would
ensure that funding from the Innovation Account established in the 21st
Century Cures Act would supplement the agency's base budget, as
intended, through dedicated funding for specific programs.
While we are grateful for Congress's ongoing commitment to NIH as a
top national priority through the regular appropriations process, we
also urge the inclusion of additional emergency supplemental
investments in the NIH as Congress considers future legislation to
promote the nation's physical, health, and economic resilience to the
current COVID-19 pandemic and future pandemics. The extraordinary
research currently underway to identify and develop potential COVID-19
vaccines, antivirals, and other medical countermeasures is all built on
the scientific foundation enabled by the Federal investment in NIH.
Additionally, the emergency supplemental resources provided to NIH in
the recently enacted COVID-19 packages are playing an important role in
identifying therapies and vaccines, as well as improving testing and
diagnostic methods.
Further supplementary funding to NIH will be necessary to help
preserve the momentum of the nation's investment in biomedical research
and aid in ramping up labs to their prior research capacities.
Researchers in every state suspended many laboratory activities for
their own personal safety and to comply with physical distancing
guidelines as a result of the COVID-19 pandemic. The closure of many
research facilities is impacting trainees, technicians, early-stage
investigators, and established investigators alike, preventing the
research workforce from maintaining momentum toward better prevention,
treatments, diagnostics, and cures for diseases such as blood cancers,
sickle cell disease, and other hematologic diseases and conditions.
Substantial costs have been incurred for the shut-down and there
will be significant additional costs for the eventual ramp-up of
research activities. For example, labs will need to replace personal
protective equipment that they have donated to support the critical
work of first responders and healthcare providers and will also need to
reestablish experimental models. This includes the need to rebuild
animal colonies, breed mice and other animal models, and reestablish
cell lines used for experiments that were destroyed during the
preparation to close labs. This is both costly and time consuming as
labs will need to replenish these colonies and retest to ensure
reproducibility of previous research findings prior to proceeding this
any new experimental work. Additionally, core facilities, such as those
that provide DNA sequencing and flow cytometry services, support cross-
disciplinary research efforts across federally funded research labs.
These facilities are also closed or functioning below capacity to
ensure readiness for any ongoing COVID-19 research efforts, and they
also need support.
Many new clinical questions are emerging daily from this COVID-19
pandemic. Indeed, as the infections continue, new disease
manifestations are developing including severe hematopoietic conditions
that have turned COVID-19 into not only a pulmonary disease, but a
blood disease as well. Recent emerging outcomes include coagulation and
severe inflammation, or the cytokine storm, that is seen in adults and
children alike and results in severe complications and even death in
some affected. In response to these health issues, the Society has
developed a ``COVID-19 Research Agenda in Hematology.'' This document
explores the key underlying research questions that, to date, lack
scientific evidence to inform clinical practice and treatment efforts.
The Society has deemed these questions to be of utmost importance to
address in order to best guide physicians on the front lines when
treating critically ill patients and attempting to save lives. It is
imperative that answers to these questions are provided soon to help
successfully defeat this virus and save as many lives as possible.
Finally, the Society is concerned about possible new policies that
would place the intellectual property of peer reviewed scientific and
medical research articles, published in professional journals, in
jeopardy. Of particular concern is a potential proposal by the
Administration to eliminate the current 12-month embargo to make
federally funded scientific research published in journals freely
available worldwide. If enacted, such a proposal could significantly
threaten scientific rigor, discovery, and innovation. The Society urges
the Subcommittee to re-affirm its support for the 2013 Holdren Memo,
which ensures public access to peer-reviewed articles no later than 12
months after the official date of publication. The current 12-month
embargo period allows for robust peer review and curation systems, and
copyright and intellectual property protection of American science.
fiscal year 2021 request: centers for disease control and prevention
The Society also recognizes the important role of the Centers for
Disease Control and Prevention (CDC) in preventing and controlling
clotting, bleeding, and other hematologic disorders. This is especially
important for improving the care and treatment of individuals with
sickle cell disease (SCD).
Sickle cell disease is an inherited, lifelong disorder affecting
approximately 100,000 Americans. Individuals with the disease produce
abnormal hemoglobin which results in their red blood cells becoming
rigid and sickle-shaped, causing them to get stuck in blood vessels and
block blood and oxygen flow to the body, which can cause severe pain,
stroke, organ damage, and in some cases premature death. Though new
approaches to managing SCD have led to improvements in diagnosis and
supportive care, many people living with the disease are unable to
access quality care and are limited by a lack of effective treatment
options.
Dedicated Federal funding is needed for CDC's SCD Data Collection
Program to allow the program to be expanded to include additional
states with the goal of covering the majority of the U.S. SCD
population over the next 5 years. The Sickle Cell Disease and Other
Heritable Blood Disorders Research, Surveillance, Prevention, and
Treatment Act of 2018 (Public Law 115-327) authorizes CDC to award SCD
data collection grants to states, academic institutions, and non-profit
organizations to gather information on the prevalence of SCD and health
outcomes, complications, and treatment that people with SCD experience.
For fiscal year 2021, the Society urges the Subcommittee to provide at
least $5 million for SCD data collection within the CDC's National
Center for Birth Defects and Developmental Disabilities, Division of
Blood Disorders (NCBDDD).
The current program was established with funding from the CDC
Foundation. It is a population-based surveillance system, which
collects and analyzes longitudinal data about people living in the U.S.
with SCD. Due to limited funding, implementation of the program has
occurred only in two states over the past few years--California and
Georgia (approximately 10 percent of the U.S. SCD population). Data is
being collected from multiple sources (newborn screening programs,
Medicaid, hospital discharge data, emergency department data, vital
records, and clinical data) in order to create individual healthcare
utilizations profiles, which is unique because it captures all
individuals with SCD regardless of insurance status. The program is
also valuable because it can follow individuals over time across
healthcare systems and create individual profiles of how they accessed
healthcare and their outcomes.
In September 2019, CDC announced the transfer of nearly $1.2
million in fiscal year 2019 funding to help seven additional states
(Alabama, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and
Virginia) develop systems to collect data on the issues faced by people
living with sickle cell disease. This bridge funding is an important
step toward improving and expanding the CDC's SCD data collection
efforts; however, it is only limited to 1 year. These states have
already made significant progress in building the infrastructure needed
to implement the program and it is important to continue to build on
this investment. Dedicated funding at $5 million for NCBDDD to carry
out the SCD Data Collection Program in fiscal year 2021 will assure
this.
Additionally, ASH supports the public health community's request
for at least $8.3 billion in funding for the CDC in fiscal year 2021.
ASH also urges continued support of the Public Health and Prevention
Fund which has supported many critical projects at CDC, including
investments in healthcare-associated infections. Currently the fund
comprises more than 11 percent of CDC's budget. ASH is concerned about
the repeated efforts to eliminate this fund because of the budgetary
pressure this would place on other programs within the Subcommittee's
jurisdiction.
fiscal year 2021 request: health resources and services administration
Finally, ASH seeks continued funding of the SCD Demonstration
Program within the Health Resources and Services Administration (HRSA)
and fiscal year 2021 level of $5.2 million. This program supports five
regional grantees, whose efforts focus on enhancing access to
comprehensive, state of the art SCD care for patients living with the
disease by providing educational programs and technical assistance on
advances in SCD treatments to a broad array of providers and assuring
coordination of care with hematologists, who specialize in the disease.
Thank you again for the opportunity to submit testimony. Please
contact ASH Senior Manager, Legislative Advocacy, Tracy Roades at
[email protected], if you have any questions or need further
information concerning hematology research or ASH's fiscal year 2021
requests.
______
Prepared Statement of the American Society of Human Genetics
The American Society of Human Genetics (ASHG) thanks the
Subcommittee for its continued strong support and leadership in funding
the National Institutes of Health (NIH). The $2.6 billion increase
provided for fiscal year 2020 reinforces our nation's commitment to the
health and well-being of all Americans by investing in biomedical
research and scientific innovation. ASHG urges the Subcommittee to
appropriate $44.7 billion for NIH in fiscal year 2021.
My name is Tony Wynshaw-Boris. I am a professor and chair of the
Department of Genetics and Genome Sciences at Case Western Reserve
University. My laboratory studies the biology, specifically the
genetics, of the development and function of the brain.
a breakthrough year in genetics and genomics
Seeking to understand the human body and diseases in service of the
public is an underlying imperative of genetics and genomics research. A
recent poll conducted by ASHG and Research!America indicated that 74
percent of Americans support increased Federal funding for genetics
research.\1\ Indeed, thanks to sustained Federal investment in basic
and translational research, we are now seeing the transformative impact
of genetics research with greater insight about diseases, innovative
diagnostic technology and new treatments.
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\1\ https://www.ashg.org/discover-genetics/public-views-of-
genetics-survey/.
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My laboratory studies the pathophysiological mechanisms of human
neurogenetic disorders, using animal models and more recently inducible
pluripotent stem cell (iPSC) models. These studies have started with an
understanding of brain development with a focus on how normal
development is affected in these disorders, and in some cases, this has
provided targets that could lead to novel therapies. My research
underscores the importance of basic research and its application to
human diseases.
Building on scientific knowledge and an enhanced understanding of
disease gleaned from years of federally funded research, new treatments
are now available for patients suffering from devasting diseases who
previously lacked options. In the past year alone, the FDA has approved
several new drugs and gene therapies for rare diseases: Duchenne
muscular dystrophy (DMD),\2\ spinal muscular atrophy (SMA),\3\ sickle
cell disease,\4\ and a drug that targets the most common mutation (90
percent) causing cystic fibrosis.\5\ The FDA also approved the first-
ever personalized therapy, Milasen, for a fatal neurodegenerative
disease: supported in part by NIH funding, the research and clinical
team took a remarkably short 10 months to go from identifying the
genetic defect to designing the drug.\6\
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\2\ https://www.fda.gov/news-events/press-announcements/fda-grants-
accelerated-approval-first-targeted-treatment-rare-duchenne-muscular-
dystrophy-mutation.
\3\ https://www.fda.gov/news-events/press-announcements/fda-
approves-innovative-gene-therapy-treat-pediatric-patients-spinal-
muscular-atrophy-rare-disease.
\4\ https://www.fda.gov/news-events/press-announcements/fda-
approves-novel-treatment-target-abnormality-sickle-cell-disease.
\5\ https://directorsblog.nih.gov/2019/10/31/dare-to-dream-the-
long-road-to-targeted-therapies-for-cystic-fibrosis/.
\6\ Kim, J., et al. 2019. Patient-Customized Oligonucleotide
Therapy for a Rare Genetic Disease. N.Engl.J.Med. 381:1644-1652;
https://directorsblog.nih.gov/2019/10/23/one-little-girls-story-
highlights-the-promise-of-precision-medicine/.
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In addition, there are numerous promising therapies currently
undergoing clinical trials. This includes a gene therapy for X-linked
severe combined immunodeficiency (SCID-X1), known as the ``bubble boy''
disease. For children suffering from this disease, common infections
can be life-threatening. However, infants enrolled in the study have
functioning immune systems and are living normal lives as toddlers.\7\
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\7\ Mamcarz, E., et al. 2019. Lentiviral Gene Therapy Combined with
Low-Dose Busulfan in Infants with SCID-X1. N.Engl.J.Med. 380:1525-34;
https://www.nih.gov/news-events/news-releases/gene-therapy-restores-
immunity-infants-rare-immunodeficiency-disease.
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Basic research on the human genome and biology is fundamental to
this clinical progress. For example, the naturally occurring ``CRISPR-
Cas9'' system was discovered through federally funded basic research
investigating the immune systems of bacteria.\8\ Scientists are now
harnessing it as a research and clinical tool to edit the human DNA
code, and numerous clinical trials are underway studying its
therapeutic utility for a variety of cancers, blood disorders, and
congenital blindness.\9\ Creative new tools based on CRISPR-Cas9 are
also being explored for cancer screening \10\ and rapid diagnostics for
infectious diseases such as COVID-19 \11\.
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\8\ https://www.genome.gov/dna-day/15-ways/genome-editing.
\9\ https://clinicaltrials.gov/.
\10\ Gootenberg, JS., et al. 2017. Nucleic acid detection with
CRISPR-Cas13a/C2c2. Science. 356:438-442.
\11\ https://www.broadinstitute.org/files/publications/special/
COVID-19%20detection%20
(updated).pdf.
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Genetics-based research and technology is advancing knowledge
across all areas of life science research. About 20 years ago, the
National Human Genome Research Institute (NHGRI) was funding over 90
percent of human genomics research at the NIH; today, NHGRI only
accounts for about 15 percent, and nearly every NIH institute and
center supports research on the human genome.\12\ This reflects the
increased use of genetics and genomics approaches for investigating
diseases suffered by millions of Americans, such as cancer,
cardiovascular diseases, and mental health.
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\12\ https://www.genome.gov/sites/default/files/media/files/2020-
02/NHGRIFY2021CJ.pdf.
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For example, the Pan-Cancer Project, a large-scale study aimed at
understanding cancer that involved over a thousand researchers around
the globe, sequenced and analyzed the complete genomes of 38 types of
cancer. A significant new discovery from this study is that mutations
that occur decades before diagnosis can contribute to the onset of
cancer in humans.\13\
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\13\ https://directorsblog.nih.gov/tag/pan-cancer-analysis-of-
whole-genomes-consortium/.
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Researchers are also exploring analytical approaches providing
novel insights on how the human genome is connected with disease.
Research groups are developing polygenic risk scores (PRS), a
predictive value of a person's risk for disease based on multiple genes
for a variety of complex diseases including cardiovascular disease,
diabetes, Alzheimer's, autism, and many more.\14\ The potential of PRS
in healthcare as an early intervention tool may help improve outcomes
and tailor clinical care.
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\14\ https://www.genome.gov/Health/Genomics-and-Medicine/Polygenic-
risk-scores.
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Genetics research also impacts other scientific disciplines and
Federal agencies. For example, a collaboration between NIH and NASA-
funded researchers published a landmark study last year, describing
genetic, physiological and other changes resulting from spaceflight.
The study provides a foundation for understanding how astronauts' body
and health may be affected in space.\15\
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\15\ Garrett-Bakelman, FE., et al. 2019. The NASA Twins Study: A
multidimensional analysis of a year-long human spaceflight. Science.
364:eaau8650; https://directorsblog.nih.gov/2019/04/23/nasa-twins-
study-reveals-health-effects-of-space-flight/.
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nih-funded activities: return on investment
Besides the immeasurable value of improving the quality of life and
health of the public, NIH research funding can be quantified as a
driver of economic activity. For fiscal year 2019, NIH funding
supported over 475,000 jobs across the nation and stimulated about $81
billion in economic activity. The economic gain in 29 states exceeded
$500 million.\16\
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\16\ https://www.unitedformedicalresearch.org/wp-content/uploads/
2019/04/NIHs-Role-in-Sustaining-the-US-Economy-FY19-FINAL-
2.13.2020.pdf.
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An overwhelming majority of Americans believe more research is
needed in human genetics and support increased Federal funding for
research. To echo the public's need and sentiment, the Society's
vision-people everywhere realize the benefits of human genetics and
genomics research-is achievable with sustained and robust funding for
the NIH. ASHG joins the Federation of American Societies for
Experimental Biology (FASEB), and the Ad Hoc Group for Medical Research
in recommending a $44.7 billion budget for NIH for fiscal year 2021.
The American Society of Human Genetics (ASHG), founded in 1948, is
the primary professional membership organization for human genetics
specialists worldwide. The Society's nearly 8,000 members include
researchers, academicians, clinicians, laboratory practice
professionals, genetic counselors, nurses and others who have a special
interest in the field of human genetics.
[This statement was submitted by Anthony Wynshaw-Boris, MD, PhD,
President, American Society of Human Genetics.]
______
Prepared Statement of the American Society of Nephrology and the
American Society of Pediatric Nephrology
On behalf of the 37 million children, adolescents, and adults
living with kidney diseases in the United States, the American Society
of Nephrology and the American Society of Pediatric Nephrology requests
a $3 billion for NIH over fiscal year 2020 levels, including a robust
funding increase for NIDDK that is at least proportional. In addition,
we urge you to consider a Special Statutory Funding Program for Kidney
Research at $150 million per year over 10 years, and $100 million in
emergency supplemental funding to study the impact of COVID-19 and
COVID-19 therapeutics and vaccines on the kidney and in people with
kidney diseases.
A January 2017 Government Accountability Office (GAO) report
highlighted the pressing need for investment in kidney research; GAO
found that the annual cost for care of the approximately 650,000
patients in the Medicare End-Stage Renal Disease (ESRD) program
exceeded the budget allocation for the entire NIH. While NIH's budget
allocation has grown since that time, we still dedicate equivalent of
approximately just 5 percent of the annual total cost of care for
kidney failure to kidney research at the NIH.
Since the GAO study was published, the number of patients with
kidney diseases and associated costs to the taxpayer have also risen.
There are now 720,000 Americans living with kidney failure, and
Medicare spends $35 billion managing kidney failure and $116 billion
managing kidney diseases, 15 percent of all Medicare spending. Greater
investment in kidney research should be an urgent priority to deliver
better outcomes for patients and bring greater value to the Medicare
program.
As the GAO highlighted, Congress made a commitment to treat all
Americans with kidney failure through the Medicare End-Stage Renal
Disease (ESRD) Program--the only health condition for which Medicare
automatically provides coverage regardless of age. This unique
commitment underscores the imperative for Congress to foster innovation
and discovery in kidney care.
Our organizations believe the Special Statutory Funding Program for
Type 1 Diabetes Research provides an ideal model to foster
breakthroughs in kidney therapies and cures. This Special Diabetes
Program has generated remarkable progress for diabetes patients,
including the development of the Artificial Pancreas. We urge your
support for an additional $150 million per year over 10 years to
establish a similar program NIDDK focused kidney research--a Special
Statutory Funding Program for Kidney Research--supplementing regularly
appropriated funds that the NIDDK receives.
NIDDK funds the vast majority of Federal research in kidney
diseases, and despite the immense gap between the Federal Government's
expenditures on kidney care and its investment in kidney research,
NIDDK-funded scientists have produced several major breakthroughs in
the past several years that require further investment to stimulate
therapeutic advancements. For example, geneticists focused on the
kidney have made advances in understanding the genes that cause kidney
failure, and other kidney scientists have developed an innovative
method to determine if new drugs cause kidney injury before giving them
to patients in clinical trials. NIDDK launched the Kidney Precision
Medicine Project that will pinpoint targets for novel therapies--
setting the stage for personalized medicine in kidney care. Additional,
sustained funding is needed to accelerate these and other novel
opportunities to improve the care of patients with kidney disease and
bring better value to the Medicare ESRD program.
Finally, people with kidney diseases are among the most vulnerable
to infectious diseases and there is mounting evidence that COVID-19
poses a unique risk: hospitalized COVID-19 patients with kidney
diseases are two and half times more likely to die from the virus.\1\
The risks posed by COVID-19 are especially salient among people with
kidney failure receiving in-center dialysis or living with a kidney
transplant.\2\ Sadly, some of the earliest COVID-19 deaths in the U.S.
were among kidney patients.\3\ In addition, while it is commonly
understood that COVID-19 causes damage to the lungs, increasing
evidence suggests that the SARS-CoV-2 virus causes kidney injury in
patients without pre-existing kidney disease. Anecdotal evidence from
New York and China suggest that as many as 14-30 percent of intensive
care unit patients with COVID-19 lose kidney function and require
emergency kidney replacement therapy.\4\
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\1\ Achenbach, J. Medical databases show 1 in 10 hospitalized
middle-aged coronavirus patients in U.S. do not survive. Washington
Post. April 11, 2020.
\2\ Abelson, R. Dialysis Patients Face Close-Up Risk From
Coronavirus. New York Times. April 11, 2020.
\3\ Rubin R. Finding Ways to Reduce Coronavirus Exposure During
Dialysis. JAMA. Published online April 16, 2020. doi:10.1001/
jama.2020.6158
\4\ Bernstein, L., Johnson, C. Y., Kaplan, S., & McGinley, L.
Coronavirus destroys lungs but doctors are finding its damage in
kidneys, hearts and elsewhere. Washington Post. April 15, 2020.
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To date, NIDDK has identified several opportunities for research of
the impact of COVID-19 on the kidney and on people with kidney
diseases.\5\ Such areas identified by NIDDK to-date include:
--Collection of biosamples that could inform the pathogenesis of
COVID-19 associated kidney diseases.
--Studies to gather data from healthcare systems and ongoing clinical
trials to better understand whether patients with COVID-19 and
diseases in the mission of NIDDK have different outcomes based
on underlying disease factors or therapies for their condition.
--Studies to identify risk factors that could lead to modification of
therapy in high risk individuals such as patients with acute
kidney injury and other diseases within the mission of NIDDK
that are treated with immunomodulators or biologic pathway
inhibitors
--Studies to identify novel pathogenic pathways and potential
translational targets for the development of kidney diseases
associated with COVID-19 infection using relevant in vitro and
in vivo studies of the kidney.
--Pilot clinical studies designed to understand the natural history
of COVID-19 related acute kidney injury, or to evaluate
interventions to prevent or treat COVID-19-induced acute kidney
injury.
However, as currently structured, such research is funded out of
previously obligated fiscal year 2020 appropriations, limiting the
scope of research NIDDK will be able to support. The scientific
challenges facing the kidney community--such as the link between COVID-
19 and kidney injury, the unique susceptibility of people with kidney
diseases to COVID-19, and the response of people with kidney diseases
to vaccines and medications developed to address COVID-19--are critical
for providing optimal care during the current pandemic and improving
the response to future pandemics, and require immediate and dedicated
funding.
With additional funding, NIDDK could expand supported opportunities
of investigation to include critical areas such as:
--Studies to identify the response of people with kidney diseases,
including those with a transplant or receiving dialysis, to
COVID-19 vaccines and medications, which may be different than
in populations without kidney diseases
--Understanding infectious disease transmission among mandatory
congregate populations for healthcare, including patients
requiring in-center dialysis
--Interactions between COVID-19 and people with kidney diseases, such
as the observed decrease of cytokine storms in kidney patients,
and its impact on the development of COVID-19 prognosis and
therapeutics
--Strategies to support transition to and maintain home modalities of
care for kidney failure
We respectfully request that Congress provide $100,000,000 in
emergency supplemental funds for NIDDK in addition to regular fiscal
year 2021 appropriations, identical to what was provided in the CARES
Act to the National Heart Lung and Blood Institute to study questions
of similar urgency.
Thank you again for your leadership, and for your consideration of
our request. Should you have any questions or wish to discuss NIDDK or
kidney research in more detail, please contact Erika Miller with the
American Society of Pediatric Nephrology at [email protected] or
Rachel Meyer with the American Society of Nephrology at rmeyer@asn-
online.org.
about the american society of nephrology
The American Society of Nephrology is a 501(c)(3) non-profit, tax-
exempt organization that leads the fight against kidney disease by
educating the society's more than 20,000 nephrologists, scientists, and
other healthcare professionals, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. For more information, visit www.asn-online.org.
about the american society of pediatric nephrology
Founded in 1969, the American Society of Pediatric Nephrology is a
professional society composed of pediatric nephrologists whose goal is
to promote optimal care for children with kidney disease and to
disseminate advances in the clinical practice and basic science of
pediatric nephrology. ASPN currently has over 600 members, making it
the primary representative of the Pediatric Nephrology community in
North America.
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\5\ NIDDK. Notice of Special Interest (NOSI): Availability of
Urgent Competitive Revision Supplements on Coronavirus Disease 2019
(COVID-19) within the Mission of NIDDK. April 9, 2020.
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______
Prepared Statement of the American Society of Nephrology
On behalf of the more than 37 million Americans living with kidney
diseases, the American Society of Nephrology respectfully requests that
in the Office of the Secretary of Health and Human Services (IOS),
General Department Management, for the Office of the Chief Technology
Officer (CTO), $25 million in be included for KidneyX, a public-private
partnership to accelerate innovation in the prevention, diagnosis, and
treatment of kidney diseases, in the fiscal year 2021 Labor, Health and
Human Services, Education and Related Agencies Appropriations bill, and
for $200 million be provided in emergency supplemental appropriations
to accelerate the development of the artificial kidney to meet the
needs brought to light by the COVID-19 pandemic.
accelerating innovation in the prevention, diagnosis, and treatment of
kidney diseases
More than 37 million people in the United States are living with
kidney diseases, and more than 750,000 have kidney failure, for which
there is no cure. Despite the significant burden of kidney diseases,
there has been a dearth of innovation in this space compared to other
areas of medicine. Our healthcare system has fostered a sense of
complacency with current therapies and technologies, and complex
barriers deter innovators and investors from entering the kidney care
space to develop therapies that improve the quality of life for
patients and bring better value to the system. Americans affected by
kidney diseases deserve better.
The status quo for treating and managing kidney diseases is far too
costly to taxpayers to continue without intervention. The Medicare
program spent more than $36 billion to manage kidney failure through
Medicare's End Stage Renal Disease (ESRD) program in fiscal year 2017--
more than 7 percent of all Medicare spending and more than either the
entire NIH or entire NASA budget. Further, the prevalence of kidney
diseases is growing and costs taxpayers and the Medicare program
billions: $120 billion in 2017 alone, or 34 percent of traditional
Medicare spending. As the only automatic entitlement program regardless
of age in Medicare, taxpayers bear the vast burden of these costs.
Despite this significant burden, there has been a lack of innovation in
the prevention, diagnosis, and treatment of kidney diseases for
decades.
These findings highlight the need for KidneyX to address the
barriers to innovation and investment. KidneyX stimulates the
commercialization of new therapies while providing a catalyst for
investment by the private market in three specific ways that are not
currently addressed by market forces or Federal efforts:
--Providing funding to promising innovators to fill specific unmet
patient product development needs-informed by patients-through
a series of prize competitions.
--De-risking the commercialization process by fostering coordination
among the National Institutes of Health, the Food and Drug
Administration, Centers for Diseases Control and Prevention,
and the Centers for Medicare and Medicaid Services to provide a
clear, predictable path towards commercialization, led by the
Office of the Chief Technology Officer within the HHS IOS.
--Creating a sense of urgency within the private sector to develop
new therapies for people with kidney diseases, repositioning
the kidney space as an attractive and untapped market.
KidneyX is already starting to deliver on its mission to accelerate
breakthroughs and generate a sense of urgency to bring new solutions to
kidney patients. KidneyX has launched 3 prize competitions which have
jointly received more than 350 submissions and has distributed $2
million in prizes to a diverse portfolio of awardees. KidneyX launched
its first prize competition Redesign Dialysis Phase 1 in 2018 followed
by its second and third competitions, Redesign Dialysis Phase 2 and the
Patient Innovator Prize in 2019, and plans to launch additional prizes
including the moonshot Artificial Kidney Prize mandated in the
Executive Order on Advancing American Kidney Health in 2020.
KidneyX is a patient-driven solution supported by an invested
community. KidneyX is a true public-private partnership: the private
sector has already committed $25,000,000 to KidneyX and is committed to
matching Federal funding to achieve a total $250,000,000 in the first 5
years. KidneyX received $5 million in fiscal year 2020 enacted
appropriations legislation.
We respectfully request that the Labor-HHS Subcommittee continue
its commitment to bringing new therapies for people with kidney
diseases by appropriating $25,000,000 in fiscal year 2021 for KidneyX,
catalyzing private sector investment across the prevention, diagnosis,
and treatment of kidney diseases. In addition, we also ask that you
include the following language in the report accompanying your
Committee's appropriations bill:
The Committee is aware that more than 37 million U.S. citizens are
living with kidney diseases, and for more than 750,000 of those
individuals, the diseases progress to kidney failure, requiring access
to dialysis or kidney transplantation to live. The Committee notes that
kidney failure alone accounted for more than 7 percent of Medicare
spending (approximately $36 billion) in fiscal year 2017 and that
kidney disease accounted for 34 percent of Medicare spending
(approximately $120 billion) in fiscal year 2017. The Committee
commends HHS for its efforts to improve the lives of these individuals
through KidneyX.
Given the high cost of kidney disease in terms of health
consequences and Federal spending, the Committee recommends that a
total of $25,000,000 be added to the funds for the Office of the
Secretary in fiscal year 2021 for the Office of the Chief Technology
Officer, and that those funds be made available to support KidneyX.
These funds would represent the first of a five-year commitment to
support KidneyX at $25,000,000 each year. The Committee has included
funding to support this recommendation. This funding will accelerate
the development and adoption of novel therapies and technologies that
improve the diagnosis and treatment of patients with kidney diseases,
through a variety of fund awards, technical assistance, and other
support resources and services.
increasing the resilience of kidney health care to covid-19 and future
crises
People with kidney diseases are among the most vulnerable to
infectious diseases and there is mounting evidence that COVID-19 poses
a unique risk: hospitalized COVID-19 patients with kidney diseases are
two and half times more likely to die from the virus.\1\ The risks
posed by COVID-19 are especially salient among people with kidney
failure receiving in-center dialysis or living with a kidney
transplant.\2\ Sadly, the first COVID-19 death in the U.S. was a kidney
patient.\3\ In addition, while it is commonly understood that COVID-19
causes damage to the lungs, increasing evidence suggests that the SARS-
CoV-2 virus causes kidney injury. Anecdotal evidence from New York and
China suggest that as many as 14-30 percent of intensive care unit
patients with COVID-19 lose kidney function and require emergency
kidney replacement therapy,\4\ potentially adding thousands of new
cases of kidney failure to our healthcare system.
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\1\ Achenbach, J. Medical databases show 1 in 10 hospitalized
middle-aged coronavirus patients in U.S. do not survive. Washington
Post. April 11, 2020.
\2\ Abelson, R. Dialysis Patients Face Close-Up Risk From
Coronavirus. New York Times. April 11, 2020.
\3\ Rubin R. Finding Ways to Reduce Coronavirus Exposure During
Dialysis. JAMA. Published online April 16, 2020. doi:10.1001/
jama.2020.6158.
\4\ Bernstein, L., Johnson, C. Y., Kaplan, S., & McGinley, L.
Coronavirus destroys lungs but doctors are finding its damage in
kidneys, hearts and elsewhere. Washington Post. April 15, 2020.
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The current U.S. kidney health infrastructure relies heavily on in-
center hemodialysis to treat kidney failure, a care modality that
requires mass congregation of vulnerable populations and large numbers
of medical personnel. People receiving in-center hemodialysis are
unable to follow Federal guidelines recommending social distancing, the
therapy requires sitting in close proximity to other immune-compromised
patients for 12-16 hours every week.
While numerous efforts undertaken by Congress and the
Administration, especially the Executive Order on Advancing American
Kidney Health, have started to transform the status quo of care, the
COVID-19 pandemic has demonstrated that more must be done to accelerate
the development of novel therapies that could mitigate the challenges
facing people with kidney failure. New technology, such as the
artificial kidney, could enable more patients to safely receive the
care they need at home while maintaining a higher quality of life.\5\
An artificial kidney would mitigate challenges posed by the current
pandemic--such as the current shortage of critical hemodialysis
supplies in New York \6\--and making our kidney health system more
resilient to future pandemics, natural disasters, and other crises.
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\5\ Huff, C. How artificial kidneys and miniaturized dialysis could
save millions of lives. After decades of slow progress, researchers are
exploring better treatments for kidney failure--which kills more people
than HIV or tuberculosis. Nature. March 11, 2020.
\6\ Abelson, R., Fink, S., Kulish, N., Thomas, K. An Overlooked,
Possibly Fatal Coronavirus Crisis: A Dire Need for Kidney Dialysis. New
York Times. April 18, 2020.
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The first prize competitions held by KidneyX have fulfilled their
objective to accelerate innovation by focusing on redesigning dialysis
and identifying patients' innovations in their own care.\7\ This, in
turn, has stimulated the private markets' attention to promising
technologies for people with kidney failure. Based on KidneyX's
Redesign Dialysis Phase 1 and 2 prize competitions, new approaches and
innovators have surfaced. Wearable or implantable artificial kidney
technology are progressing to stages that with appropriate support
could be ready for regulatory consideration within 3 years, meeting the
needs of kidney patients in the current pandemic and increasing the
resilience of our kidney health system for future crises. While total
to-market costs for the artificial kidney will likely exceed
$400,000,000 per prototype, prize purses of $50,000,000 per prototype
will be sufficient to draw the immediate attention of private
investors.
---------------------------------------------------------------------------
\7\ Prize Competitions. KidneyX. https://www.kidneyx.org/
PrizeCompetitions. Accessed April 22, 2020.
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We respectfully request that the Labor-HHS Subcommittee provide
$200,000,000 to KidneyX in emergency supplemental funding for the
accelerated development of artificial kidney technologies, shortening
the runway for therapies that will increase the resilience of our
kidney healthcare system.
Thank you for your consideration of this important request. Should
you have questions or need additional information, do not hesitate to
contact Rachel Meyer, Director of Policy and Government Affairs of the
American Society of Nephrology, at [email protected].
about the american society of nephrology
The American Society of Nephrology is a 501(c)(3) non-profit, tax-
exempt organization that leads the fight against kidney disease by
educating the society's more than 22,000 nephrologists, scientists, and
other healthcare professionals, advancing research and innovation,
communicating new knowledge, and advocating for the highest quality
care for patients. For more information, visit www.asn-online.org.
[This statement was submitted by Rachel Meyer, Director of Policy
and
Government Affairs, American Society of Nephrology.]
______
Prepared Statement of the American Speech-Language-Hearing Association
Chairman Blunt, Ranking Member Murray, members of the Subcommittee:
The American Speech-Language-Hearing Association (ASHA) thanks you for
the opportunity to submit testimony to the Subcommittee on the fiscal
year 2021 Labor-HHS-Education funding bill. My name is Theresa H.
Rodgers, ASHA's President for 2020. ASHA is the national professional,
scientific, and credentialing association for 211,000 members and
affiliates who are audiologists; speech-language pathologists; speech,
language, and hearing scientists; audiology and speech-language
pathology support personnel; and students.
ASHA thanks the members of the Subcommittee for increasing funding
for the Individuals with Disabilities Education Act (IDEA) last year.
Congress must continue to make significant investments in IDEA to meet
the needs of the country's education system by ensuring children with
disabilities receive the Free Appropriate Public Education (FAPE) to
which they are entitled under law. Substantially increasing funding for
IDEA is the right step in fulfilling the promise that Congress made to
fund 40 percent of the average per-pupil expenditure in public
elementary and secondary schools. This critical program serves more
than 6.5 million children in our nation's schools, including students
with communication disorders.\1\ Infants and toddlers with disabilities
and their families receive early intervention services under IDEA Part
C, and children and youth receive special education and related
services under IDEA Part B. To support special education, ASHA requests
an increase to $14 billion for IDEA Part B State Grants funds for
fiscal year 2021, which includes an increase to $684 million for IDEA's
Part B Section 619 as well as an increase in IDEA Part C funding to
$491 million for fiscal year 2021.
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\1\ U.S. Department of Education. (n.d.). About IDEA. Retrieved May
20, 2020 from: https://sites.ed.gov/idea/about-idea/.
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In light of the pandemic of Coronavirus Disease 2019 (COVID-19),
ASHA is pleased that the Coronavirus Aid, Relief, and Economic Security
(CARES) Act (Public Law 116-136) included over $15 billion in the
Education Stabilization Fund earmarked for elementary and secondary
education, through the Governor's Emergency Education Fund and the
Elementary and Secondary Education Relief Fund. This funding will be
essential to support states and local education agencies as they
continue to provide FAPE to all students with disabilities. However,
without clear data on how much of the funding is dedicated to IDEA
services and supports, fiscal year 2021 funding for IDEA must be
robust. As schools across the nation move to a virtual education
setting, providing special education services becomes more difficult. A
surge in funding is vital to ensure students with disabilities receive
a continuum of care to prevent any regression.
ASHA urges your continued support for newborn hearing screening and
intervention. ASHA requests a total of $30.5 million for Early Hearing
Detection and Intervention (EHDI) programs, which includes $19 million
for the Health Resources and Services Administration (HRSA) and $11.5
million for the Centers for Disease Control and Prevention (CDC).
Full support for EHDI is critical to ensure all newborns are
screened for hearing loss. Hearing loss is a serious health condition
that impacts more than 34 million Americans, and two to three out of
every 1,000 children in the United States are born with a detectable
level of hearing loss in one or both ears.\2\ Last reauthorized in
2017, EHDI provides state grants to develop and support infant hearing
screening and intervention programs through HRSA, and requires the CDC
to provide surveillance of screenings, referral to treatment and
diagnosis, technical assistance, and applied research. EHDI has proven
to be one of the nation's most important public health programs,
offering universal early hearing screening and interventions to all
newborns, infants, and young children.
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\2\ National Institute on Deafness and Other Communication
Disorders (NIDCD). (2017). Researchers help uncover a root cause of
childhood deafness in the inner ear using animal model. Retrieved from
https://www.nidcd.nih.gov/news/2017/childhood-deafness-research.
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Failure to fund EHDI at its full authorization level may leave
thousands of children with undiagnosed hearing loss and deprive
children who are deaf or hard of hearing from receiving follow-up
services that improve language skills and development as many
healthcare appointments and treatments have been delayed or cancelled
due to the COVID-19 pandemic.
When state-based universal newborn hearing screenings were
established with the passage of the Child Health Act of 2000, only 46.5
percent of infants were screened for hearing loss, yet with today's
EHDI programs, 98 percent of infants are screened for hearing
loss.\3,4\ Additional resources will assist CDC and HRSA in
strengthening hearing loss identification and reducing intervention
service gaps that have occurred during the COVID-19 public health
emergency. When hearing loss is detected late, the critical time for
stimulating the auditory pathways to hearing centers of the brain is
lost. Late hearing loss detection also delays speech and language
development affecting social and emotional growth, academic
achievement, and employment options. Funding for hearing screenings and
early intervention services are a smart investment for the U.S.
economy, and saves the country approximately $200 million in education
costs each year alone.\5\
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\3\ Centers for Disease Control and Prevention (CDC). (2010).
Summary of infants screened for hearing loss, diagnosed, and enrolled
in early intervention, United States, 1999-2008. Atlanta, GA: U.S.
Department of Health & Human Services, CDC. Retrieved from https://
www.cdc.gov/ncbddd/hearingloss/2008-data/ehdi_1999_2008.pdf.
\4\ Centers for Disease Control and Prevention (CDC). (2018).
Summary of 2016 National CDC EHDI Data. Retrieved from https://
www.cdc.gov/ncbddd/hearingloss/2016-data/01-2016-HSFS-Data-Summary-
h.pdf.
\5\ Gross, S.D. (2007). Education cost savings from early detection
of hearing loss: New findings. Volta Voices, 14(6),38-40.
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ASHA applauds the efforts of the Subcommittee to increase the
National Institutes of Health (NIH) budget. We are supportive of
efforts to increase the investment in research across all institutes
involved with communication sciences and disorders. Congress must
support researchers who devote their careers to finding causes and
prevention of communication disorders. Communication disorders are the
most prevalent of all disabling conditions and approximately 46 million
Americans have a communication disorder.\6\ These disorders impact the
economy through costs related to lost productivity, special education
services, rehabilitation needs, healthcare expenditures, and lost
revenues. Continued increases in funding for the National Institute on
Deafness and Other Communication Disorders (NIDCD) are needed to ensure
groundbreaking research on communication sciences continues and
expands. Specifically, ASHA supports a $17 million increase to the
NIDCD for a total fiscal year 2021 level of $507 million.
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\6\ National Institute on Deafness and Other Communication
Disorders (NIDCD). (2019). Mission. Retrieved from https://
www.nidcd.nih.gov/about/mission.
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ASHA also supports providing a $3 million increase for the National
Institute on Disability, Independent Living, and Rehabilitation
Research (NIDILRR) at the Administration for Community Living (ACL).
With this increase to $115 million, NIDILRR's funding for fiscal year
2021 would allow the Institute to continue supporting the wide range of
applied research that it conducts and expand into new areas of emerging
science to support the population of individuals with relevant
disabilities.
Chairman Blunt, Ranking Member Murray and members of the
Subcommittee, on behalf of ASHA and its 211,000 members, we again
appreciate the opportunity to provide these comments and thank you for
your efforts to eradicate delayed detection and intervention for
hearing loss; support additional resources for special education
services; and your continued support for patient-oriented clinical
research funding. We look forward to working with you and the
Subcommittee as the fiscal year 2021 appropriations process moves
forward.
[This statement was submitted by Theresa H. Rodgers, MA, CCC-SLP,
President, American Speech-Language-Hearing Association.]
______
Prepared Statement of the American Statistical Association
Dear Chair Blunt and Ranking Member Murray,
I write in support of the Bureau of Labor Statistics (BLS), the
National Center for Education Statistics (NCES), and the National
Center for Health Statistics (NCHS) for your consideration as you draft
the fiscal year 2021 Labor, Health and Human Services, Education, and
Related Agencies appropriations bill.
For BLS, thank you for your strong support of its programs through
the fiscal year 2020 level of $628 million. The additional funding
enables BLS to carry out and continue to improve its ongoing programs
and better understand the impact of the digital economy on our
workforce. I also convey our strong support for the administration's
request of $645 million for the fiscal year 2021 program budget in
addition to the $13 million for the BLS relocation to Suitland,
Maryland. As you know, the BLS produces economic data that are
essential for evidence-based decisionmaking by businesses and financial
markets, Federal and local officials, and households faced with
spending and career choices. The BLS, like every Federal statistical
agency, must modernize in order to produce the gold standard data on
jobs, wages, skill needs, inflation, productivity and more on which our
businesses, researchers, and policymakers rely heavily. BLS'
modernization efforts have been hampered by its $73 million (12
percent) loss of purchasing power since fiscal year 2009. (See enclosed
graph.)
The administration's request level is a positive step towards the
restoration of BLS resources. We fully support the proposals, including
for the Job Openings and Labor Turnover Survey (JOLTS). The increased
sample size for JOLTS will enable state-level data and more detailed
industry data, which will be especially helpful to governors, regional
economic development organizations, and other policymakers in the
Covid-19 recovery period. We also support the proposed investments for
the Consumer Expenditure program. This program is overdue for a new
design given its burden on respondents. Resources now feasible through
big data and technological advances have the potential to improve
inflation and poverty measurement. These improved programs will be
especially informative as our country recovers from the Covid-19
pandemic.
For the NCHS, we recommend a funding level of at least $189
million--an increase of $14.6 million and realignment of $14 million in
ongoing transfers--which would restore NCHS' budget to its inflation-
adjusted fiscal year 2010 funding level. While NCHS work has been
critical to monitoring deaths due to Covid-19, recent events, including
the opioid crisis, have made clear that our public health data
surveillance systems are challenged in many ways, as reported this
spring in a National Academies' seminar.\1\ For example, current
systems are slow to alert us to ``change in key indicators so that
interventions can be implemented early in a crisis...'' They need to be
redesigned for automatic reporting and for flexibility to adjust
quickly to new crises and to data collection disruption. The
recommended funding level would help NCHS to address these challenges.
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\1\ https://www.nationalacademies.org/event/05-08-2020/cnstat-
public-seminars-deaths-of-despair-and-the-future-of-capitalism, at
minute, 1:22.
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For the NCES, we echo our requests in a March 23 joint letter to
you with the American Educational Research Associations, two former
NCES commissioners, and two former chief statisticians of the United
States:
To ensure NCES continues serving its vital mission, we request
inclusion of provisions in the fiscal year 2021 appropriations
bill that would enable NCES to rebuild internal capacity
through hiring full-time, permanent staff. We also urge at
least a 5 percent budget increase for the NCES statistics
account that would partially redress its more than 20 percent
loss in purchasing power since fiscal year 2009.
We reiterate points from that letter in the next three paragraphs.
The NCES has an ongoing staffing crisis that has reached a point this
year likely to result in terminations and cutbacks of critical
statistical information programs. All Federal statistical agencies
conduct some of their work with government staff resources and contract
with others--often specialized profit-making firms, but sometimes other
Federal agencies--to conduct the remainder. The NCES has an
exceptionally high budget-to-staff ratio, $3 million/FTE, which is nine
times the median of other Federal statistical agencies. This means a
higher proportion of the critical statistical data collection design
and analysis--normally expected of Federal employees--is, instead,
performed by contractors. Compared with other statistical agencies,
NCES staff resources are disproportionately allocated to overseeing
contractors who perform many of these essential statistical activities.
We believe this shift has gone too far for THE NCES to be a healthy
statistical organization and strongly recommend Congress take explicit
actions to address this condition in the fiscal year 2021 appropriation
process. A set-aside allocation of 20 additional staff would provide a
good start to rebuild NCES staff resources.
We also urge the NCES statistics account be funded at a level of at
least $115 million. As shown in the enclosed graph, this account has
lost more than 20 percent of its purchasing power since fiscal year
2009, when its budget was $116 million. The loss of purchasing power is
even greater since fiscal year 2010-fiscal year 2012, when the account
was at $125 million or higher. (Our recommended level does not include
the $3 million in the administration's request that is transferred from
the statewide longitudinal data systems for the Privacy Technical
Assistance Center.) The requested increase of at least 5 percent will
help NCES' ability to track emerging education trends, reduce
respondent burden, and provide more timely and regional data--efforts
that are currently taxed due to both the loss of the agency's
purchasing power and its staffing crisis.
Among the surveys that should be prioritized for continuation are
the School Survey on Crime and Safety (SSOCS) and the Fast Response
Survey System (FRSS), which we understand may be discontinued until
staff and funding are in place. SSOCS' estimates of school crime,
discipline, and disorder--as well as associated programs and policies--
are essential to ensuring our schools provide safe learning
environments for our nation's children. FRSS was established to collect
data quickly, with minimum response burden, to inform new policies and
would be especially helpful in getting our schools back on track as we
recover from the Covid-19 pandemic. Increased funding will also be
necessary to create and maintain the Postsecondary Student Data System,
a major new project in the College Affordability Act of 2019 currently
working its way through Congress for reauthorization of the Higher
Education Act.
Finally, thank you for your strong support for the National
Institutes of Health. We also strongly support the NIH budget.
Sincerely.
[This statement was submitted by Ron Wasserstein, Executive
Director, American Statistical Association.]
______
Prepared Statement of the American Thoracic Society
SUMMARY: FUNDING RECOMMENDATIONS
[in millions $]
------------------------------------------------------------------------
------------------------------------------------------------------------
NATIONAL INSTITUTES OF HEALTH........................... $44.7 billion
National Heart, Lung & Blood Institute.............. $3.890
National Institute of Allergy & Infectious Disease.. $6.345
National Institute of Environmental Health Sciences. $860.3
Fogarty International Center........................ $82.9
National Institute of Nursing Research.............. $173.4
------------------------------------------------------------------------
CENTERS FOR DISEASE CONTROL AND PREVENTION.............. $8.300
National Institute for Occupational Safety & Health. $354.8
Asthma Programs..................................... $34
Div. of Tuberculosis Elimination.................... $195.7
Office on Smoking and Health........................ $310
------------------------------------------------------------------------
The ATS is a multi-disciplinary society of 16,000 pulmonary,
critical care and sleep specialists who are on the frontlines of the
COVID-19 pandemic treating individuals and conducting vital scientific
research to develop diagnostics, treatments, and prevention
interventions for this and all respiratory diseases, critical illnesses
and sleep disorders.
lung disease in america
Respiratory diseases are the third leading cause of death in the
U.S., responsible for one of every seven deaths. Diseases affecting the
respiratory (breathing) system include COVID-19, chronic obstructive
pulmonary disease (COPD), lung cancer, influenza, sleep disordered
breathing, tuberculosis (TB), occupational lung disease, asthma, and
critical illnesses such as sepsis.
national institutes of health
The coronavirus crisis has revealed the critical national public
health security leadership role that the NIH holds in scientific
expertise to guide the nation in critical biomedical. In order to
accelerate the development of life-saving cures and treatments and
innovative prevention interventions, it is essential for Congress to
continue providing robust, predictable funding increases across the
full spectrum of NIH-supported research. We ask the subcommittee to
provide at least $44.7 billion in funding for the NIH in fiscal year
2021.
While the biomedical research community is focusing on COVID-19-
related research, other critical research has been slowed or halted
completely due to academic center and laboratory closures. As a result
of research pauses, the scientific workforce of investigators,
postdoctoral candidates and technical support staff across the U.S. is
facing deep uncertainty about the future. In addition to the fiscal
year 2021 appropriation of $44.7 billion, the ATS urges Congress to
provide $31 billion in funding to expand COVID-19 related research,
support biomedical research grant and contract supplements through NIH
and other Federal agencies, research facility operating costs and
additional postdoctoral fellowships and other research training
positions in the next COVID-19 response package.
national heart, lung and blood institute
The National Heart, Lung and Blood Institute (NHLBI) is conducting
vital research to address morbidity and mortality among individuals
with COVID-19, develop interventions to mitigate life-threatening
cardiovascular, respiratory and hematological complications of the
disease and develop new therapeutics, including for high-risk
populations. In addition to the fiscal year 2021 appropriation of
$3.890 billion, the ATS urges Congress to provide supplemental funding
of $300 million to permit NHLBI to sustain and expand its investment in
basic, clinical, and translational across heart, lung, blood and sleep
scientific research to address these critical needs related to COVID-19
and prepare for additional waves of disease in the coming months.
Even though respiratory disease is the third leading cause of death
in the U.S., respiratory research is underfunded. The COPD death rate
has doubled within the last 30 years and is still increasing, while the
rates for the other top causes of death (heart disease, cancer, and
stroke) have decreased by over 50 percent. Despite the rising
respiratory disease burden, research funding for the disease is
disproportionally low relative to funding invested for the other three
leading causes of death. In order to stem the devastating effects of
respiratory disease, NIH, including NHLBI research funding must grow.
Chronic Obstructive Pulmonary Disease
Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading
cause of death in the United States and the third leading cause of
death worldwide. CDC estimates that 12 million patients have COPD; an
additional 12 million Americans are unaware that they have this life-
threatening disease. COPD costs the economy almost $50 billion a year,
including $29 billion in direct health expenditures and $29 billion in
indirect costs such as lost wages.
The COPD National Action Plan, released in 2017, aims to expand
surveillance and research of the disease, develop public health
interventions, and increase public awareness of the disease. The ATS
urges Congress to provide NIH's National Heart, Lung and Blood
Institute (NHLBI) with $75 million in fiscal year 2021 for
implementation of the COPD National Action Plan. In addition, we urge
the subcommittee to provide $5 million for CDC for creation of a
Chronic Disease Education and Awareness Program to provide competitive
grants supporting public health efforts for COPD and other chronic
diseases, as proposed in the fiscal year 2020 House Labor-HHS-ED bill.
We also urge CDC to include COPD-based questions to future CDC health
surveys, including the National Health and Nutrition Evaluation Survey
(NHANES), the Behavioral Risk Factor Surveillance System (BRFSS) and
the National Health Information Survey (NHIS).
centers for disease control and prevention
CDC is our front-line national public health agency responding to
COVID-19. In order to halt the COVID-19 pandemic, it is critical that
the agency receives sustained funding increases. The ATS supports a
funding level for the CDC that enables it to effectively respond to
infectious disease outbreaks such as COVID-19, provide vital support to
state and local public health programs and continue to support chronic
disease prevention and occupational safety and training and health
research. The ATS recommends a funding level of at least $8.300 billion
for the CDC in fiscal year 2021.
antibiotic resistance
According to the CDC's 2019 report, Antibiotic Resistance Threats
in the United States up to 35,000 deaths occur in the U.S. annually due
to antibiotic resistant bacteria including drug resistant pneumonia and
sepsis infections. The rise of antibiotic resistance shows the need to
increase efforts through the CDC, NIH and other Federal agencies to
monitor and prevent antibiotic resistance and develop rapid new
diagnostics and treatments. This includes the following recommendations
for CDC programs:
--$200 million for the Antibiotic Resistance Solutions Initiative
--$37.5 million for the Advanced Molecular Detection (AMD) Initiative
We urge the committee to provide $6.345 billion for the National
Institutes of Allergy and Infectious Disease (NIAID) to spur research
into rapid new diagnostics and treatments and $230 million for the
Biomedical Advanced Research and Development Authority (BARDA) to
support antimicrobial research and development.
tobacco control
Tobacco use is the leading preventable cause of death in the U.S.,
responsible for one in five deaths annually. Tobacco cessation and
prevention activities are among the most effective and cost-effective
investments in disease prevention. The CDC's Office on Smoking and
Health (OSH) is the lead Federal program for tobacco prevention and
control and created the ``Tips from Former Smokers'' Campaign, which
has prompted hundreds of thousands of smokers to call 1-800-QUIT-NOW or
visit smokefree.gov for assistance in quitting--with even more smokers
making quit attempts on their own or with the assistance of their
physicians. The ATS recommends fiscal year 2021 funding of $310 million
for the Office of Smoking and Health.
asthma
Asthma is a significant public health problem in the U.S.
Approximately 25 million Americans currently have asthma. In 2017,
3,564 Americans died because of asthma exacerbations. Asthma is the
third leading cause of hospitalization among children under the age of
15 and is a leading cause of school absences from chronic disease.
African Americans have the highest asthma prevalence of any racial/
ethnic group and the age-adjusted death rate for asthma in this
population is three times the rate in whites. We ask that the
subcommittee provide $34 million in fiscal year 2021 for CDC's National
Asthma Control Program.
sleep
Several research studies demonstrate that sleep-disordered
breathing and sleep-related illnesses affect an estimated 50-70 million
Americans. The public health impact of sleep illnesses and sleep
disordered breathing is still being determined, but is known to include
increased mortality, traffic accidents, cardiovascular disease,
obesity, mental health disorders, and other comorbidities. The ATS
recommends a funding level of $1 million in fiscal year 2021 to support
activities related to sleep and sleep disorders at the CDC, including
surveillance activities and public educational activities. The ATS also
recommends an increase in funding for research on sleep disorders at
the NHLBI's Nation Center for Sleep Disordered Research (NCSDR).
tuberculosis
Tuberculosis (TB) is the leading global infectious disease killer,
ahead of HIV/AIDS, claiming 1.5 million lives each year. In the U.S.,
every state reports cases of TB annually and in 2019, twenty-one states
reported TB increases. Drug resistant tuberculosis was identified as a
serious public health threat to the U.S. in CDC's 2019 report on
antimicrobial resistance. And there are up to 13 million people in the
U.S. with latent TB infection (LTBI), the reservoir of future active
cases. Yet CDC's domestic TB program has been flat funded since fiscal
year 2014, leaving states ill-equipped to manage drug resistant TB and
unable to do LTBI testing and preventive treatment. The continued
global pandemic of this airborne infectious disease demand that the
U.S. strengthen our investment in global and domestic TB control and
research to develop new TB diagnostic, treatment, and prevention tools.
The ATS recommends a funding level of $195.7 million in fiscal year
2021 for CDC's Division of TB Elimination and $21 million for CDC's
Global TB program through the Center for Global Health. We urge the NIH
to expand research to develop new tools to address TB. Additionally, in
recognition of the unique public health threat posed by drug resistant
TB, the ATS urges BARDA to support research and development into new
drug-resistant TB diagnostic, treatment, and prevention tools.
Most TB programs around the country report that TB program staff
and some TB hospital units have been moved to focus almost exclusively
on COVID-19. The COVID-19 emergency in the U.S., and its economic
impact, has put enormous strain on state and local budgets that fund
the majority of TB services. CDC's global TB program is providing
critical technical assistance to countries struggling to address COVID
while maintaining TB services. In addition to the fiscal year 2021
appropriations for these programs, the ATS urges Congress to provide
$30 million for CDC, state, and local tuberculosis (TB) programs and
$20 million for CDC's global TB program in the next COVID-19 response
legislation.
pediatric lung disease
The ATS is pleased to report that infant death rates for various
lung diseases have declined for the past 10 years. Many of the
precursors of adult respiratory disease start in childhood. For
instance, many children with respiratory illness grow into adults with
COPD. It is estimated that 6.2 million children suffer from asthma. 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 funded and
encouraged to coordinate investigation in this area.
researching and preventing occupational lung disease
The ATS urges the subcommittee to provide at least $354.8 million
in funding for the National Institute for Occupational Safety and
Health (NIOSH). NIOSH, within the CDC, is the primary Federal agency
responsible for conducting research and making recommendations for the
prevention of work-related illness and injury.
legislative riders
We urge the Senate to refrain from considering legislative riders
in this and all appropriations bills. By refraining from considering
legislative riders, Congress can more swiftly complete its
constitutional obligation for completing appropriations bills in a
timely manner.
[This statement was submitted by Juan C. Celedon, MD, DrPH, ATSF,
President, American Thoracic Society.]
______
Prepared Statement of the American Urogynecologic Society
The American Urogynecologic Society (AUGS) thanks the Subcommittee
for the opportunity to submit comments for the record regarding our
recommendations for prioritizing research on pelvic floor disorders at
the National Institutes of Health in fiscal year 2021. AUGS is a
national medical society whose mission is to promote the highest
quality of care in Female Pelvic Medicine and Reconstructive Surgery
(FPMRS, aka Urogynecology) through excellence in education, research,
and advocacy.
Pelvic floor disorders, which include pelvic organ prolapse and
urinary and bowel incontinence, impact more than 25 million women
annually in the United States, alone.
Pelvic organ prolapse occurs when the pelvic floor muscles and
connective tissue supporting the pelvic organs (the bladder, uterus and
cervix, vagina, and rectum) weaken or tear and can no longer support
these organs. This causes one or more of the pelvic organs to fall
downward into the vagina, like a hernia. Women may feel or see tissue
coming out of the opening of their vagina as this condition advances.
The risk factors and causes of pelvic floor damage leading to pelvic
organ prolapse include:
Pregnancy and Childbirth: One in three women who has given birth
has pelvic organ prolapse. Being pregnant and having a vaginal delivery
can damage the pelvic muscles and nerves, allowing the organs to drop.
This is particularly true for women who have had a large baby, many
babies or needed forceps to deliver during a challenging birth.
Aging and Menopause: Loss of estrogen with menopause, along with
other changes with aging, can weaken the pelvic floor.
Certain Health Conditions: Health problems that involve repeated
straining (such as obesity, chronic cough, and chronic constipation).
Genetics: Genes help determine the strength of the connective
tissue, so a woman is more likely to develop pelvic organ prolapse if
her mother had the condition.
Pelvic organ prolapse is a common problem, with 1 out of 8 women
undergoing surgery for prolapse at some point in their life. Some
studies have shown a prevalence difference in racial and ethnic
populations. More research is needed to better understand disparities
in access to care and care-seeking behaviors so that we can understand
these disparities. Pelvic organ prolapse can occur in reproductive age
women but becomes more common as women age and after menopause.
Treatment of pelvic organ prolapse requires significant healthcare
resources; the annual cost of ambulatory care for pelvic floor
disorders in the United States from 2005 to 2006 was almost $300
million. Non-surgical treatments require frequent healthcare visits and
surgical treatments are imperfect with 20 percent of women experiencing
recurrences within 10 years. Surgical repair of prolapse is performed
twice as commonly as incontinence surgery and constitutes the most
common inpatient procedure performed in women older than 70 years.
This has prompted many scientists to seek improved surgical
solutions. However, when innovations are poorly studied and quickly
promoted to a large surgical population, well-intentioned efforts can
backfire. For example, after a period of rapid adoption, concern over
the safety and efficacy of vaginal mesh--augmented prolapse repairs
resulted in a ban by the FDA in 2019. Clinicians and patients still
struggle to find reliable and safe treatments for pelvic organ
prolapse. Advances in care must be well studied prior to wide adoption,
and outcomes must be tracked on a large scale to identify high quality
approaches that lead to significant improvements in women's health.
The other two most common types of pelvic floor disorders are
urinary and bowel incontinence. Over half of people aged 65 and older
living at home reported urinary and/or bowel incontinence, according to
the Centers for Disease Control and Prevention. In fact, these
conditions are leading causes for admission to nursing homes as
families are challenged for caring for their loved ones.
Urinary incontinence is loss of bladder control that can lead to
involuntary leakage of urine. The symptoms range in severity from
occasional incidents to daily or nightly occurrences. It can happen at
any age but is more prevalent in older individuals. The most common
types of urinary incontinence are the following:
Stress Incontinence.--Women most commonly develop stress urinary
incontinence from changes that happen in pregnancy or
childbirth which weaken the support to the urethra and urethral
sphincter. Urine leaks when pressure is exerted on the bladder
during coughing, sneezing, laughing, exercising or lifting
something heavy.
Urge Incontinence.--A sudden, intense urge to urinate that is
followed by an involuntary loss of urine. It can cause the need
to urinate frequently, and often throughout the night. Urge
incontinence happens because of altered bladder nerve signaling
and is also referred to as ``overactive bladder.''
Mixed Incontinence.--This is a combination of stress and urge
incontinence and is the most common form of incontinence in
older women.
Overflow Incontinence.--Frequent or constant dribbling of urine due
to a bladder that doesn't empty completely. Often, these
patients also have a neurological condition.
Functional incontinence.--A physical or mental impairment (such as
arthritis or Alzheimer's disease) may limit the ability to
reach a bathroom in time.
Incontinence has a substantial financial impact to society. In the
United States, direct and indirect costs of overactive bladder are
estimated at $76 billion in 2015. By the year 2020, the costs of
overactive bladder evaluation and treatment are projected to account
for $82.6 billion of U.S. healthcare expenditures, making it a huge
public health burden.
Women who suffer from pelvic floor disorders experience a
significant adverse impact on quality of life, resulting in
restrictions in activities, social isolation, depression and physical
discomfort. We believe the financial and personal toll caused by pelvic
floor disorders require a renewed focus at the National Institutes of
Health to improve prevention and treatment strategies for these
conditions. As part of this effort, we strongly urge that technology be
harnessed to identify trends in clinical care and efficacy associated
with the use of new innovations to treat pelvic floor disorders to
ensure patient safety and better patient outcomes.
The AUGS urges the Subcommittee to adopt the following language in
the report accompanying the fiscal year 2021 Labor-HHS-Education
appropriations bill to achieve these objectives.
Pelvic Floor Disorders.--The Committee recognizes that Pelvic Floor
Disorders, including such conditions as urinary incontinence,
accidental bowel leakage and pelvic organ prolapse, have a large
financial impact on individuals and society, and significant negative
quality of life impact for more than 25 million women annually, in the
USA alone. We urge NICHD, NIDDK and NIA to work together on the
development of universally accepted disorder specific data sets and
biorepositories for the purpose of research studies on patient outcomes
of current and future therapies used to treat pelvic floor disorders
and the pathogenesis of these conditions. The Committee requests that
NICHD, NIDDK and NIA provide a report on current research and future
initiatives to address pelvic floor disorders in the fiscal year 2022
Congressional Justification and provide timely updates to the Committee
on advances being made with respect to prevention, treatment and
understanding the mechanisms of these conditions.
Thank you in advance for your favorable consideration of this
report language request and for your support for prioritizing research
on pelvic floor disorders. Your leadership on this issue will provide
hope to millions of women suffering from these conditions.
______
Prepared Statement of Andrews Kate deg.
Prepared Statement of Kate Andrews
My interest in more funding for research for RX and a cure for
schizophrenia is needed desperately. Our adopted son was accepted to 3
colleges in NC. He was a freshman attended NC State in Raleigh NC in
November 2017. The campus police called our home at 11.00 p.m. to
report our son was on campus grounds staring into the tunnel. He was
staring and would not answer their questions--he was catatonic. And
since that night our world was turned upside down, four hospital stays
and three group homes, my husband and I have had a life where we would
become angry, worried, frustrated, and depressed. Our son as of April 1
has finally been stabilized. He left the group home on March 16, 2020.
He is living in a tiny apartment from the housing authority. His
disability was a god send, but when in the group home his allowance for
clothing toiletries, and any recreation was 60.00 a month, and his cell
phone is 40.00. This diagnosis is schizoaffective and he becomes
delusion and manic without his multiple RX. He takes for his mental
health. and takes RX to help with the many bad side effects of his
antipsychotic medicine and his mood stabilizer...so scary to have to
see your families be torn apart watching your child turn from a
confident intelligent person to someone who barely can communicate. And
all in their prime of life. Had just turned 19 when he had his
psychotic break...he was so delusional he had his entire college paid
for and attended less than 3 months. Schizophrenia is a debilitating
disease and robs persons of fulfilling their hopes and dreams, without
family support I would shutter to think where our son would be today,
possibly homeless or incarcerated as so many schizophrenic are.
______
Prepared Statement of the Animal Welfare Institute
The Animal Welfare Institute appreciates the opportunity to submit
testimony on fiscal year 2021 spending priorities for the U.S.
Department of Health and Human Services. We are requesting report
language for the Department pertaining to Protecting Animals With
Shelter (Section 12502, Public Law 115-334) and pertaining to the post-
research retirement of animals used in government financed experiments.
protecting animals with shelter (section 12502 of the farm bill)
When there is violence in the home, it can be directed at everyone-
spouse or partners, children, elderly family members, and companion
animals. Abusers are well aware of the bond between their victims and
their pets. They exploit that bond to frighten, control, manipulate,
and even ``punish'' their human victims.
Unfortunately, few domestic violence survivors have access to
shelters that can protect them and their pet; in fact, large numbers
delay escaping out of fear for the safety of the pets left behind.
Several surveys bear the grim statistics:
--As many as 48 percent of the battered women reported they had
delayed leaving a dangerous situation out of concern for their
companion animals' safety.
--Between 49 percent and 86 percent reported that their pets had been
threatened, harmed, or killed by their partners.
--85 percent of domestic violence shelters indicated that women
coming to their facilities spoke of incidents of pet abuse.
Congress has wisely sought to address this shortage of resources.
Section 12502 of Public Law 115-334, the Agriculture Improvement Act of
2018, authorizes a grant program to provide emergency and transitional
shelter and housing options for domestic violence survivors with
companion animals. It is urgent that Congress now appropriate the full
authorized funding and direct the agencies involved to take all
necessary steps to implement the program. If shelters and other service
providers can help domestic violence survivors find a safe place for
their companion animals, they will be better able be to bring everyone
to safety. The PAWS provision will greatly increase their capacity to
meet these critical needs. We respectfully request that the Committee
reiterate its interest in having all departments involved in this grant
program work together to ensure its speedy implementation.
Requested Report Language: The Committee directs the Secretary of
Health and Human Services to continue consultations with the Secretary
of Agriculture, as well as with the Secretary of Housing and Urban
Development and the Attorney General, and enter into any memoranda of
understanding as needed, in order to finalize the requirements for
grant application and implementation under Section 12502 of Public Law
115-334, the Agriculture Improvement Act of 2018, to provide emergency
and transitional shelter and housing options for domestic violence
survivors with companion animals.
post-research adoption of animals used in extramural research
Animals used for laboratory testing deserve the opportunity to
experience normal lives with families or through sanctuary care once
they are no longer needed for any research protocol. Most animals used
for research spend their lives in cages, often isolated from one
another, and are forced to undergo procedures that produce trauma and
suffering. Instead of needlessly killing them after their use in
experiments is over, laboratories should give them a second chance. The
retirement and adoption of research animals can be rewarding for the
caretakers and scientists as well, who often want to see the animals
moved to positive environments when no longer needed for research. NIH
has instituted policies and procedures to facilitate the retirement of
animals no longer needed for research, but that policy covers only NIH
intramural research. We respectfully request that NIH be directed to
extend this policy to NIH-funded extramural research.
Requested Report Language: The Committee commends the National
Institutes of Health and other agencies for instituting policies and
procedures to facilitate the placement of animals no longer needed for
research with families or nonprofit shelters or sanctuaries. This is a
far more humane and less wasteful practice than euthanizing otherwise
healthy animals. We note, however, that the NIH policy covers only NIH
intramural research. Animals used in NIH-funded extramural research
also should not be needlessly euthanized at the end of the experiment
if they are determined to be healthy enough to be adopted or retired.
The Committee directs NIH to require grantees receiving extramural
funds from NIH for research using animals to implement post-research
adoption policies that are at least as comprehensive as the NIH
intramural policy. The committee requests that NIH provide a written
update on this effort within a year.
[This statement was submitted by Nancy Blaney, Director, Government
Affairs, Animal Welfare Institute.]
______
Prepared Statement of the Arthritis Foundation
On behalf of the 54 million adults and 300,000 children living with
doctor-diagnosed arthritis in the United States, the Arthritis
Foundation thanks Chairman Blunt and Ranking Member Murray for the
opportunity to provide written testimony to the Appropriations
Subcommittee on Labor, Health and Human Services (HHS), and Education
and Related Agencies for fiscal year 2021. We respectfully request
robust funding for the Centers for Disease Control and Prevention (CDC)
Arthritis Program, and estimate full funding for the program is
approximately $54 million.
Arthritis affects 1 in 4 Americans and is the leading cause of
disability in the United States, according to CDC. It limits the daily
activities of over 23 million Americans and causes work limitations for
40 percent of the people with the disease. This translates to over $300
billion a year in direct and indirect costs. There is no cure for
arthritis, and for some forms of arthritis like OA, there is no
disease-modifying pharmaceutical therapy. Research is critical to build
towards a cure, develop better treatments with fewer severe side
effects, and identify biomarkers and therapies for types of arthritis
for which none exist. A strong investment in public health research and
programs is essential to making breakthroughs in treatments, finding a
cure for arthritis, and for delivering those breakthroughs to the
people who suffer from this debilitating disease.
The CDC Arthritis Program is the only Federal program dedicated
solely to arthritis. Today, the program provides grants to 13 states to
support evidence-based disease management programs. The program aims to
connect all Americans with arthritis to resources to help them manage
their disease. Evidence-based programs like EnhanceFitness help keep
older adults active, and have shown a 35 percent improvement in
physical function, resulting in fewer hospitalizations and lower health
costs compared to non-participants. In addition, Walk With Ease is an
evidence-based group walking program that encourages people with
arthritis to start walking and stay motivated to keep active. The
program allows participants to meet a few times per week to receive
health education on an arthritis or exercise-related topic following by
stretching activities, and a group walk. A recent CDC-funded randomized
controlled trial found that the program can help reduce arthritis
symptoms, reduce disability, and improve strength and balance.
Not only does the Arthritis Program provide resources to people
with arthritis, it also supports data collection on the prevalence and
severity of arthritis. Due to this support, we know that 24.9 percent
of people in Missouri and 22.2 percent of people in Washington have
doctor-diagnosed arthritis; about 44 percent and 43 percent,
respectively, of people in those states report activity limitations due
to 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. From a historical perspective, funding for
the program was cut by 25 percent in fiscal year 2015, bringing the
fiscal year 2015 total down from $13 million to $9.5 million. As a
result, program staff had to cut program activities between 10 and 50
percent, with some eliminations, and were unable to make new
investments in arthritis programs. While $1.5 million was restored in
fiscal year 2016, the Arthritis Program is still not operating at its
funding level of $13.3 million during fiscal year 2010. Combined with
previous flat funding, the program has lost millions of dollars in
purchasing power over the last decade.
We estimate that a robust allocation for the Arthritis Program
would total at least $54 million in fiscal year 2021. With this level
of funding, the program would be able to:
--Provide funding to states to fully operationalize a National
Arthritis Program. Today, the CDC Arthritis Program funds only
13 state programs around the country (AR, KS, MA, MN, MS, NH,
NY, NC, OR, RI, UT, VA, and WA). These programs play a vital
role in the dissemination of proven strategies and programs,
and all states should receive funding to operate an arthritis
program;
--Expand national partnerships that are critical to promoting
awareness, increasing primary provider referrals for non-
pharmacologic management of chronic pain, and providing access
to arthritis self-management and physical activity programs;
and
--Invest in robust data and intervention and prevention research to
better understand arthritis.
We thank the Subcommittee for its commitment to the health and
wellbeing of all Americans. As you write the fiscal year 21 Labor-HHS-
Education appropriations bill, we hope you will provide robust funding
for the CDC Arthritis Program in order to continue investments that
improve the lives of people with chronic diseases like arthritis.
Please contact Vincent Pacileo, Director of Federal Affairs, at
[email protected], with any questions.
______
Prepared Statement of the Association for Career and Technical
Education and Advance CTE
Chairman Blunt, Ranking Member Murray, and distinguished members of
the subcommittee, on behalf of the Association for Career and Technical
Education (ACTE), the nation's largest not-for-profit association
committed to the advancement of education that prepares youth and
adults for career success, and Advance CTE, the nation's longest-
standing not-for-profit that represents State Directors and leaders
responsible for secondary, postsecondary and adult Career Technical
Education (CTE) across all 50 states and U.S. territories, we
respectfully request that the subcommittee increase funding for the
Perkins Basic State Grant program, administered by U.S. Department of
Education's Office of Career, Technical, and Adult Education, to $1.963
billion in the fiscal year 2021 Labor, Health and Human Services,
Education, and Related Agencies appropriations bill. It is vital that
Congress continues to build upon the recent increases to the
Strengthening Career and Technical Education for the 21st Century Act
(Perkins V) in order to fully support the implementation of the law and
the 11.8 million learners it serves across the nation.\1\
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\1\ Perkins Collaborative Resource Network, Perkins Data Explorer,
customized Consolidated Annual Report data. Retrieved from https://
perkins.ed.gov/pims/DataExplorer.
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High-quality CTE programs are delivering real results. Across the
country, CTE programs are preparing learners for promising career paths
and giving employers and our economy a competitive edge. CTE programs
provide unique opportunities for learners to engage with employers and
participate in internships, apprenticeships and other meaningful on-
the-job experiences. In addition, these programs produce strong
outcomes for the learners they serve. The average high school
graduation rate for students concentrating in CTE is 95 percent,
compared to a national adjusted cohort graduation rate of 85
percent.\2\ Additionally, students involved in CTE are far less likely
to drop out of high school than other students, a difference estimated
to save the economy $168 billion each year.\3\ Furthermore, those
students are highly likely to continue their education--91 percent of
high school graduates who earned two to three CTE credits enrolled in
college.\4\
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\2\ Perkins Collaborative Resource Network, Perkins Data Explorer,
customized Consolidated Annual Report data. https://perkins.ed.gov/
pims/DataExplorer; U.S. Department of Education, Office of Elementary
and Secondary Education, Consolidated State Performance Report, 2010-11
through 2016-17.
\3\ Kotamraju, P. Measuring the return on investment for CTE.
Techniques: 28-31, 2011. Retrieved from https://files.eric.ed.gov/
fulltext/EJ943149.pdf.
\4\ U.S. Department of Education, National Center for Education
Statistics, Data Point: Career and Technical Education Coursetaking and
Postsecondary Enrollment and Attainment: High School Classes of 1992
and 2004, 2016. Retrieved from https://nces.ed.gov/pubs2016/
2016109.pdf.
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The outcomes for adult learners are also significant: 84 percent of
adults concentrating in CTE programs either continued their education
or were employed within 6 months of completing their program.\5\ In
fact, 90 percent of Americans agree that apprenticeships and skills
training programs prepare individuals for a good standard of living.\6\
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\5\ Includes only states that report data on adult CTE learners to
the U.S. Department of Education. Perkins Collaborative Resource
Network, Perkins Data Explorer, customized Consolidated Annual Report
data. Retrieved from https://perkins.ed.gov/pims/DataExplorer/
Performance.
\6\ New America, Varying Degrees 2018: Executive Summary. Retrieved
from https://www.newamerica.org/education-policy/reports/varying-
degrees-2018/executive-summary/.
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Expanding funding for CTE programs will create a brighter future
for communities--leading to more career options for learners, better
results for employers, and increased growth for our economy. Investing
in CTE programs provides substantial benefits for not just the students
enrolled, but for states and communities across the country. In
Wisconsin, taxpayers receive $12.20 in return for every dollar invested
in the technical college system.\7\ Oklahoma's economy reaps a net
benefit of $3.5 billion annually from graduates of the CareerTech
System.\8\ Individuals who receive a certificate or degree from
California Community Colleges almost double their earnings within 3
years, \9\ while every dollar spent on secondary CTE students in
Washington state leads to $26 in lifetime earnings and employee
benefits.\10\ If we are serious about providing learners with the real-
world skills, hands-on opportunities and real options for college and
rewarding careers that come with CTE and making progress toward closing
the skills gap, then there is no better time than now to invest $1.963
billion in CTE State Grants; this would be a strong down payment on
doubling the Federal investment in CTE State Grants by fiscal year
2024, which is the long-term goal of our organizations.
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\7\ Wisconsin Technical College System, The Technical College
Effect, 2016. Retrieved from https://www.wistechcolleges.org/sites/
default/files/POSTER8.5x11-2016update2_0.pdf.
\8\ Snead, M. C., The Economic Contribution of CareerTech to the
Oklahoma Economy: Cost-Benefit Analysis of Career Majors (fiscal year
2011), 2013. Retrieved from https://www.okcareertech.org/about/
costbenefit-analysis-of-career-majors/cost-benefit-analysis-of-career-
majorsfy-11-pdf.
\9\ Foundation for California Community Colleges, California
Community Colleges, n.d. Retrieved from https://foundationccc.org/
Portals/0/Documents/NewsRoom/FactSheets/ccc-facts-figures.pdf.
\10\ Workforce Training and Education Coordinating Board, Workforce
Training Results 2020. Retrieved from https://www.wtb.wa.gov/wp-
content/uploads/2020/01/2020-Dashboard.pdf.
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CTE programs prepare students for careers in in-demand fields and
provide an affordable pathway to both a family-sustaining career and
financial independence. Healthcare occupations, many of which require
an associate degree or industry credential, are projected to grow 14
percent by 2028--adding almost 2 million new jobs.\11\ Half of all STEM
occupations, which offer students high-skilled, high-wage career
opportunities, require less than a bachelor's degree.\12\ There are
currently about 30 million ``good jobs''--jobs that pay a median income
of $55,000 or more and require education below a bachelor's degree.\13\
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\11\ U.S. Department of Labor, Bureau of Labor Statistics,
Occupational Outlook Handbook, Healthcare Occupations. Retrieved from
https://www.bls.gov/ooh/healthcare/home.htm.
\12\ Rothwell, J. The Hidden STEM Economy, Brookings Institution,
2013. Retrieved from https://www.brookings.edu/research/the-hidden-
stem-economy/.
\13\ Georgetown University Center on Education and the Workforce,
Good Jobs that Pay Without a BA, 2017. Retrieved from https://
goodjobsdata.org/wp-content/uploads/Good-Jobs-wo-BA-final.pdf.
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Additionally, the demand for workforce credentials is growing. The
number of individuals earning certificates or associate degrees in CTE
fields, such as manufacturing, healthcare, and STEM, rose 71 percent
from 2002 to 2012.\14\ Students can pursue these valuable credentials
at community and technical colleges for a fraction of the cost of
tuition at other institutions: $3,730, on average for the 2019-2020
academic year.\15\
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\14\ U.S. Department of Education, Office of Planning, Evaluation
and Policy Development, Policy and Program Studies Service, National
Assessment of Career and Technical Education: Final Report to Congress,
2014. Retrieved from https://www2.ed.gov/rschstat/eval/sectech/nacte/
career-technical-education/final-report.pdf.
\15\ College Board, Average published charges, 2018-19 and 2019-20.
Retrieved from https://research.collegeboard.org/trends/college-
pricing/figures-tables/average-published-charges-2018-19-and-2019-20.
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Highly-skilled workers deliver direct benefits to American
employers through enhanced productivity and innovation; however, the
increased demands on the workforce pipeline are a persistent barrier to
economic growth. A projected three million workers are needed to fill
infrastructure jobs in the next few years, including careers in
construction, transportation and telecommunications.\16\ Meanwhile, 89
percent of executives agree there is a talent shortage in the U.S.
manufacturing sector, 5 percent higher than 2015 results.\17\ These
industries still need talent, even in the current economic climate.
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\16\ Kane, J. W., and Tomer, A. Infrastructure skills: Knowledge,
tools, and training to increase opportunity, Brookings Institution,
2016. Retrieved from https://www.brookings.edu/research/infrastructure-
skills-knowledge-tools-and-training-to-increase-opportunity/.
\17\ Deloitte and the Manufacturing Institute, Skills Gap and the
Future of Work Study, 2018. Retrieved from http://
www.themanufacturinginstitute.org/ /media/E323C4D8F75A470E8C96D7
A07F0A14FB/DI_2018_Deloitte_MFI_skills_gap_FoW_study.pdf; Deloitte and
the Manufacturing Institute, The skills gap in U.S. manufacturing 2015
and beyond, 2015. Retrieved from http://
www.themanufacturinginstitute.org/ /media/
827DBC76533942679A15EF7067A704CD.
ashx.
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Funding Perkins V at adequate levels will ensure that educators can
equip students with the skills they will need for in-demand fields.
This will become increasingly pressing as the country continues to
combat the current health pandemic and economic crisis. Already,
healthcare jobs are projected to have the largest increase of any
occupational sector.\18\ Filling these and other positions created, as
well as ensuring that each individual is able to access the training
needed for employment, is critical.
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\18\ U.S. Department of Labor, Bureau of Labor Statistics,
Occupational Outlook Handbook, Healthcare Occupations. Retrieved from
https://www.bls.gov/ooh/healthcare/home.htm.
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CTE programs can serve even more learners and employers--but only
if they receive more resources. According to The Bureau of Labor
Statistics Job Openings and Labor Turnover Survey (JOLTS) Highlights
for January 2020, for 23 consecutive months, there were more open jobs
in the U.S. than there were unemployed Americans.\19\ While the current
economic forecast is unclear, the significant gaps for skilled workers
remain; we anticipate that many workers will need to be reskilled to
rejoin the economy. Learner demand for CTE programs, especially
programs in in-demand sectors, is greater than supply. With current and
anticipated demand growing, more resources are needed. And there's
widespread support for CTE: 94 percent of parents approve of expanding
access to CTE.\20\ However, a survey of school districts offering CTE
found that the top barrier to offering CTE in high school was a lack of
funding or the high cost of the programs.\21\ As the chart below
demonstrates, between fiscal year 2004 and fiscal year 2020, funding
for CTE State Grants declined by over $77 million dollars, the
equivalent of $427 million inflation-adjusted dollars (i.e., 28 percent
in inflation-adjusted dollars).
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\19\ U.S. Department of Labor, Bureau of Labor Statistics, Job
Openings and Labor Turnover Survey (JOLTS) Highlights; January 2020.
Retrieved from https://www.bls.gov/web/jolts/jlt_labstatgraphs.pdf.
\20\ Hart Research Associates, Public School Parents on the Value
of Public Education: Findings from a National Survey of Public School
parents conducted for the AFT, September 2017. Retrieved from https://
www.aft.org/sites/default/files/parentpoll2017_memo.pdf.
\21\ U.S. Department of Education, National Center for Education
Statistics, Career and Technical Education Programs in Public School
Districts: 2016-17. Retrieved from https://nces.ed.gov/pubs2018/
2018028.pdf.
Taking a longer view, before fiscal year 2018, the investment in
CTE State Grants had been relatively flat since 1991 without being tied
to inflation, and the program's buying power had fallen by
approximately $933 million in inflation-adjusted dollars--a 45 percent
reduction over a quarter century.\22\
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\22\ U.S. Bureau of Labor Statistics, CPI Inflation Calculator.
Retrieved from https://data.bls.gov/cgi-bin/cpicalc.pl.
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Congress recognized the need to begin to reverse this trend and
from fiscal year 2018 to fiscal year 2020 provided an additional $175
million for CTE State Grants, bringing the total investment to $1.283
billion. While the past three budgets represented initial down payments
to meet increased need, a significant, robust investment in CTE
programs is still imperative to account for persistent underfunding,
the lack of inflation-adjusted increases, and most importantly the
overwhelming growth in demand for these programs from both learners and
the American economy. Congress should build on the momentum from recent
years and continue to strengthen the investment in CTE State Grants in
fiscal year 2021. And, Americans agree: 93 percent of voters support
increasing the investment in skills training.\23\
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\23\ ALG Research, Poll Finds Overwhelming Support for More Funding
for Skills Training, 2019. Retrieved from https://
www.nationalskillscoalition.org/news/press-releases/body/Poll-Finds-
Overwhelming-Support-for-More-Funding-for-Skills-Training.pdf.
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Though we are in the midst of a public health crisis facing the
country right now, and economic ramifications are likely, we
respectfully still request this increase in Federal CTE funding. Now
more than ever, individuals need access to upskilling and reskilling
opportunities to be part of the evolving workforce, and CTE programs
will be adapting, as always, to the needs of business and industry in
the current economy. We applaud their commitment to growing our
investment in Perkins V, and we urge the subcommittee to make CTE a top
priority in the fiscal year 2021 Labor, Health and Human Services,
Education, and Related Agencies appropriations bill.
Thank you for your thoughtful consideration of our request. For
more information or if you wish to discuss our request, please contact
ACTE's Government Relations Manager Michael Matthews
([email protected]) or Advance CTE Policy Associate Meredith
Hills ([email protected]).
______
Prepared Statement of the Association for Clinical Oncology
The Association for Clinical Oncology (ASCO), the world's leading
professional organization representing nearly 45,000 physicians and
other professionals who treat people with cancer, thanks this
subcommittee for its long-standing commitment to support federally
funded research at the NIH and NCI. ASCO is extremely grateful for the
$2.6 billion increase for the NIH in fiscal year 2020. This strong
commitment to scientific discovery will help the research community
continue current momentum and sustain our nation's position as the
world leader in biomedical research. We are in an exciting and
promising era of medical research; new discoveries are leading to major
improvements in the way we care for patients with cancer, and every
major medical breakthrough in cancer started with the NIH and NCI. ASCO
appreciates this opportunity to provide the following recommendations
for fiscal year 2021 funding to build on our nation's investment in
biomedical research:
--National Institutes of Health (NIH): $44.7 billion
--National Cancer Institute (NCI): $6.928 billion
--Beau Biden Cancer Moonshot Initiative: $195 million
--Centers for Disease Control and Prevention's (CDC) Division of
Cancer Prevention and Control (DCPC): $559 million
--Cancer Registries Program: $70 million
Robust, sustained funding for the NIH and NCI will continue the
extraordinary progress towards understanding the cause of cancer, its
progression, and our ability to prevent, diagnose and treat this
disease.
The NIH: A Good Investment
In fiscal year 2019, the NIH provided over $30 billion in
extramural research to scientists in all 50 states and the District of
Columbia.\1\ NIH research funding also supported more than 475,000 jobs
and generated nearly $81 billion in economic activity last year.\2\
Federal funding supported nearly a quarter of the studies highlighted
in ASCO's 2020 Clinical Cancer Advances report, our 15th annual report
on progress against cancer. Some of the most notable federally funded
advances highlighted in the 2020 report are:
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\1\ National Institutes of Health; https://www.nih.gov/about-nih/
what-we-do/impact-nih-research.
\2\ United for Medical Research; https://
www.unitedformedicalresearch.org/wp-content/uploads/2019/04/NIHs-Role-
in-Sustaining-the-US-Economy-FY19-FINAL-2.13.2020.pdf.
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--Neoadjuvant combinations of immunotherapies have paved the way for
more successful, less invasive surgeries for patients with
advanced melanoma
--Targeted therapies now provide alternatives to immediate surgery in
the treatment of renal cell carcinoma
--Upfront systemic treatments make surgery possible for more patients
with pancreatic cancer
--Long-term data now shows that vaccines against the human
papillomavirus are reducing cervical cancer risk in real-world
settings
--Biomarker-driven treatment approaches have opened the door to
personalized care for metastatic pancreatic cancer
--Combinations of different types of therapies now suggest that
survival can be extended for many patients without increasing
toxicity
--A growing number of targeted therapies offer hope to patients with
difficult to treat cancers
Sustained and steady funding of the NIH and NCI is critical to
maintaining the pace of scientific discovery and continued progress
against cancer, such as the advances outlined above.
Over the last few years, you have prioritized Federal funding for
biomedical research, increasing the NIH budget by $2.6 billion in
fiscal year 2020, and providing a combined increase of $11.6 billion in
the last five fiscal years. This investment has allowed the agency to
regain some of the ground that was lost over a decade of flat funding.
The funding levels we are requesting for fiscal year 2021 would allow
for meaningful growth above biomedical inflation for the first time in
over a decade and would allow the extraordinary progress of the last
few years to continue. Failure to continue the historic investment in
research places health outcomes, scientific leadership, and economic
growth at risk.
The NCI: More Support Needed
Cancer is the second leading cause of death in the United States,
and it is estimated that more than 1.8 million Americans will be
diagnosed with cancer this year, with an estimated 606,000 succumbing
to the disease. Additionally, cancer costs the U.S. economy more than
$216 billion annually in direct treatment costs and lost
productivity.\3\
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\3\ American Cancer Society; https://www.cancer.org/research/
cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-
2019.html.
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ASCO thanks you for your continued inclusion of funding for the
Beau Biden Cancer Moonshot Initiative in fiscal year 2020. The Cancer
Moonshot Initiative continues its work towards modernizing clinical
trials, establishing a direct patient engagement network, developing a
national cancer data ecosystem, continuing advances in precision
oncology, developing effective immunotherapies for a broader array of
cancers, including pediatrics, and creating an adult immunotherapy
network. Adequate funding is needed to make progress in each of these
areas over the coming years. Funding for this Initiative should
supplement rather than supplant predictable increases in the underlying
NCI budget. In fact, funding for the Initiative peaked at $400 million
in fiscal year 2019, and dropped to $195 million in fiscal year 2020.
The NCI is the largest funder of cancer research in the world, and
the majority of its funding goes directly towards supporting research
at NCI and at cancer centers, hospitals, community clinics, and
universities across the country. While the NCI has received modest
funding increases over the last few years, funding has not kept up with
the growing number of research grants and applications as compared to
other NIH Institutes or Centers. In fact, over the last 5 years R01
grant applications submitted to the NCI rose by 50 percent, while
funding for NCI only grew by 20 percent over the same time period. This
means NCI is funding a smaller proportion of grant applications
compared to previous years--only 8 percent of applications received
funding in 2019 compared to 28 percent in 1997. Even after counting the
additional funding NCI has received through the Cancer Moonshot
Initiative, NCI's budget has simply not kept up with scientific
opportunity. The funding requests submitted today would give the NCI
the ability increase the grants its able to fund to 15 percent of those
submitted.\4\
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\4\ National Cancer Institute; https://www.cancer.gov/about-nci/
budget/plan/2020-annual-plan-budget-proposal.pdf.
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Bringing the Research to the Patient
NIH-funded translational research and clinical trials have
significantly improved the standard of care in many diseases. Clinical
trials and translational research yield insight critical to the
development of targeted therapies, which identify patients most likely
to benefit and help patients who will not benefit avoid the cost and
pain of treatment unlikely to help them. This is where science becomes
practice-changing for patients in America.
ASCO has developed the Targeted Agent and Profiling Utilization
Registry (TAPUR\tm\) Study, which provides access to targeted therapies
for patients age twelve and older and who have been identified as
candidates for benefitting from those treatments because of a promising
tumor biomarker target identified in their cancer. The TAPUR Study
evaluates use of these molecularly targeted anti-cancer drugs and
collects data on clinical outcomes. As of March 2020, there are over
1800 participants enrolled in the TAPUR Study at 117 sites in 21
states. Without Federal investment spurring the pipeline of new cancer
treatments, studies such as TAPUR would not be possible.
To maintain access to research for cancer patients, ASCO urges a
substantial increase in funding for the National Clinical Trials
Network (NCTN) and NCI Community Oncology Research Program (NCORP).
Just last year, the NCI awarded 53 grants to researchers in the NCORP
community, at 46 sites, who have assembled more than 1,000 affiliates
across the country to conduct research. The NCORP network now covers 44
states DC.\5\ An increase in NCI's budget would enable the Institute to
maintain or increase the number of accruals to trials and cover the
cost of conducting the research.
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\5\ National Cancer Institute; https://ncorp.cancer.gov/news/2019-
08-19.html.
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Finally, we are in an unprecedented era for cancer research, with
more targeted and patient-specific therapies in development. However,
access to clinical trials remains a wide-spread issue for many patient
populations. Specifically, underserved communities, including patients
on Medicaid face several barriers when trying to access clinical
trials. Diversity and generalizability of cancer clinical trials is
crucial for making trial results applicable more broadly and to ensure
positive clinical outcomes for all patients. We hope to continue our
work with Congress, NCI and the Centers for Medicare and Medicaid
Services (CMS) to improve access to clinical trials for
underrepresented patient populations.
Cancer Registries: Harnessing Data
Accessible data is crucial to understanding cancer at a broader
level. ASCO joins the broader cancer community in requesting $559
million for the Centers for Disease Control and Prevention's (CDC)
Division of Cancer Prevention and Control (DCPC), and $70 million for
the CDC's Cancer Registries Program. Cancer registries are a critical
tool for providers and researchers, providing unparalleled cancer
surveillance, identifying emerging trends amongst different patient
cohorts, illustrating the impact of early detection, and showing the
impact of treatment advances on cancer outcomes. Registries allow
providers to collect data in real time and improve cancer research,
public health interventions and treatment protocols. While we work
towards greater trials inclusion, registries help ensure we have data
from underrepresented patient cohorts such as racial and ethnic
minorities, women and children, and rural populations.
Mitigating the Effects of COVID-19 and Continuing the Work Towards
Cures
Modern cancer research delivers new treatments to patients faster
than ever, thanks to continuing innovation in research and regulatory
infrastructure. Between August 2018 and July 2019, the FDA approved 17
new anti-cancer therapeutics. Since 1991 the cancer mortality rate has
declined by 29 percent, and between 2016 and 2017 we experienced the
largest single-year drop in cancer mortality ever reported, a 2.2
percent decline. Today two out of three people with cancer will leave
at least 5 years past diagnosis and there are 16.9 million American
cancer survivors.\6\ The investments Congress has made in cancer
research has helped make this progress possible.
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\6\ ASCO; https://www.asco.org/research-guidelines/reports-studies/
clinical-cancer-advances-2020.
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While we have made great progress in the field of cancer care, we
are in an unprecedented public health crisis that has affected all
corners of our healthcare system. Many labs across the country have had
to suspend or adjust their research as a result of the COVID-19
pandemic. Individuals in the research community are at risk of losing
their employment as well as their current research progress.
Unfortunately, the longer our clinical trials network is stagnant, the
more patients will miss out on potentially life-saving treatments. Once
this crisis subsides, flexibility and robust funding will be critical
to get the nation's trials and research enterprise fully running again.
It is vital that Congress acts now to provide relief in the form of
continued funding for the research community to ensure sustained
advances in healthcare therapies.
To continue the momentum gained over the last few years, lawmakers
and researchers will need to work together to mitigate COVID-19 related
disruptions to research and restore momentum across the nation's
medical research network. Therefore, I urge you to prioritize the
important role NIH and NCI play in medical innovation and economic
growth by protecting and strengthening federally funded research in
fiscal year 2021.
ASCO again thanks the subcommittee for its continued support of
cancer patients in the U.S. through funding for the NIH and NCI. We
look forward to working with all members of the subcommittee on an
fiscal year 2021 budget that continues to advance U.S. cancer research.
Please contact Kristin Palmer at [email protected] with any
questions.
[This statement was submitted by Monica Bertagnolli, MD, FASCO,
Chair,
Association for Clinical Oncology.]
______
Prepared Statement of the Association for Psychological Science
aps recommendations for fiscal year 2021 appropriations
_______________________________________________________________________
--As a member of the Ad Hoc Group for Medical Research, APS
recommends at least $44.7 billion for NIH in fiscal year 2021.
This would be a $3 billion increase over NIH's program level
funding in fiscal year 2020. This funding level would allow for
meaningful growth above inflation in the base budget that would
expand NIH's capacity to support promising science in all
disciplines beyond the directed funding included in the 21st
Century Cures Act.
--APS asks the Committee to continue to engage with NIH regarding
NIH's redefinition of clinical trials to include basic research
and asks the Committee to include strong and direct fiscal year
2021 report language to reject this redefinition. The Committee
included very direct report language in the fiscal year 2018
Omnibus directing NIH to ``delay enforcement of the new
policy'' and ``consult with the basic research community to
determine reporting standards best suited to this kind of
research.'' However, NIH is choosing to ignore the intent of
the Committee, and is continuing to move forward with a policy
that reclassifies a significant amount of basic research as a
clinical trial and subjects this research to the added
regulations and cost of clinical trials. APS encourages NIH to
develop a compromise, in collaboration with the behavioral
science research community, which encourages registration and
reporting of research but does not require applications to go
through clinicaltrials.gov or be called a clinical trial.
--APS asks Congress to urge NIH to establish an advisory panel to
review and recommend programs and structures that will result
in a stronger basic, applied, and clinical behavioral science
research and training enterprise at NIH in recognition of the
central role of behavior in health. Behavior is involved in the
development, treatment, or prevention of virtually every public
health issue facing this Nation, including the ongoing
coronavirus pandemic and other viruses and diseases, opioid
addiction, cancer, diabetes, mental illness, violence,
traumatic brain injury, and alcoholism.
--Finally, APS urges the Committee to favorably consider the requests
of the Psychological Clinical Science Accreditation System
(PCSAS) to urge the modification of HRSA and National Health
Service Corps regulations to permit the graduates of PCSAS-
accredited schools to be eligible for employment in these
programs. APS believes that the strong emphasis on science in
PCSAS accreditation offers promise of improved prevention and
treatment interventions which will strengthen HRSA and the
National Health Service Corps programs.
_______________________________________________________________________
Chairman Blunt and Members of the Subcommittee, thank you for the
opportunity to provide testimony as you consider funding priorities for
fiscal year 2021. I am Sarah Brookhart, Executive Director of the
Association for Psychological Science (APS). APS is a nonprofit
organization dedicated to the advancement of scientific psychology
nationally and internationally. Mr. Chairman, APS recognizes and
appreciates your leadership and the leadership of this Subcommittee in
supporting public health research.
funding for the national institutes of health and policy issues
As previously noted, APS recommends an fiscal year 2021 funding
level of $44.7 billion for NIH, which would enable real growth over
health research inflation as an important step to ensuring stability in
the Nation's research capacity over the long term. The Administration's
request of $38.7 billion in fiscal year 2021, translating to a $3.0
billion cut, is reckless and shortsighted. Cuts to NIH would affect
every American, including patients, their families, researchers, and
communities where NIH investment spurs economic growth. In addition to
funding priorities, APS is concerned about several policy issues at
NIH.
Clinical Trials Definition
APS continues to be concerned that NIH is moving forward with the
implementation of a new definition of clinical trials that encompasses
significant amounts of basic research with humans. This NIH action
ignores over 3,500 comments critical of this change, the opposition of
35 current and former members of NIH Advisory Councils (as conveyed in
a letter to Director Collins), and concerns expressed by the Committee
in its fiscal year 2018 Conference report language. Basic research by
definition is aimed at furthering knowledge about underlying processes
and conditions involved in a particular phenomenon. Clinical trials are
explicitly designed to test the safety and effectiveness of treatment
or prevention interventions on health outcomes. The new definition of
clinical trial encompasses basic research studies which are not
traditionally considered to be a clinical trial by NIH or by the
scientific community. With this definition, NIH subjects entire areas
of basic research to inappropriate and unnecessary requirements that
add significantly to the cost and time of each project and also create
a significant economic burden for university and government review and
training programs. To help reverse this policy change, we urge the
following fiscal year 2021 report language in the NIH Office of the
Director:
Clinical Trials Policy.--The Committee supports the NIH delay of
implementation of registering and reporting requirements for basic
experimental studies with humans and notes that the fiscal year 2020
Conference Agreement asked NIH to continue to work with the basic
research community to achieve a balanced registration and reporting
strategy that meets the interests of study participants, investigators,
and taxpayers. The NIH policy to require all basic research involving
humans to register and apply for funding as a clinical trial has been
objected to by the community, as it creates additional red tape and
costs that are unnecessary to meet the shared goal of transparency. NIH
is directed to not classify basic research involving humans as clinical
trials and to work with the community to develop an alternative
registering and reporting system that will meet the shared goals of
transparency and oversight. The Committee further requests a report
that describes the new plan within 60 days of this bill being enacted
into law.
Behavioral Science at NIH
The NIH mission is to ``seek 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.''
However, increasingly, APS has concerns about the status of behavioral
science at NIH, specifically regarding the continued disparity between
the central role of behavior in all areas of health and the low level
of direct support for basic and applied behavioral science research and
training at NIH. APS therefore requests that the following language be
included in your report directing the Director of NIH to convene a
special advisory panel of behavioral scientists and other scientific
community experts to complete an assessment providing recommendations
on how to better integrate and realize the benefits to overall health
from behavioral research at NIH:
Behavioral Research.--The Committee believes that a more robust and
focused NIH commitment to behavioral science research and training
would yield significant improvements to the Nation's health due to the
important connections between behavior and health. Most of the leading
public health issues facing our nation-including cancer, addiction,
heart disease, mental illness, diabetes, violence, and AIDS--are rooted
in individual and social behavior, yet behavioral science is
decentralized across NIH's institutes and the NIH commitment to manage
and directly fund this important research is limited. The Committee
therefore requests that the Director convene a special advisory panel
of behavioral scientists and other community experts to complete an
assessment providing recommendations on how to better integrate and
realize the benefits to overall health from behavioral research at NIH.
The Committee requests that this assessment be finalized before the end
of fiscal year 2021 and be submitted to Congress.
APS notes that the ongoing coronavirus pandemic provides a key
illustration of the important connections between behavior and health.
Basic behavioral science research informs relevant topics ranging from
perceptions of risk and decisionmaking to individual and group social
processes and behavior. Psychological scientists study the science of
behavior change and how to encourage individuals to adopt behavioral
practices or adapt existing ones. Clinical psychological scientists
examine issues of mental illness, which may be widespread in emergency
contexts. Behavioral science can also determine ways to implement
behavior-based interventions to help contain the spread of the virus.
APS believes that the scientific community would be better prepared to
study, understand, predict, and guide behavior related to the
coronavirus if behavioral science research and funding were better
supported and centralized at NIH.
updating hrsa and national health service regulations
APS urges the Committee to favorably consider the requests of the
Psychological Clinical Science Accreditation System (PCSAS) to urge the
modification of HRSA and National Health Service Corps regulations to
permit the graduates of PCSAS accredited schools to be eligible for
employment in these programs. APS believes that the strong emphasis on
science in PCSAS accreditation offers promise of improved prevention
and treatment interventions which will strengthen HRSA and the National
Health Service Corps programs. Prior to 2012, the American
Psychological Association (APA) was the only accrediting body for
clinical psychology programs, and therefore many agency regulations are
outdated and refer to the program eligibility need for APA
accreditation. This historical artifact needs to be updated for many
programs, including those of HRSA and the National Health Service
Corps. The language needed to urge these changes follows:
Health Workforce Eligibility Requirements.--The Committee notes
that the eligibility requirements for the Behavioral Health Workforce
and Training Program and the Graduate Psychology Education Program need
to be updated for accreditation changes that have occurred since the
eligibility requirements were established. The eligibility requirements
of these two programs require that applicants must be accredited by
accrediting organizations recognized by the Department of Education.
This fails to recognize the well-established and respected Council for
Higher Education Accreditation (CHEA), which has 3,000 university
members and accredits over 60 different accrediting bodies. In
September 2012, CHEA recognized the Psychological Clinical Science
Accreditation System (PCSAS), which has since that date has accredited
43 clinical psychological doctoral programs which are all recognized to
be among the 50 top programs in clinical psychology in the country. We
note that the Department of Veterans Affairs recognized PCSAS in 2016.
That is, PCSAS is already federally recognized. In order to insure that
HRSA's health workforce programs continue to have access to the best
qualified applicants, including those who graduate from PCSAS programs,
the Committee urges HRSA to make administrative accommodations to
accomplish this necessary update similar to the accommodations HRSA has
provided for other similarly situated professions.
Clinical Psychological Training for Public Health Service Corps.--
The Committee supports the review by the Surgeon General's office to
update HHS regulations to permit the graduates of the 43 doctoral
programs in clinical psychology accredited by the Psychological
Clinical Science Accreditation System (PCSAS) to be employed by the
Public Health Service Corps. This update is necessary as PCSAS was
recognized in September 2012 by the Council for Higher Education
Accreditation (CHEA) and now accredits 43 programs that are among the
highest ranked clinical psychology program in the country. The Veterans
Administration, the Association of Psychological Postdoctoral and
Internship Centers, and others have already updated their regulations
to permit the employment of the graduates of PCSAS accredited programs.
The Committee urges that the Surgeon General's office finalize and
implement these changes as soon as possible.
summary and conclusion
Chairman Blunt, again we wish to thank the Subcommittee for its
past leadership. We believe that reducing barriers to research and
training in behavioral science is warranted by the central role of
behavior in many of our most pressing health problems and by the
enormous potential of psychological science and other behavioral
science disciplines to reduce the suffering experienced by the millions
of people with behavior-based conditions. APS shares your commitment to
addressing the health needs of the Nation and appreciates the
opportunity to provide this testimony.
[This statement was submitted by Sarah Brookhart, Executive
Director,
Association for Psychological Science.]
______
Prepared Statement of the Association for Research in Vision and
Ophthalmology
executive summary
The Association for Research in Vision and Ophthalmology (ARVO), on
behalf of the vision research community, thanks Congress, especially
the House and Senate Appropriations Subcommittees on Labor, Health and
Human Services, Education, and Related Agencies (LHHS), for the strong
bipartisan support for the National Institutes of Health (NIH) funding
increases from fiscal years 2016 through fiscal year 2020. The $11.6
billion NIH increase has helped the agency regain some of the ground
lost after years of effectively flat budgets. ARVO also thanks Congress
for the bipartisan agreements that provide supplemental appropriations
for NIH as the research community responds to COVID-19.
ARVO urges Congress to continue this support and urges Congress to
appropriate $44.7 billion for the NIH in fiscal year 2021, a $3 billion
or 7.2 percent increase over the fiscal year 2020 program level and
allowing for--
--meaningful growth above inflation in the base budget to support
promising science across all NIH Institutes and Centers;
--funding from the Innovation Account established through the 21st
Century Cures Act, which would supplement NIH's base budget, as
intended, through dedicated funding for specific programs and
funding for early-stage investigators.
Due to the strain COVID-19 is placing on the research
infrastructure and strict limits of the fiscal year 2021 discretionary
spending caps, ARVO supports bipartisan proposals to exempt NIH from
the fiscal year 2021 caps. ARVO also requests that the LHHS bill is
structured to facilitate emergency funding, as necessary, to maintain
the momentum of research emerging from past NIH investment such that
the return-on-investment is fully realized with new diagnostics and
therapies.
ARVO also urges Congress to appropriate $875 million for the
National Eye Institute (NEI), a $51 million or 6.2 percent increase
over enacted fiscal year 2020. The NEI is the world leader in sight-
saving and vision-restoring research. Congress must ensure robust NEI
funding to continue to address the challenges of The Decade of Vision
2010-2020--as recognized by Congress in H. Res. 366 in 2009--which
include an aging population, disproportionate risk/incidence of eye
disease in fast-growing minority populations, and the impact on vision
from numerous chronic diseases and their treatments/therapies.
Despite the total fiscal year 2016-2020 funding increases of $146
million, NEI's enacted fiscal year 2020 budget of $824.1 million is
just 21 percent greater than the pre-sequester fiscal year 2012 budget
of $702 million. Averaged over the eight fiscal years, the 2.6 percent
annual growth rate is less than the average annual biomedical inflation
rate of 2.8 percent, thereby eroding purchasing power, which in fiscal
year 2019 was below that of fiscal year 2012 and equivalent to that in
fiscal year 2000. Maintaining the momentum of vision research is vital
to vision health, as well as overall health and quality of life. Since
the U.S. is the world leader in vision research and training the next
generation of vision scientists, the health of the global vision
research community is also at stake.
ARVO recognizes that due to the pandemic, the NEI now faces
additional challenges, as both the working-age population and students
may potentially rely exclusively on electronic devices and e-learning
platforms well into our new normal. As increased rates of myopia, dry
eye, and eye strain are associated with lengthy exposure to these
devices, NEI research will be instrumental in ensuring eye health is
continually prioritized throughout the continuum of life.
nei leads in genetic and regenerative medicine research
The NEI has been a leader in genetics/genomics research and
regenerative medicine.
--Genetics/Genomics: Vision researchers worldwide participating in
NEI's Glaucoma Genetics Collaboration Heritable Overall
Operational Database (NEIGHBORHOOD) Consortium have identified
133 genetic variants that predict within 75 percent accuracy a
person's risk for developing glaucoma related to elevated
intraocular pressure (IOP). Among the 133 variants, 68 had not
been previously linked to IOP, and their loci point to cellular
processes, such as lipid metabolism and mitochondrial function,
that contribute to IOP. By understanding these cellular
processes that can increase IOP and cause optic nerve damage,
clinicians may be able to make an earlier diagnosis and
researchers may be able to develop neuroprotective therapies to
potentially halt disease progression.
--NEI-funded research has also made discoveries of dozens of rare eye
disease genes possible, including the discovery of RPE65, which
causes congenital blindness called Leber congenital amaurosis
(LCA). As of late 2017, NEI's initial efforts led to a
commercialized, Food and Drug Administration (FDA)-approved
gene therapy for this condition. These gene-based discoveries
are forming the basis of new therapies that treat the disease
and potentially prevent it entirely. Success in this field is
driving now similar promising research for the most common
blinding diseases, such as Age-related macular degeneration
(AMD).
--Regenerative Medicine: NEI is at the forefront of regenerative
medicine with its Audacious Goals Initiative (AGI) for
Regenerative Medicine, which launched in 2013 with the goal of
restoring vision. Initially asking a broad constituency of
scientists within the vision community and beyond to consider
what could be done if researchers employed this new era of
biology, the AGI currently funds major research consortia that
are developing innovative ways to image the visual system.
Researchers can now look at individual nerve cells in the eyes
of patients in an examination room and learn directly whether
new treatments are successful. Another consortium is
identifying biological factors that allow neurons to regenerate
in the retina. In addition, the AGI is gathering considerable
momentum to develop disease models that may result in clinical
trials for therapies within the next decade.
--In late 2019, NEI began a first-in-human clinical trial that tests
a stem cell-based therapy from induced pluripotent stem cells
(iPSC) to treat geographic atrophy, also known as the ``dry''
form of Age-related Macular Degeneration (AMD), the leading
cause of vision loss among people age 65 and older. This trial
converts a patient's own blood cells to iPSCs, which are then
programmed to become retinal pigment epithelial (RPE) cells.
RPE cells nurture and keep alive the photoreceptor cells
necessary for vision but die in geographic atrophy causing the
loss of photoreceptors and vision and cannot be replaced by the
retina itself. The new therapy replaces dying RPE with iPSC-
derived RPE cells keeping remaining photoreceptors alive and
thereby stopping the loss of vision.
nei funding demonstrates signifigant return on investment
Optical coherence tomography (OCT) is a technology developed with
Federal research funding through the NIH, which has led to significant
cost savings by helping to diagnose conditions that lead to vision loss
among patients more efficiently. In 2017, ARVO shared the story of OCT,
including the significant associated cost savings:
--$9 billion: Medicare savings from clinicians using OCT to optimize
the injection schedule of anti-VEGF drugs for patients with
wet-AMD
--$2.2 billion: Wet-AMD patient savings from reduced spending on drug
copays
--$0.4 billion: Total investment over 20 years made by NIH and NSF to
invent and develop the technology
--2,100%: Return on taxpayer investment [http://www.ajo.com/article/
S00029394(17)30419-1/fulltext]
congress must robustly fund the nei as it addresses the increasing
burden of vision impairment and eye disease
NEI's fiscal year 2020 enacted budget of $824.1 million is less
than 0.5 percent of the $167 billion annual cost (inclusive of direct
and indirect costs) of vision impairment and eye disease, which was
projected in a 2014 Prevent Blindness study to grow to $317 billion--or
$717 billion in inflation-adjusted dollars--by year 2050. Of the $717
billion annual cost of vision impairment by year 2050, 41 percent will
be borne by the Federal Government as the Baby-Boom generation ages
into the Medicare program. A 2013 Prevent Blindness study reported that
direct medical costs associated with vision disorders are the fifth
highest--only less than costs associated with heart disease, cancers,
emotional disorders, and pulmonary conditions. The U.S. is spending
only $2.50 per-person, per-year for vision research, while the cost of
treating low vision and blindness is at least $6,680 per-person, per-
year. [http://costofvision.preventblindness.org/].
In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
reported that the number of people with legal blindness will increase
by 21 percent each decade to 2 million by 2050, while best-corrected
visual impairment will grow by 25 percent each decade, doubling to 6.95
million people--with the greatest burden affecting those 80 years or
older. [http://jamanetwork.com/journals/jamaophthalmology/article-
abstract/2523780?resultClick=1].
Investing in vision health is an investment in overall health.
NEI's breakthrough research is a cost-effective investment, since it
leads to treatments and therapies that may delay, save, and prevent
health expenditures. It can also increase productivity, help
individuals to maintain their independence, and generally improve the
quality of life--as vision loss is associated with increased depression
and accelerated mortality.
In summary, ARVO requests fiscal year 2021 NIH funding of at least
$44.7 billion and NEI funding of $875 million. We also thank the
Subcommittee for the opportunity to submit this written testimony,
especially as it assesses current and future challenges associated with
the COVID-19 pandemic.
The Association for Research in Vision and Ophthalmology (ARVO) is
the largest eye and vision research organization in the world. Members
include nearly 12,000 eye and vision researchers from over 75
countries. ARVO advances research worldwide into understanding the
visual system and preventing, treating and curing its disorders.
______
Prepared Statement of the Association of American Cancer Institutes
The Association of American Cancer Institutes (AACI), representing
100 premier academic and freestanding cancer centers across the nation,
appreciates the opportunity to submit this statement for consideration
by the subcommittee. Jennifer Pegher, Executive Director of AACI,
submits this request for the Department of Health and Human Services
budget for the National Institutes of Health (NIH) as the subcommittee
aims to begin considering fiscal year 2021 funding. AACI requests a $3
billion increase for the NIH for fiscal year 2021, bringing the
recommended funding level for the NIH to $44.7 billion. This proposed
level of NIH funding would ensure that academic cancer centers
conducting lifesaving research can continue to discover and deliver new
therapies for patients with cancer.
aaci cancer centers
AACI cancer centers are beacons of discovery, largely funded by the
NIH and National Cancer Institute (NCI). In order to ensure continued
progress, these agencies rely on stable, predictable Federal funding to
invest in groundbreaking cancer research.
Cancer centers develop and deliver state-of-the-art therapies and
provide comprehensive care, from prevention to survivorship, to
patients. These centers are at the forefront of the national effort to
eradicate cancer, yet progress in cancer research is complex and time-
intensive. However, the pace of discovery and translation of novel
basic research to new therapies could be accelerated if researchers
could count on an appropriate and predictable investment in Federal
cancer funding.
According to the American Cancer Society, the mortality rate from
cancer in the United States has declined 29 percent since its peak in
1991. This translates to more than 2.9 million deaths avoided between
1991 and 2017--progress tied to the commitment of Congress to fund the
NIH and NCI. AACI appreciates the commitment of Congress to steadily
increase NIH funding since fiscal year 2013. We hope Congress will
continue that commitment in fiscal year 2021.
With excitement mounting about the scientific opportunities ahead
and our potential to leverage the resulting advances to benefit cancer
patients nationwide, it is imperative that Congress robustly funds the
agencies responsible for advancing cancer research. The broad portfolio
of science supported by the NIH and NCI is essential for improving our
basic understanding of cancer and has contributed to the health and
well-being of Americans.
the president's fiscal year 2021 budget proposal
AACI cancer centers believe the partnership between the Federal
Government and academic cancer centers is critical, and cancer centers
continue to make strides in biomedical research thanks to the support
of the Federal Government. Without such support, research projects with
the potential to discover breakthrough therapies would not be possible.
The drastic cuts to the NIH and NCI outlined in the fiscal year
2021 budget proposed by President Trump on February 10 would be a major
setback for cancer research. We believe the proposed, roughly $3
billion, cut to the NIH budget is a step in the wrong direction. In
order to sustain and accelerate progress against cancer, we must
continue to increase NIH funding.
payline
Uncertainty surrounding research project grants (R01s) from year to
year and a decline in cancer center resources often drives promising
scientists to explore opportunities abroad or outside of the biomedical
research community. For most academic cancer centers, the majority of
NCI grant funds are used to sustain shared core resources that are
essential to basic, translational, clinical, and population cancer
research, or to provide matching dollars that allow departments to
recruit new cancer researchers to a university and support them until
they receive their first grants. It is imperative that we enable
America's scientists to master their craft.
For fiscal year 2020, R01 grants for established and new
investigators are being funded to the 10th percentile, up from the 8th
in fiscal year 2019. Though the funding rate is still below the 15th
percentile target, moving back into the double digits is a welcome sign
of progress. However, the NCI's grant success rate has not kept pace
with other NIH institutes, which have an average success rate around 19
percent, suggesting there is still work to do.
conclusion
Now is the time for Congress to invest in biomedical research in
general and cancer research in particular. According to the American
Cancer Society, there will be an estimated 1.8 million new cancer cases
diagnosed in the United States in 2020. Fortunately, improvements in
early detection, cancer staging, and surgical techniques, as well as
the development of innovative therapies, have contributed to better
outcomes for patients with cancer. AACI joins our colleagues in the
biomedical research community in recommending that the subcommittee
recognize the NIH as a national priority by enacting a final fiscal
year 2021 spending package that includes $44.7 billion for the NIH and
$6.9 billion for the NCI.
A robust Federal investment in our nation's NCI-Designated Cancer
Centers and academic cancer centers will allow the cancer research
community to build on decades of momentum to make continued progress
against cancer.
[This statement was submitted by Jennifer Pegher, Executive
Director,
Association of American Cancer Institutes.]
______
Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges (AAMC) is a not-for-
profit association dedicated to transforming healthcare through
innovative medical education, cutting-edge patient care, and
groundbreaking medical research. Its members comprise all 155
accredited U.S. and 17 accredited Canadian medical schools; nearly 400
major teaching hospitals and health systems, including 51 Department of
Veterans Affairs medical centers; and more than 80 academic societies.
Through these institutions and organizations, the AAMC serves the
leaders of America's medical schools and teaching hospitals and their
173,000 full-time faculty members, 89,000 medical students, 129,000
resident physicians, and more than 60,000 graduate students and
postdoctoral researchers in the biomedical sciences.
The COVID-19 pandemic has illustrated how sustained support for the
research, education, and patient care missions of medical schools and
teaching hospitals is essential to ensure a resilient healthcare
infrastructure that is prepared to respond to both novel and existing
threats. The AAMC is grateful to Congress for investments made through
supplemental emergency funding packages to date, which take important
steps to provide relief for healthcare providers and critical safety
net providers, including major teaching hospitals and faculty
physicians, for both increased clinical spending and losses associated
with COVID-19; for expansion of testing capacity and contact tracing;
for additional student loan relief and funding for higher education.,
and for additional COVID-19-related medical research. We look forward
to continuing to work with lawmakers as discussions around additional
emergency funding needs progress.
To continue to fulfill these important missions over the long-term,
the AAMC requests continued support through the regular appropriations
process as well for the following Federal priorities essential in
assisting medical schools and teaching hospitals to fulfill their
missions of education, research, and patient care in fiscal year 2021:
$44.7 billion for the National Institutes of Health (NIH), including
funds provided through the 21st Century Cures Act for targeted
initiatives; $460 million in budget authority for the Agency for
Healthcare Research and Quality (AHRQ); $790 million for the Title VII
health professions and Title VIII nursing workforce development
programs, and $465 million for the Children's Hospitals Graduate
Medical Education (CHGME) program, at the Health Resources and Services
Administration (HRSA)'s Bureau of Health Workforce; and continued
support for student aid through the Department of Education. The AAMC
appreciates the Subcommittee's longstanding, bipartisan efforts to
strengthen these programs.
We recognize the constraints the committee faces as a result of the
fiscal year 2021 discretionary spending cap. To enable the necessary
support for the broad range of critical Federal priorities, the AAMC
urges Congress to exempt key programs that support the nation's COVID-
19 response from the fiscal year 2021 caps, and also to approve a
funding allocation for the Labor-HHS subcommittee that enables full
investment in the priorities outlined below.
National Institutes of Health. Congress's longstanding bipartisan
support for medical research 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. Over half of the
life-saving research supported by the NIH takes place at 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. This partnership is a unique
and highly productive relationship, one that lays the foundation for
improved health and quality of life and strengthens the nation's long-
term economy.
The AAMC thanks Congress for the bipartisan support that resulted
in the inclusion of $41.7 billion in the fiscal year 2020 omnibus
spending bill for medical research conducted and supported by the NIH,
which builds off meaningful increases for NIH since fiscal year 2016.
Additionally, the AAMC thanks the Subcommittee for recognizing the
importance of retaining the salary cap at Executive Level II of the
Federal pay scale. The AAMC is concerned that proposals to undermine
salary support would limit the number of grantees with sufficient funds
to conduct research and ultimately weaken research nationwide. This
consequence would directly counter the Subcommittee's efforts over the
years to strengthen the nation's research enterprise.
In fiscal year 2021, the AAMC supports the Ad Hoc Group for Medical
Research recommendation that Congress provide $44.7 billion for NIH,
including funds provided through the 21st Century Cures Act for
targeted initiatives. This funding level would continue the momentum of
recent years by enabling meaningful base budget growth over biomedical
inflation to help ensure stability in the nation's research capacity
over the long term. Securing a reliable, robust budget trajectory for
NIH is key in positioning the agency--and the patients who rely on it--
to capitalize on the full range of research in the biomedical,
behavioral, social, and population-based sciences.
Scientific discoveries rely on support from Congress. We must
continue the current trajectory if we are to strengthen our nation's
research capacity and solidify our global leadership in medical
research, ensure a biomedical research workforce that reflects the
racial and gender diversity of our citizenry, and inspire a passion for
science in current and future generations of researchers.
Agency for Healthcare Research and Quality.--Complementing the
medical research supported by NIH, AHRQ sponsors health services
research designed to improve the quality of healthcare, decrease
healthcare costs, and provide access to essential healthcare services
by translating research into measurable improvements in the healthcare
system. 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. The AAMC joins the Friends of AHRQ in
recommending $471 million in budget authority for AHRQ in fiscal year
2021.
Health Professions Funding.--HRSA's Title VII health professions
and Title VIII nursing workforce development programs allow grantees to
test educational innovations, respond to changing delivery systems and
models of care, and are instrumental to increasing the supply,
distribution, and diversity of the healthcare workforce. These programs
improve access to and quality of care for vulnerable populations--
including elderly, children and families living on low incomes and in
rural and underserved communities. Additionally, as we face ever-
changing public health threats impacting patients across the country,
such as COVID-19, continued investment in Titles VII and VIII programs
is essential to addressing the health challenges of today and the
future.
Through loans and scholarships to students, and grants and
contracts to academic institutions and non-profit organizations, these
programs fill the gaps in the supply of health professionals not met by
traditional market forces. The full spectrum of Title VII programs,
from workforce diversity programs to geriatric programs, is essential
in preparing medical professionals to adapt to the changing needs of
the nation's aging and diverse population. Studies demonstrate that the
programs graduate more minority and disadvantaged students and prepare
providers that are more likely to practice in rural and underserved
areas.
The Title VII and Title VIII programs also support faculty
development, curriculum development, and continuing education
opportunities. These are all essential 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
$790 million for these critical workforce programs in fiscal year 2021.
In addition to funding for Title VII and Title VIII, HRSA's Bureau
of Health Workforce also supports the CHGME program, which provides
critical Federal graduate medical education support for children's
hospitals to prepare the future primary care and specialty care
workforce for our nation's children. We support $465 million for the
CHGME program in fiscal year 2021. We also encourage Congress to
provide robust funding to the Rural Residency Program, providing
funding to rural residency tracks, encouraging future physicians to
practice in those communities.
The AAMC encourages Congress to provide long-term sustained funding
for the National Health Service Corps, through its mandatory and
discretionary mechanisms. We support $490 million in total funding for
the program in fiscal year 2021. This $60 million (14 percent) increase
is the first stage of a 5-year systematic doubling of the NHSC to meet
the needs of all federally designated health professions shortage
areas. 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.
Additional Programs.--The AAMC supports robust, sustained funding
for public health infrastructure to begin to reverse years of chronic
underfunding. In addition to increased funding for the Centers for
Disease Control and Prevention, the AAMC recommends at least $474
million for the Hospital Preparedness Program, as well as $40 million
to continue the regional preparedness program created to address Ebola
and other special pathogens, including funding for regional treatment
centers, frontline providers, and the National Ebola Training and
Education Center (NETEC). The AAMC appreciates that the president's
fiscal year 2021 budget proposal requests $4 million to support grants
to medical schools and teaching hospitals to develop curricular
resources on medication-assisted treatment. The AAMC supports the
programs authorized under Sections 3202 and 7101 of the SUPPORT Act
(Public Law 115-271) to enhance medical education, and we encourage
their full funding.
The AAMC urges the Subcommittee to sustain student loan and
forgiveness programs for health professions students at the Department
of Education, including GradPLUS loans and Public Service Loan
Forgiveness (PSLF). With doctors, residents, fellows, and medical
students on the front lines of COVID-19, it is imperative that these
health professions are rewarded for their public service, and make sure
there are affordable loans to fund a student's medical education. The
average graduating debt of medical students is currently $200,000, and
total repayment can range from $365,000 to $440,000.
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 2021 spending bill.
______
Prepared Statement of the Association of Farmworker
Opportunity Programs
Chairman Blunt and Ranking Minority Member Murray:
Thank you for the opportunity to present to you and your
subcommittee the testimony of the Association of Farmworker Opportunity
Programs (AFOP) in support of the nation's more than 50-year commitment
to providing eligible agricultural workers the opportunity to achieve
the American Dream for themselves and their families. As you begin work
on your fiscal year 2021 Labor-Health and Human Services-Education
appropriations bill, AFOP encourages you to build on the foundations
laid by the highly successful programs described below by adequately
funding them in the coming fiscal year: National Farmworker Jobs
Program (NFJP), United States Department of Labor (DOL) Employment and
Training Administration ($98,896,000); and Susan Harwood Training
Grants, DOL Occupational Safety and Health Administration
($10,537,000). Not only do these programs maximize the Federal
Government's investment in them, they also generate for employers the
qualified and healthy workers essential to their growth. These programs
also dramatically change peoples' lives for the better, often in rural
areas, allowing them to enjoy economic success and participate more
fully in our great nation. Thank you for supporting these very
effective programs and the excellent results they bring for society's
most vulnerable.
national farmworker jobs program
NFJP is the bedrock of the nation's commitment to helping
agricultural workers upgrade their skills in and outside agriculture,
providing employers with what they increasingly say they need:
hardworking, committed, well-trained, skilled workers. Administered by
DOL, NFJP provides funding through a competitive grant process to 52
community-based organizations and public agencies nationwide that
assist workers and their families to attain greater economic stability.
One of DOL's most successful employment training programs, NFJP helps
agricultural workers acquire the new skills they need to start careers
that offer higher wages and a more stable employment outlook. In
addition to employment and training services, the program provides
supportive services that help agricultural workers retain and stabilize
their current agriculture jobs, as well as enable them to participate
in up-training and enter new careers. NFJP housing assistance helps
meet a critical need for the availability and quality of agricultural
worker housing, and supports better economic outcomes for workers and
their families. NFJP also facilitates the coordination of services
through the American Job Center network for agricultural workers so
they may access other services of the public workforce system.
The agricultural workers who come to NFJP seek training to secure
and excel in the in-demand jobs employers say they find challenging to
fill. In doing so, the workers establish the financial foundation that
allows them and their families to escape the chronic unemployment and
underemployment they face each year. Many NFJP participants enter
construction, welding, healthcare, and commercial truck-driving. Others
train for the solar/wind energy sector, culinary arts, and for
positions such as machinists, electrical linemen, and a variety of
careers in and outside of agriculture. To be eligible for NFJP, workers
must be low-income, depend primarily on agricultural employment, and
provide proof of American citizenship or work authorization.
Additionally, male applicants must have registered with the Selective
Service.
Agricultural workers are some of the hardest working individuals in
this country, enduring tremendous physical and financial hardships in
providing produce Americans eat every day. Yet, agricultural workers
remain among the nation's most vulnerable employees and job seekers,
facing significant barriers to work advancement, including:
--The average agricultural worker family of four earns just $20,000
per year, well below the national poverty line.
--English-language fluency is a substantial challenge for many.
--More than half the children of migratory agricultural workers drop
out of school, and, among all agricultural workers, the median
highest grade completed is 9th grade (National Agricultural
Workers Survey).
--Due to poverty and their rural locations, most agricultural workers
have extremely limited access to transportation.
Despite these barriers, NFJP continues to be one of the most
successful Federal job training programs, exceeding all DOL's goals. In
2018 alone, NFJP service organizations provided more than 10,000
agricultural workers with services, according to DOL. These NFJP
providers have served more than an estimated 150,000 agricultural
workers and their family members over the last 10 years. Funding
program this year at $98,896,000 would allow NFJP to train even more
dependable, capable workers to take on the nation's most challenging
jobs. Also, consistent appropriations for youth agricultural workers
(ages 14- to 24-years) will allow this cohort, so often overlooked and
ignored by anti-poverty programs, to stay in school, and, if not in
school, to avail themselves of crucial training to get a good job and
establish themselves as productive and successful members of society.
agricultural worker health & safety
AFOP also recommends continued appropriations for the DOL
Occupational Safety and Health Administration Susan Harwood grant
program, through which AFOP has augmented pesticide safety training
with curricula to help workers recognize and avoid the dangers of heat
stress so common in the fields. In supporting this funding, you can arm
the nation's agricultural workers with the knowledge they need to keep
themselves safe on the job. The NFJP network of some 257 trainers in 30
states trains agricultural workers on how to protect against pesticide
poisoning and heat stress. Trainers then follow up with agricultural
workers to assess knowledge gained and retained, and changes in labor
practice. Since 1995, more than 492,000 agricultural workers have
become certified as trained in safety precautions, and hundreds of
thousands of family members, children, and community agencies have also
received safety training. The network collaborates with universities,
community organizations, local governments, and businesses to maximize
its unparalleled access to agricultural workers and their families. By
reaching agricultural workers with heat stress prevention and pesticide
safety training, the network's trainers offer access to other services
and create a ripple effect of positive impact--improving the quality of
life for agricultural workers and their families--which is what NFJP
organizations do best.
Thank you for supporting these worthy programs. AFOP stands ready
to assist you in any way as you proceed with your very important work.
[This statement was submitted by Daniel J. Sheehan, Executive
Director,
Association of Farmworker Opportunity 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 improve
our nation's health, sustain our leadership in medical research, and
remain competitive in today's global information and innovation-based
economy. AIRI urges the Subcommittee to provide NIH with at least $44.7
billion in fiscal year 2021. AIRI also urges the Subcommittee to reject
the harmful investigator salary cap policies proposed in the
President's fiscal year 2020 budget request, as any changes to salary
policy would disproportionately impact independent research institutes.
First, we would like to deeply thank the Subcommittee for providing
another increase of $2.6 billion for NIH in the fiscal year 2020
minibus appropriations bill. The Subcommittee's support of NIH is
strongly demonstrated by these much-needed funds for life-saving
biomedical research. However, there is still much more to do. NIH is
tackling vast, interdisciplinary problems such as the opioid crisis,
the development of a universal flu vaccine, and Alzheimer's disease. In
addition, the ongoing public health crisis associated with the
coronavirus outbreak and COVID-19 pandemic reminds us that now is not
the time to pull back or slow down on needed investments in the
nation's biomedical research ecosystem. Continued budget certainty is
needed for the agency to predictably fund new and ongoing grants and
consider new initiatives necessary to improving human health. NIH will
also begin to explore how emerging technologies such as artificial
intelligence and machine learning can provide opportunities to deepen
our understanding of chronic diseases and systemic health inequities,
and advance clinical care. To ensure cutting-edge research at
independent research institutes is not disrupted, AIRI strongly
supports a topline of $44.7 billion for NIH in fiscal year 2021.
AIRI is a national organization of more than 90 independent, non-
profit research institutes that perform basic and clinical research in
the biological and behavioral sciences. AIRI institutes vary in size,
with budgets ranging from a few million to hundreds of millions of
dollars. In addition, each AIRI member institution is governed by its
own independent Board of Directors, which allows our members to focus
on discovery-based research while remaining structurally nimble and
capable of adjusting their research programs to emerging areas of
inquiry. Investigators at independent research institutes consistently
exceed the success rates of the overall NIH grantee pool, and they
receive about 10 percent of NIH's peer-reviewed, competitively awarded
extramural grants.
The partnership between NIH and America's scientists, research
institutions, universities, and medical schools is unique and highly-
productive, leveraging the full strength of our nation's research
enterprise to foster discovery, improve our understanding of the
underlying cause of disease, and develop the next generation of medical
advancements that deliver more treatments and cures to patients.
Not only is NIH research essential to advancing health, it also
plays a key economic role in communities nationwide. In fiscal year
2019, NIH invested $30.82 billion, or almost 80 percent of its budget,
in the biomedical research community. This investment supported more
than 476,000 jobs nationwide and generated nearly $81 billion in
economic activity across the U.S.\1\ AIRI member institutes are
particularly relevant in this regard, as they are located across the
country, including in many smaller or less-populated states that do not
have major academic research institutions. In many of these regions,
independent research institutes are major employers and local economic
engines, and they exemplify the positive impact of investing in
research and science.
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\1\ NIH's funding information and economic impact data comes from
United for Medical Research's 2020 State-By-State Update, https://
www.unitedformedicalresearch.org/wp-content/uploads/2019/04/NIHs-Role-
in-Sustaining-the-US-Economy-FY19-FINAL-2.13.2020.pdf.
---------------------------------------------------------------------------
The NIH model for conducting biomedical research, which involves
supporting scientists at universities, medical centers, and independent
research institutes, provides an effective approach to making
fundamental discoveries in the laboratory that can be translated into
medical advances that save lives. AIRI member institutions are private,
stand-alone research centers that set their sights on the vast
frontiers of medical science. However, AIRI member institutes are
especially vulnerable to reductions in the NIH budget, as they do not
have other reliable sources of revenue to make up the shortfall.
AIRI opposes the harmful investigator salary proposal in the
President's fiscal year 2021 budget that would reduce the salary cap to
Executive Level V from Executive Level II for extramural researchers.
This policy would disproportionately affect early-career investigators
and independent research institutes and hinder AIRI members' ability to
recruit and retain talented researchers. The caps also negatively
affect the confidence of future researchers in the viability of a
career in biomedical sciences, severely harming the competitiveness and
capacity of the U.S. biomedical enterprise.
The Federal Government has an irreplaceable role in supporting
investigators and medical research. No other public, corporate, or
charitable entity is willing or able to provide the broad and sustained
funding for the cutting-edge research necessary to yield new
innovations and technologies of the future. NIH supports long-term
competitiveness for American workers, forming one of the key
foundations for U.S. industries like biotechnology, medical devices,
and pharmaceutical development, among others. Unfortunately, any
erosion to the national commitment to medical research could threaten
our ability to support a medical research enterprise that takes full
advantage of existing and emerging scientific opportunities.
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 nation.
AIRI deeply 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 continue the success of NIH by
providing $44.7 billion in fiscal year 2021 and reaffirming support for
NIH's current investigator salary policies to strengthen our nation's
investment in life-saving medical research.
______
Prepared Statement of the Association of State and
Territorial Health Officials
On behalf of the Association of State and Territorial Health
Officials (ASTHO), I respectfully submit this testimony on fiscal year
2021 appropriations to the U.S. Department of Health and Human Services
(HHS). ASTHO is requesting $8.3 billion for the Centers for Disease
Control and Prevention (CDC), including $824 million for the Public
Health Emergency Preparedness Program (PHEP), and $170 million for the
Preventive Health and Health Services Block Grant (Prevent Block
Grant). Under the Assistant Secretary for Preparedness and Response
(ASPR), we are requesting $474 million for the Hospital Preparedness
Program (HPP) and $45.6 million to sustain the Regional Treatment
Network for Ebola and Other Special Pathogens (RTNESP) and the National
Ebola Training and Education Center (NETEC). Additionally, we are
requesting $8.8 billion in discretionary funding for the Health
Resources and Services Administration (HRSA) and $2 million to support
a study by the National Academies of Sciences, Engineering, and
Medicine to understand opportunities to improve the health of U.S.
territories and freely associated states, given the health disparities
that exist within those populations and the critical role our
territories and freely associated states play in our nation's health
security. Additionally, we are seeking a $500 million increase for the
Substance Abuse and Mental Health Services Administration (SAMHSA)
Substance Abuse Prevention and Treatment (SAPT) Block Grant to support
state and territorial efforts to address the opioid epidemic and the
continued need to prevent addiction in our states and territories.
ASTHO is the national nonprofit organization representing the
public health agencies of the United States, the U.S. territories and
freely associated states, and the District of Columbia. ASTHO members,
the chief health officials of these jurisdictions, are dedicated to
ensuring excellence in public health practice. The mission of our
nation's governmental health agencies is to protect and improve the
health of the population, everywhere, every day. The work of public
health is often invisible, and sometimes it is only in a crisis when
the value and importance of sustained investment in public health
becomes apparent. Those crises, unfortunately, happen all too often:
the current 2019 novel coronavirus (COVID-19) outbreak, measles and
hepatitis A outbreaks, natural disasters, rising obesity rates, the
opioid epidemic, and many others highlight the important work of
disease prevention and health protection that is at the core of public
health's mission.
Just like our transportation system, our healthcare system, and our
air traffic control system, the governmental public health system needs
a predictable, sustained, and increased investment to deliver the
essential public health services all Americans expect and enjoy. We
appreciate Congress providing increased public health funding in the
fiscal year 2020 appropriations bills and we acknowledge the non-
defense discretionary caps do not significantly increase for fiscal
year 2021. Therefore, our appropriations requests represent modest
investments over the previous fiscal year to ensure governmental public
health continues our mission of promoting optimal health to all.
ASTHO's ``22x22'' campaign, endorsed by 100 national organizations,
urges Congress to increase funding for the CDC by 22 percent by fiscal
year 2022. For fiscal year 2021, we request $8.3 billion for CDC
overall. This increase is important because Federal investment in
public health has not kept pace with inflation nor the considerable
challenges posed by infectious disease outbreaks, extreme weather
events, and other emergencies. According to a 2017 Trust for America's
Health report, only 3 percent of all health spending is directed to
public health, while the other 97 percent (out of $3.36 trillion total)
is spent on healthcare. Finally, the waning public health workforce
strains the ability of state and local public health departments to
protect and promote the health of the population. The ``22x22''
campaign is an effort to bolster CDC's funding over the next 4 years to
eventually reach $8.8 billion for the agency by fiscal year 2022. One
of the most striking examples of the need for increased, predictable,
and sustained funding for the CDC is the recent COVID-19 outbreak.
Addressing outbreaks requires a strong, coordinated response from
Federal, state, territorial, and local governments. In these scenarios,
the CDC--and the funding it provides to these entities-is critical.
While we are grateful for the emergency supplemental funding to bolster
response efforts, state and territorial health departments need
consistent, sustained, and predictable funding to accomplish their
important health protection mission. Establishing and maintaining solid
public health systems allow health departments to prevent, protect,
respond, and recover from events, as well as reduce human and financial
tolls.
Critical to public health preparedness and response is the support
public health receives from the PHEP Cooperative Agreement, for which
we request $824 million. Since its establishment in 2002, the program
has invested in states and territories to create and maintain
foundational capabilities. It is critical to provide stable and
sufficient health emergency preparedness funding to maintain a standing
set of core capabilities, so they are ready when needed. The program
funding--once at $918 million in 2002--is 26 percent lower at $675
million today, with public health threats not experiencing similar
declines. In close partnership with the PHEP program is the Hospital
Preparedness Program (HPP). ASTHO requests $474 million for HPP. As the
only source of Federal funding that supports regional healthcare system
preparedness, HPP promotes a sustained national focus to improve
patient outcomes, minimizes the need for supplemental state and Federal
resources during emergencies, and enables rapid recovery. The work of
these programs is something that we should all be proud of and,
therefore, continue to increase funding for both. In addition to the
HPP, we are requesting that Congress provide $45.6 million to sustain
the Regional Treatment Network for Ebola and Other Special Pathogens
(RTNESP) and the National Ebola Training and Education Center (NETEC)
that are under ASPR's leadership.
Prevention is the best form of treatment. For this, ASTHO requests
$170 million for the Prevent Block Grant. Programs funded by the
Prevent Block Grant cannot be adequately supported or expanded through
other funding mechanisms. States use these flexible dollars to offset
funding gaps in programs that address the leading causes of death and
disability. The success of the Prevent Block Grant is achieved by using
evidence-based methods and interventions, reducing risk factors,
leveraging other funds, and continuing to monitor and reevaluate funded
programs.
While vital, CDC is not the only Federal agency that supports
safety net programs in states and territories. ASTHO is requesting $8.8
billion for discretionary funding for HRSA. HRSA administers programs
that focus on improving care for tens of millions of Americans who are
medically underserved or face barriers to needed care by strengthening
the health workforce.
ASTHO is also encouraged by the Administration's plan to end the
HIV epidemic and improve maternal health in America. State and
territorial health officials look forward to working with Federal and
local partners across the country to bring effective strategies to
scale. State, territorial, local, and tribal jurisdictions and our
community-based organizations and healthcare partners must have the
resources necessary to enhance and deliver these evidence-based public
health interventions and not pull funds from other vital public health
programs.
State and territorial health departments are on the front lines of
responding to the current crisis in our country caused by substance
misuse, addiction, and drug overdoses. ASTHO is appreciative of
previous investments in public health toward this effort and supportive
of an increase of $500 million, or a total of $2.4 billion, for the
Substance Abuse Prevention and Treatment Block Grant at SAMHSA to
sustain activities and continue the response to the opioid epidemic and
substance abuse and misuse disorders more broadly.
Health outcomes data from territories and freely associated states
(FAS) indicates that the health of these populations is far worse, in
comparison to the U.S. mainland population. Therefore, ASTHO requests
that Congress fund a study conducted by the National Academies of
Science, Engineering, and Medicine to better understand the health
impacts of policy on the U.S. territories and FAS. The results of this
research can guide investments, policy, and support and, ultimately,
improve the health of those who reside in these insular areas and are
part of the past and future fabric of our nation.
ASTHO appreciates the attention and diligence of this committee in
previous fiscal years to provide increased funding for governmental
public health. In these challenging but important times for public
health, we urge Congress to continue its support for state and
territorial public health.
[This statement was submitted by Michael Fraser, PhD, MS, CAE,
FCPP, Chief Executive Officer, Association of State and Territorial
Health Officials.]
______
Prepared Statement of the Association of University Programs in
Occupational Health and Safety
On behalf of Association of University Programs in Occupational
Health and Safety (AUPOHS), we respectfully request that the fiscal
year 2021 Labor, Health and Human Services Appropriations bill include
no less than $354,800,000 for the National Institute for Occupational
Safety and Health (NIOSH), including not less than a $2 million
increase over the fiscal year 2020 level for the Education and Research
Centers (ERCs), the Agriculture, Forestry and Fishing (AFF) Program,
and the Total Worker Health Program (TWH).
As demonstrated by the COVID-19 pandemic, occupational injury and
illness create a striking burden on America's health, well-being and
productivity. America's essential workers are heroes who continue to
face personal risk, illness and death in the workplace for the good of
the country. Although the true toll of COVID-19 on American workers is
yet unknown, the impact is high, illustrated by the finding that
approximately 10 percent of Americans infected by COVID-19 are
healthcare workers. High rates of infection are seen in other essential
worker groups such as those attending to our elderly and disabled in
nursing homes and long-term care facilities, agricultural production
workers maintaining our food supply, correctional facility workers, and
others.
Even before the pandemic, despite significant improvements in
workplace safety and health over the last several decades, 14 workers
were dying daily from workplace injuries, and 145 people were dying
from work-related diseases. In the pre-pandemic era, annually, 2.8
million workers were seriously injured on the job. One third of those
injured workers required time off and 5,000 workers lost their lives to
job injuries. According to the 2018 Liberty Mutual Workplace Safety
Index, U.S. businesses were spending more than $1.1 billion a week on
serious, nonfatal workplace injuries. The economic consequences related
to workplace illness from the pandemic will no doubt have a staggering,
compounding impact for years to come.
These figures are especially tragic because many work-related
fatalities, injuries and illnesses are preventable. To improve this
situation effective, professionally directed, health and safety
programs are required. Furthermore, by fostering workplaces that
promote overall employee health and well-being, employers, employees,
families, and communities benefit from improved productivity and
reduced healthcare costs. NIOSH is the primary Federal agency
responsible for conducting research and making recommendations for the
prevention of work-related illness and injury and for promoting worker
health and well-being.
NIOSH responded quickly to the pandemic and continues to perform an
important service for employers and employees in the face of COVID-19.
Importantly, it is the Federal agency that is charged with certifying
and approving Personal Protective Equipment (PPE), including the masks
that are necessary to protect U.S. workers from inhalation exposures to
chemical and biological agents including the virus. During the
pandemic, NIOSH has accelerated the approval process for establishing
the safety and quality of new masks and other PPE. In addition, NIOSH
has deployed teams across the country in response to industry requests
for assistance, including more than 15 meatpacking plants that
experienced outbreaks. NIOSH has contributed leadership and expertise,
contributing to Federal guidance and decision tools for industries
including mass transit, restaurants and bars, childcare facilities,
schools, youth programs and camps, among others, including recent
guidance for companies returning to work or expanding work operations.
The NIOSH supported extramural Centers, including the Education and
Research Centers (ERCs), Centers in the Agriculture, Forestry and
Fishing (AFF) Program, and the Total Worker Health(r) Centers of
Excellence, have responded aggressively to the pandemic. These Centers
have been proactive in providing resources, employer assistance,
training, and research that are helping to drive improvements in our
nation's response. The work that the Centers are undertaking during
this crisis underscores the need for increased funding for NIOSH and
the Centers in the fiscal year 2021 Labor HHS bill.
As of May 15, 2020, all Centers have received and responded to
requests to assist in COVID-19 response. The requests have come from
employers, community organizations, health departments, workers, and
city or state officials, among others. The assistance that has been
requested and provided includes access to our content expertise on how
COVID-19 affects the workplace and strategies for keeping workplaces
safe and maintaining or restoring business operations, policy
recommendations, resource recommendations, training of employers,
training for workers, as well as providing interviews and information
for the general public through media requests, and a creation of
websites and toolkits. Webinars and trainings by the Centers are
reaching thousands of organizations. Eighty-five percent of Centers
report that these trainings focus on employers. Specific audiences for
trainings include public health professionals and other health and
safety professionals, healthcare workers, low-wage workers, and
researchers.
Generating high quality information to help inform decisionmaking
and conducting research to improve worker safety are central tenets of
the Centers. Examples of COVID-19 related research includes:
--Surveying farmworkers about COVID-19 health and economic impacts.
--Development of new Personal Protective Equipment (PPE) fabric to
filter and deactivate the virus.
--Development of a tool for assessing the impact of COVID-19 on
employers and employees, specifically including agricultural
producers, small businesses, and healthcare facilities.
--Assessing the impact of remote work and return to work on workplace
health and safety climate, stress levels, mental health, work-
family conflict, and leadership.
As workplaces rapidly evolve, changes continue to present new
health risks to workers that need to be addressed through occupational
safety and health research. In addition to the long-term implications
of the pandemic on the American workplace and workforce, there are
other ongoing trends that must be addressed. For example, NIOSH is
advancing the understanding of how emerging technologies such as
robotics, nanotechnology, and advanced manufacturing can be managed to
ensure safe operation. In addition, the opioid crisis is impacting
millions of American workers and workplaces. NIOSH and the Centers
developed a multipronged approach to identify high-risk work conditions
leading to opioid misuse and to opioid use disorder.
Through 18 university-based centers, the ERCs provide local,
regional, and national resources for those in need of occupational
health and safety assistance--industry, labor, government, academia,
non-governmental organizations and the public. Collectively, the ERCs
provide graduate-level education in the occupational health and safety
disciplines and offer professional workforce development training and
research resources to every Federal Region in the U.S. Importantly, the
ERCs play a crucial role in preparing a workforce of occupational
safety and health professionals trained to identify and mitigate
vulnerabilities to terrorist attacks and to increase readiness to
respond to biological, chemical, or radiological attacks. Occupational
health and safety professionals work with emergency response teams to
minimize disaster losses, as exemplified by their lead role in
protecting the safety of 9/11 emergency responders in New York City and
Virginia. In 2017, occupational health and safety professionals worked
to minimize hazards among workers involved in clean up and restoration
in the face of the extreme devastation caused by Hurricanes Harvey,
Irma and Maria in Texas, Florida, Puerto Rico and the U.S. Virgin
Islands. In 2020, the ERC's have responded quickly by providing
employers across the country with accessible, concise information on
the workplace implications of COVID-19.
NIOSH also focuses research and outreach efforts on the nation's
most dangerous worksites that often impact lives in more rural parts of
America. The Centers for Agricultural Safety and Health were
established by Congress in 1990 (Public Law 101-517) in response to
evidence that agricultural, forestry and fishing workers suffer
substantially higher rates of occupational injury and illness than
other U.S. workers. According to 2018 bureau of labor statistics data,
these agricultural workers are more than 6 times more likely to die on
the job than the average worker. Food security depends on a healthy and
safe agricultural workforce--a sector that has been hit particularly
hard during the pandemic. Even prior to COVID-19, the sector averaged
540 fatalities per year resulting in the highest fatality rate of any
employment sector in the nation. Today the Agriculture, Forestry, and
Fishing (AFF) Initiative includes ten regional Agricultural Centers and
one national children's farm safety and health center. The AFF program
is the only substantive Federal effort to ensure safe working
conditions in these vital production sectors. While agriculture,
forestry, and fishing constitute some of the largest industry sectors
in the U.S. (DOL 2011), most AFF operations are small: nearly 78
percent employ fewer than 10 workers, and most rely on family members,
immigrants, part-time, contract and/or seasonal labor. Many of these
agricultural workers are excluded from labor protections, including
OSHA oversight, on the vast majority of American farms. More than 1 in
100 AFF workers incur nonfatal injuries resulting in lost workdays 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. The lifesaving, cost-effective work of the AFF program is
not replicated by any other agency. For example, state and Federal OSHA
personnel rely on NIOSH research in the development of evidence-based
standards for protecting agricultural workers and would not be able to
fulfill their mission without the AFF program. Also, 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.
The AFF program activities have made demonstrated impacts on safety
and health. In response to COVID-19, they have engaged in a collective
effort to develop guidance for use by the production agriculture
industry, including checklists, FAQs, and resource guides. They have
translated COVID-19 information for Spanish-speaking workers and have
shared COVID-19 resources with industry partners, agricultural
communities, and governmental agencies. In addition, they are
continuing other important work to ensure the safety and productivity
of American agricultural workers. For example: (1) AFF research has
shown that rollover protective structures (ROPS or roll bars) and
seatbelts on tractors can prevent 99 percent of overturn-related
deaths. (2) AFFs have created training materials in partnership with
producers to deliver evidence-based practical solutions that reduce
exposures when handling pesticides and other farm chemicals among
farmers workers and their children. (3) Partnering with fishing
communities, the AFFs have developed and tested improved life-jacket
designs that are comfortable enough to wear while working, markedly
improve chances of survival in the event of a fall overboard. (4) The
AFFs have conducted ongoing studies and outreach efforts to ensure the
safety of our nation's 86,000 workers in forestry & logging, an
industry with a fatality rate more than 30 times higher than that of
all U.S. workers.
NIOSH supports six Centers of Excellence for Total Worker Health
(TWH) that conduct multidisciplinary research and test practical
solutions to emerging challenges. The TWH Centers partner with
government, business, labor, and community to improve the health and
productivity of the workforce. The TWH Centers have been heavily relied
upon by employers and employees to address the impact of COVID-19 not
only from an infectious disease perspective, but to address the impact
on mental health, stress, burnout, and resiliency of essential workers,
workers abruptly working remotely, and those furloughed or laid off.
Even prior to the pandemic, the TWH Centers' research, education, and
outreach activities occur in workplaces, such as hospitals, factories,
offices, construction sites, and small businesses, resulting in
immediate and measurable improvements in health and safety. For
example, most U.S. employers had already reported that stress and
mental health were major concerns for the effectiveness and well-being
of their workforce. Consequences can include higher rates of substance
use, poor sleep, musculoskeletal disorders, poorer mental health,
obesity, cardiovascular disease, and cancer. In turn, ill health
impacts job performance, increasing risks for serious injury,
absenteeism, and reduced productivity. TWH Centers conduct solutions-
focused research in partnership with employers and employees to address
these challenges.
TWH Centers conduct new and ongoing programs that address safety,
health, well-being, and productivity of the American workforce. For
example: (1) TWH Centers have developed and evaluated interventions to
reduce injuries and disease among workers in corrections to reduce risk
factors for cardiovascular disease and workplace burn-out in officers.
(2) In acute care hospitals, they have uncovered the effects of
harassment and bullying on workplace injury and mental healthcare costs
for patient care workers. (3) A national online and telephonic advising
program for small business owners is now providing advice on COVID-19
as small businesses seek to reopen or increase activity. The TWH
Centers are an investment in the American economy, helping valued
employees return home at the end of a productive day safe and
healthier.
We urge you to recognize the important contribution of NIOSH,
including the ERCs, the AFF Program, and the TWH Program to the health
and productivity of our nation's workforce. Thank you for the
opportunity to submit testimony.
[This statement was submitted by Lee S. Newman, MD, MA, President,
Association of University Programs in Occupational Health and Safety.]
______
Prepared Statement of Autism Speaks
My name is Angela Geiger, and I am the President and Chief
Executive Officer of Autism Speaks. Autism Speaks is dedicated to
promoting solutions, across the spectrum and throughout the life span,
for the needs of individuals with autism and their families. We do this
through advocacy and support; increasing understanding and acceptance
of people with autism; and advancing research into causes and better
interventions for autism spectrum disorder and related conditions.
We are grateful for the bipartisan leadership that both the Chairs
and Ranking Members of the full committee and subcommittee have
provided in supporting investments in autism research, training, and
services over many years. As you consider this year's requests, we look
again to your leadership to build on the significant progress that has
been made and provide investments to meet the tremendous needs that
continue to exist. We understand that the Committee is considering
public witness requests for fiscal year 2021 during an unprecedented
time for our country--having to carefully balance the annual
appropriations process and the need for additional COVID-19 relief with
overall budget considerations. The testimony included here reflects our
request based on conditions that existed prior to the outbreak of the
coronavirus, and the pandemic has no doubt exacerbated many of the
challenges that the autism community experiences.
We thank you for the opportunity to submit testimony in support of
autism funding within the National Institutes of Health (NIH), the
Centers for Disease Control and Prevention (CDC), Health Resources and
Services Administration (HRSA), Department of Education (DOE), and
other agencies under your jurisdiction. For fiscal year 2021 we request
that the Committee invest at least $150 million above current levels in
autism-related activities. This request would help to align the Federal
investment in autism-related activities with the budget recommendation
of the 2016-2017 Interagency Autism Coordinating Committee Strategic
Plan for Autism Spectrum Disorder. While the NIH, DOE, CDC, and HRSA
are the largest funders of autism-related research, training, and
services, multiple other agencies fund important autism-related efforts
as well. We urge the subcommittee to use the Interagency Autism
Coordinating Committee recommendations and strategic objectives to
guide investment across the agencies.
As you are aware, the CDC's most recent estimate released in late
March of this year was that 1 in 54 eight-year-olds in the United
States have an autism spectrum disorder (ASD) diagnosis. Just 10 years
ago that number was 1 in 150. No single factor accounts for this
increase; much of it comes as a result of increased awareness and
earlier diagnosis. In addition, the CDC also recently reported for the
first time an estimate of the number of autistic adults, finding that
5.4 million, or 1 in 45 adults, are on the autism spectrum.
Much of the progress in autism research that has been made is due
in part to your work and support. As a result of research funded by
this committee, the age at which autism can be reliably diagnosed has
gone down from 3 years to 15 months. The sooner a child receives a
diagnosis, the more likely it is that the child will receive the
interventions and services that can improve the child's life. Because
of the research you've funded we now know that individuals on the
spectrum are more likely to have certain co-morbid health conditions
like anxiety and epilepsy. Because of the research you have funded,
clinical practice guidelines have been developed for children with
autism and are being disseminated to healthcare providers around the
country.
The research you have supported has been remarkably important in
better understanding the biology of autism, better understanding the
numbers of individuals across the country with an autism spectrum
disorder diagnosis, and better understanding the types of interventions
and supports that can benefit the autism community. This important
knowledge was brought to us by autism research--and in many ways, it is
because of this progress that we know that so much more needs to be
done. Here are just a few examples of questions that additional
research can answer:
--How can we develop personalized interventions and therapies to
mitigate the co-morbid health conditions that occur in higher
rates among autistic individuals?
--How can we promote evidence-based supports and services to assist
the 70,000 autistic youth who every year transition out of
school-age services?
--Even though autism can be diagnosed at 15 months, the average age
of diagnosis remains at about 4 years old, and even later in
low-income communities. What evidence-based practices can we
use to help diagnose autism earlier across the board?
--There are tremendous gaps in services and supports across the
lifespan, from children receiving a diagnosis and intervention
services to adults who often have very limited access to
supports. How can we ensure that at a community level everyone
gets the support they need to lead a fulfilling and productive
life?
--There is a dearth of research on issues affecting autistic adults.
What can be done to not only better understand service and
support needs, but also why autistic adults have higher
premature death rates and poorer health outcomes than the rest
of the population?
These are just several among many research questions that need to
be answered. To be sure, studies that address these questions are
ongoing, but the scale of the challenges faced by our community require
urgent, increased, and sustained investment. The Interagency Autism
Coordinating Committee (IACC), the congressionally created body whose
primary responsibility is to advise the Federal Government on autism-
related investments, recommended in its most recent Strategic Plan a
doubling by 2020 of 2015 levels of investment in autism research. Even
with this investment, the IACC stated that the ``increases recommended
by the IACC would not be sufficient to accomplish all of the research
goals identified by the plan.''
Furthermore, the IACC pointed out in their plan that the total
annual cost of autism in the United States has been estimated to be at
least $236 billion. By contrast, for 2015 combined autism research
funding among Federal and private sources is less than 1 percent--a
tiny fraction of the estimated annual total cost of autism. We
understand that particularly at this juncture in our country that
resources are finite. However, autism research is far less expensive
than the cost of autism to families and society, and additional
investments can help reduce those costs through early identification
and intervention.
Fortunately, because of the Committee's previous investments and
the decisions made by the agencies funded through this bill, there are
tremendous opportunities to build off existing programs and bring even
more knowledge from research to services. For example:
--In their fiscal year 2021 Congressional Budget Justification, the
National Institutes of Mental Health (NIMH) highlighted the
research they have funded to help identify ASD as early as
possible. In that same document, they encourage more research
into screening methods that can be used in infancy and point
out the gaps that exist in translating screening methods into
tools pediatricians can use.
--The CDC receives only enough funding to monitor the prevalence of
children with ASD in 11 states. For those 11 states, that
information is invaluable in driving efforts at a state and
local level. Additional resources would allow more states to
monitor prevalence and drive enhancements to services.
--HRSA has been funding extraordinarily important efforts to develop
clinical medical standards for treating autistic individuals
and then translating those standards into practice. More
investment in this area would not only enhance the development
of those standards but could rapidly increase their
dissemination to communities across the nation.
--HRSA has also funded important research related to the transition
to adulthood. There has been a significant lack of investment
in research on issues facing autistic individuals across the
lifespan, and there are opportunities to build off this
existing work to close that gap.
We hear every day from individuals and families in the autism
community about their successes, challenges, and everything in between.
The research that you have funded has brought to the autism community a
range of lasting changes and significant improvements in the lives of
autistic individuals and their families. We are at a pivotal moment,
and now is the time to seize on the tremendous opportunity we have to
address the significant gaps we know persist and continue to make
progress so that every person on the spectrum can achieve their full
potential.
[This statement was submitted by Angela Geiger, President and Chief
Executive Officer, Autism Speaks.]
______
Prepared Statement of Berkel Jill Renee deg.
Prepared Statement of Jill Renee Berkel
My son (Richard Berkel) is not a substance abuser and was attending
college at age 18 when he developed schizophrenia. He has an identical
twin brother who does not have schizophrenia and we have no history of
schizophrenia in our family.
For 18 months, I tried to get my son medical, community and
professional help through traditional means to stabilize his condition.
Private medical and Medicaid care was ineffective. The local Mental
Health agency in our county also provided little or no help. (Hiring
more case workers does not necessarily provide help for individuals
with schizophrenia. Our visits with them were valueless.) NAMI was also
not helpful. The NAMI support groups are extremely painful and one
hears story after story of homelessness, suicide, and years of trying
to get help but there is none to be had.
I did learn through NAMI that schizophrenia is a treatable
condition and that individuals with it can lead extremely productive
lives, once stabilized. Long term (6-8 months or more) treatment is
needed but does not currently exist in a private setting.
I looked into moving to another state to get help, but found that
this problem is pervasive in all states. It seems in every state, the
only long-term treatment facilities that exist belong to the state and
can only be accessed by a court order by a judge.
In October of 2019, he was arrested which gave him access to a
state mental hospital. Unfortunately, the hospital released him prior
to stabilization, returned him to jail where they plan to drop the
charges and send him home.
I am a college educated professional, blindsided by this illness of
my son and will be 64 years old this year. As a single mom, I have my
own physical health issues that are aggravated by stress. I lost
gainful employment from distractions dealing with his condition and am
currently unemployed. I have limited ability, education and resources
to deal with his illness.
Please do the right thing and put the NIMH funding where it will do
the most help for those individuals that need it!:
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
Unfortunately, the NIMH has a recent history of ignoring those with
the most severe mental illnesses. As Treatment Advocacy Center Founder
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of Health
budget resolution in December 2019, which brings the NIMH budget to
just under $2 billion and represents a 35 percent increase since 2015,
one of the largest increases in the history of the NIMH. Yet, during
the 5 years from 2015 through 2019, NIMH funded a total of 2 new drug
treatment trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from 2006
through 2010 when NIMH funded 48 such trials. NIMH has thus almost
entirely given up its role of evaluating drugs for the treatment of 2
disorders (emphasis added).''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses over the winter holidays, including from our
organization identifying concrete examples of research initiatives the
NIMH could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans.
Those with the most severe forms of mental illness deserve to be
prioritized.
Thank you for your consideration of this request.
Sincerely.
______
Prepared Statement of Blackburn Janice K. deg.
Prepared Statement of Janice K. Blackburn
I am not a mental health expert by profession, but I wish to share
with the Subcommittee my personal experience concerning the critical
need for more effective antipsychotic medications that treat the
symptoms of schizophrenia without producing serious adverse effects on
the schizophrenic patient. Thank you for your consideration of the
following comments.
I am troubled by the National Institute of Mental Health's
reduction in recent years of clinical trials for new medications to
treat the symptoms of schizophrenia. I am even more concerned that
NIMH's new five-year strategic plan does not indicate a change in the
agency's direction toward a renewed focus on the development of more
effective antipsychotic medications.
As the aunt of a young man who suffers with schizophrenia, I am
quite familiar with the plight of those suffering from this dreadful
disease as they attempt to find a medication that is effective and
which does not produce debilitating side effects. My nephew has
suffered physically and/or emotionally as he has taken a series of
prescribed medications that create various problems in his daily life--
problems that cause him to be greatly discouraged in his efforts to
live as normal a life as possible. Such discouragement has repeatedly
led to his discontinuing his medications over the years. As the
Subcommittee is doubtlessly aware, when a person with schizophrenia
discontinues his/her medication, the costs to the person, their loved
ones, the healthcare system, law enforcement and society at large can
be huge. In my nephew's case, the costs have been considerable but,
fortunately, without serious physical injury to him or others.
Obviously, in order to minimize the risks to the schizophrenic
patient and others that arise when such patients abandon the path of
compliance by discontinuing their prescribed medications, more
effective antipsychotic medications with fewer serious side effects are
needed. I hope that this Senate Subcommittee will take steps to ensure
that the NIMH will renew its focus on the development of more effective
antipsychotic medications with fewer serious side effects.
______
Prepared Statement of the Brain Injury Association of America
Dear Chairman Blunt, Ranking Member Murray and Committee Members:
The Brain Injury Association of America (BIAA) appreciates the
opportunity to submit testimony in support of fiscal year 2021
appropriations for Federal programs serving the 2.5 million children
and adults who sustain a traumatic brain injury (TBI) each year and the
5.3 million Americans living with a disability as a result of TBI.
request
BIAA urges you to:
Increase funding to the National Institute on Disability,
Independent Living, and Rehabilitation Research (NIDILRR) by $15
million to expand the TBI Model Systems program as follows:
--Increase the number of competitively funded centers from 16 to 18
while increasing the per-center support by $200,000;
--Increase the number of multicenter TBI Model Systems
Collaborative Research projects from one to three, each
with an annual budget of $1 million; and
--Increase funding for the National Data and Statistical Center by
$100,000 annually to allow all participants to be followed
over their lifetime.
Appropriate $19 million to the TBI State Partnership Grant Program,
housed in ACL's Administration on Disabilities' Independent Living
Administration of the Administration, to provide funding to all states,
territories, and the District of Columbia.
Appropriate $6 million to the Protection & Advocacy Grant Program,
administered by ACL's Administration on Intellectual and Developmental
Disabilities, to increase the amount awarded to each state.
Appropriate $23 million to the Centers for Disease Control and
Prevention (CDC) as follows:
--$7 million for CDC's TBI program authorized by the TBI Program
Reauthorization Act of 2018,
--$2 million for CDC's falls prevention program,
--$9 million for CDC's injury control research centers, and
--$5 million in new funding for a national concussion surveillance
system.
discussion
The TBI Model Systems are a collection of 16 research centers
located across the United States that conduct disability and
rehabilitation research. The TBI Model Systems are the only source of
non-proprietary longitudinal data on what happens to people with brain
injury across the lifespan. They are a key source of evidence-based
medicine and serve as a ``proving ground'' for future researchers. TBI
Model Systems sites work closely with the Department of Veterans
Affairs on research to improve the treatment of Veterans with brain
injuries. It is in the nation's interest to expand our knowledge in
caring for all persons who sustain TBIs.
The TBI State Partnership Grant Program (and its predecessor known
as the Federal TBI Program) has sought to establish and/or strengthen
access to systems of care for individuals who sustain brain injuries
and their families. Currently 27 states are funded at either $300,000
or $150,000 to address the varied medical, healthcare, and community-
based service and support needs across an array of public and private
agencies and providers for individuals with co-occurring substance use
and TBI, service members and veterans with TBI, seniors with TBIs from
falls, adults and youth with TBI in the corrections system, student
athletes managing concussions, and children transitioning from hospital
to school after TBI. It is important to understand that families are
the primary caregivers to individuals with brain injury. Indeed, no
state has a full array of services and supports needed following
injury. States that are not participating in the grant program may not
have an identified or central contact for individuals and families.
The Protection and Advocacy TBI (PATBI) Grant Program funds the
governor-designated P&A in each state and territory at $50,000 to
provide advocacy assistance in finding, maintaining or advancing in
employment, finding a home, accessing needed supports and services such
as personal attendant services, assistive technology, and obtaining
appropriate mental health, substance abuse, and rehabilitation services
to avoid institutionalization.
The TBI Program Reauthorization Act of 2018 authorizes the Centers
for Disease Control and Prevention to make grants to states to conduct
TBI surveillance and public education programs. Funding of $7 million
is needed for these activities. In addition, at least $5 million is
needed in order for CDC to establish a national surveillance system to
accurately determine the incidence of sports--and recreation-related
concussions among youth aged 5 to 21 years as authorized by the TBI
Program Reauthorization Act of 2018.
contact
The Brain Injury Association of America is the nation's oldest and
largest brain injury patient advocacy organization. Our mission is to
advance brain injury awareness, research, treatment and education that
improves the quality of life for people affected by brain injury. For
further information, please contact Susan Connors at
[email protected].
[This statement was submitted by Susan H. Connors, President/Ceo,
Brain Injury Association of America.]
______
Prepared Statement of CAST
CAST is a non-profit organization that uses educational technology
coupled with expertise in the learning sciences to ensure all learners
can and do reach their full potential. Our primary lever for change is
Universal Design for Learning (UDL), a framework pioneered at CAST that
harnesses technology and instructional practices to remove barriers to
learning in digital as well as physical settings. Our aim is to create
a level playing field where all learners have equitable opportunities
to succeed.
UDL encourages the design of flexible learning environments that
anticipate learner variability and provide alternative routes or paths
to success; UDL acknowledges that variability across all learners is
the norm rather than the exception. In support of the important
portfolio of projects that include investments at the Federal level, in
fiscal year 2021, CAST requests the following: (1) U.S. Department of
Education (ED)--continue to fund all education programs at no less than
the funding levels provided in fiscal year 2020 and prioritize UDL as a
necessary priority for all competitive grants. (2) U.S. Department of
Labor (DOL)--require all Federal investments in apprenticeships, career
training and employment to incorporate UDL as defined in the Higher
Education Act, and as referenced and endorsed as a best practice in the
National Technology Plans of 2010 and 2016, as well as the National Ed
Tech Developer's Guide of 2015.
We view additional funding appropriated to both the U.S.
Departments of Education and Labor as an investment in the future. In
our view, the COVID-19 pandemic is creating an inflection point that
while unanticipated, can also be viewed as an opportunity to assure
equitable access to education and workforce training. All students,
young adults and others seeking an education as well as career
training, including those who may struggle due to low literacy,
language, disability or other factors can be taught remotely when they
have the right technology including accessible materials and when their
teachers and instructors have the right tools and training.
CAST is directly engaged with teachers and students across the
United States in implementing the UDL framework-including during this
abrupt, nationwide transition to online and remote learning. Without
question, our work with States, districts, schools, and individual
educators, as well as students and parents, convinces us that students
of all ages and their families are depending on us to support them in
their right to receive a high-quality education, even in these
difficult circumstances. We urge you to help states and districts
tackle an unprecedented crisis and turn it into an opportunity that
changes the future for good.
Since pioneering UDL more than 30 years ago, CAST has brought UDL
into K-12 schools, into postsecondary settings and increasingly into
career and technical education programs. CAST's work is grounded in the
vision of creating a world where ``learning has no limits.'' UDL is now
included in every major law impacting America's educational system,
having emerged as a key element in Federal education policy. By
investing in expanding both the knowledge and use of UDL, multiple
Federal agencies, state education systems, school districts, federally
funded education and labor programs and private foundations have made
proactive and ``on-the-fly'' individualization of curricula possible in
practical, cost-effective ways, and helped ensure that many educational
technologies have built-in supports, scaffolds, and challenges to help
learners understand, navigate, and engage with the learning
environment.
The Subcommittee plays a significant role in ensuring that
investments continue in UDL so that both education and employment
settings embrace the framework of UDL to ensure the country's
educational and economic success. Funding provided annually has
expanded access to UDL through Title II of the Every Student Succeeds
Act and the Higher Education Act--to support teacher and school leader
preparation and professional learning for educators--and through the
Strengthening Career and Technical Education for the 21st Century Act--
to support better workforce preparation and employment outcomes for
special populations including veterans, English learners, and
individuals with disabilities.
Research-to-practice initiatives have been successfully seeded
through ED's Education Innovation and Research programs including Ready
to Learn as well as in National Activities that fall under the
Individuals with Disabilities Education Act. Training and Employment
initiatives for the DOL also receive important funding in support of
UDL.
A sample of successful initiatives led by CAST and funded by the
U.S. Department of Education include:
--Student Engagement in Science/Social Science: Through the Office of
Elementary and Secondary Education, CAST led the Co-Organize
Your Learning (CORGI) project. CORGI is a Google application
(app) designed for students and teachers to use to
collaboratively answer questions requiring higher order
reasoning. CORGI helps students engage in science and social
science classrooms and enhances their content learning.
Students involved in the first pilot showed statistically
significant improvements in U.S. History and Biology. There was
also a positive differential effect for the students when
compared with non-participants. CORGI is in its next phase at
ED and is being used for STEM education in research funded by
the National Science Foundation which expands the application's
capacity for use with more students.
--Digital Learning Materials: Through the Office of Special
Education, CAST leads the Center on Inclusive Software for
Learning (CISL) in creating a suite of innovative tools
designed to support today's diverse learner needs by making
digital educational materials--including open educational
resources (OERs)--accessible, flexible, and engaging for all
students. CISL is exploring key aspects of digital learning
such as: which learning supports should be prioritized when
designing curricula? and how can OERs be made more accessible
across content areas and for various grade levels and types of
learners?
--Accessible Educational Materials: Through the Office of Special
Education, the National Center on Accessible Educational
Materials (AEM Center) continues to provide resources and
technical assistance to educators, parents, students,
publishers, conversion houses, accessible media producers, and
others interested in providing accessible education materials
including OERs consistent with Federal requirements under the
National Instructional Materials Accessibility Standard. CAST
helps teachers, administrators, assistive technology
specialists, and curriculum creators to improve and customize
curriculum to improve student access to materials and
interoperability with student data, assistive technology, and
content management systems. This work significantly impacts
access to education in K-16 settings. CAST is also leading the
OSEP-supported Center on Inclusive Technology & Education
Systems, working with LEAs to create and disseminate a
framework so that educational technology, assistive technology,
and information technology can be better integrated in support
of students with disabilities.
--Teacher Training/Student Engagement (CA, NH, MA, WI): As part of
the Office of Special State Personnel Development Grants, CAST
continues to lead statewide initiatives that focus on training
teachers to build school and district capacity to improve
student engagement and achievement through use of UDL in
instructional practice.
--Science Assessments/STEM Education: CAST has a long list of STEM-
focused initiatives and the most current focus on:
--OESE/OSEP: Expansion of Co-Organize Your Learning (CORGI) project
to enhance student engagement and learning through a Google
application (app) designed for students and teachers to use
to collaboratively answer questions requiring higher order
reasoning.
--OSEP: To develop and test UDL-aligned science assessments for
students with significant cognitive disabilities; and,
--Institute for Education Sciences: To conduct an efficacy trial of
the UDL for Learning Science Notebook (UDSN), to support
elementary school students with learning disabilities in
active science learning. Results have shown the tool's
supports for science learning and the science inquiry
process have statistically significant effects on science
performance and motivation for science learning.
Also, adoption of UDL in career and technical education (CTE) and
employment training continues to grow. Examples include:
--Collaboration with the National Alliance for Partnerships in
Equity: To support a major initiative to broaden participation
in STEM and CTE which brings together six intermountain states
to scale up the use of evidence-based practices already shown
to improve equity in CTE and increase access to STEM career
training.
--Large-Scale Employment Training Initiatives: To ensure UDL is a
foundational element of national programs like YouthBuild and
Jobs for the Future.
--Training CTE Faculty: To bring training to CTE faculty in the
application of UDL to help their students achieve educational
and career goals.
Increasingly, education and training programs of every level and
type are incorporating significant digital and online components. Yet,
despite the promise of flexibility, customized, learning solutions, and
anywhere/anytime educational opportunity often associated with digital
learning--especially for learners with challenges such as those based
in poverty, language, disability, or something else, the reality is
often dismal. Leveraging the UDL framework is essential to mitigating
the current impact of digital learning because the population of
digital learners is predictably diverse, and every federally supported
training program must plan for that to ensure the effectiveness of
these investments. This urgency is only intensified by the need for the
U.S. educational system to respond to the COVID-19 pandemic with a
wholesale shift to digital learning methods. CAST has received numerous
requests from across the country for guidance during this crisis, and
we have joined national coalitions and partners to ensure that learning
will not be limited, even and especially for the country's most
vulnerable children and youth, in these unprecedented times.
CAST urges the Subcommittee to further invest in UDL. In doing so,
Congress would increase the capacity of States, districts and schools
to provide more robust professional learning and other needed technical
assistance so that teachers can be provided the tools and resources
they need to teach and provided educational services and support to
students. It is imperative that all learners, including first-time
career seekers or adults desiring new opportunities, have access to
workforce development and career pathway strategies and programs that
are designed from the beginning with the variability of their learning
in mind. Continuing to invest in educational innovations that
incorporate effective implementation of UDL while prioritizing the need
to include UDL as part of the infrastructure of workforce and CTE
faculty training makes sense. As with K-12 education, this need is
intensified by the retraining that will be required across the country
as companies and industries adopt new workflow and safety protocols in
response to COVID-19.
CAST appreciates the opportunity to provide recommendations to the
Senate's fiscal year 2021 appropriations bill. We look forward to
working with you as you develop a final appropriations bill that
recognizes UDL as a vital component to K-16 education and to increasing
and sustaining a well-trained and vital workforce.
______
Prepared Statement of the CDC Coalition
The CDC Coalition is a nonpartisan coalition of more than 140
organizations committed to strengthening our nation's prevention
programs. We represent millions of public health workers, clinicians,
researchers, educators and citizens served by CDC programs. We believe
Congress should support CDC as an agency, not just its individual
programs. Although we believe an even more significant increase is
truly needed to address the nation's current health challenges, at a
minimum, we urge a funding level of at least $8.3 billion for CDC's
programs in fiscal year 2021. This request does not reflect any
additional emergency resources that may be needed to address the
immediate and ongoing efforts to combat the COVID-19 pandemic. We are
grateful for the important increases provided for CDC programs in
fiscal year 2020 and urge Congress to continue efforts to build upon
these investments to strengthen all of CDC's programs. Additionally, we
continue to oppose any effort to repeal or cut the Prevention and
Public Health Fund which makes up about 11 percent of CDC's budget and
funds critical prevention programs.
CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the
current COVID-19 outbreak globally and in the U.S. to playing a lead
role in the control of Ebola in West Africa and the Democratic Republic
of the Congo, to monitoring and investigating disease outbreaks in the
U.S., to pandemic flu preparedness to combating antimicrobial
resistance, CDC is the nation's--and the world's--expert resource and
response center, coordinating communications and action and serving as
the laboratory reference center for identifying, testing and
characterizing potential agents of biological, chemical and
radiological terrorism, emerging infectious diseases and other public
health emergencies. CDC serves as the lead agency for bioterrorism and
other public health emergency preparedness and response programs and
must receive sustained support for its preparedness programs. Given the
challenges of terrorism and disaster preparedness we urge you to
provide adequate funding for the Public Health Emergency Preparedness
grants which provide resources to our state and local health
departments to help them protect communities in the face of public
health emergencies. We urge you to provide adequate funding for CDC's
infectious disease, laboratory and emergency preparedness and response
activities in order to ensure we are prepared to tackle both ongoing
COVID-19 pandemic and other public health challenges and emergencies
that will likely arise during the coming fiscal year.
Injuries are the leading causes of death for people ages 1-44.
Unintentional and violence-related injuries, such as older adult falls,
firearm injury, child maltreatment and sexual violence, account for
nearly 27 million emergency department visits each year. In 2013,
injury and violence cost the U.S. $671 billion in direct and indirect
medical costs. In 2018, opioids killed nearly 47,000 individuals
nationwide. CDC provides states with resources for opioid overdose
prevention programs and to ensure that health providers to have
information to improve opioid prescribing and prevent addiction and
abuse. In 2018, there were over 39,740 U.S. firearm-related fatalities.
We thank Congress for providing CDC with dedicated funding for firearm
morbidity and mortality prevention research and we strongly urge you to
maintain and increase this funding in fiscal year 2021. The National
Center for Injury Prevention and Control must be adequately funded to
conduct research, prevent injuries, and help save lives.
In 2017, over 647,000 people in the U.S. died from heart disease,
the nation's number one killer, accounting for about 23 percent of all
U.S. deaths. More males than females died of heart disease in 2017,
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
2017, over 146,000 people died of stroke, accounting for about one of
every 19 deaths. CDC's Heart Disease and Stroke Prevention Program,
WISEWOMAN, and Million Hearts work to improve cardiovascular health.
More than 1.8 million new cancer cases and over 600,000 deaths from
cancer are expected in 2020. In 2015 the direct medical costs of cancer
was $80.2 billion. The National Breast and Cervical Cancer Early
Detection Program helps millions of low-income, uninsured and medically
underserved women gain access to lifesaving breast and cervical cancer
screenings and provides a gateway to treatment upon diagnosis. The
Colorectal Cancer Control Program focuses on improving screening rates
among targeted, low-income populations aged 50 -75 years in targeted
states and territories through evidence-based interventions using
partner health systems. CDC funds grants to all 50 states, DC, 7 tribes
and tribal organizations, and 7 U.S. territories and Pacific Island
jurisdictions to develop comprehensive cancer control plans, bringing
together public and private stakeholders to set priorities and
implement cancer prevention and control activities to address each
state's particular needs.
Cigarette smoking causes more than 480,000 deaths each year. CDC's
Office of Smoking and Health funds important programs and education
campaigns such as the Tips From Former Smokers campaign which has
already helped more than 500,000 individuals quit smoking and millions
more to make a serious quit attempt. We must continue to support this
and other vital programs to reduce the enormous health and economic
costs of tobacco use in the U.S.
Of the more than 34 million Americans living with diabetes, more
than 7 million cases are undiagnosed. Each year, about 1.5 million
people are newly diagnosed with diabetes. Diabetes is the leading cause
of kidney failure, nontraumatic lower-limb amputations, and new cases
of blindness among adults in the U.S. The total direct and indirect
costs associated with diabetes were $327 billion in 2017. We urge you
to provide adequate resources for the Division of Diabetes Translation
which funds critical diabetes prevention, surveillance and control
programs.
Obesity prevalence in the U.S. remains high. More than 42 percent
of adults are obese and 18.5 percent of children ages of 2 to 19 are
obese. Obesity, diet and inactivity are cross-cutting risk factors that
contribute significantly to heart disease, cancer, stroke and diabetes.
The Division of Nutrition, Physical Activity and Obesity funds programs
to encourage the consumption of fruits and vegetables, encourage
sufficient exercise and develop other habits of healthy nutrition and
physical activity and must be adequately funded.
Arthritis is the most common cause of disability in the U.S.,
striking more than 54 million Americans of all ages, races and
ethnicities. CDC's Arthritis Program helps address this growing public
health challenge and works to improve the quality of life for
individuals affected by arthritis and we urge you to support adequate
funding for the program.
CDC provides national leadership in helping control the HIV
epidemic by working with community, state, national, and international
partners in surveillance, research, prevention and evaluation
activities. CDC estimates that about 1.1 million Americans are living
with HIV with 14 percent undiagnosed. Prevention of HIV transmission is
the best defense against the AIDS epidemic. Sexually transmitted
diseases continue to be a significant public health problem in the U.S.
Nearly 20 million new infections occur each year. STDs, including HIV,
cost the U.S. healthcare system almost $16 billion annually.
The National Center for Health Statistics collects data on chronic
disease prevalence, health disparities, emergency room use, teen
pregnancy, infant mortality and causes of death. The health data
collected through the Behavioral Risk Factor Surveillance System, Youth
Risk Behavior Survey, Youth Tobacco Survey, National Vital Statistics
System, and National Health and Nutrition Examination Survey must be
adequately funded.
CDC's REACH program helps communities address serious disparities
in infant mortality, breast and cervical cancer, cardiovascular
disease, diabetes, HIV/AIDS and immunizations by supporting community-
based interventions and we urge the committee to provide continued
funding for these important activities.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. Childhood immunizations provide one of the best
returns on investment of any public health program. For every dollar
spent on childhood vaccines to prevent thirteen diseases, more than $10
is saved in direct and indirect costs. Over the past 20 years, CDC
estimates childhood immunizations have prevented 732,000 deaths and 322
million illnesses. We urge you to provide adequate funding for the
Section 317 Immunization program and other efforts to prevent vaccine-
preventable disease.
Birth defects affect one in 33 babies and are a leading cause of
infant death in the U.S. Children with birth defects that survive often
experience lifelong physical and mental disabilities. Approximately one
in six U.S. children is living with at least one developmental
disability and one in four adults live with a disability. The National
Center on Birth Defects and Developmental Disabilities conducts
programs to prevent birth defects and developmental disabilities and
promote the health of people living with disabilities and blood
disorders.
CDC's National Center for Environmental Health funds programs to
control asthma, protect from threats associated with natural disasters
and climate change, reduce, monitor and track exposure to lead and
other environmental health hazards. Increased funding for CDC's
environmental health prevention activities within NCEH will help reduce
illness, disease, injury and even death.
In order to meet the many ongoing public health challenges facing
the nation, including those outlined above, we urge you to support, at
a minimum, our fiscal year 2021 request of at least $8.3 billion for
CDC's programs.
[This statement was submitted by Don Hoppert, Director, Government
Relations, American Public Health Association.]
______
Prepared Statement of the Center for Studies in Demography and Ecology,
University of Washington
I am writing on behalf of the hundreds of research scientists at
the University of Washington who rely on high quality demographic and
vital statistics data for understanding and explaining the state of our
nation's and communities' health and wellbeing. In this time of
pandemic crisis, we are all made aware of the incredible and important
need for high quality vital statistics records. That recognition should
increase the legislative priorities for re-investing in our nation's
capacities to collect and curate high quality vital statistics records.
The Friends of NCHS has submitted a recommendation statement and we
support that statement. Please accept this statement of testimony for
the Labor-HHS-Education bill.
We recommend funding level of at least $189 million for the
National Center for Health Statistics (NCHS) (an increase of $14.6
million and realignment of $14 million in ongoing transfers), which
would restore NCHS's budget its inflation-adjusted fiscal year 2010
funding level, giving it the funding it needs to continue to produce
its essential existing surveys and reports without interruption while
being able to invest in desperately needed innovation.
The investment in transforming NCHS capacity to capitalize on
survey methodologies, big data and computing will also catalyze
scientific and public health insights across the nation from small
localities to major universities. Becoming a gold-standard producer of
health statistics is a relatively small investment for an extraordinary
return on public investment.
[This statement was submitted by Sara Curran, Director, Center for
Studies in Demography & Ecology, University of Washington.]
______
Prepared Statement of the Child Care Access Means Parents in Schools
Dear Chairmen and Ranking Members,
As organizations committed to promoting the postsecondary success
of college students with children, we are writing to express our strong
support for increasing funding for the Child Care Access Means Parents
in Schools (CCAMPIS) program to $200 million--the amount needed to
provide child care support to approximately 2.5 percent of Pell-
eligible student parents of children ages 0-5. The CCAMPIS program
provides vital support for the participation and success of low-income
parents in postsecondary education through the provision of subsidized
child care, which is widely recognized as one of the most important
supports for parenting college students. The COVID-19 crisis has put
into stark relief the challenges student parents--many of whom are also
working parents--face balancing child care, academics, one job or
several jobs, and precarious finances, even before the pandemic.
Quadrupling CCAMPIS funding to $200 million in the Labor-HHS-ED
appropriations bill would ensure that tens of thousands more parenting
college students receive the child care assistance they need to
continue their educational journeys and be successful in college.
Roughly 4 million college students are parents of dependent
children, representing more than one in five undergraduates in the
United States. Many of these student parents are balancing college and
parenting without the support of a spouse or partner: 1.7 million women
in college are single mothers. Student parents, and particularly those
who are single, face acute financial, work, caregiving demands that can
complicate their ability to persist to graduation. Student parents are
more likely than other students to live in poverty, to have no
resources to devote to college costs, and to incur substantial student
debt--due in large part to the high cost of child care. Student parents
also spend significant time providing care, with 21 percent of
community college students spending more than 20 hours per week caring
for dependents, according to the 2019 Community College Survey of
Student Engagement.
Access to affordable child care is one of the most important
supports that can help student parents succeed in college. Data from
one community college show, for example, that usage of the campus child
care center led to a 21 percent increase in degree attainment over the
rate for student parents who did not access the center. New research
shows, however, that students often do not have access to affordable
care--according to a recent survey of roughly 23,000 student parents,
70 percent of respondents report that their child care arrangement is
unaffordable. Without affordable child care, student parents are often
forced to make tough decisions about their educational pursuit: in
2019, 28 percent of community college students reported that they are
likely or very likely to leave school due to their caregiving
responsibilities.
Unfortunately, campus-based child care has been declining in recent
years, most dramatically at community colleges where the largest share
of student parents are enrolled. Exacerbating this decline is the fact
that, in light of the economic fallout caused by COVID-19, the country
may lose as many as 4.5 million child care slots. The need for student
parent access to affordable child care has never been greater than it
will be as campuses begin to re-open.
The CCAMPIS program is the only Federal program dedicated solely to
providing child care assistance for students in postsecondary settings.
Other available child care assistance, such as subsidies provided
through the Child Care Development Block Grant, can be hard for student
parents to access due to restrictive eligibility rules such as work
requirements and degree limitations. CCAMPIS has no work requirements
and it helps meet students' need for low-cost child care, enabling them
to persist in and complete postsecondary credentials, which are
critical to their families' economic well-being and are associated with
a range of multigenerational benefits. Increasing the program's funding
to serve a larger percentage of Pell-eligible students with young
children would allow the program to reach tens of thousands more
students, greatly improving their chances of postsecondary success.
For these reasons, we express our strong support for increasing
funding for the Child Care Access Means Parents in Schools (CCAMPIS)
program to $200 million in the fiscal year 2021 Labor-H appropriations
bill.
Sincerely,
All Our Kin
America Forward
Augustus F. Hawkins Foundation
BCC EARLY CHILDHOOD CENTER
Center for Law and Social Policy (CLASP)
Charles Stewart Mott Community College
City University of New York
Clearinghouse on Women's Issues
Early Learning Campus, Inc
Every Child Matters
Feminist Majority Foundation
First Focus Campaign for Children
Florence Darlington Technical College
Georgia Budget and Policy Institute
Healthy Teen Network
Helen Gordon CDC, Portland State University
Higher Learning Advocates
Institute for Childhood Preparedness
Institute for Women's Policy Research (IWPR)
Jobs for the Future (JFF)
Los Angeles Valley College Family Resource Center
Mesa Community College
Monroe Community College (SUNY)
National Alliance for Partnerships in Equity (NAPE)
National Indian Child Care Association
National Organization for Women
National Skills Coalition
National Women's Law Center
New America Education Policy Program
One Family
Oregon State University, Family Resource Center
Ray Ellison Family Center
Save the Children Action Network
Society of Women Engineers
Southern Illinois University Edwardsville
St. Louis Community College
Student Veterans of America
The Graduate! Network, Inc
The Hope Center for College, Community, and Justice
The National Child Care Association (NCCA)
The National Early Childhood Program Accreditation (NECPA)
uAspire
Univ. of Hawaii Bridge to Hope
University of Delaware
University of Missouri St. Louis
University of New Mexico Children's Campus
Veterans Education Success
Women Employed
World Education, Inc.
Young Invincibles
______
Prepared Statement of the Children's Hospital Association
The Children's Hospital Association (CHA) advances child health
through innovation in the quality, cost and delivery of care.
Representing more than 220 institutions, CHA is the voice of children's
hospitals nationally. As organizations dedicated to protecting and
advancing the health of America's children, we urge the Subcommittee to
continue advancing children's health by funding CHGME at $465 million.
A robust pediatric workforce is essential to ensuring that no child
lacks access to high-quality medical care. The CHGME program supports
this goal by providing funding for the training of pediatric providers
at independent children's teaching hospitals, much as Medicare supports
training in teaching hospitals that serve primarily adults. CHGME
benefits all children, supporting the training of doctors who go on to
care for children living in every state--in cities, rural communities,
suburbs and everywhere in between. As the only providers of the most
complex pediatric cancer, cardiac, trauma and care for chronically and
acutely ill infants and children, pediatricians are the primary
provider for millions of children in need.
The CHGME program represents our nation's most significant
investment in strengthening the pediatric workforce. CHGME was created
in 1999 with bipartisan support when Congress recognized that a
dedicated source of funding for training the next generation of
pediatricians and pediatric specialists in children's hospitals was
crucial. Because we treat children--mostly covered through Medicaid and
the Children's Health Insurance Program--children's hospitals were
effectively left out of the Federal GME system of support provided
through Medicare prior to the establishment of CHGME.
Since the establishment of the program, CHGME funding has enabled
children's hospitals to dramatically increase training overall and in
particular grow the supply of pediatric specialists--the area of
greatest shortage in children's healthcare. Today, only 1 percent of
all hospitals in the United States--58 children's hospitals--receive
CHGME. Yet, these institutions train approximately half of the nation's
pediatricians--more than 7,000 FTEs annually--including 44 percent of
all general pediatricians and 57 percent of all pediatric specialists.
Between 2000 and 2015, CHGME-supported hospitals collectively
increased the number of residents trained by 113 percent. Today, in the
majority of pediatric subspecialist fields tracked by the American
Medical Association, more than 65 percent of residents are trained at
CHGME hospitals. In some fields, such as pediatric rehabilitation
medicine, virtually all physicians receive their training at CHGME
hospitals.\1\
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\1\ ``Percentage of Pediatric Specialists Trained at CHGME
Recipient Hospitals,'' Children's Hospital Association fact sheet,
April 2018.
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Unfortunately, multiple indicators suggest a crisis is looming for
children's access to care. Despite progress, we are at risk of falling
behind on children's health. The current level of support provided for
training kids' doctors through CHGME is declining against levels
provided per trainee in the Medicare Graduate Medical Education
(Medicare GME) program. In fiscal year 2020, CHGME was funded at $340
million. At that level, the average CHGME payment per full-time
equivalent (FTE) resident equates to approximately $73,000. By
comparison, Medicare GME payments to general acute care hospitals are
approximately $142,000 per resident. This shortfall continues to grow.
Without additional investments, CHGME funding will decline to 45
percent of Medicare GME by 2023. By increasing CHGME funding by
approximately $125 million annually for 3 years, parity between CHGME
and Medicare GME can be achieved--ensuring a strong pediatric workforce
pipeline for future generations. A funding level of $465 million for
fiscal year 2021 is the first step to ensuring the investment in
training physicians for adults is comparable.
Even with CHGME, serious pediatric workforce shortages persist
nationwide--most acutely among pediatric subspecialties. The most
recent survey data available from children's hospitals shows the
following wait times for scheduling appointments due to shortages:
--Genetics--average wait time of 20 weeks
--Developmental Pediatrics--average wait time of 19 weeks
--Pain Management/Palliative Care--average wait time of 12 weeks
--Child and Adolescent Psychiatry--average wait time of 10 weeks
Beyond these shortages, children's hospitals also currently incur
significant additional costs to subsidize their teaching mission--costs
as high as $40 million annually above what they receive from CHGME.
This growing funding gap isn't sustainable, as it is being made up
through the clinical operations of our children's hospitals, hospitals
with the nation's highest Medicaid payer burden. Medicaid reimbursement
levels in many states remain well below those of private insurance and
other government programs, particularly as state Medicaid programs have
been scaled back significantly in recent years. Without strengthening
CHGME, hospitals will be at risk of cutting training experiences and
patient care services.
Increased funding for pediatric workforce training programs is even
more important as we actively respond to the emergence of COVID-19
within our communities. Residency and fellowship programs are being
impacted tremendously during this time due to a shift in healthcare
services and the need to provide healthcare in a time of crisis. Many
residents are seeing their programs suspended or are being asked to
provide services in different capacities. They are being asked to
balance the needs of their training requirements while providing care
during a pandemic. Additionally, they are adapting to new training
platforms and policies to ensure patient safety.
The healthcare needs of the pediatric population are also
increasing overall. The number of children with complex medical
conditions is growing at a faster rate than the overall child
population, requiring an increasing number of specialty care
providers.\2\ Strengthening funding for CHGME will help children and
their families, including those with rare and complex conditions.
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\2\ 2014 report, ``Summary of Available Evidence and Methodology
for Determining Potential Medicaid Savings from Improving Care
Coordination for Medically Complex Children,'' prepared for Children's
Hospital Association by Dobson DaVanzo & Associates, p. vi.
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The CHGME program is critical to facing these shortages, protecting
gains in pediatric health and ensuring access to care for children. Now
is the time to take a step forward in pediatric medicine--particularly
during this time of emergency--to ensure our children have access to
the healthcare services they need.
Children's hospitals thank you for your past support for this
critical program and your leadership in protecting children's health.
We respectfully request that the Subcommittee continue its history of
bipartisan support for children's health and fund CHGME at $465 million
in the fiscal year 2021 Labor-HHS appropriations bill.
______
Prepared Statement of the Christopher & Dana Reeve Foundation
Thank you for this opportunity to submit testimony in support of an
appropriation of $9,700,000 for the Paralysis Resource Center (PRC)
within the Administration for Community Living (ACL) at the Department
of Health and Human Services (HHS).
I am proud to speak on behalf of my daughter, Ellie, who is of the
1 in 50 Americans living with paralysis, who rely on programs like the
Paralysis Resource Center to live independent and empowered lives. The
Reeve Foundation has operated the Paralysis Resource Center for 18
years, competing in a rigorous, competitive bidding process every 3
years for renewal of this grant. For fiscal year 2021, we request
funding of $9.7 million for the Paralysis Resource Center. Of this
total, we request that the Committee direct no less than $8.7 million
to the National Paralysis Resource Center. These requests are in line
with the final appropriation for fiscal year 2020, and with the
Administration's fiscal year 2021 Budget Request.
When Christopher Reeve was paralyzed from the neck down due to a
spinal cord injury in 1995, his family found themselves in total
darkness as to what to do next. There was no phone number to call for
guidance or help. There were no experts reaching out to connect them to
the right rehabilitation facilities, or to discuss how they could
support his return home and ongoing well-being. There was certainly no
promise that an individual living with that level spinal cord injury
could lead a full and active life as a father and husband. Yet, instead
of accepting that life with paralysis would be full of limitations, he
dreamed of a brighter future.
That was the genesis of the Christopher & Dana Reeve Foundation:
Christopher's dream to elevate the needs and rights of the 5.4 million
Americans living with paralysis. But he was far from alone. The real
drive behind the Paralysis Resource Center came from his wife, Dana. As
a caregiver herself, she knew that paralyzed individuals and caregivers
around the country need a centralized place to call for resources and
expertise.
Just twenty-four hours after my daughter, Ellie, sustained a spinal
cord injury, I contacted the Paralysis Resource Center. The same day I
was told my daughter would probably never walk again; I was offered a
lifeline. I believe that call turned the nose of the Titanic away from
the iceberg before it hit us. It altered the course of desperation and
isolation of what we were dealing with and gave us real hope. I was
assured that Ellie would drive again, work again and enjoy her life-and
that the Foundation would hold my hand the entire way.
Since the PRC opened its doors in 2002, it has served as a free,
comprehensive, national source of informational support for people
living with paralysis and their caregivers. Its work is deeply aligned
with ACL's mission to empower people living with disabilities and older
adults to live independently and participate in their communities
throughout their lives. The PRC is the only program of its kind that
directly serves individuals living with spinal cord injury, MS, ALS,
stroke, spina bifida, cerebral palsy and other forms of paralysis. The
services and programs described below would not be possible without the
ongoing support of this Subcommittee.
The PRC's Core Programs
Information Specialists.--One of the PRC's most essential functions
is the team of certified, trained Information Specialists (IS) who
provide personalized support on how to navigate the challenges of life
with paralysis. This team of experts, many living with paralysis
themselves, are often the first port of call for individuals who are
newly injured or diagnosed. This is especially critical as we face the
current COVID-19 public health emergency. The IS team is providing up-
to-date information on how best to care and protect oneself during this
exceptionally difficult and uncertain time for the world.
To date, our Information Specialists have provided direct
counseling to over 111,000 people. We have distributed 210,000 copies
of our Paralysis Resource Guide, which is a staple in hospitals and
rehabilitation facilities across the country.
Peer & Family Support Program.--A second pillar of the PRC is our
Peer & Family Support Program. This program is born of the idea that
the best source of knowledge is experience: and that peer-to-peer
connections empower not only the newly-paralyzed individual, but also
the mentor. Through the PRC, more than 423 peer mentors have been
trained and certified in 41 states and Washington, DC. These
individuals have mentored 12,450 peers, including 3,624 caregivers.
Quality of Life Grants Program.--Our third pillar, the Quality of
Life Grants Program, operates at the community level to fund nonprofit
initiatives in all 50 states. Since 1999, the Quality of Life Grants
Program has directed over $28 million dollars to assist 3,150 projects.
This program has increased employment trainings and accessible
transportation; established adaptive sports programs and camps for
children; improved access to buildings, playgrounds and universities;
helped individuals learn how to manage their financial well-being, and
provided support services for veterans. Critically, these programs use
the public attention that comes from receiving PRC funding--often
fairly small grants--to raise additional funds in their community,
creating a powerful return on investment.
Military & Veterans Program; Multicultural Outreach Program.--The
PRC has a comprehensive Military and Veterans Program, which provides
dedicated resources to help individuals navigate military and civilian
benefits and programs as they reintegrate into their communities. The
PRC also facilitates a Multicultural Outreach Program that is designed
to engage and support underserved populations like ethnic minorities,
older adults, low income earners, and LGBTQ individuals.
ChristopherReeve.org.--One of the most challenging aspects about
living with paralysis is combating feelings of isolation and exclusion,
especially for those who are unable to leave their homes due to
physical and societal barriers. The Reeve Foundation's website,
ChristopherReeve.org, provides a vibrant online community and resource
hub that attracts close to two million visitors per year.
The Value of Integrated Services
There are many examples in which an individual living with
paralysis has not only participated in one program of the PRC, but has
benefitted from a suite of our free services. When Sterling Thomas, a
college student from Oklahoma, sustained a spinal cord injury in 2012,
his family was at a loss as to how to emotionally and physically
support their son. They turned to the Reeve Foundation's website to
understand Sterling's prognosis and prepare for his future needs. They
referred to the Paralysis Resource Guide as a critical tool for
managing his health, and connected with an Information Specialist who
provided guidance to further improve Sterling's quality of life. Once
Sterling and his father felt confident in their path forward, they
became certified peer mentors through the Peer and Family Support
Program to help other families in the Oklahoma area navigate life after
paralysis. And, I am excited to report that the Sterling Thomas ``Push-
Push-Pray Foundation'' received a Quality of Life grant. Sterling's is
just one of many stories of how the PRC serves as a lifeline to help
families from the moment of injury or diagnosis through the many
chapters of living with paralysis-providing a continuum of care made
possible by the depth and breadth of the PRC's offerings.
The Importance of Federal Funding
I would like to close my remarks by emphasizing why Federal funding
for this program is so important. Simply put: neither the Reeve
Foundation, nor any organization competing to run the PRC, could
provide this type of centralized resource alone. Because many
individuals, including my daughter, are required to attend
rehabilitation clinics and/or draw on other resources from out of
state, nationwide expertise is required. To get the benefit of
investing in a centralized hub of information, we need to promote and
deliver these services at scale. Federal funds are essential for this
valuable, life-changing resource to work.
Federal funding for the PRC is also a good investment. Our
resources help people adapt their homes and gain the tools they need to
return to their communities, and eventually to work. The programs
funded by the PRC make people less dependent on healthcare providers,
so they can reduce their medical costs-saving dollars for Medicaid and
Medicare. Our Military and Veterans Programs provide an essential
continuum of support for returning heroes as they transition out of the
VA system. Our national model and household name allows us to leverage
a small team to have maximum impact. The PRC is smart Federal funding
at work.
Christopher Reeve once said, ``Hope is like a lighthouse,'' helping
individuals who are lost in the darkness find their way. But like a
lighthouse, hope must be built on solid foundations. The resources,
support and community created by the PRC are the foundation for hope
for millions of individuals affected by paralysis around the country. I
thank you for your ongoing support and urge you to protect the
Paralysis Resource Center so that individuals nationwide can achieve
greater quality of life, health and independence. Thank you.
[This statement was submitted by Jay P. Shephard, Chairman, Board
of
Directors, Christopher & Dana Reeve Foundation.]
______
Prepared Statement of the Coalition for Clinical and
Translational Science
fiscal year 2021 appropriations recommendations
_______________________________________________________________________
--CCTS joins the broader medical research community in asking
Congress to provide the National Institutes of Health (NIH)
with at least a $3 billion funding increase for fiscal year
2021, to bring total agency funding up to a minimum of $44.7
billion annually.
--Please provide the Clinical and Translational Science Awards
(CTSA) program at the National Center for Advancing
Translational Sciences (NCATS) with at least a $30 million
increase in dedicated line-item funding for fiscal year
2021 to bring total support for the program up to a minimum
of $608 million in annual dedicated funding.
--Please provide the Cures Acceleration Network (CAN) at NCATS with
$100 million in dedicated funding for fiscal year 2020, to
bolster total support for the program and to ensure that
adequate resources are available to ensure notable
progress.
--Please provide the Institutional Development Awards (IDeA)
program and the Research Centers in Minority Institutions
(RCMI) program at NIH with meaningful funding increases for
fiscal year 2021 ($25 million and $12 million respectively,
consistent with fiscal year 2020 increases).
--CCTS joins the broader medical research community in asking
Congress to provide the Agency for Healthcare Research and
Quality (AHRQ) with a $131 million increase for fiscal year
2020 to bring total funding up to $471 million annually.
--Please continue to support research training and career
development activities at NIH and AHRQ to ensure that the
next generation of clinical and translational researchers
is well-prepared.
--CCTS joins the broader public health community in requesting $8.3
billion for the Centers for Disease Control and Prevention
(CDC).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for considering the views of the clinical
and translational research community as work on fiscal year 2021
appropriations. Moreover, thank you for providing NIH with a
significant $2.6 billion funding increase for fiscal year 2020, and for
protecting line-item funding for the CTSA program, which provides
critical infrastructure support to meritorious institutions across the
country and serves as a major catalyst for advancing the full spectrum
of medical research at NIH. As you consider fiscal year 2021 funding,
the community would like to highlight the critical role that clinical
research infrastructure, the CTSA program, and the full spectrum of
medical research play in quickly translating scientific advancements
into therapies, diagnostic tools, and public health information to
properly address COVID-19 or any other health challenge.
about the coalition for clinical and translational science
The Association for Clinical and Translational Science, the
Clinical Research Forum, the CTSA PIs, and the related stakeholder
community work together through the Coalition for Clinical and
Translational Science (CCTS) to speak out with a unified voice on
behalf of the clinical and translational research community. CCTS is a
nationwide, grassroots network of dedicated individuals who seek to
educate Congress and the administration about the value and importance
of clinical and translational research, and research training and
career development activities. Our 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.
about the ctsa program and the full spectrum of medical research
The CTSA Program was established to disseminate medical and
population health interventions to patients and populations more
quickly, and to enable research teams, including scientists, patient
advocacy organizations and community members, to tackle system-wide
scientific and operational problems in clinical and translational
research that no one team can overcome in isolation. The CTSA program
honors the promise of the Cures Act by improving research
infrastructure and accelerating the rate at which breakthroughs in
basic science are translated to innovations with a tangible benefit to
patients.
The goals of the CTSA program include; (1) train and cultivate the
translational science workforce, (2) engage patients and communities in
every phase of the translational process, (3) promote the integration
of special and underserved populations in translational research across
the human lifespan, (4) innovate processes to increase the quality and
efficiency of translational research, particularly of multisite trials,
(5) advance the use of cutting-edge informatics.
The CTSA Program supports a national network of ``hubs'' at
academic research centers across the country that work collaboratively
to improve the translational research process to get more treatments to
more patients more quickly. The hubs collaborate locally and regionally
to catalyze innovation in research training, tools, and processes.
Approximately 60 medical research institutions across the nation
currently receive CTSA program funding, and these hubs work together to
speed the translation of research discovery into improved patient care
and public health. Resources appropriated to these hubs allow the
network to expand to include additional sites, advance science, and
directly invest in the health workforce of the communities where they
are located.
The full spectrum of translational science takes the fruits of
basic and pre-clinical research and translates them into effective
clinical care and public health measures, with a focus on having impact
on health. In order to maximize efficiency and patient-centeredness,
this research must be done collaboratively and in a systematic way.
This team-science approach focuses on outcomes and patient/health
system benefits, rather than the advancement of science for the sake of
science. There are numerous examples of the success of this approach,
including the community's annual awards for the ``Top 10'' projects,
which can be viewed here. In fact, the project studying culturally
competent healthcare delivery using community barber shops in Los
Angeles, was highlighted in NCATS' fiscal year 2020 budget request.
Finally, the appropriations committees have included meaningful
committee recommendations in the past that have facilitated meaningful
advancements for the full spectrum of medical research, the CTSA
program, and career development for early stage investigators and we
hope similar recommendations will be provided for fiscal year 2021.
a few recent examples of ctsa program efforts to address covid-19
University of Alabama at Birmingham
The UAB CTSA has joined with the Pitt CTSA and NIAID to perform a
very large serologic surveillance study for antibodies to SARS-CoV2.
This effort has had >400,000 expressions of interest by respondents and
we are developing the sampling strategy now. This effort went from the
first concept call to going live with all approvals in 3 weeks and a
day.
The UAB CTSA and its Partner Network have also embarked on a large
scale whole genome sequencing study of severe COVID-19 disease in the
special populations we serve in the Deep South to understand the
disparities in clinical outcome and help identify factors which will
allow earlier and more effective intervention with immunomodulatory
agents.
Working with our CCTS Partner HudsonAlpha, we are developing an
innovative molecular diagnosis platform based on multiplexed next
generation sequencing to enable high throughput diagnosis at a
community and population scale. Further, supporting work with a
biotechnology company in Maryland, we are developing a nasally
delivered vaccine to protect against respiratory acquisition of viral
infection.
Finally, using the CTSA platform to stand up clinical trials,
nimbly and effectively, and working with the CTSA consortium's Trial
Innovation Network, UAB has initiated clinical trials studying the
efficacy of convalescent plasma (in partnership with Johns Hopkins),
blockade of interleukin-1 and multiple other studies.
Vanderbilt University
The Vanderbilt Institute for Clinical and Translational Research
made the early decision not to pursue studies that did not have any
control, and instead chose to focus on randomized clinical trials that
could provide strong evidence to the U.S. and the world about which
treatments meet the gold standard for being effective against COVID-19.
As a direct result of funding through the CTSA program, Vanderbilt was
positioned to redeploy its clinical research workforce to start up no
fewer than ten clinical trials in less than 7 weeks. In one example,
Vanderbilt partnered with the NHLBI-funded PETAL Network to start up
the multi-site ORCHID trial of hydroxy-chloroquine. The protocol was
developed, received regulatory approval and funding, and enrolled its
first patient all in under 14 days. This speed in response was possible
only because of the common tools and processes that have been built by
the CTSA Program. REDCap, for example, is a database system developed
by Vanderbilt and deployed at thousands of institutions across the
globe at no cost because of support from NIH and the CTSA Program.
REDCap has been used by state health departments to track the pandemic,
and is being used by researchers to collect data for hundreds of
clinical trials and studies of COVID-19.
An important feature of research institutions enabled by the CTSA
Program is the ability to be nimble. Traditional clinical trials can
take a year or more to enroll patients and produce evidence that will
change practice. The statisticians at Vanderbilt University Medical
Center, with partners across the country, are pioneering ways of
monitoring the studies and analyzing data more quickly, so that as soon
as meaningful information is available it can be used to decide about
releasing effective drugs, studying new drugs, or stopping studies of
drugs that do not appear to be effective. The CTSA Program has invested
in biostatistics and data science as a foundation of learning from data
in healthcare and clinical trials.
Vanderbilt is also redirecting other research efforts that have
utility in COVID-19. For example, every year, more than 300,000 babies
in the U.S will be born prematurely and cared for in neonatal intensive
care units (NICUs). Monitoring vital signs in these babies has not
changed much in 50 years, relying on stiff electrodes glued to the skin
using strong adhesives coupled to long wires tethered to boxes on the
wall. For tiny neonates, these wires prevent skin-to-skin contact and
bonding, frustrate basic nursing care, and often lead to serious skin
injury; 90 percent of NICU babies will have scars from the very same
medical equipment keeping them alive. The multidisciplinary research
team of engineers, neonatologists, nurses, and dermatologists have
developed a low-cost, skin-like, wireless sensors capable of ICU-grade
monitoring. No-touch technologies like this are essential in a pandemic
such as the COVID-19 outbreak, and would not be possible without the
ongoing and sustained investment in clinical and translational research
infrastructure.
Tufts University
The Tufts Clinical and Translational Science Institute (CTSI) is
funding a study to assess the effectiveness of a known therapy, called
infliximab therapy, to reduce the cytokine storm that causes severe
COVID-19 disease, thereby reducing the need to use a ventilator and,
most importantly, preventing deaths. Clinical data strongly support the
rationale for investigating the efficacy and safety of anti-TNFa
therapy in patients at risk for rapid cardiorespiratory decompensation
and early mortality from severe COVID-19.
Rapid testing for COVID-19 is essential for keeping people safe and
reopening our economy. Toward these goals, Tufts CTSI is funding the
development of a point-of care test, essentially a ``lab on a chip,''
that can diagnose both influenza and COVID-19 simultaneously on a large
scale so that health providers and the public have the information they
need in real time. Moreover, a CTSI-faculty member at the Tufts CTSI
partner MIT Institute for Medical Engineering and Science, who worked
with a team of MIT colleagues to quickly design an alternative face
shield. This new design was made from inexpensive, easily accessible
materials, which allowed them to move immediately to mass production.
They partnered with a manufacturer in Massachusetts to start production
in record time, which has since expanded internationally. They donated
the first 100,000 face shields.
The University of Utah
The Utah Center for Clinical and Translational Science and its
community affiliate partner, Intermountain Healthcare--have initiated
companion trials looking at the impact of hydroxychloroquine on the
duration of infectivity (viral shedding) and household acquisition of
COVID-19. This study will create a biobank of samples from COVID-19
patients to help better understand the virus and potential treatments.
We have collaborated actively with rural and frontier communities in
Utah on this study to ensure that all Utahans are able to participate
in this and all COVID-19-related research. The Utah Trial Innovation
Center and the Vanderbilt Recruitment Innovation Center jointly
provided a comprehensive consultation.
The Utah Data Science Service, a collaboration with University of
Utah Health, has created a COVID-19 dashboard that is helping the
hospital track the impact of this epidemic, understand resource
pressures, and plan to safely reopen. It has also helped inform
conversations in our State government regarding racial, ethnic, and
sociodemographic disparities in the impact of COVID-19. Further, the
biomedical informatics core, in collaboration with the University of
Buenos Aires is undertaking work to model variations in the Angiotensin
Converting Enzyme receptor-a major point of entry for SARS-CoV-2 into
cells to cause infection and disease.
[This statement was submitted by Harry P. Selker, MD, MSPH,
Chairman,
Clinical Research Forum.]
______
Prepared Statement of the Coalition for Health Funding
The Coalition for Health Funding--an alliance of over 93 national
health organizations representing more than 100 million patients and
consumers, health providers, professionals and researchers--welcomes
the opportunity to submit this statement for the record about the
importance of health funding in the Labor-HHS-Education bill. As a
coalition, our member organizations speak with one voice before
Congress and the administration in support of a robustly funded Federal
health program with the shared goal of improved health and well-being
for all. Each member organization has their own funding priorities
within the Department of Health and Human Services (HHS), but we are
all united in our support of strong, sustained, predictable funding for
all Federal agencies and programs across the public health continuum.
The Coalition strongly believes that Congress must support a strong
302(b) allocation for the L-HHS appropriations bill to ensure we are
working across the spectrum to protect, promote, and improve the health
of all Americans.
As this committee and Congress have demonstrated in the past, with
strong bipartisan support, HHS agencies have different roles in
addressing our nation's mounting health demands. Our priorities, while
different are all interconnected, and the public health continuum is
only as strong as its weakest link. For example, investment in medical
research at the National Institutes of Health (NIH) is important,
however scientific research and development alone does not help treat
Americans in need. The Food and Drug Administration (FDA) is necessary
to provide reasonable guidance and lead innovation in clinical trials,
safeguard patients, ensure medical efficacy, and approve new
treatments. The Centers for Disease Control and Prevention (CDC),
Health Resources and Services Administration (HRSA), Substance Abuse
and Mental Health Services Administration (SAMHSA), and Indian Health
Service work to ensure we have qualified health professionals who can
move discoveries from the discovery pipeline to public health delivery,
while supporting Americans who are awaiting new cures, and prevent them
from getting sick in the first place. Also, the Agency for Healthcare
Research and Quality (AHRQ) provides evidence and communicates what
treatments work for patients helping, health professionals deliver the
right treatment to right patient at the right time. And finally, the
Administration for Community Living works to support those who are
aging and those who have disabilities--as well as their caregivers--so
that they can live avoid unnecessary costs and live improved lives.
Despite the importance of these agencies and their programs in
protecting Americans' lives, Federal spending for public health and
health research represents has not kept pace with ever increasing
demands. We thank the Committee for supporting increases in the past.
We are concerned that the trends over time that have challenged
discretionary health spending and leave these critical needs woefully
underfunded. The bill has never received a proportional funding
increase from previous bipartisan budget deals, and as a result has
lost almost $16 billion in purchasing power over the last decade; it
would require a 302(b) allocation of $199 billion to return to the
fiscal year 2010 level in inflation-adjusted dollars. In fiscal year
2020 health spending was $184.9 billion in discretionary funding, an
increase of $4.9 billion over the 2019 enacted level and $43 billion
over the President's 2020 budget request. To support robust funding,
the 302(b) allocation for the Labor-HHS-Education Subcommittee must be
raised to adequately support these important public health funding
needs. Most recently, for fiscal year 2020 non-defense discretionary
funding received just a 2.8 percent increase in funding when overall
non-defense discretionary funding increased by 4.1 percent, leaving
important services and activities underfunded by billions of dollars.
The Coalition for Health Funding urges appropriators to ensure that the
Labor, Health and Human Services, Education, and Related Agencies
appropriations bill receives an increase for the 302(b) allocation in
fiscal year 2021 that allows these programs to move past the 2010
inflation adjusted amount and into a future of stronger funding.
Addressing research into chronic disease and acute health events
that cost American lives, pandemic response, disaster recovery, shoring
up our healthcare delivery infrastructure needs, and support for first
responders are just some of the challenges on the horizon that
complicate the subcommittee's work in fiscal year 2021 that are of
great concern to the Coalition for Health Funding. The Coalition
strongly believes that COVID-19 pandemic is demonstrating the dire
price we are paying for neglecting the public health infrastructure and
healthcare preparedness. For instance, Public Health Emergency
Preparedness Cooperative Agreement (PHEP) funding has decreased from
$939 million in fiscal year 2003 to $675 million in fiscal year 2020
and ASPR's Hospital Preparedness Program (HPP) has been cut from $515
million in fiscal year 2003 to $275 million in fiscal year 2020. These
programs are vital to the core infrastructure needed at the Federal,
state, and local levels to ensure we are prepared for not only
pandemics but other events such as natural disasters, measles
outbreaks, and the list goes on and on.
Finally, the Coalition voices our strong advocacy for the Committee
and Congress to work together to avoid continuing resolutions (CRs) in
appropriations process. The Coalition is deeply concerned that
automatic CRs would harm public health and other domestic programs
funded through the annual appropriations bills. When the Federal budget
process breaks down, and CRs are the norm, it creates dysfunction and
disruption across the entire public health continuum. New initiatives,
innovations, and hires are put on hold. Procurement cycles lapse.
Opportunities are lost and ultimately the American people are hurt.
Automatic CRs would only exacerbate this uncertainty and remove the
incentives for Congress to complete the appropriations process in a
timely manner, we fear automatic CRs would ultimately lead to cuts in
health funding, whether the automatic CR would freeze funding at the
current year's levels, or require a percentage of cuts.
We hope in your ongoing deliberations on fiscal 2021 and beyond you
will recognize the importance of raising the spending caps and consider
the costs-both real costs and opportunity costs-of spending cuts, and
the value of all public health and health research programs in
improving the lives of American families. We look forward to working
with the subcommittee in these endeavors, and hope you will turn to the
Coalition for Health Funding as a resource in the future.
[This statement was submitted by Angela M. Ostrom, J.D., Executive
Director, Coalition for Health Funding.]
______
Prepared Statement of the College on Problems of Drug Dependence
Thank you for the opportunity to submit testimony in support of the
National Institute on Drug Abuse. The College on Problems of Drug
Dependence (CPDD), a membership organization with over 1000 members,
has been in existence since 1929. It is the longest standing group of
scholars in the U.S. addressing problems of drug dependence and abuse.
CPDD serves as an interface among governmental, industrial and academic
communities maintaining liaisons with regulatory and research agencies
as well as educational, treatment, and prevention facilities in the
drug abuse field.
In the fiscal year 2021 Labor-HHS Appropriations bill, we request
that the subcommittee provide at least $3 billion above the fiscal year
2020 level for the National Institutes of Health (NIH), and within that
amount a proportionate increase for the National Institute on Drug
Abuse (NIDA) using the Institute's conferenced level of $1,462,016,000
as NIDA's base budget for Fiscal 2021. In addition, within the NIH
total, we request at least $500 million for targeted research on opioid
misuse and addiction, development of opioid alternatives, pain
management, and addiction treatment, of which at least $250 million is
allocated to NIDA and included in its base budget for Fiscal 2021.
We also respectfully request the inclusion of the following NIDA
specific report language.
Opioid Initiative. The Committee continues to be extremely
concerned about the epidemic of prescription opioids, heroin, and
illicit synthetic opioid use, addiction and overdose in the U.S.
Approximately 174 people die each day in this country from drug
overdose (over 100 of those are directly from opioids), making it one
of the most common causes of non-disease-related deaths for adolescents
and young adults. This crisis has been exacerbated by the availability
of illicit fentanyl and its analogs in many communities. The Committee
appreciates the important role that research plays in the various
Federal initiatives aimed at this crisis. To combat this crisis, the
bill includes at least $250,000,000 for research related to preventing
and treating opioid misuse and addiction. With additional funding for
NIDA targeted at addressing the opioid epidemic, the Institute's opioid
specific allocation should be targeted for the following areas:
development of safe and effective medications and new formulations and
combinations to treat opioid use disorders and to prevent and reverse
overdose; conduct demonstration studies to create a comprehensive care
model in communities nationwide to prevent opioid misuse, expand
treatment capacity, enhance access to overdose reversal medications,
and enhance prescriber practice; test interventions in justice system
settings to expand the uptake of medication assisted treatment and
methods to scale up these interventions for population-based impact;
and develop evidence-based strategies to integrate screening and
treatment for opioid use disorders in emergency department and primary
care settings.
Methamphetamines and Other Stimulants. The Committee is concerned
that, according to the latest data released by the Centers for Disease
Control and Prevention, the number of deaths from the drug categories
that include methamphetamine and cocaine more than doubled from 2015-
2018, leading some to refer to stimulant overdoses as the ``fourth
wave'' of the current drug addiction crisis in America following the
rise of opioid-related deaths involving prescription opioids, heroin,
and fentanyl-related substances. The Secretary has also stated that
methamphetamine is highly addictive and there are no FDA-approved
treatments for methamphetamine and other stimulant use. The Committee
continues to support NIDA's efforts to address the opioid crisis, has
provided continued funding for the HEAL Initiative, and supports NIDA's
efforts to combat the growing problem of methamphetamine and other
stimulant use and related deaths.
Barriers to Research. The Committee is concerned that restrictions
associated with Schedule I of the Controlled Substance Act effectively
limit the amount and type of research that can be conducted on certain
Schedule I drugs, especially opioids, marijuana or its component
chemicals and new synthetic drugs and analogs. At a time when we need
as much information as possible about these drugs to find antidotes for
their harmful effects, we should be lowering regulatory and other
barriers to conducting this research. The Committee directs NIDA to
provide a short report on the barriers to research that result from the
classification of drugs and compounds as Schedule I substances
including the challenges researchers face as a result of limited access
sources of marijuana including dispensary products.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment. Education is a critical
component of any effort to curb drug use and addiction, and it must
target every segment of society, including healthcare providers
(doctors, nurses, dentists, and pharmacists), patients, and families.
Medical professionals must be in the forefront of efforts to curb the
opioid crisis. The Committee continues to be pleased with the NIDAMED
initiative, targeting physicians-in-training, including medical
students and resident physicians in primary care specialties (e.g.,
internal medicine, family practice, and pediatrics). NIDA should
continue its efforts in this space, providing physicians and other
medical professionals with the tools and skills needed to incorporate
substance use and misuse screening and treatment into their clinical
practices.
Marijuana Research. The Committee is concerned that marijuana
public policies in the states (medical marijuana, recreational use,
etc.) are being changed without the benefit of scientific research to
help guide those decisions. NIDA is encouraged to continue supporting a
full range of research on the health effects of marijuana and its
components, including research to understand how marijuana policies
affect public health.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA fund
research on the use and consequences of these devices. The Committee
also supports the Population Assessment of Tobacco and Health (PATH)
Study, a collaboration between NIDA and the U.S. Food and Drug
Administration (FDA) Center for Tobacco Products to help scientists
learn how and why people start using tobacco products, quit using them,
and start using them again after they have quit, as well as how
different tobacco products affect health outcomes over time.
In addition, we request the following report language within the
Office of the Director account:
The HEALthy Brain and Child Development (BCD) Study. The Committee
recognizes and supports the NIH HEALthy Brain and Child Development
Study, which will establish a large cohort of pregnant women from
regions of the country significantly affected by the opioid crisis and
follow them and their children for at least 10 years. This knowledge
will be critical to help predict and prevent some of the known impacts
of pre- and postnatal exposure to drugs or adverse environments,
including risk for future substance use, mental disorders, and other
behavioral and developmental problems. The Committee recognizes that
the BCD Study is supported in part by the NIH HEAL Initiative?, and
encourages other NIH Institutes, such as NICHD, NIMH, NHLBI, NCI,
NIAAA, NIMH, NINR, as well as the Office of the Director to support
this important study.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a financial toll on our resources.
Over the past three decades, NIDA-supported research has revolutionized
our understanding of addiction as a chronic, often-relapsing brain
disease -this new knowledge has helped to correctly emphasize the fact
that drug addiction is a serious public health issue that demands
strategic solutions.
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 in strategies to address these problems, but areas
of continuing significant concern include the recent increase in
lethalities due to heroin and synthetic fentanyl, as well as continued
abuse of prescription opioids. 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 research. However, since the number of individuals
who are 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 2021 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction deserves to
be prioritized accordingly. Thank you for your support for the National
Institute on Drug Abuse.
______
Prepared Statement of the Congressional Fire Services Institute
Dear Chairman Blunt and Ranking Member Murray,
On behalf of the nation's fire and emergency services, we write to
urge your support for a vital program addressing the health and safety
of our nation's firefighters. As you consider the fiscal year 2021
Labor, Health and Human Services, Education, and Related Agencies
Appropriations bill, we urge you to fully fund the National Firefighter
Registry at the authorized level of $2.5 million. We very much
appreciate the program being funded at this level in fiscal year 2020
and we ask that it be maintained this year.
During the 115th Congress, both the House and Senate unanimously
approved the Firefighter Cancer Registry Act (Public Law 115-194). The
bipartisan legislation created a specialized national registry to
provide researchers and epidemiologists with the tools and resources
needed to improve research collection activities related to the
monitoring of cancer incidence among firefighters.
Studies have indicated a strong link between firefighting and an
increased risk of several major cancers. However, certain studies
examining cancer risks among firefighters have been limited by the
availability of important data and relatively small sample sizes that
have an underrepresentation of women, minorities, and volunteer
firefighters. As a result, public health researchers are unable to
fully examine and understand the broader epidemiological cancer trends
among firefighters. The National Firefighter Registry is an important
resource to better understand the link between firefighting and cancer,
potentially leading to better prevention and safety protocols.
Thank you for your consideration, and your continued leadership and
support for America's fire and emergency services.
Sincerely,
Congressional Fire Services Institute
International Association of Arson Investigators
International Association of Fire Chiefs
International Association of Fire Fighters
International Fire Service Training Association
International Society of Fire Service Instructors
National Fallen Firefighters Foundation
National Fire Protection Association
National Volunteer Fire Council
[This statement was submitted by Michaela Campbell, Director of
Government
Affairs, Congressional Fire Services Institute.]
______
Prepared Statement of the Consortium of Social Science Associations
On behalf of the Consortium of Social Science Associations (COSSA),
I offer this written testimony for inclusion in the official committee
record. For fiscal year 2021, COSSA urges the Committee to appropriate:
--$44.7 billion for the National Institutes of Health;
--$8.3 billion for the Centers for Disease Control and Prevention,
including $189 million for the National Center for Health
Statistics;
--$471 million for the Agency for Healthcare Research and Quality;
--$658.3 million for the Bureau of Labor Statistics;
--$670 million for the Institute of Education Sciences; and
--$106.1 million for the Department of Education's International
Education and Foreign Language programs.
First, allow me to thank the Committee for its long-standing,
bipartisan support for scientific research. Strong, sustained funding
for all U.S. science agencies is essential if we are to make progress
toward improving the health and economic competitiveness of the nation.
The need for increased investment in science has become even more
pronounced in light of the ongoing COVID-19 emergency. It is important
to note that the enclosed requests are for baseline budgets for fiscal
year 2021 and, without supplemental funding, will not be sufficient in
making the agencies and programs whole once the pandemic subsides and
Federal agencies return to regular activity.
national institutes of health
COSSA joins the more than 330 organizations in support of $44.7
billion for the National Institutes of Health (NIH) in fiscal year
2021. COSSA appreciates the Subcommittee's leadership and its long-
standing bipartisan support of NIH, especially during difficult
budgetary times. However, recent public health events continue to
underscore the need for additional investment. This funding level is
important for NIH's baseline, but as previously stated, will not be
enough to solve the present COVID-19 emergency and prepare for future
public health crises.
To be truly transformative, NIH will need to continue to embrace
research from a wide range of scientific disciplines, including the
social and behavioral sciences. The Office of Behavioral and Social
Sciences Research (OBSSR), housed within the Office of the NIH
Director, coordinates basic, clinical, and translational research in
the behavioral and social sciences in support of the NIH mission, and
co-funds highly rated grants in the behavioral and social sciences in
partnership with individual institutes and centers. Unfortunately,
OBSSR's budget has been held roughly flat for several years despite the
sizable increases to the NIH budget. Knowledge about contagion and
social influences on health are needed now more than ever. In addition,
understanding behavioral influences on health is needed to battle the
leading causes of morbidity and mortality, namely, obesity, heart
disease, cancer, AIDS, diabetes, age-related illnesses, accidents,
substance abuse, and mental illness. We urge Congress to emphasize
support for OBSSR and encourage NIH to increase the Office's budget in
fiscal year 2021.
centers for disease control and prevention
COSSA urges the Subcommittee to appropriate $8.3 billion for the
Centers for Disease Control and Prevention (CDC), including $189
million for CDC's National Center for Health Statistics (NCHS). Social
and behavioral science research plays a crucial role in helping the CDC
carry out this mission by informing the CDC's behavioral surveillance
systems, public health interventions, and health promotion and
communication programs that help protect Americans and people around
the world from disease. As the Department of Health and Human Services'
principal statistical agency, NCHS produces data on all aspects of our
healthcare system, including opioid and prescription drug use, maternal
and infant mortality, chronic disease prevalence, healthcare
disparities, emergency room use, health insurance coverage, teen
pregnancy, and causes of death. As a result of the rising costs of
conducting surveys and years of flat or near-flat funding, NCHS has had
to focus nearly all of its resources on continuing to produce the high-
quality data that communities across the country rely on to understand
their health. Additional funding would allow NCHS to respond to rising
costs, declining response rates, and an ever-more complex healthcare
system and capitalize on opportunities surrounding advances in
statistical methodology, big data, and computing to produce better
information more quickly and efficiently, while reducing the reporting
burden on local data providers.
Agency for Healthcare Research and Quality
COSSA urges the Subcommittee to appropriate $471 million for the
Agency for Healthcare Research and Quality (AHRQ), which would allow
AHRQ to rebuild portfolios terminated as a result of years cuts and
expand its research and training portfolio to address our nation's
pressing and evolving healthcare challenges. AHRQ funds research on
improving the quality, safety, efficiency, and effectiveness of
America's healthcare system. It is the only agency in the Federal
government with the expertise and explicit mission to fund research on
improving healthcare at the provider level (i.e., in hospitals, nursing
homes, and other medical facilities). Its work is complementary--not
duplicative--of other HHS agencies and requires robust support,
especially in these trying times.
bureau of labor statistics
COSSA urges the Subcommittee to appropriate $658.3 million for the
Bureau of Labor Statistics (BLS) for its core programs. BLS produces
economic data that are essential for evidence-based decisionmaking by
businesses and financial markets, Federal and local officials, and
households faced with spending and career choices. The BLS, like every
Federal statistical agency, must modernize in order to produce the gold
standard data on jobs, wages, skill needs, inflation, productivity and
more that our businesses, researchers, and policymakers rely on so
heavily. The requested funding level would allow BLS to continue to
support evidence-based policymaking, smart program evaluation, and
confident business investment.
institute of education sciences
COSSA requests $670 million for the Institute of Education Sciences
(IES) in fiscal year 2021. Within the Department of Education, IES
supports research and data to improve our understanding of education at
all levels, from early childhood and elementary and secondary
education, through higher education. Research further examines special
education, rural education, teacher effectiveness, education
technology, student achievement, reading and math interventions, and
many other areas. IES-supported research has improved the quality of
education research, led to the development of early interventions for
improving child outcomes, generated and validated assessment measures
for use with children, and led to the establishment of the What Works
Clearinghouse for education research, highlighting interventions that
work and identifying those that do not. With increasing demand for
evidence-based practices in education, adequate funding for IES is
essential to support studies that increase knowledge of the factors
that influence teaching and learning and apply those findings to
improve educational outcomes.
international education and foreign language programs
The Department of Education's International Education and Foreign
Language programs play a major role in developing a steady supply of
graduates with deep expertise and high-quality research on foreign
languages and cultures, international markets, world regions, and
global issues. COSSA urges a total appropriation of $106.1 million
($95.7 million for Title VI and $10.4 million for Fulbright-Hays),
which would help make up for lost investment and purchasing power over
many years of flat-funding. In addition to broadening opportunities for
students in international and foreign language studies, such support
would also strengthen the nation's human resource capabilities in
strategic areas of the world that impact our national security and
global economic competitiveness.
Thank you for the opportunity to present this testimony on behalf
of the social and behavioral science research community.
[This statement was submitted by Wendy Naus, Executive Director,
Consortium of Social Science Associations.]
______
Prepared Statement of The Corps Network
Dear Chairwoman DeLauro, Chairman Blunt, Ranking Member Cole, and
Ranking Member Murray,
On behalf of The Corps Network, our 131 member Corps, and the
25,000 Corpsmembers they annually engage, thank you for your hard work
in fiscal year 2020 and for the opportunity to share our priorities in
fiscal year 2021.
As far back as the 1930s, Conservation Corps have been helping the
Federal land management agencies complete important and necessary
projects in a high quality and cost-effective manner. The Civilian
Conservation Corps (CCC) enrolled approximately 3 million young men
from 1933-1942; built more than 125,000 miles of roads, 47,000 bridges,
318,000 dams, and 3,000 fire towers; planted nearly 3 billion trees;
and developed more than 3 million acres for public use in 854 state and
94 national parks. The CCC was disbanded in 1942.
Today's 21st Century Conservation Service Corps provide
Corpsmembers with opportunities for hands-on job experience, to earn
certifications, and skills development in leadership, problem-solving
and teamwork. By partnering with businesses, schools and training
organizations, Corps help address local workforce needs and create
pathways to employment while continuing to undertake priority projects
at all levels of government.
We respectfully request that you support these fiscal year 2021
funding levels for programs that support Corps across the country and
generate significant return on investment for our communities and
people:
--Corporation for National and Community Service--AmeriCorps--
$545,000,000
--Corporation for National and Community Service--VISTA--$131,000,000
--Corporation for National and Community Service--NCCC--$42,000,000
--Corporation for National and Community Service--State Service
Commissions--$21,000,000
--Corporation for National and Community Service--National Service
Trust--$276,000,000
--Department of Labor--Job Corps--US Forest Service--$1,868,655,000
--Department of Labor--YouthBuild--$127,500,000
--Department of Labor--Adult and Youth Training Grants (WIOA)--
$2,929,323,600
--Department of Health and Human Services--Community Services Block
Grant--$798,000,000
Corporation for National and Community Service
While there are many critical priorities under your jurisdiction,
CNCS programs like AmeriCorps meet some of the most vital public needs
in rural and urban communities around the country, leverage significant
additional private funding and resources through locally-based
organizations, and save the government money in the long run. A recent
study put the return on investment in AmeriCorps at 4:1. Especially in
a difficult fiscal environment, an investment of taxpayer resources in
a proven, local partnership-based effort like this makes sense.
AmeriCorps invests in local, cost-effective, public-private
partnerships like Corps that generate significant private matching
funds. In fact, AmeriCorps programs generate more private resources
than the Federal investment, making this an important partnership to
attract additional support for important local needs and more
effectively using taxpayer resources. Corps utilize AmeriCorps to help
make local, state, and Federal Government more efficient and effective
by ``putting service to work'' on a variety of cross-jurisdictional
projects and leveraging limited government funds.
Last year alone, Corps engaged over 25,000 youth and veterans in
conservation-related service in all 50 states and DC, Puerto Rico, and
American Samoa. For example, in fiscal year 2019 Corps built, improved,
or maintained 13,317 miles of multi-use trails and waterways; restored
1.4 million acres of wildlife and fish habitat; cleared 66,929 acres of
invasive species; removed 19,405 acres of hazardous fuels; increased
access to and utilization of 7,914 recreational facilities; responded
to 223 wildfires and other natural disasters; preserved 336 historic
structures, and planted almost 1.1 million trees. Further, they
leveraged an additional 107,000 volunteers who completed 537,879
service hours valuing over $13.6 million dollars.
Corps and AmeriCorps State and National Grants
Corps have enrolled AmeriCorps members from the beginning: during
the first full year of AmeriCorps in 1994, 53 Corps received AmeriCorps
grants. Today, Corps receive AmeriCorps State & National grants that
are competitively awarded. The AmeriCorps competitive grants category
includes grants to organizations operating in one state only (state)
and organizations operating in more than one state (multi). Corps also
receive funding through their Governor-appointed State Service
Commissions--the state partners of the Corporation for National and
Community Service (CNCS).
Education Award Program (EAP)
In the last 5 years, roughly 14,700 Corpsmembers have enrolled in
The Corps Network (TCN) Education Award Program. EAP members work on
Environmental Stewardship projects in hundreds of communities across
more than 40 states and DC. Project partners include U.S. Forest
Service, National Park Service, Bureau of Land Management, U.S. Fish &
Wildlife Service, as well as state and local partners.
Opportunity Youth Service Initiative (OYSI)
Since 2015, over 3,500 Corpsmembers have enrolled into TCN's
Opportunity Youth Service Initiative (OYSI) Program. The OYSI Program
is designed to engage youth from disadvantaged backgrounds (e.g.
economically disadvantaged, unemployed, past court involvement,
physical or learning disability) in education and conservation service.
During their term of service, Corpsmembers develop job skills, earn
certifications, complete their high school requirements, and receive
assistance in transition to postsecondary education or the workforce.
Transportation and Infrastructure Program (TIP)
The Transportation Infrastructure Program (TIP) supports AmeriCorps
members completing public lands and transportation infrastructure
projects in multiple communities across 13 states. Since 2019, 156
Corpsmembers have enrolled in the TIP.
AmeriCorps Disaster Response Teams (A-DRT)
AmeriCorps Disaster Response Teams (A-DRT) are a nationally
deployable asset that engage in critical activities in all phases of
the disaster cycle. The Corporation for National and Community
Service's Disaster Services Unit administers the A-DRT AmeriCorps
program, serving as the coordinating entity for all deployments and
ensuring appropriate integration into the Incident Command Structure
(ICS). Corpsmembers receive technical training, have the ability to
travel with their own gear and equipment, and are a cost-effective
solution to meeting important recovery needs.
AmeriCorps National Civilian Community Corps (NCCC)
AmeriCorps National Civilian Community Corps (NCCC) is a member of
The Corps Network. AmeriCorps NCCC is a full-time, residential, team-
based program for young adults ages 18-24. Members develop leadership
skills, gain life experience, and strengthen communities by completing
service projects. Many NCCC members will start off in NCCC and
transition to a Corps, or vice-versa. NCCC crews are also critical to
disaster response and recovery, and help support other Corps projects.
Corps coordinate with regional NCCC offices on work plans.
Department of Labor Programs Supporting Corps
--Job Corps (US Forest Service)--The US Forest Service operates
JCCCC's focused on conservation careers and education. They
offer a proven pathway for disconnected youth to gain education
and conservation job skills and to get back on track. Several
Centers administer Advanced Fire Management Training Programs.
While working on prescribed burns and other non-suppression
activities, these students earn Public Land Corps non-
competitive hiring eligibility and gain valuable experience in
wildland fire.
--Department of Labor Adult & Youth Training Grants (WIOA)--Congress
updated the Workforce Investment Act (WIA) to prioritize
serving disconnected youth, achieving long-term outcomes, and
enhancing work-based learning, career pathway, and service
opportunities. Corps provide these critical workforce services
in communities across the U.S.
--YouthBuild--Corps are a statutorily eligible applicant for
YouthBuild grants and manage a significant number throughout
the country. YouthBuild enrolls low-income young people who
work toward their GED/high school diploma while learning
construction skills by building housing for low-income people.
--Community Services Block Grant--Corps can be administered by
Community Action Agencies. They also often partner with States
and Community Action Agencies to carry out projects funded by
this grant.
As you can see, CNCS and DOL support many important initiatives
that engage a diverse population of youth serving in Corps including
veterans, Native youth and individuals with disabilities. Through your
support, we can provide more service opportunities for our youth and
veterans to reengage in education, hard work, and their communities and
get on a productive path for America's continued growth and prosperity.
Thank you for the opportunity to provide written testimony for the
record. We again respectfully urge your support for CNCS fiscal year
2021 and increased funding for these critical programs for thousands of
communities and every state around the country. Thank you for your time
and consideration of this testimony.
Sincerely.
[This statement was submitted by Mary Ellen Sprenkel, President &
CEO, The Corps Network.]
______
Prepared Statement of the Council of Academic Family Medicine
The member organizations of the Council of Academic Family Medicine
(CAFM) are pleased to submit testimony on behalf of programs under the
jurisdiction of the Health Resources and Services Administration (HRSA)
and the Agency for Healthcare Research and Quality (AHRQ). CAFM
collectively includes family medicine medical school and residency
faculty, community preceptors, residency program directors, medical
school department chairs, research scientists, and others involved in
family medicine education. We urge the Committee to appropriate at
least $60 million for the Primary Care Training and Enhancement
program, authorized under Title VII, Section 747 of the Public Health
Service Act HRSA. In addition, we recommend the Committee fund the AHRQ
at a level of at least $471 million and $5 million dedicated to AHRQ's
Center for Primary Care Research.
More than 44,000 primary care physicians will be needed by 2035,
and current primary care production rates will be unable to meet the
demand, according to the authors of a recent article in Annals of
Family Medicine (Petterson, et al Mar/Apr 2015). The primary care
training and enhancement programs and AHRQ research enhance our
nation's workforce and health infrastructure, improving primary care
services that produce better health outcomes and reduce healthcare
costs.
Primary Care Training and Enhancement--Title VII
The Primary Care Training and Enhancement Program (Title VII,
Section 747 of the Public Health Service Act) has a long history of
funding training of primary care physicians. As experimentation with
new or different models of care continues, departments of family
medicine and family medicine residency programs will rely further on
Title VII, Section 747, grants to help develop curricula and research
training methods for transforming practice delivery. Future training
needs include: training in new clinical environments that include
integrated care with other health professionals (e.g. behavioral
health, care coordination, nursing, oral health); development and
implementation of curricula to give trainees the skills necessary to
build and work in inter-professional teams that include diverse
professions; and development and implementation of curricula to develop
leaders and teachers in practice transformation. Moreover, new
competencies are required for our developing health system.
The Advisory Committee on Training in Primary Care Medicine and
Dentistry December 2014 report states that ``[r]esources currently
available through Title VII, Part C, sections 747 and 748 have
decreased significantly over the past 10 years, and are currently
inadequate to support the [needed] system changes.'' \1\ In order to
address some of these challenges, the Advisory Committee recommended
that Congress increase funding levels for training under the primary
care training health professions program to meet the pent-up demand
caused by reduced and stagnant funding levels. We are pleased that
Congress increased spending for primary care training and enhancement
in fiscal year 2018 and continued such funding. We are hopeful that the
Committee will realize the need for continued and increased funding to
allow for a more extensive support across the nation for schools and
residency programs whose trainees are on the forefront of addressing
challenges in primary care.
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\1\ http://www.hrsa.gov/advisorycommittees/bhpradvisory/actpcmd/
Reports/eleventhreport.pdf.
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Primary care health professions training grants under Title VII are
vital to the continued development of a workforce designed to care for
the most vulnerable populations and meet the needs of the 21st century.
We urge your continued down payment for this program and an increase in
funding levels to $60 million in fiscal year 2021 to allow for a robust
competitive funding cycle.
This funding level will help continue important Title VII programs
such as The Preparing Primary Care Trainees to Transform Health Care
Systems program at the Kirksville College of Osteopathic Medicine in
Missouri. This program uses grant funding to create enhanced primary
care didactics, contextual clinical learning activities and assessments
and leadership tracks to prepare students and facility for practice in
changing and diverse health systems.
Agency for Health Care Research and Quality (AHRQ)
Primary care clinical research is a core function of AHRQ. Primary
care research includes: translating science into patient care, better
organizing healthcare to meet patient and population needs, evaluating
innovations to provide the best healthcare to patients, and engaging
patients, communities, and practices to improve health. AHRQ has proved
to be uniquely positioned to support best practice primary care
research and to help disseminate the research nationwide. However,
reduced levels of AHRQ funding in the past have exacerbated disparities
in funding primary care research.
AHRQ is in a unique position to further primary care clinical
research as well as the implementation science to identify how to
deploy new knowledge into the hands of primary care providers and
systems in communities. However, more funding is needed to accomplish
these goals. For this reason, we are supporting additional overall
funding increases for fiscal year 2021 to the level of $471 million as
well as specific funding for the Center for Primary Care Research of $5
million to help coordinate and direct primary care research funding at
AHRQ. We hope additional funding will continue and expand the following
goals: (1) development of clinical primary care research and
researchers (2) real world application of evidence, (3) the process of
practice and health system transformation, (4) how high functioning
primary care systems and practices should look, (5) how primary care
practices serving rural and other underserved populations adapt and
survive, and (6) how health extension systems serve as connectors of
research institutions with practices and communities.
AHRQ research is used by practices and universities across the
nation. This funding level will help continue important programs such
as the one at University of Washington. The University of Washington
used funding from AHRQ to develop a system to incorporate Patient-
Reported Outcomes (PRO) into clinical assessments and decisionmaking
leading to improved patient-provider communication, patient
satisfaction, and treatment monitoring. The project employs systems
engineering methods, human-centered design, and mixed-research methods
to develop more effective integration of PRO data into patient care
activities through health information technology.
Highlighting the success of AHRQ's patient safety initiatives, a
2014 \2\ report showed hospital care to be much safer in 2013 compared
to 2010. The report noted a decline of 17 percent in hospital-acquired
conditions, in harm to 1.3 million individuals, as well as 50,000 lives
saved, and $12 billion in reduced health spending during that period.
AHRQ supports this research that is essential to create a robust system
for our nation that delivers quality of care while reducing the rising
cost of care.
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\2\ Publication # 15-0011-EF.
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In AHRQ's recent report, ``Potentially Preventable Readmissions:
Conceptual Framework to Rethink the Role of Primary Care,'' AHRQ
rethinks primary care as an ``integrator'' able to work alongside sub-
specialty physicians and hospitals to provide more comprehensive care.
Most hospital readmissions occur within the 14-day window that a
patient is supposed to follow up with their primary care doctor. By
involving the primary care team during hospitalization and in the
subsequent 14-day window, hospital readmissions can be significantly
reduced. However, to accomplish this goal, AHRQ needs increased
funding.
CAFM is grateful Congress included report language in fiscal year
2020 stating that Congress ``supports primary care clinical research
and dissemination as a core function of AHRQ.'' As we look to the
future, this core function can only be expanded by increasing the
funding of the agency as a whole, and supporting specific funding for
the Center for Primary Care Research at AHRQ to provide a true
coordinating center for primary care research at AHRQ.
Enhanced Funding for COVID-19 Recovery
COVID-19 has created both short and longer-term primary care needs.
The following items merit funding to help our research and training
infrastructures adjust to COVID related primary care needs.
AHRQ Funding $130 Million
--$80 million--for telehealth questions and general broad-based study
on training needs (workforce).
--$50 million--on questions of deferred primary care, practice
changes and training and supervision, physical and emotional
burden on providers, patients, community; analyses regarding
reduction--what services found aren't really necessary, but
used for billing purposes, special needs for rural and
underserved areas.
Title VII Section 747 Funding $125 Million
--Funding for both residencies and departments--faculty retention,
public health competencies, recruit and retain students into
primary care, develop new curriculum in this regard; other
curriculum related to pandemic, and address segmented primary
care workforce in an effort to reduce delivery system division
and increase full scope primary care providers.
In conclusion, we support increased funding for AHRQ at the level
of $471million for fiscal year 2021 which would support important
primary care and health services research efforts. We also support $5
million in new funding for the Center for Primary Care Research.
CAFM looks forward to working with the Subcommittee to protect HRSA
primary care programs and AHRQ--both entities which enhance our
nation's primary care workforce and infrastructure.
[This statement was submitted by Deborah S. Clements, MD, FAAFP,
Chair, Council of Academic Family Medicine.]
______
Prepared Statement of the Council of State and
Territorial Epidemiologists
Chairman Blunt, Ranking Member Murray, and members of the
subcommittee, I am Janet Hamilton, Executive Director at the Council of
State and Territorial Epidemiologists (CSTE). CSTE is organization of
56 member states and territories representing applied public health
epidemiology and serves as the professional home for over 2,000 applied
public health epidemiologists nationwide. As the subcommittee works on
the fiscal year 2021 Labor, Health and Human Services, Education, and
Related Agencies appropriations bill, we respectfully request that you
appropriate at least $100 million to the Centers for Disease Control
and Prevention's (CDC) Public Health Scientific Services for the Data
Modernization Initiative that will transform public health and save
lives.
As part of a multi-billion dollar investment over the next decade,
sustained annual funding of at least $100 million will allow CDC and
public health departments to move from sluggish, manual, paper-based
data collection to seamless, automated, interoperable, and secure data
systems that yield critical health information in real-time. This
funding would also modernize the public health workforce by training,
recruiting, and retaining skilled data scientists. Data systems require
adept staff to use them, maintain them, interpret the data, and develop
and deploy actionable public health interventions to save lives.
The COVID-19 pandemic has acutely highlighted that public health
threats are persistent and consistently evolving here at home and
overseas. Effective prevention and efficient, timely, responses rely on
the integrated network of governmental public health agencies at the
Federal, state, local, tribal, and territorial levels working with
healthcare providers and the public. Each day, this network saves lives
by monitoring the health of the population and detecting,
investigating, and responding to health threats.
Unfortunately, the nation's public health data systems are
antiquated, rely on obsolete information sharing methods and are in
dire need of security upgrades. Lack of interoperability, reporting
consistency, and data standards leads to errors in quality,
completeness, timeliness, and communication. Sluggish, manual
processes--paper records, phone calls, spreadsheets, and faxes
requiring manual data entry--still in widespread use have important
consequences, most notably delayed detection and response to public
health treats of all types: chronic, emerging, and urgent.
COVID-19 has highlighted significant gaps in today's public health
infrastructure:
--Lack of seamless, interoperable data sharing across public health
partners
--Data on COVID-19 cases are managed electronically at the state/
local public health department, but cannot be seamlessly
shared with CDC. Data are often re-keyed to report critical
details from states to the CDC; manual efforts are time
consuming; data may not be submitted for days despite it
being stored in an electronic system.
--Data collection and transmission for persons under investigation
is manual: pen and paper, Excel spreadsheets, phone calls
to healthcare providers and laboratories and from state/
local public health to CDC.
--No process to order COVID-19 laboratory tests electronically
--The process for submitting specimens for testing is entirely
paper-based requiring multiple phone calls to assign person
under investigation numbers, and complete paperwork for
laboratory submission;
--All test results are returned via manual processes--phone calls
and faxes-and must be manually entered by staff.
--No electronic case reporting to share data between healthcare and
public health
--Healthcare providers already have basic clinical data of COVID-19
patients (symptoms, pregnancy status, hospitalization, ICU
status) stored and collected in electronic health records
but are submitting paper forms and are unable to rapidly
share these data or submit electronic case reports to
public health; data must be hand entered into databases.
Delays occur, and providers are often too busy to manually
submit these critical data for days or at all.
--Emergency departments do not participate in public health syndromic
surveillance systems
--Approximately 30 percent of all emergency department visits are
not submitted to CDC's National Syndromic Surveillance
Program; urgent care data are almost entirely absent.
--Early detection of COVID-19 through patients presenting at
emergency departments was missed.
--Paper filing of death certificates
--Some states still file death certificates on paper requiring them
to be manually requested and processed by the health
department;
--There is no link between medical examiners/coroner's data systems
to the public health department.
These gaps lead to slow, cumbersome data exchanges resulting in
sluggish efforts to respond effectively with the speed and intensity
the COVID-19 pandemic demands.
Public health professionals, providers, policymakers, and the
public will all agree that we need a 21st Century public health
surveillance system to protect health. In fiscal year 2020, Congress
made an important initial down payment of $50 million in new funds to
launch the Data Modernization Initiative. CSTE and our partners in this
effort--APHL, NAPHSIS, and HIMSS--represent a diverse group of
patients, consumers, public health professionals, healthcare providers,
and health systems. We encourage you to continue to prioritize the Data
Modernization Initiative at CDC and public health departments. Public
health data systems have fallen behind over the past decade because
crosscutting resources have not been available, and we must not allow
this initial $50 million investment become obsolete. We must build upon
the improvements made and continue to provide adequate resources for
public health to implement advance technologies and train the next
generation of data scientists.
In your ongoing deliberations on fiscal year 2021 and beyond, CSTE
hopes you will consider the Data Modernization Initiative. Data and
workforce are the lifeblood of public health action. This effort must
continue to be funded with new money, rather than supplant with already
underfunded public health programs. A robust, sustained commitment to
transform today's public health data system will ultimately improve
Americans' health. We look forward to working with the subcommittee in
these endeavors and hope you will turn to the CSTE as a resource in the
future.
[This statement was submitted by Janet Hamilton, Executive
Director, Council of State and Territorial Epidemiologists.]
______
Prepared Statement of the Council on Social Work Education and
National Association of Social Work
Dear Chairman Blunt and Ranking Member Murray,
On behalf of the Council on Social Work Education (CSWE) and the
National Association of Social Work (NASW), thank you for your
continued support of the social work profession and social work
education. CSWE is a nonprofit national association representing over
800 accredited baccalaureate and master's degree social work programs,
as well as individual social work educators, practitioners, and
agencies dedicated to advancing quality social work education. NASW
represents the social work profession, supporting the professional
growth and development of its 120,000 members by creating and
maintaining professional standards, and advancing sound social
policies. We appreciate your efforts and leadership on issues that
impact social work, social work education, and the wellbeing of
individuals, families, and communities and social and economic justice.
We encourage you to consider the following appropriations requests
that will support social work in the fiscal year 2021 appropriations
process. Federal funding helps strengthen the pipeline of social
workers, addresses the needs of vulnerable and at-risk populations, and
supports students, including those from disadvantaged backgrounds.
Social worker practice in a diversity of fields including child
advocacy, geriatrics, school social work, healthcare and other fields.
As policymakers continue to focus on the social determinants of health,
support for social workers, who are the workforce at the center of
addressing these social factors, will be critical.
Our organizations strongly support efforts to boost critical
funding at the Department of Health and Human Services for behavioral
health initiatives, including the Community Mental Health Services
Block Grant, the National Child Traumatic Stress Network, the Centers
for Disease Control and Prevention, Substance Abuse and Mental Health
Services Administration, and Health Resources and Services
Administration programs.
Below are the funding CSWE and NASW request for critical programs
in fiscal year 2021. We respectfully ask for your support of these
requests during the fiscal year 2021 appropriations process.
health resources and services administration (hrsa)
--$790 million for the HRSA Title VII: These programs improve access
to and quality of care for vulnerable populations. Public
health threats continue to impact patients across the country,
such as substance use disorder epidemics. Titles VII programs
are essential to addressing the health challenges of today and
the future.
--$30 million for the Mental Health and Substance Use Disorder
Workforce Training Demonstration Program: CSWE and NASW support
funding for interprofessional training, including social
workers, Nurse Practitioners, Physician Assistants, and health
service psychologists. It is vital that the Demonstration
supports the training of all eligible providers, including
social workers, to ensure that mental and substance use
disorder services in underserved community-based settings
integrate primary care and mental and substance use disorders
services.
substance abuse and mental health services administration
--$757.5 million for Community Mental Health Services Block Grant
--$2.3 billion for Substance Abuse Prevention and Treatment Block
Grant
--$38.5 billion in emergency funding to organizations that primarily
treat individuals with behavior health concerns and/or
Substance Use Disorders and use evidence-based practices, with
a significant portion of these emergency funds set aside for
organizations enrolled in Medicaid as a result of the COVID-19
epidemic.
department of education
--$7,000 in fiscal year 2021 for the maximum individual Pell Grant.
The Pell Grant Program is the foundation of financial aid for
low-income students. Unfortunately, the purchasing power of the
Pell Grant has continuously declined since the program's
inception in the 1970s, shouldering students with a growing
share of the cost of college.
--Support for Public Service Loan Forgiveness (PSLF) Programs.
national institutes of health (nih)
--$44.7 billion for the National Institutes of Health.
Sincerely.
[This statement was submitted by Darla Spence Coffey, PhD, MSW,
President and Chief Executive Officer, Council on Social Work Education
and Angelo McClain, PhD, LICSW, Chief Executive Officer, National
Association of Social Workers.]
______
Prepared Statement of the Council on Social Work Education
Dear Chairman Blunt and Ranking Member Murray,
On behalf of the Council on Social Work Education (CSWE), thank you
for your continued support for social work and social work education.
CSWE is a nonprofit national association representing over 800
accredited baccalaureate and master's degree social work programs, as
well as individual social work educators, practitioners, and agencies
dedicated to advancing quality social work education. We appreciate
your efforts and leadership on issues that impact social work, social
work education, and the wellbeing of individuals, families, and
communities and social and economic justice.
We encourage you to consider the following appropriations requests
that will support social work programs and social work students in the
fiscal year 2021 appropriations process. Pressing societal challenges
like the opioid crisis and other substance-use issues, growing mental
and behavioral health needs, workforce shortages, and rising higher
education costs, are just some of the challenges facing social work
students and practitioners. Your support of these appropriations
requests will help meet these challenges.
Federal funding helps strengthen the pipeline of social workers,
addresses the needs of vulnerable and at-risk populations, and supports
students, including those from disadvantaged backgrounds. Social work
students go on to work in a diversity of fields including child
advocacy, geriatrics, school social work, healthcare and other fields.
As policymakers continue to focus on the social determinants of health,
support for social workers, who are the workforce at the center of
addressing these social factors, will be critical. CSWE's fiscal year
2021 requests (as detailed below) illustrate support for important
programs that address vital health workforce needs, provide invaluable
student aid, address the social determinants of health, and promote
important health-care research.
Below is the funding CSWE supports for critical programs in fiscal
year 2021. We respectfully ask for your support of these requests
during the fiscal year 2021 appropriations process.
health resources and services administration
--$116.280 million for HRSA's Behavioral Health Workforce Education
and Training (BHWET) program. CSWE was pleased to see
continuous investments for the BHWET program in the fiscal year
2020 Labor-HHS-ED appropriations bill. BHWET supports the
recruitment and education of behavioral health-care providers,
which is critical as the nation continues to combat the opioid
crisis and substance use disorders. The number of training
programs supported by BHWET has grown tremendously over the
past several years, particularly amongst social workers.
According to a June 2018 HRSA study, out of the 4,618
behavioral health professionals participating in the BHWET
program, 3,523 included new social workers.\1\ In 2018, a new
four-year competition awarded social work programs over $17
million a year to help develop and expand the behavioral health
workforce serving populations across the lifespan, including in
rural and medically underserved areas. As the nation's demand
for well-equipped behavioral health-care providers continues to
grow, we hope you will support $116,280,000 million for BHWET
in fiscal year 2021.
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\1\ Closing Behavioral Health Workforce Gaps: A HRSA Program
Expanding Direct Mental Health Service Access in Underserved Areas;
American Journal of Preventive Medicine.
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--$58.675 million for Scholarships for Disadvantaged Students. This
program helps ensure that the United States has the pipeline of
health professionals to meet health needs of underserved
individuals and communities. Furthermore, this program provides
much needed opportunities for students from disadvantaged
backgrounds.
--$51 million for the Geriatrics Workforce Enhancement Program
(GWEP). GWEP supports training and educating health
professionals, including social workers, as well as direct care
workers, and family caregivers in the care of older adults. It
is the only Federal program that focuses on developing a
health-care workforce that maximizes patient and family
engagement while improving health outcomes for older adults.
GWEPs are successfully integrating and equipping a primary care
workforce and family caregivers with the knowledge and skills
to care for older adults and build community networks to
address gaps in healthcare for seniors.
--$10 million for continued support of a demonstration program to
strengthen the mental and substance disorders workforce.
--$25 million for continued support of the Loan Repayment Program for
Substance Use Disorder Treatment Workforce.
substance abuse and mental health services administration
--$15.70 million for the Minority Fellowship Program (MFP). For more
than 45 years, MFP has been increasing the number of
professionals preparing for leadership roles in mental health
and substance use fields and working to reduce health
disparities and improve behavioral health-care outcomes for
racial and ethnic populations. CSWE appreciates increased
investments in the MFP in fiscal year 2020, particularly
focused on addiction medicine to address the opioid crisis.
CSWE urges the committee to include $15.70 million for the MFP
in fiscal year 2021.
department of education
--$7,000 in fiscal year 2021 for the maximum individual Pell Grant.
Pell Grants are critical to ensuring access and affordability
in higher education. CSWE also supports increasing the amount
of Pell funding that is supported by mandatory spending.
Student aid programs, particularly grant programs, represent
important investments and help students avoid crushing debt
burdens when they graduate.
--Support for Public Service Loan Forgiveness (PSLF) Programs. PSLF
is an integral program to ensuring a pipeline of professionals
in public service serving in high-needs areas. CSWE encourages
Congress to continue support for this vital program and
programs like the Temporary Expanded Public Service Loan
Forgiveness (TEPSLF), which assists public service workers who
were enrolled in ineligible loan repayment programs. In
addition to continuing support for PSLF, CSWE asks Congress to
continue oversight of how the Department of Education is
implementing the program.
--$35 million in fiscal year 2021 for The Graduate Assistance in
Areas of National Need (GAANN) program. The Graduate Assistance
in Areas of National Need (GAANN) program provides fellowships
through institutions of higher education to assist graduate
students with financial need pursue a degree in a field
designated as an area of national need as determined by the
Secretary. Since 2012, an academic area related to health
professions has been designated once. It is estimated that more
than 18 percent of the U.S. adult population has suffered from
any mental illness. Mental health is clearly an area of
national need.
national institutes of health
--$44.7 billion for the National Institutes of Health (NIH). CSWE
appreciate the continued support from Congress and the
increased funding for NIH. To build on the advances in
research, CSWE hopes you will support continued investments in
biomedical and health-related research that incorporates the
social and behavioral science research necessary to better
understand and address the needs of high-risk populations
including children, minority, and geriatric populations.
Sincerely.
[This statement was submitted by Darla Spence Coffey, PhD, MSW,
President and Chief Executive Officer, Council on Social Work
Education.]
______
Prepared Statement of the Creutzfeldt-Jakob Disease Foundation
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
On behalf of the Creutzfeldt-Jakob Disease (CJD) Foundation, we
appreciate the opportunity to submit this testimony in strong support
for funding of the crucial prion disease work being undertaken by the
Centers for Disease Control and Prevention in partnership with public
health agencies around the country and the National Prion Disease
Pathology Surveillance Center (NPDPSC).
The CJD Foundation is a patient advocacy organization for those
affected by Prion Diseases. We work closely with families, physicians,
researchers, and public health officials to ensure that all possible
efforts are taken to prevent acquired forms of the disease. Given the
importance of prion surveillance to public health, we are extremely
disappointed to see that the President's budget proposal would
eliminate the $6 million appropriation to the Centers for Disease
Control and Prevention (CDC) for prion disease. Indeed, the growing
threat posed by Chronic Wasting Disease (CWD), a widespread prion
disease of deer and elk, has placed additional strains on the CDC's
limited prion disease resources and warrants a budgetary increase. As
such, we are requesting that the budget for prion disease surveillance
be restored and increased to $7 million to appropriately deal with
emerging prion disease threats occurring within our borders.
overview
Creutzfeldt-Jakob Disease (CJD), is a 100 percent fatal,
degenerative brain disease that causes rapidly progressive dementia,
memory loss, visual disturbances, motor skill impairments, and
involuntary movements. Patients most often progress from initial
symptoms to death in less than a year. CJD, caused by ``prion''
proteins, is transmissible and presently has no treatment or cure.
Approximately 1 in 6,000 individuals die from this disease; however,
the number of unreported and undiagnosed cases remains unclear.
CJD/Prion Disease surveillance receives modest support through the
Centers for Disease Control and Prevention (CDC), Center for Emerging
and Zoonotic Diseases. The Administration's budget has proposed
eliminating Prion Disease Surveillance in fiscal year 2021. We need
your support to strengthen and continue the coordination of prion
disease surveillance and to protect the safety of the American public
and the nation's food supply.
variant cjd and bovine spongiform encephalopathy
One form of Prion Disease in humans, variant CJD (vCJD), is known
to be caused by ingesting beef contaminated with Bovine Spongiform
Encephalopathy (BSE), more commonly known as ``mad cow'' disease. The
most recent U.S. case of variant CJD was announced in 2013 and
confirmed by the National Prion Disease Pathology Surveillance Center
(NPDPSC) in 2014.
Limited BSE testing by the USDA adds another layer to the already
deepening concerns regarding possible risks to humans. In recent years,
the USDA has decreased random testing for BSE from 40,000 to 25,000
tests per year (12,719 tests in 6 months, or 1 test per 3,302 live
cows). Hence, surveillance of BSE in this country is largely dependent
on demonstrating the lack of transmission to humans through human
disease surveillance. The vCJD case identified by NPDPSC in 2014
exemplifies the persistent risk for vCJD acquired in unsuspected
geographic locations and highlights the need for continuing prion
surveillance and awareness to prevent further dissemination of vCJD.
chronic wasting disease
Most recently, emerging laboratory data show that a prion disease
of deer and elk called Chronic Wasting Disease (CWD) could potentially
transmit to humans and other mammals, posing a new threat to public
health. Human surveillance through brain tissue examination is the only
way to definitely diagnose human prion diseases, determine their
origin, and determine whether the spread of CWD found in elk and deer
in 26 states in the U.S. and in 3 Canadian provinces has become a human
risk. A study in progress has shown that CWD was transmitted to
macaques (primates that are genetically similar to humans) by feeding
them contaminated deer meat.
Unlike the BSE outbreak in cattle, CWD prions are highly infectious
and are transmitted via direct contact and through contamination of the
environment, including soil and plants. Additionally, multiple lines of
experimental evidence indicate that sheep and cows are susceptible to
CWD. Since CWD has been proven to cross the species barriers, this
opens up the possibility of oral transmission to humans as well, either
directly by eating contaminated venison or indirectly through infected
domestic animals.
Additional concerns include widespread and long-term prion
contamination of the environment given that prions can persist for
decades and the vector of this illness (e.g., deer) are free ranging
animals that are difficult to impossible to cull. Continued prion
disease surveillance, particularly through examination of human brain
tissue, is imperative to evaluate whether CWD has or can spread to
humans. If transmissible to humans, the possibility of transmission
between individuals via blood transfusions must also be investigated as
transmission through blood is known to occur in vCJD. Hence now is NOT
the time to remove funding for prion disease surveillance, rather it
should be increased to appropriately deal with these emerging threats.
The NPDPSC, funded by the CDC and located at Case Western Reserve
University in Cleveland, Ohio, is our line of defense against the
possibility of an undetected U.S. human prion disease epidemic as
experienced in the United Kingdom.
We ask for Congressional support in increasing the National Prion
Disease Pathology Surveillance Center's (NPDPSC) appropriation for
fiscal year 2021 by $1 million, for a total of $7 million. This would
allow the NPDPSC to meet increasing autopsy costs and continue to
develop more efficient detection methods while providing an acceptable
level of human prion disease surveillance. Reduction of funding to the
NPDPSC would eliminate an important safety net to U.S. public health,
making the U.S. the only industrialized country lacking prion disease
surveillance, which in turn would jeopardize the export of U.S. beef.
The increase in funding would allow the NPDPSC to expand its scope to
address the growth in Chronic Wasting Disease (CWD) among deer and elk
and explore whether CWD could spread to humans.
national prion disease pathology surveillance center
The NPDPSC is funded entirely by the CDC from funds allocated by
Congress. The CDC traditionally keeps approximately half of the
appropriation for CDC and state public health activities, and half goes
to the NPDPSC; however, this is changing as more states require CDC
support due to the increasing incidence of CWD in new locations.
Increasing the 2020 appropriation from $6.0M to $7.0M will allow
the NPDPSC to persist and continue to develop more efficient detection
methods while providing an acceptable level of prion surveillance.
Acceptable national prion surveillance would not be possible at a lower
level of funding. The requested $1.0M addition to the appropriation
(total of $7.0M) would enable the NPDPSC to increase surveillance,
tissue collection, diagnostics and diagnostic test development of prion
disease cases from CWD endemic states to determine whether CWD is
transmissible to humans and if so, to what extent this poses a threat
to public health (e.g., transmission risks from human to human).
The National Prion Disease Pathology Surveillance Center is the
only organization in the U.S. that monitors human prion diseases and is
able to determine whether a patient acquired the disease through the
consumption of prion contaminated beef (``mad cow'' disease) or meat
from elk and deer affected by chronic wasting disease (CWD).
The NPDPSC also monitors all cases in which a prion disease might
have been acquired by infected blood transfusion, from the use of
contaminated surgical instruments or from contaminated human growth
hormone. Because standard hospital sterilization procedures do not
completely inactivate prions that transmit the disease, these incidents
put a number of patients under unnecessary risk and required costly
replacement of contaminated surgical equipment.
The NPDPSC also plays a decisive role in resolving suspected cases
or clusters of cases of food-acquired prion disease that are often
magnified by the media, stirring intense public alarm. To date, the
NPDPSC has examined over 7,208 suspected cases of prion disease and has
definitely confirmed the presence and type of prion disease in more
than 4,399 cases.
The NPDPSC represents the primary line of defense in safeguarding
U.S. public health against prion diseases because the U.S.--unlike
other BSE affected countries such as the United Kingdom, the European
Union, and Japan--does not have a sufficiently robust animal prion
surveillance system.
The NPDPSC's work offers assurances, to countries that import (or
are considering importing) meat from the U.S., that the U.S is free of
indigenous human cases of ``mad cow'' disease. In recent years, South
Korean and Chinese health officials resumed importation of U.S. beef to
their country after a visit to the NPDPSC provided assurances regarding
rigorous human prion surveillance.
Thank you for the opportunity to submit this testimony.
[This statement was submitted by Deborah R. Yobs, President/
Executive Director, CJD Foundation.]
______
Prepared Statement of the Cure Alzheimer's Fund
Chairman Blunt, Ranking Member Murray, and members of the Senate
Labor, Health & Human Services, Education, and Related Agencies
Appropriations Subcommittee, I am Tim Armour, President and CEO of Cure
Alzheimer's Fund. I want to thank Congress for past funding for
Alzheimer's disease research at the National Institutes of Health
(NIH), and to submit this written testimony to respectfully request at
least an additional $354 million in fiscal year 2021 above the final
enacted amount for fiscal year 2020 for Alzheimer's disease research at
the NIH.
Additionally, Cure Alzheimer's Fund respectfully requests at least
$500 million in total appropriations for the Brain Research through
Advancing Innovative Neurotechnologies (BRAIN) Initiative. The BRAIN
Initiative is poised to play an important imaging role in the early
detection and diagnosis of Alzheimer's disease.
Cure Alzheimer's Fund is a national nonprofit, based in
Massachusetts, that funds research with the highest probability of
preventing, slowing or reversing Alzheimer's disease. Since its
founding 15 years ago, Cure Alzheimer's Fund has invested more than
$107 million in research through more than 460 grants. Cure Alzheimer's
Fund has supported research ideas that have become more widely accepted
such as the role of the innate immune system, a better understanding of
protein expression and subtle changes in the brain at various stages of
the disease, and the better understanding of a lymphatic/drainage
system in the brain.
A sustained Federal investment, as the one established by this
Subcommittee in recent years, allows Cure Alzheimer's Fund to support
initial research that can then be supported by larger grants from the
NIH. Continued investment in NIH presents opportunities for new ideas
and researchers to be able to secure funding necessary for continued
progress in unlocking the secrets of Alzheimer's disease. As we learn
more about the disease, new researchers, both young investigators and
established researchers from other disciplines, are entering the field.
Continued, robust investment in Alzheimer's disease research will allow
these additional researchers to be able to pursue important new
understandings of the pathology and development of Alzheimer's disease.
This Subcommittee has demonstrated its commitment to Alzheimer's
disease research at NIH through recent sustained increases in the NIH
budget. And for this commitment, Cure Alzheimer's Fund expresses its
thanks and appreciation.
The sustained support from this Subcommittee allows for
organizations such as Cure Alzheimer's Fund to focus on early-stage
research knowing that researchers will be able to seek NIH funding at a
scale larger than Cure Alzheimer's Fund offers for individual projects.
The ``hand-off'' from Cure Alzheimer's Fund to NIH is an important part
of the process to getting therapeutic interventions tested, validated,
and ultimately into the clinic to change the course of the disease for
the millions of Americans and individuals around the world who are
afflicted.
As Dr. Francis Collins, Director of the NIH, mentioned at the House
LHHSE Subcommittee NIH hearing on March 4, 2020, one of the most
promising areas of Alzheimer's disease research is the role of the
innate immune system in the development of Alzheimer's disease. Cure
Alzheimer's Fund is at the forefront of this research.
As far back as 2010, Cure Alzheimer's Fund has supported research
into the beta-amyloid protein and its role in fighting infection. At
that time, I stated that this type of creative research does not often
receive Federal funding. However, NIH sees the importance of this
research and has convened meetings (September 23-24, 2019) around the
topic of infection and viruses in the development of Alzheimer's
disease. This would not have happened without early investment in
research and the availability of larger-scale research funding made
possible by this Subcommittee.
https://curealz.org/news-and-events/abeta-may-have-beneficial-
function-as-part-of-the-innate-immune-system/.
https://www.nia.nih.gov/about/naca/january-2020-directors-status-
report.
Research has shown that the pathology of Alzheimer's disease begins
long before symptoms appear. Because of this, it is very important to
be able to determine what happens at each stage in Alzheimer's disease
development. Research into protein expression and epigenetics is
providing insight into the subtle changes in the brain that could be
early markers for the development of Alzheimer's disease. The Cure
Alzheimer's Fund CIRCUITS program is a multi-laboratory consortium that
brings together researchers and institutions from various fields for a
better understanding of the development of Alzheimer's disease and the
changes it causes in the brain.
https://curealz.org/news-and-events/circuits-a-consortium-approach-
to-understanding-the-epigenetics-of-alzheimers/.
Researchers and scientists are still learning new things about the
brain. In the past, I have highlighted the work of Jonathan Kipnis and
the role of the brain lymphatic system, but knowing it is an important
area of concern for the Subcommittee, I want to mention it again.
Dr. Kipnis' work showed that the brain lymphatic system acts as a
type of drain in the brain to be able to remove debris. Continued
research in this area shows that this brain lymphatic system may also
be a way to have therapies enter the brain and pass through the blood-
brain barrier. We are also learning that this brain lymphatic system
works better when people are asleep, which has implications for the
research being done on circadian rhythms and their impact on a number
of health conditions.
https://curealz.org/news-and-events/a-new-discovery-the-brain-has-
a-drain-to-remove-debris/.
https://curealz.org/research/foundational-genetics/berg-brain-
entry-and-exit-consortium-human-3d-neurovascular-interaction-and-
meningeal-lymphatics-models-with-application-to-alzheimers-disease/.
The understanding that Alzheimer's disease pathology begins long
before symptoms appear, discoveries of brain systems, and a better
understanding of subtle changes in the brain at the onset of
Alzheimer's disease pathology benefit not only investment at NIH, but
also investment in the BRAIN Initiative.
As we learn more about the brain, we will learn more about
neurodegenerative conditions including Alzheimer's disease. Better
imaging tools will allow for researchers to be able to detect changes
in the brain. An improved ``brain map'' will allow researchers to be
better able to see changes in the brain and be able to compare brains,
since every human brain is different. Additionally, better assessment
tools such as non-radiological tracers and improved cognitive
assessments will improve early detection and diagnosis of Alzheimer's
disease.
https://curealz.org/research/immune-system-structures/neuroimmune-
molecular-imaging-redefining-the-landscape-of-opportunities-in-
alzheimers-disease-2/.
https://directorsblog.nih.gov/2019/10/08/multiplex-rainbow-
technology-offers-new-view-of-the-brain/.
Progress is being made in the fight against Alzheimer's disease,
and this progress is the direct result of partnerships between private
organizations and NIH. There are many exciting and important
discoveries happening right now in Alzheimer's disease research.
Discoveries that will need access to sustained Federal investment to be
able to move from the laboratory to the marketplace. Now is not the
time turn away from the important commitment this Subcommittee has
demonstrated.
Thank you for your continued support of Alzheimer's disease
research, and for the opportunity to submit this written testimony and
to respectfully request at least an additional $354 million above the
final enacted level in fiscal year 2020 for fiscal year 2021 for
Alzheimer's disease research at NIH, and at least $500 million in total
appropriations for the BRAIN Initiative. Cure Alzheimer's Fund has
worked closely with the Subcommittee in the past and looks forward to
being your partner as we work toward Alzheimer's disease research
having the necessary resources to end this awful disease.
[This statement was submitted by Timothy Armour, President and CEO,
Cure Alzheimer's Fund.]
______
Prepared Statement of the Deadliest Cancers Coalition
The Deadliest Cancers Coalition is a collaboration of national
nonprofit organizations focused on addressing issues related to our
nation's most lethal cancers. We appreciate the opportunity to submit
this statement in support of strengthening the Federal investment in
deadliest cancers research conducted and supported by the National
Institutes of Health (NIH) and the National Cancer Institute (NCI).
Deadliest cancers are defined by the Recalcitrant Cancer Research
Act (aka RCRA and Public Law 112-239) as those with a five-year
relative survival rate below 50 percent. While any cancer with a
survival rate below 50 percent is considered part of this group, it is
notable that the definition currently includes seven site-specific
cancers: brain, esophageal, liver, lung, ovarian, pancreatic, and
stomach as well as mesothelioma.
We deeply appreciate Congress' continued strong leadership in
support of cancer research through the steady increases you have
provided to the NIH and NCI over the last 5 years. We are also grateful
for the new dedicated fiscal year 2020 funding Congress provided to
address a significant decline in the success rate for research project
grant (RPG) applications at NCI. For fiscal year 2021, the Deadliest
Cancers Coalition respectfully requests at least $44.7 billion for NIH,
a $3 billion increase over the fiscal year 2020 level. For NCI, we
request $6.9 billion, which is the amount proposed by NCI in its fiscal
year 2021 professional judgment budget and would provide an increase
for the NCI which is proportional to our overall request for NIH.
A recent report showed that the $30.82 billion that NIH awarded for
research grants in fiscal year 2019 supported 475,905 jobs and $81.22
billion in national economic activity. Medical research funding is
going to continue to be essential, not just to the patients who are
counting on the treatments and early detection tools that will be
developed as a result, but also as part of a plan to reboot the economy
after the pandemic.
At the start of this year, the media highlighted reports that the
U.S. cancer death rate declined by 29 percent from 1991 to 2017,
including a 2.2 percent drop from 2016 to 2017, the largest single-year
drop in cancer mortality ever reported. While this achievement is
worthy of celebration, and is directly attributable to NIH and NCI
supported research, it masks the fact that we still have few if any
screening or early detection tools or treatments for those who have
been diagnosed with one of the deadliest cancers.
In fact, the deadliest cancers offer a powerful example of the need
for continuing the path of sustained and robust increases for the NIH
and NCI. While the overall five-year relative survival rate for all
cancers combined has risen from 50 percent when the War on Cancer was
first declared in 1971 to 67 percent today, we have seen relatively
little success in improving survival for the deadliest cancers.
Multiple myeloma is one of the few ``success'' stories among this group
as the five-year survival rate was 34 percent when the coalition was
founded in 2008 and is now 54 percent. As the table below demonstrates,
the prognosis for those with one of the deadliest cancers is far below
the current average.
FIVE YEAR SURVIVAL RATES FOR THE DEADLIEST CANCERS COMPARED PTO THE
OVERALL CANCER SURVIVAL RATE
(2008-2020)
------------------------------------------------------------------------
Est. 2020 5-Year Est. 2008 5-Year
Survival Rates Survival Rate
------------------------------------------------------------------------
Brain............................... 34% 35%
Esophageal.......................... 20% 16%
Liver............................... 18% 11%
Lung................................ 19% 15%
Myeloma *........................... 54% 34%
Ovarian............................. 48% 45%
Pancreas............................ 10% 5%
Stomach............................. 32% 24%
ALL CANCERS......................... 67% 66%
------------------------------------------------------------------------
* Myeloma ``graduated'' out of the deadliest cancers in 2016 when its
survival rate reached 50 percent.
Congress passed the RCRA to encourage the NCI to identify specific
areas of research that could speed progress in the deadliest cancers as
well as opportunities for the public and private sectors to work
together to achieve these goals. Specifically, it required that the NCI
develop a long-term strategic plan for addressing recalcitrant cancers
beginning with pancreatic adenocarcinoma and small-cell lung cancer.
The statute requires that the NCI provide regular updates on the
implementation of these ``scientific frameworks'' through the annual
Congressional Justifications and requires a report to Congress due
later this year that evaluates the effectiveness of the frameworks that
were created.
The NCI has made progress in implementing the statute, particularly
with respect to pancreatic adenocarcinoma and small-cell lung cancer,
and has also begun a scientific-framework-like process for
glioblastomas. In late 2018, NCI signaled its intention to also begin
discussions on other cancers, however, it is unclear whether those
discussions are leading to the NCI-led meetings with the broader
scientific community necessary for progress. There is still much that
needs to be done for all of these cancers. It is therefore vital that
Congress continue to shine a light on all recalcitrant cancers so that
they do not slip back into the shadows.
The Deadliest Cancers Coalition deeply appreciates the inclusion of
report language focusing on these cancers in years past, including the
fiscal year 2020 language that directed NCI to develop a scientific
framework using the process outlined in the RCRA for stomach and
esophageal cancers. The fiscal year 2020 language also urged the
Institute to continue to support research with an emphasis on
developing screening and early detection tools and more effective
treatments for all recalcitrant cancers. The NCI's response in the
fiscal year 2021 Significant Items shows that while they are certainly
supporting a range of research projects that support advancements in
some of the deadliest cancers, there is no information on how they are
addressing Congress' instructions to begin a scientific framework
process for stomach and esophageal cancers.
We are therefore requesting that the Subcommittee include language
in the fiscal year 2021 LHHS Appropriations bill that holds NCI
accountable to the fiscal year 2020 language and to the goals and
ideals of the RCRA. Specifically, in addition to ensuring that NCI
moves forward with plans for stomach and esophageal cancers, it is
critical that NCI also specifies how it will continue the goals of the
RCRA to develop and implement strategic plans for the full range of
recalcitrant cancers.
The 2012 legislation was first introduced by Senator Whitehouse and
Representatives Anna Eshoo and Leonard Lance because it was clear that
just following ``standard procedure'' with respect to the recalcitrant
cancers was not working and that there needed to be a specific focus on
determining research priorities for these diseases. That need has not
diminished. The Deadliest Cancers Coalition has submitted report
language to Subcommittee that we believe will meet these goals and
assist our members in their conversations and collaboration with NCI on
working together to improve survival.
The Deadliest Cancers Coalition was founded because we believe that
every patient diagnosed with cancer should have at least a 50 percent
chance at survival. Unfortunately, in 2020, nearly half of all cancer-
related deaths will be due to one of the deadliest cancers--a statistic
that is largely unchanged since we were founded. We clearly still have
a long road ahead of us to see more cancers ``graduate'' out of being
considered a recalcitrant cancer. We therefore urge the Subcommittee to
continue its leadership to ensure that NIH receives $44.7 billion for
fiscal year 2021 and $6.9 billion for the NCI and that you continue to
hold the Institute accountable to making progress on the deadliest
cancers through report language in the fiscal year 2021 bill.
[This statement was submitted by Megan Gordon Don, Executive
Director,
Deadliest Cancers Coalition.]
______
Prepared Statement of the Disability Advocacy Alliance
Disability Advocacy Alliance (DAA) is a 501(c)(3) organization that
works to protect the rights of individuals with intellectual and
developmental disabilities (I/DD) in Ohio. We support a full continuum
of residential and employment options, including Intermediate Care
Facilities for Individuals with Intellectual Disability (ICFs) and Home
and Community Based Services (HCBS). We disagree with the notion that
community is defined by the arbitrary label of a Medicaid funding
source. Rather, DAA families know that community is defined by the
loving homes and relationships our family members build with their
family, friends, and caregivers. DAA writes in support of legislative
and report language submitted by VOR that:
--Prohibits the use of appropriations for a Protection & Advocacy
(P&A) System to bring a lawsuit against an ICF/IID, unless the
affected individuals and their legal guardians have been
provided reasonable notice of the lawsuit.
--Prohibit states from using MFP funds or its resulting Federal
Assistance Matching Percentage (FMAP) to override beneficiary
choice and be used by a state to finance and abet the closure
of an ICF/IID and the transfer of its residents, or to
financially incentivize private providers to close or reduce
the number of beds in their ICF/IID facilities.
federal law supports residential choice for i/dd beneficiaries
The foundational U.S. Supreme Court Olmstead decision makes
individual need and choice paramount:
``But we recognize, as well, the States' need to maintain a range
of facilities for the care and treatment of persons with
diverse mental disabilities, and the States' obligation to
administer services with an even hand.'' (Olmstead v. L.C. 527
U.S. 581, 597)
``We emphasize that nothing in the ADA or its implementing
regulations condones termination of institutional settings for
persons unable to handle and benefit from community
settings...nor is there any Federal requirement that community-
based treatment be imposed on patients who do not desire it.
(Olmstead, 601-602)
``Each disabled person is entitled to treatment in the most
integrated setting possible for that person recognizing that,
on a case-by-case basis, that setting may be in an
institution.'' (Olmstead, 605)
Medicaid law gives beneficiaries the right to choose between an
institutional or community setting. 42 C.F.R. Sec. 441.302(d)(2); see
also, 42 U.S.C.Sec. 1396n(c)(2)(C)
The Developmental Disabilities Assistance and Bill of Rights Act of
2000 (DD Act) recognizes that individuals with I/DD and their families
are the primary decisionmakers regarding services.
``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. Sec. 15001(c)(3)(2000).
protection & advocacy systems
The DD Act requires that states receiving Federal financial
assistance under the Act have in place a Protection & Advocacy (P&A)
System to protect and advocate the rights of individuals with (I/DD).
42 USC Sec. 10543. P&As are funded by the U.S. Department of HHS
through its agency, the Administration on Community Living (ACL). P&As
protect the rights of individuals who access community services, but
they attack the rights of individuals with severe I/DD who need and
choose intensive care in intermediate care facilities for individuals
with intellectual disability (ICFs/IID). P&As advocate for ICF/IID
closures regardless of the interests of the Medicaid beneficiaries they
are charged to protect. A favorite tool of P&As is the class action
lawsuit. States are often wary of becoming involved in costly
litigation, and so many will settle a class action before providing a
proper defense. Often, simply the threat of litigation is enough to
cause states to implement policies to limit ICFs/IID and restrict
access to them.
Ohio families have spent 4 years fighting a P&A class action, Ball
v. Kasich (2:16-cv-282) (2016) that was brought by Disability Rights
Ohio (DRO) against Ohio's ICF/IID program. DRO threatened litigation in
Fall 2014. Just the threat of litigation caused the State to close two
state ICFs/IID and institute policies to force downsizings and closures
of private ICFs/IID. Families objected strongly, filing over 21,000
hardcopy petition signatures with the state legislature. Despite this
express support for the ICF/IID program, the P&A still filed suit
against the State even though its goals and priorities are to take into
consideration the comments of its constituents. 42 USC
Sec. 15043(a)(2)(D)(i) & (ii). Widespread ICF/IID closures were only
prevented by the intervention of a group of ICF/IID families into the
lawsuit. The judge recognized the importance of families' efforts when
he allowed their intervention. In his Order of July 25, 2017, the judge
stated that the rights of individuals who want to remain in their ICF/
IID homes or who may need an ICF/IID in the future were not protected
until the families filed their Motion to Intervene.
A P&A action in Illinois, Ligas v. Maram (1:05-cv-04331) (2005),
was opposed just as vociferously by ICF/IID families when an
overwhelming number of families objected to the class settlement,
causing the judge to overturn the settlement, order the intervention of
ICF/IID families, and allow families to be part of negotiations for a
new settlement. As with Ball in Ohio, families' intervention in Ligas
was crucial to protecting the rights of ICF/IID residents.
In a third P&A case from Utah, Christensen v. Miner (2:18-cv-00037)
(2018), the state of Utah did not even offer a defense to the class
action. The State began settling the class action almost immediately
upon its filing. By the time ICF/IID families were aware of the lawsuit
and understood its affects, it was too late to mount a defense.
Families sent hundreds of letters to the Court objecting to the
settlement, but the settlement was approved with the requirement that
Utah's ICF/IID bed census would be reduced by 30 percent, to 465 total
beds from 650.
These examples show the importance of VOR's language request so
that families are notified of litigation from the start so that they
can act to protect the rights of their disabled loved ones.
money follows the person
MFP (Money Follows the Person) is a program of the U.S. Department
of HHS' Centers for Medicaid & Medicaid Services (CMS). It was enacted
to rebalance states' Medicaid service systems toward community
settings, but for I/DD systems, this goal was realized long ago. Today,
MFP has become a favorite tool of P&As and other anti-ICF/IID groups
like the ARC to close institutional settings. In December 2019, the CEO
of the ARC stated, ``We applaud elected officials who understand the
value of MFP, core to our mission to advance community living and close
all institutions.'' \1\ Such activity, however, goes against a
statutory goal of the MFP program, ``to enable Medicaid-eligible
individuals to receive support for appropriate and necessary long-term
services in the settings of their choice.'' \2\ (Emphasis added.) The
following examples exhibit how MFP is used to override beneficiary
choice:
---------------------------------------------------------------------------
\1\ https://thearc.org/huge-victory-for-community-living-for-
people-with-disabilities-agreement-in-congress-to-commit-to-money-
follows-the-person-program/.
\2\ Public Law 109-171 Sec. 6071(a)(2).
---------------------------------------------------------------------------
Ohio used MFP to help fund transitions of residents from two state
run ICFs/IID. The State moved to close the facilities in response to
threats of litigation from the P&A. MFP and the enhanced FMAP were also
used by the State to give financial incentives to private providers \3\
to close and reduce their ICF/IID facilities.
---------------------------------------------------------------------------
\3\ https://www.ohca.org/uploads/news/The_Future_of_the_ICF-
IID_Program_White_
Paper.pdf, page 4-5.
---------------------------------------------------------------------------
New York announced that it would undertake sweeping ICF/IID
closures of both state run and private ICFs/IID reducing system
capacity by over 6,000 ICF/IID beds. Only 150 state run ICFs beds and
456 private ICFs beds will be open after completion of the New York's
MFP plan.\4\ With such mass closings, beneficiary choice can not be
protected.
---------------------------------------------------------------------------
\4\ Links on NY Office for People with Developmental Disabilities
website no longer available, but documentation available upon request.
---------------------------------------------------------------------------
Texas used MFP funds to incentivize private ICF/IID providers to
engage in what they termed ``voluntary closures'' of their ICF/IID
facilities. The state of Texas provided this mock example in ``The
Texas Money Follows the Person Demonstration Operational Protocol,''
``Management of ABC Place invited all residents and their family
members/LARs to a meeting on November 14, 2007 to discuss the
possibility of closing ABC Place and what the impact would be
for the residents. (See footnote 5.)
``Ms. Johnson indicated at that time that she was most comfortable
with Jim residing in a large community ICF/IID and was very
angry about the closure.'' \5\
---------------------------------------------------------------------------
\5\ https://hhs.texas.gov/sites/default/files/documents/laws-
regulations/reports-presentations/2018/mfp-operational-protocol-
amendment-5.pdf, page 41 & page 42.
---------------------------------------------------------------------------
The fact that the state of Texas proposed this particular mock
example in preparing for its MFP implementation shows that Texas likely
anticipated angry reactions of ICF guardians to the news of facility
closures.
Wisconsin used MFP to implement its ``ICF restructuring
Initiative.'' 28 ICFs were closed with 936 individuals losing their ICF
homes. Only 135 ICF/IID residents remained.\6\ Again, with such mass
closings, beneficiary choice cannot be respected.
---------------------------------------------------------------------------
\6\ https://www.dhs.wisconsin.gov/publications/p01054-16.pdf, page
3 of attachment to cover letter.
---------------------------------------------------------------------------
VOR's language request will ensure that MFP is used as it was
intended, to aid transitions initiated at the choice of beneficiaries.
conclusion
If beneficiary choice is followed, Medicaid participants with I/DD
will lead happier and safer lives, as individuals and their families
will always be the most motivated to protect health and welfare. While
the advent of community services has helped a large portion of the I/DD
community, there will always be a portion of the I/DD community with
severe and profound needs that require intensive supports (i.e.
nursing, therapy, psychological services, medical oversight). For
individuals with complex needs, these services are most practically,
economically, and safely provided in large congregate settings like
ICFs/IID where sharing of resources across patients can take place.
Families understand all of this instinctively as they know better than
anyone what is involved in the care of their loved ones, physically,
emotionally, and socially. Expanding community services should never
come at the expense of the health and safety of America's most fragile
citizens. Ensuring that appropriations for P&A and MFP programs are
used in ways that honor statutory requirements to respect beneficiary
choice will protect lives.
______
Prepared Statement of the Disability Rights Education & Defense Fund
Dear Chairman Blunt, Ranking Member Murray and Committee Members,
The Disability Rights Education & Defense Fund (DREDF) appreciates
the opportunity to submit this testimony regarding necessary funding
for the Parent Training and Information Centers (PTIs) and Community
Parent Resource Centers (CPRCs) under the Individuals with Disabilities
Education Act. Thank you for the leadership you have provided in
beginning to address the needs of students and families during the
COVID-19 pandemic. It is more important than ever for this Committee to
continue its role of providing leadership to address the needs of
students with disabilities and their families.
As you develop the fiscal year 2021 Labor, Health and Human
Services, Education, and Related Agencies Appropriations bill, we
request that you provide $30 million to the Parent Information Centers
program at the U.S. Department of Education. This request is a slight
increase over fiscal year 2020 to support improved services to parents,
and is in line with cost of living increases.
We also urge you to provide an emergency, one-time investment of
$27.411 million for the PTI program to support children with
disabilities and their families as they navigate ensuring access to
education during this difficult time. We would further urge that this
funding be provided proportionally to each current grantee and that
funds be permitted to be expended through the end of September 2021.
Additional support is needed as the temporary closure of school
buildings, and requirements for social distancing as schools reopen can
be traumatic and disruptive to receiving crucial services for children
with disabilities and their families.
DREDF was founded in 1979 as a unique alliance of adults with
disabilities and parents of children with disabilities. DREDF advances
the civil and human rights of people with disabilities through legal
advocacy, training, education, and public policy and legislative
development. One-third of our work aims to protect and advance the
rights of students with disabilities, and promoting their integration
into mainstream society.
DREDF operates one of nearly 100 PTIs and CPRCs funded under the
PTI program nationwide. DREDF's successful PTI has served three Bay
Area counties for 32 years, supporting the role of parents in the
education of children with disabilities and working with foster
families and county agencies and local and state organizations focused
on child welfare. DREDF's Education Advocates (who are also parents of
children with disabilities) are in daily contact with California
families in the disproportionately low-income and of--color communities
in Alameda and Contra Costa counties. They work closely with DREDF's
senior and litigation staffs, providing a marginalized community with
much-needed access to skilled advocates and attorneys. PTI services are
needed now more than ever. A parent recently commented on DREDFs
services, ``I can't imagine what the quality of our lives would be like
without the knowledge I gained from participating in DREDF's workshops
for parents and the community.''
The current COVID-19 crisis as well as resulting school closures
and transition to digital or other curriculum-based learning has
presented a challenge for all students. These challenges have been
compounded for children with disabilities who may rely on hands-on
assistance from teachers or aides which can be difficult to replicate
outside of classrooms, particularly amidst social distancing and stay
at home order requirements. These disruptions to students' classroom-
based learning experiences as well as the very real stress children and
families are experiencing during the pandemic itself can be
particularly traumatic for some children. PTIs need additional
resources to help parents navigate the closure and eventual reopening
of school buildings, compensatory services to make up for lost
instructional time, and social distancing policies that will likely
impact supports and services and equal access to education for their
children.
Thank you again for the opportunity to submit comments to the
Senate Committee on Appropriations Subcommittee on Labor, Health and
Human Services, and Education and Related Agencies for this important
topic. We would be happy to address any questions or concerns about the
above.
Respectfully.
[This statement was submitted by Susan Henderson, Executive
Director,
Disability Rights Education & Defense Fund.]
______
Prepared Statement of Duke Health
Duke Health (the conceptual integration of the Duke University
Health System, the schools of Medicine and Nursing, the Private
Diagnostic Clinic as the independent, multi-specialty physician
practice, and other health and health research centers across Duke
University) would like to express appreciation for Federal support
provided to academic health centers across the United States,
especially in this unprecedented time of the COVID-19 public health
emergency. COVID-19 has illustrated how vital the investments from this
Subcommittee are for securing a healthcare infrastructure in the United
States that can research and develop new vaccines and therapeutics, and
provide high-quality care to patients at all times.
Duke Health is committed to conducting innovative basic and
clinical research, rapidly translating breakthrough discoveries to
patient care and population health, providing a unique educational
experience to future clinical and scientific leaders, improving the
health of populations, and actively seeking policy and intervention-
based solutions to complex global health challenges. Underlying these
ambitions is a belief that Duke Health is a destination for outstanding
people and a dedication to continually explore new ways to help people
grow, collaborate, and succeed.
Reflecting Duke Health's mission of ``Advancing Health Together,''
this written testimony outlines Duke Health's biomedical research and
healthcare priorities that represent sound investments in vital
programs at HHS that make a difference in the lives of patients across
the United States. Thank you for this opportunity to submit written
testimony.
national institutes of health (nih)
Duke Health is grateful for Congress' robust investments in NIH,
which has kept the United States on the cutting edge of new biomedical
advances. For fiscal year 2021, Duke Health respectfully requests at
least $44.7 billion for the NIH. This funding would allow for
meaningful growth above inflation in the base budget and aid efforts to
expand NIH's capacity to support promising science in all disciplines
in addition to special initiatives. Labs across the country that were
conducting groundbreaking biomedical research have paused due to COVID-
19, losing ground on every other disease. As these labs restart,
additional resources from NIH will be vital to support the biomedical
infrastructure in the United States and to continue biomedical
advances. Thoughtful consideration must be given to how this
subcommittee can help meet the biomedical research needs for labs and
workforce as a result of COVID-19.
At Duke, NIH funding plays a critical role in the advancement of
research and clinical care. NIH has supported vital research at the
Duke Clinical Research Institute, the world's largest academic research
organization working to improve patient care through innovative
clinical research; the Duke Human Vaccine Institute, a national and
international leader in the fight against major infectious diseases;
and the Duke Cancer Institute, a top comprehensive cancer center in
peer-reviewed research support.
Duke Health asks the Subcommittee to not include language that
would limit the use of nonhuman primates in research that could cripple
the search for treatments and cures for many human diseases, especially
therapeutics and vaccines for COVID-19.
centers for disease control and prevention (cdc)
The CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
Now, more than ever, investments in the nation's public health
infrastructure are vital. Duke Health urges the Subcommittee to provide
$8.3 billion for the CDC in fiscal year 2021. From aiding in the
surveillance, detection and prevention of the Zika virus to playing a
lead role in the control of Ebola in West Africa and the current COVID-
19 public health emergency, CDC is the world's expert resource and
response center, coordinating communications, and serving as the
laboratory reference center.
Among its many programs, the Prevention Epicenters Program is a
unique research program in which CDC's Division of Healthcare Quality
Promotion collaborates with academic investigators to conduct
innovative infection control and prevention research. The Duke-UNC
Epicenter has considerable experience and research expertise in
hospital epidemiology, infection control, antimicrobial stewardship,
epidemiologic studies of multidrug-resistant organisms, disinfection,
and sterilization. In addition, the Duke Infection Control Outreach
Network (DICON) and Duke Antimicrobial Stewardship Outreach Network
(DASON) engage over 60 community hospitals in the United States.
Duke Health is grateful for the $2 million increase in fiscal year
2020 for the CDC's Agency for Toxic Substances and Disease Registry.
Although this program does not fall under the jurisdiction of this
Subcommittee, Duke Health continues to support a robust investment in
its activities at the CDC, which are closely linked with the vital
activities at the Superfund Research Center at Duke University. This
Center receives its funding from the National Institute of
Environmental Health Sciences Superfund Research Program at NIH.
health resources and services administration (hrsa)
Duke Health appreciates the Subcommittee's continued investment in
Title VII health professions and training programs and Title VIII
Nursing Workforce Development programs at HRSA. These programs ensure a
well-trained pipeline of health professionals to meet the increasing
health needs facing the United States. For fiscal year 2021, Duke
Health respectfully requests that the Subcommittee provide $512 million
for Title VII and VIII programs overall, including $278 million to be
allocated for Title VIII Nursing Development Workforce Programs. Title
VII and Title VIII are the only Federal programs that support
education/training opportunities for an array of aspiring and
practicing health professionals, both facilitating career opportunities
and bringing healthcare services to rural and underserved communities.
Duke Health urges the Subcommittee to provide $23 million in fiscal
year 2021 for the National Cord Blood Inventory (NCBI) at HRSA. This
program is charged with building a genetically and ethnically diverse
inventory of at least 150,000 new units of high-quality umbilical cord
blood for transplantation. These cord blood units (CBUs), as well as
other units in the inventories of participating cord blood banks, are
made available to physicians and patients for blood stem cell
transplants through the C.W. Bill Young Cell Transplantation Program.
Cord blood banks participating in the NCBI Program, including the
Carolinas Cord Blood Bank in the Duke University School of Medicine,
also make cord blood units available for preclinical and clinical
research focusing on cord blood stem cell biology and the use of cord
blood stem cells for human transplantation and cellular therapies.
Blood stem cell transplantation is potentially a curative therapy
for many individuals with leukemia and other life-threatening blood and
genetic disorders. Each year, nearly 18,000 people in the U.S. are
diagnosed with illnesses for which blood stem cell transplantation from
a matched donor is their best treatment option. Often, the first-choice
donor is a sibling, but only 30 percent of people have a fully tissue-
matched brother or sister. For the other 70 percent, a search for a
matched unrelated adult donor or a matched umbilical cord blood unit
must be performed. The success of cord blood stem cell therapies in
treating diseases and alleviating suffering makes an urgent and
compelling case for funding this program.
Duke Health respectfully requests the Subcommittee provide $30
million for the C.W. Bill Young Cell Transplantation Program through
the National Cord Blood Inventory (NCBI) at HRSA in fiscal year 2021.
The Carolinas Cord Blood Bank (CCCB) at Duke is a member bank of the
National Cord Blood Inventory of the C.W. Bill Young Cell
Transplantation Program. The goal of this program is to increase the
number of transplants for recipients suitably matched to biologically
unrelated donors of bone marrow and umbilical cord blood. The CCBB is
one of the largest cord blood banks in the world. Cord blood units that
are banked at CCBB are listed on the National Marrow Donor Program
(NMDP) Be the Match(r) Registry, an accumulated listing of donated cord
blood units from participating banks that are available to provide
donors for patients needing a hematopoietic stem cell transplant to
treat cancer or certain genetic diseases.
Thousands of mothers have donated their cord blood to the CCBB.
Banked units are comprised of African-American, Hispanic-American,
Asian-American, and Caucasian samples. This diversity helps patients of
all racial and ethnic backgrounds find suitable matches for
transplantation. The CCBB has distributed cord blood units for
transplantation to several thousand patients since 1999. Cord blood
recipients of CCBB units include children and adult patients facing
life-threatening illnesses who need a ``stem cell'' transplant from an
unrelated donor to provide them with healthy blood cells. Many of these
patients have been affected by leukemia, lymphoma, severe aplastic
anemia, or other fatal diseases of the blood or immune system, or
certain inherited metabolic diseases. In addition to life-saving
transplants, the CCBB also provides cord blood units for research.
These units are made available to investigators for critical research
in the area of cord blood and stem cell biology. The impact of funding
has far reaching impacts, and Duke Health urges the Subcommittee to
support this request.
agency for healthcare research and quality (ahrq)
Duke Health urges the Subcommittee to provide $471 million for the
Agency for Healthcare Research and Quality in fiscal year 2021. This
funding level is consistent with the fiscal year 2010 level adjusted
for inflation and would allow AHRQ to rebuild portfolios terminated as
a result of years of past cuts and expand its research and training
portfolio to address our nation's pressing and evolving healthcare
challenges. As the agency that provides funding for health systems
research, AHRQ is vital to improving health, safety and health outcomes
for patients. AHRQ is forward thinking, addressing issues such as data
analytics, and is providing important resources for healthcare
professionals during COVID-19.
Patients with sickle cell disease (SCD), an inherited red blood
cell disorder, often have intense pain that brings them to hospital
emergency departments (EDs) for immediate treatment. Their care can be
fragmented, with frequent hospitalizations and specialist care,
infrequent follow-up with primary care doctors, and repeat ED visits.
Funding from AHRQ supports activities at the Duke University School of
Nursing to improve the care of these patients in the ED department,
particularly through the development and use of evidence-based decision
support tools. In addition, AHRQ funding supports the Duke Center for
Healthcare Safety and Quality, which works to develop and support
quality and safety related roles and committees, training, tools,
research, strategies, data and other resources through an
interdisciplinary team.
substance abuse and mental health services administration (samhsa)
Duke Health appreciates investments in the National Child Traumatic
Stress Network (NCTSN) grant program at SAMHSA, especially efforts to
provide additional funding for this program during COVID-19. For fiscal
year 2021 Duke Health urges the Subcommittee to provide $73.9 million
for NCTSN.
NCTSN, which is coordinated by the UCLA-Duke University National
Center for Child Traumatic Stress, increases access to services for
children and families who experience or witness traumatic events. This
unique network of frontline providers, family members, researchers, and
national partners is committed to changing the course of children's
lives by improving their care and moving scientific gains quickly into
practice across the U.S. In recent years, estimates from the NCTSN
Collaborative Change Project (CoCap) have indicated that each quarter
about 35,000 individuals--children, adolescents and their families--
directly benefited from services through this Network. Since its
inception, the NCTSN has trained more than one million professionals in
trauma-informed interventions. Hundreds of thousands more are
benefiting from the other community services, website resources,
educational products, community programs, and more. Over 10,000 local
and state partnerships have been established by NCTSN members in their
work to integrate trauma-informed services into all child-serving
systems, including child protective services, health and mental health
programs, child welfare, education, residential care, juvenile justice,
courts, and programs serving military and veteran families.
office of the assistant secretary for preparedness and response (aspr)
Duke Health requests that the Subcommittee provide $11.5 million,
full authorized funding, for the Military and Civilian Partnership for
the Trauma Readiness Grant Program for fiscal year 2021 within ASPR.
Originally known as MISSION ZERO, this critical program would provide
funding to ensure trauma care readiness by integrating military trauma
care providers into civilian trauma centers. These partnerships allow
military trauma care providers to gain exposure to treating critically
injured patients in communities and keep their skills sharp to increase
readiness for deployment. Additionally, they allow civilian trauma care
providers to gain insight into best practices from the battlefield that
can be integrated into civilian care. Fully funding this program will
help to improve the nation's response to public health and medical
emergencies.
______
Prepared Statement of the Dystonia Medical Research Foundation
summary of recommendations for fiscal year 2020
_______________________________________________________________________
--Provide $44.7 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue dystonia research supported by NIH through the National
Institute on Neurological Disorders and Stroke (NINDS), the
National Institute on Deafness and other Communication
Disorders (NIDCD), and the National Eye Institute (NEI).
_______________________________________________________________________
Dystonia is a neurological movement disorder that causes muscles to
contract and spasm involuntarily. It affects men, women and children.
Dystonia can be generalized, affecting all major muscle groups, and
resulting in twisting, repetitive movements and abnormal postures or
focal, affecting a specific part of the body such as legs, arms, hands,
neck, face, mouth, eyelids and vocal cords. Currently, it is estimated
that at least 300,000 individuals in North America suffer from
dystonia, making it more common than Huntington's, muscular dystrophy,
and ALS. There is no known cure for dystonia.
dystonia research at the national institutes of health
The Dystonia Medical Research Foundation urges the Subcommittee to
continue its support for natural history studies on dystonia that will
advance the pace of clinical and translational research to find better
treatments and a cure. In addition, we encourage Congress to continue
supporting NINDS, NIDCD, and NEI in conducting and expanding critical
research on dystonia.
Currently, dystonia research at NIH is supported by the National
Institute of Neurological Disorders and Stroke (NINDS), the National
Institute on Deafness and Other Communication Disorders (NIDCD), and
the National Eye Institute (NEI).
The majority of dystonia research at NIH is supported by NINDS.
NINDS has utilized a number of funding mechanisms in recent years to
study the causes and mechanisms of dystonia. These grants cover a wide
range of research including the genetics and genomics of dystonia, the
development of animal models of primary and secondary dystonia,
molecular and cellular studies in inherited forms of dystonia,
epidemiology studies, and brain imaging. Earlier this year, NINDS
released a summary of our 2018 meeting that focused on defining
emerging opportunities in dystonia research.
Key findings include (1) noting that the heterogeneity of dystonia
poses challenges to research and therapy development. (2) There is more
to be learned from genetic subtypes, along clinical, etiology, and
pathophysiology axes. (3) In order to facilitate key advancements in
research technology, there needs to be more collaboration. (4) New
research priorities should include the generation and integration of
high-quality phenotypic and genotypic data. (5) reproducing key
features in cellular and animal models, both of basic cellular
mechanisms and phenotypes, leveraging new research technologies. (6)
Collaboration is necessary both for collection of large data sets and
integration of different research methods.
It is of great significance that a number of dystonia patient
advocacy group, led by the Dystonia Medical Research Foundation,
actively took part in the meeting and are working to ensure that
Congress continues to support robust NIH funding.
NIDCD and NEI also support research on dystonia. NIDCD has funded
many studies on brainstem systems and their role in spasmodic
dysphonia, or laryngeal dystonia. Spasmodic dysphonia is a form of
focal dystonia which involves involuntary spasms of the vocal cords
causing interruptions of speech and affecting voice quality. NEI
focuses some of its resources on the study of blepharospasm.
Blepharospasm is an abnormal, involuntary blinking of the eyelids which
can render a patient legally blind due to a patient's inability to open
their eyelids. We were pleased to see that Congress has encouraged both
NIDCD and NEI to expand their research into both spasmodic dysphonia
and blepharospasm.
We thank the committee for the increase for NIH in fiscal year
2020. We know firsthand that this will further NIH's ability to fund
meaningful research that benefits our patients.
patient perspectives
My dystonia first presented when I was about 8 years old and my
parents took me to many, many doctors. My foot and leg would turn in
when I tried to walk--making walking very difficult. The kids at school
would tease me and called me names like ``mental foot''. When I
couldn't explain it, they teased me more. Finally, at the age of 12 the
diagnosis of dystonia was made. I have the genetic form of dystonia--
DYT1 dystonia that is generalized and commonly affects children between
the ages of 8 to 15. For me, dystonia spread from my left foot to both
legs, my arms and my back. When I walked, my back would arch and put a
lot of pressure on the bottom of my spine which was pretty painful. My
legs were very tight. My right foot started to turn in and that put
pressure on my ankle when I walked. My right arm was very tight, so
when I had to write it was painful. I decided to pursue Deep Brain
Stimulation for my dystonia when it became too painful to walk with my
son to the park that was around the corner from our house. The results
have been life-changing. My wife and sons now have a husband and father
who, despite having dystonia, is physically able to be active and a
part of their lives. It isn't a cure but a treatment that really worked
for me.
blepharospasm
I drive through Atlanta's brutal traffic when suddenly, my eyes
clamp shut. I pry my left eye open with thumb and forefinger, steer
with my right hand. My eyes open for a few seconds, then close with no
warning. What is happening? Over the next few months, these spasms
progress from eyes to lower face, neck and shoulders. A year later I am
diagnosed with Dystonia, a debilitating, little-known disease. A
healthy 49-year-old mother of three, I now fight constant pain; can no
longer work, drive or perform basic activities. Even walking our dog is
a dangerous fall risk.
spasmodic dysphonia
Spasmodic dysphonia (SD), a focal form of dystonia, is a
neurological voice disorder that involves ``spasms'' of the vocal cords
causing interruptions of speech and affecting voice quality. My voice
sounds strained or strangled with breaks where no sound is produced.
When untreated, it is difficult for others to understand me. I receive
injections of botulinum toxin into my vocal cords every 3 months for
temporary relief of symptoms. This has worked well for me for over a
decade. At the start of this year, my insurance coverage changed when
my husband's company changed providers. As a result, I had to undergo
an extensive review process and change methods for obtaining my
medicine. The review lasted for four weeks. Multiple times during this
time period, my doctor and I were told that I had been denied coverage.
We had to make numerous phone calls to encourage the company and
specialty pharmacy to review my case again and again. These phone calls
were extremely difficult as my voice deteriorated from the delay in
treatment. The automated phone systems were the worst, but the
representatives also had trouble understanding my broken voice and I
had to repeat my information over and over. Finally, the company
determined my treatment is medically necessary and has approved it for
1 year. After a seven week delay, I am scheduled for my injection and
am looking forward to a period of spasm-free speaking.
DMRF was founded in 1976. Since its inception, the goals of DMRF
have remained to advance research for more effective treatments of
dystonia and ultimately find a cure; to promote awareness and
education; and support the needs and wellbeing of affected individuals
and their families.
Thank you for the opportunity to present the views of the dystonia
community, we look forward to providing any additional information.
[This statement was submitted by Janet Hieshetter, Executive
Director, Dystonia Medical Research Foundation.]
______
Prepared Statement of The Education Trust
On behalf of The Education Trust, an organization dedicated to
closing long-standing gaps in opportunity and achievement separating
students from low-income backgrounds and students of color from their
peers, thank you for the opportunity to present testimony on the fiscal
year 2021 Labor, Health and Human Services, Education and Related
Agencies (L-HHS-ED) Appropriations bill. We request that the L-HHS-ED
bill receive its proportional share of the discretionary increase in
the fiscal year 2021 budget caps to ensure that essential education
programs have the resources they need.
It is important to acknowledge that this year's appropriations
process is operating during an unforeseen and unprecedented crisis. The
Education Trust has articulated our views on what must be done in
separate, uncapped stimulus packages to provide for our nation's
students and protect our public education systems in face of the
ongoing massive challenges posed by the coronavirus pandemic. During
this pandemic, we call on Congress to take swift action to:
--Double the Pell Grant and make it non-taxable in the face of
widespread job loss, uncertainty about college enrollment, and
structural racial and financial inequities in college access
and attainment;
--Appropriate at least $250 billion for states to help combat
coronavirus-related declines in financial support for public P-
12 and higher education systems, accompanied by maintenance of
effort provisions that ensure state investments do not decline
past recent levels;
--Invest at least $6 billion in expanding broadband access to both K-
12 and college students who are increasingly likely to be
remote learning into academic year 2020-2021;
--Continue to fund and expand the Pandemic EBT program, eliminate
barriers for students and families in accessing SNAP benefits,
and provide continued flexibility for the Department of
Agriculture (USDA) to extend relevant nationwide and state-by-
state waivers to ensure that meals can be served to children in
whatever form is safe and necessary during the summer and while
students cannot return to school;
--Maintain the suspension of student loan payments and interest for
all Federal loans, and authorize targeted student loan
forgiveness provisions to give relief to millions of borrowers;
--Create a dedicated funding stream to address learning loss and
summer slide made available to LEAs for summer school and
extended learning opportunities for students and schools with
the highest need for summer 2020, academic year 2020-2021, and
summer 2021; and
--Create a dedicated funding stream to address the need for increased
academic, social-emotional, and physical supports for students,
educations, and families during and in the aftermath of the
coronavirus crisis.
We look forward to working with staff on these priorities and
others in the ongoing stimulus and relief process as the crisis
continues to unfold over the coming months.
Regarding the regular appropriations process, while there are many
programs under your jurisdiction that are critical to advancing equity,
for fiscal year 2021, The Education Trust is focused on the following:
strengthening the Pell Grant program by increasing the maximum award
$156 to keep pace with inflation, at a minimum; protecting the existing
Pell Grant reserve; supporting teachers and school leaders by level
funding ESSA's Title II-A ($2.13B), the Teacher and School Leader
Incentive Program ($200 million), the Supporting Effective Educator
Development Program ($80 million), HEA's Title II's Teacher Quality
Partnership grants ($50 million); and restoring funding to the School
Leader Recruitment and Support Program ($14.5M). Finally, we request
that the Augustus Hawkins Centers, which support enhanced educator
preparation for teaching candidates at HBCUs and MSIs, receive $40
million in funding for fiscal year 2021. We are encouraged by the
slight increase in funding levels provided by the House Subcommittee on
Labor, Health and Human Services, Education and Related Agencies (L-
HHS-ED) in the last appropriations cycle for some of these initiatives
and urge continued support for these critical programs.
strengthening the pell grant program
The Pell Grant program is the cornerstone of Federal financial aid.
Created in 1972 as the Basic Educational Opportunity Grant, the program
benefits over 7 million students annually and continues to serve as the
primary Federal effort to open the door to college for students from
low-income backgrounds. Over one-third of White students, two-thirds of
Black students, and half of Latino students rely on Pell Grants every
year.\1\ Pell Grant dollars are well-targeted to those in need: 83
percent of Pell recipients come from families with annual incomes at or
below $40,000, including 44 percent with annual family incomes at or
below $15,000.\2\
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\1\ Congressional Budget Office (CBO), January 2017 baseline
projections for the Pell Grant program, http://bit.ly/2mLy0nk, Table 2;
and Ed Trust calculation NPSAS:12 using PowerStats.
\2\ Analysis of Federal Pell Grant Program Annual Data Report,
available at https://www2.ed.gov/finaid/prof/resources/data/pell-
data.html.
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Increasing the Maximum Award and Protecting the Pell Reserve
The Pell Grant program's impact is shrinking as the maximum award
has failed to keep pace with the rapidly rising cost of college. The
purchasing power of the Pell Grant has dropped dramatically since the
program's inception. In 1980, the maximum Pell Grant award covered 77
percent of the cost of attendance at a public university. Today, it
covers just over 28 percent, the lowest portion in over 40 years. If
the maximum award continues to stagnate, the grant will cover just one-
fifth of college costs in 10 years.
We very much appreciate previous increases to the maximum award in
prior appropriations bills, and we respectfully request that you
continue to increase the maximum award amount. For fiscal year 2021,
Congress should, at minimum, increase the maximum award by $156 to
$6,501 to keep pace with inflation. As indicated above, we also ask
Congress to include within the forthcoming coronavirus stimulus package
provisions to double the Pell Grant, helping to reverse the downward
trend of Pell's purchasing power, ensuring that the maximum Pell award
covers at least half of the cost of attendance at a public four-year
institution.
Congress should also ensure that the program's reserve funds remain
within the program. Students and families already needed help paying
for college, and the pandemic will only make the amount of help they
need even greater. It remains unclear how the combination of the
pandemic and an economic recession will affect net college enrollment.
However, current unemployment is the highest it has been since the
Great Depression, and this may result in a surge in college enrollment
like the one during the previous recession. Cuts to Pell, especially in
this context, could quickly put the program in jeopardy and generate
unnecessary uncertainty for students. If used for anything, the Pell
reserve should be used to improve and expand Pell.
supporting teachers and school leaders
Research and experience show the powerful impact that teachers and
school leaders have on student learning. ESSA's Title II program
provides grants to states and districts that can be used to invest in
and develop the education profession. These funds can be used to, among
other things, address inequities in access to effective teachers and
school leaders, provide professional development, and improve teacher
recruitment and retention. States and districts can also apply for
additional competitive grant dollars for programs targeted at specific,
evidence-based strategies for improving teacher and school leader
effectiveness and increasing educator diversity. Additionally, HEA's
Title II Teacher Quality Partnership grants (TQP), awarded to
partnerships of high-need districts and teacher preparation programs at
institutions of higher education, can be used to recruit
underrepresented populations to the teaching profession. As Ed Trust's
work continues to demonstrate the positive impact that diverse teachers
and school leaders of color can have on the academic achievement of
both students of color and White students, we remain supportive of
Federal dollars to increase and bolster the diversity of the educator
pipeline.
Maintain funding for ESSA's Title II-A (Supporting Effective
Instruction), the Teacher and School Leader Incentive Program
(TSLIP), the Supporting Effective Educator Development (SEED)
program, and HEA's Title II Teacher Quality Partnership (TQP)
grants
Despite the nationwide attention to the need to invest in
educators, President Trump's fiscal year 2021 budget request again
called for the elimination via block grant of the Title II-A grant, the
SEED program, the TSLIP, and HEA's Title II Teacher Quality Partnership
grants. We appreciate Congress' prior rejection of similar requests in
the fiscal year 2019 omnibus appropriations bill.
At a minimum, in fiscal year 2020, Congress should continue funding
Title II-A, TSLIP, SEED, and TQP at fiscal year 2020 levels: $2.13B,
$200 million, $80 million, and $50 million, respectively.
Fund the Augustus Hawkins Centers of Excellence Grant Program
Research has shown that students of color benefit tremendously from
having teachers of color, particularly one of the same racial
background: they are less likely to be chronically absent or suspended
from school, more likely to be recommended for gifted and talented
programs, and low-income Black students who have a Black teacher for at
least 1 year in elementary school are less likely to drop out of high
school and more likely to consider college. Despite students of color
making up a majority of students in public schools, the diversity gap
for teachers of color still exists in every state.
The nationwide impact of HBCUs, MSIs, HSIs, and TCUs on producing
teachers of color cannot be overstated. HBCUs, TCUs, and MSIs,
collectively, award only 11 percent of the nation's bachelor's degrees
in education, yet they produce more than 50 percent of the bachelor's
degrees earned in education by Hispanic and Native Hawaiian and Pacific
Islander students.\3\ HBCUs graduate approximately 50 percent of the
nation's African American teachers with bachelor's degrees.\4\ HSIs
prepare 90 percent of Hispanic teachers, and along with other MSIs,
constitute a vital pipeline to maintain diversity among our nation's
teachers.\5\
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\3\ Branch Alliance for Educator Diversity, ``Homepage,'' available
at https://www.educatordiversity.org/.
\4\ Jacqueline Jordan Irvine and Leslie T. Fenwick, ``Teachers and
Teaching for the New Millennium: The Role of HBCUs,'' The Journal of
Negro Education 80 (3) (2011): 197-208, available at http://
www.jstor.org/stable/41341128; National Association for Equal
Opportunity in Higher Education: Comments to the Department of
Education proposed rule changes for teacher preparation programs
available at: http://nafeonation.org/wp-content/uploads/2015/01/
NADEC_Teacher_Prep_Regulations_Discussion_Document_2-2-15.pdf.
\5\ Hispanic Association of Colleges and Universities, ``Teacher
Diversity,'' https://www.hacuadvocates.net/teacherdiversity?1.
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In light of the importance of these institutions and the increased
needs they experience as a result of graduating an outsized portion of
the nation's teachers of color, we request that the Augustus Hawkins
Centers of Excellence Grant program receive funding for the first time
since its creation in the bipartisan Higher Education Act of 2008. The
program would provide critical funding to these key institutions to
provide increased and enhanced clinical experience and increased
financial aid to prospective teachers of color, who face higher burdens
in college access and affordability than their White peers.
For fiscal year 2021, Congress should fund the Augustus Hawkins
Centers of Excellence Grant Program at $40 million.
Restore Funding for the School Leader Recruitment and Support Program
Landmark research funded by the Wallace Foundation has found
``virtually no documented instances of troubled schools being turned
around without intervention by a powerful leader,'' and the School
Leader Recruitment and Support Program is the only Federal program
specifically focused on investing in evidence-based, locally driven
strategies to strengthen school leadership in high-need schools. A
recently concluded seven-year study of school districts that created
pipelines to develop school leaders saw increasing gains in student
achievement over time, showing how a sustained initiative can
demonstrate positive effects on student learning.
It is also worth noting that the need to develop strong and diverse
school leaders has only been heightened due to the coronavirus
pandemic. The school closures taking place across America are
disproportionately hurting students from low-income backgrounds and
students of color, and they need teachers and leaders who are supported
and qualified to tackle the historic learning loss and trauma they are
facing. In order to effectively counter those growing problems, funding
must be in place to ensure those diverse teachers and leaders get the
training they need to stay in the classroom.
During the past decade, we have learned a lot about what works in
education leadership--lessons made possible, in part, by Federal
investments in the School Leader Program (the previous iteration of the
SLRSP). There is still a great deal of work to do, especially when it
comes to identifying and efficiently preparing effective turnaround
leaders, as well as sustainably supporting them to accelerate academic
achievement, close gaps, and maintain improvement over time for all
students and in every community. The SLRSP is a key lever for seeding
the next generation of effective school leader development programs,
promoting equity, advancing ongoing innovation, and sharing cutting-
edge lessons on transformational leadership with the broader field.
For fiscal year 2021, Congress should restore funding for the
School Leader Recruitment and Support Program to $14.5M, its fiscal
year 2017 appropriation level.
Thank you for the opportunity to submit testimony. The Education
Trust looks forward to working with Congress to allocate Federal funds
in a way that addresses the critical equity gaps that our nation's
students from low-income backgrounds and students of color continue to
face. We are happy to respond to any questions or concerns that you may
have on these topics, and look forward to continuing to work with you
on coronavirus response stimulus and relief and through the fiscal year
2021 appropriations process.
[This statement was submitted by John B. King Jr., President and
CEO, The
Education Trust.]
______
Prepared Statement of the Endocrine Society
The Endocrine Society thanks the Subcommittee for the opportunity
to submit the following testimony regarding fiscal year 2021 Federal
appropriations for biomedical research and public health programs. The
Endocrine Society is the world's oldest and largest professional
organization of endocrinologists representing approximately 18,000
members worldwide. The Society's membership includes basic and clinical
scientists who receive support from the National Institutes of Health
(NIH) for research on endocrine diseases that affect millions of
Americans, such as diabetes, thyroid disorders, cancer, infertility,
aging, obesity and bone disease. Our membership also includes
clinicians who depend on new scientific advances to better treat and
cure these diseases. Our organization is dedicated to promoting
excellence in research, education, and clinical practice in the field
of endocrinology.
The Endocrine Society offers the following recommendations for
fiscal year 2021:
--At least $44.7 billion for the NIH to support necessary advances in
biomedical research to improve health;
--At least $8.2 billion for the CDC to facilitate the translation of
these advances to improve public health; and
--$400 million for the Title X program to ensure that women have
access to appropriate health services.
The current COVID-19 pandemic is a compelling illustration of why
we must sustain funding for the NIH and CDC to protect the public's
health. In addition to a strong annual appropriation for these
agencies, emergency supplemental funding is required to achieve
research goals to understand, treat, and prevent future outbreaks.
endocrine research improves public health
Sustained investment by the United States Federal Government in
biomedical research has dramatically advanced the health and improved
the lives of the American people. The United States' NIH-supported
scientists represent the vanguard of researchers making fundamental
biological discoveries and developing applied therapies that advance
our understanding of, and ability to treat human diseases. Their
research has led to new medical treatments, saved innumerable lives,
reduced human suffering, and launched entire new industries.
Endocrine scientists are a vital component of our nation's
biomedical research enterprise and are integral to the healthcare
infrastructure in the United States. Endocrine Society members study
how hormones contribute to the overall function of the body and how the
glands and organs of the endocrine system work together to keep us
healthy. The multiple body functions governed by the endocrine system
are broad and essential to overall wellbeing: endocrine functions
include reproduction, the body's response to stress and injury, sexual
development, energy balance and metabolism, and bone and muscle
strength. Endocrinologists also study interrelated systems, for example
how hormones produced by fat can influence the development of bone
disease and susceptibility to infections.
With the emergence of the COVID-19 pandemic, endocrinology has
taken on a new role in understanding how endocrine systems and
endocrine disease intersect with the virus and infection pathways. The
presence of diabetes is a critical risk factor impacting outcomes for
patients with COVID-19 and understanding shared pathophysiology and
therapeutic implications of treatments for both diseases remains an
important area of active research.\1\ As we learn more about the virus
and implications for patients with endocrine disease, funding for
public health agencies is more important than ever.
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\1\ Daniel J Drucker, Endocrine Reviews, Volume 41, Issue 3, June
2020, bnaa011, https://doi.org/10.1210/endrev/bnaa011.
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endocrine research is supported by numerous nih institutes
Many endocrine diseases and disorders are addressed by the missions
of multiple NIH Institutes and Centers (ICs); research on all
biological systems and disease states is necessary to advance effective
therapies for these diseases. For example:
--Endocrine researchers funded by the National Institute of Aging
(NIA) help us understand how hormonal treatment for menopause
might improve stress responses in women.\2\ Other NIA-funded
researchers are investigating how the loss of ovarian hormones
due to surgery affects overall aging, physical and cognitive
function, and risk for Alzheimer's disease pathophysiology.
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\2\ https://www.endocrine.org/news-room/press-release-archives/
2017/treating-menopausal-symptoms-can-protect-against-stress-negative-
effects Accessed March 11, 2018.
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--Researchers funded by the Eunice Kennedy Shriver National Institute
of Child Health and Human Development (NICHD) are discovering
how hormones influence the gut microbiome, which in turn can
influence the development of polycystic ovarian syndrome
(PCOS).\3\
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\3\ Torres, PJ, et al., The Journal of Clinical Endocrinology &
Metabolism, jc.2017-02153.
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--Endocrine oncologists supported by the National Cancer Institute
developed a new drug with a unique mechanism that could inhibit
the growth of drug-resistant prostate cancer.\4\
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\4\ https://www.endocrine.org/news-room/press-release-archives/
2013/new-medication-treats-drug-resistant-prostate-cancer-in-the-
laboratory. Accessed March 11, 2018.
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--Diabetologists funded by the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) are advancing knowledge
of how insulin-producing cells develop so that we can apply
this knowledge towards regenerative medicine and cell-based
approaches to the treatment of diabetes.\5\
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\5\ Sharon, N, et al., Cell. 2019 Feb 7;176(4):790-804.e13. doi:
10.1016/j.cell.2018.12.003. Epub 2019 Jan 17.
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--National Institute of Environmental Health Science (NIEHS)-funded
researchers are investigating how per-and polyfluoroalkyl
substances can disrupt endocrine systems resulting in
reproductive and cognitive health effects.\6\
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\6\ Vuong, A., et al., Environmental research. 2019 Feb 16; 172
:242-248.
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--Neuroendocrine researchers funded by National Institute of Mental
Health (NIMH) are discovering how overexposure to
glucocorticoids early in life can cause anxiety--and
depressive-like behaviors in adults in response to stress, and
how these behaviors may differ between males and females.
Moreover, multiple ICs are prepared to use rapidly use emergency
supplemental funds to prioritize critical endocrine-related research on
COVID-19 such as:
--Helping us understand how endocrine-disrupting chemicals (EDCs)
contribute to chronic diseases that are comorbidities for
COVID-19.
--Understanding the short and long-term impacts of COVID-19 infection
on pregnant women and pediatric patients.
--Understanding how health disparities contribute to COVID-19 disease
risk and outcomes.
An effective biomedical research enterprise therefore requires a
strong base appropriation for the NIH and sustained support for all ICs
in addition to emergency supplemental funding to study COVID-19 and
impacts on patients with endocrine disease.
nih requires steady, sustainable funding increases
The Endocrine Society appreciates increases to the NIH budget in
recent fiscal years; however, the biomedical research community
requires steady, sustainable increases in funding to ensure that the
promise of scientific discovery can efficiently be translated into new
cures. NIH grant success rates are predicted to remain close to
historically low averages, meaning that highly skilled scientists will
continue to spend more time writing highly meritorious grants that will
not be funded. Young scientists will also continue to be driven out of
biomedical research careers due to the lack of funding. We know that
when laboratories lose financing; they lose people, ideas, innovations
and new patient treatments.\7\
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\7\ Teresa K. Woodruff ``Budget Woes and Research.'' The New York
Times. September 10, 2013.
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adequate funding of cdc programs is necessary to
protect the public's health
The CDC plays a critical role in protecting the public's health by
applying new knowledge to the promotion of health and prevention of
diseases, including diabetes. The Division of Diabetes Translation
administers the National Diabetes Prevention Program (National DPP),
which addresses the increasing burden of prediabetes and Type 2
Diabetes in the United States. The National DPP creates public and
private partnerships to provide evidence-based, cost-effective
interventions that prevent diabetes in community-based settings.
Through structured lifestyle change programs at local YMCAs or other
community centers, individuals with prediabetes can reduce the risk of
developing diabetes by 58 percent in those under 60 and by 71 percent
in those 60 and older.\8\ In addition to supporting public health and
prevention activities, CDC's Clinical Standardization Programs in the
Center for Environmental Health are critical to improving accurate and
reliable testing of hormones, appropriate diagnosis and treatment of
disease, and reproduceable public health research. Adequate funding is
critically important to ensure that CDC has the capacity to address
existing and emerging threats to public health in the United States and
around the world.
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\8\ The Diabetes Prevention Program (DPP) Research Group Diabetes
Care. 2002 Dec;25(12):2165-71.
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title x funding provides necessary services and reduces healthcare
costs
Title X is an important source of funding for ensuring reproductive
health benefits including both contraceptive and preventive services to
women. In 2015, a study found that Title X-funded health centers
prevented 822,000 unintended pregnancies, resulting in savings of $7
billion to Federal and State Governments. Offering affordable access to
contraception can have a measurable impact on these costs. For every
public dollar invested in contraception, short-term Medicaid
expenditures are reduced by $7.09 for the pregnancy, delivery, and
early childhood care related to births from unintended pregnancies,
resulting in savings of $7 billion to Federal and State Governments.\9\
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\9\ Frost JJ, et al., Publicly Funded Contraceptive Services at
U.S. Clinics, 2015, New York: Guttmacher Institute, 2017.
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Title X is the main point of care for low income, under- or un-
insured, adults and adolescents for affordable contraception, cancer
screenings, sexually transmitted disease testing and treatment, and
medically-accurate information on family planning options. However, to
provide these services to the over 4 million people who depend on Title
X-funded centers, Title X is significantly underfunded.
fiscal year 2021 funding requests
In conclusion, to avoid loss of promising research opportunities,
allow budgets to keep pace with inflation, support our public health
infrastructure, and assure high-quality, evidence-based, and patient-
centered family planning care while also addressing the COVID-19
pandemic, the Endocrine Society recommends that the Subcommittee
provide at least the following funding amounts through the fiscal year
2021 Labor, Health and Human Services, Education, and Related Agencies
appropriations bill:
--$44.7 billion for the National Institutes of Health, as well as
additional emergency supplemental funds needed to study COVID-
19
--$8.2 billion for the Centers for Disease Control and Prevention in
addition to emergency supplemental funds
--$400 million for Title X
______
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
vector-borne diseases (VBD) research at the U.S. Department of Health
and Human Services (HHS). ESA requests:
--$44.7 billion in fiscal year 2021 for the National Institutes of
Health (NIH), including increased support for VBD research at
the National Institute of Allergy and Infectious Diseases
(NIAID);
--$8.3 billion for the Centers for Disease Control and Prevention
(CDC), including investments in the budgets for VBD, global
health, and core infectious diseases; and
--Robust funding for the Institute of Museum and Library Services
(IMLS), including $42.7 million for the Office of Museum
Services.
ESA urges the subcommittee to support VBD research programs that
incorporate the entomological sciences as part of a comprehensive
approach to addressing infectious diseases. These efforts can help
mitigate the enormous impact that insect carriers of disease have on
human health. NIH, the nation's premier medical research agency,
advances human health by supporting research on basic human and
pathogen biology and by developing prevention and treatment strategies.
Cutting-edge research in the biological sciences, including the field
of entomology, is essential for addressing societal needs related to
environmental and human health. Many species of insects and arachnids,
including ticks and mites, are carriers or vectors of an array of
infectious diseases that threaten the health and well-being of people
worldwide. This threat impacts citizens in every U.S. state and
territory, as well as military personnel serving at home and abroad.
The mosquitoes that carry and transmit diseases are responsible for
more human deaths than all other animal species combined, including
other humans.\1\ VBD can be particularly challenging to manage due to
insect and arachnid mobility and their propensity to develop pesticide
resistance. Further, effective preventative treatments, including
vaccines, are not available for many VBD.
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\1\ https://www.gatesnotes.com/Health/Most-Lethal-Animal-Mosquito-
Week
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Within NIH, NIAID conducts and supports fundamental and applied
research related to understanding, preventing, and treating infectious
diseases. The risk of emerging infectious diseases grows as global
travel increases in speed and frequency and as environmental conditions
conducive to population growth of vectors, like mosquitoes and ticks,
continue to expand globally. Entomological research to understand and
characterize the relationships between insect vectors and the diseases
they transmit is essential to enable scientists to reliably monitor and
predict outbreaks, prevent disease transmission, and rapidly diagnose
and treat diseases. For example, NIAID-funded researchers are working
to understand how common prevention tools like mosquito repellent work
at the molecular level. Although topical mosquito repellents such as
DEET are a popular tool for preventing mosquito bites and mosquito-
borne diseases like malaria, the mechanism they use to repel mosquitoes
is not understood. Using grant funding from NIAID, researchers from
Johns Hopkins University have determined that DEET is an effective
mosquito repellent because it masks human odors from female
mosquitoes.\2\ Researchers can use these findings to develop similar
safe, low-cost mosquito repellents to prevent mosquito bites, reducing
the burden of mosquito-borne diseases.
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\2\ https://www.sciencedirect.com/science/article/abs/pii/
S0960982219311674.
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Given that the contributions of the CDC are vital for the health
security of the nation, ESA requests that the committee provide robust
support for CDC programs addressing VBD and to continue to support the
Centers of Excellence on VBD beyond 2021 with at least $10 million per
year. CDC, serving as the nation's leading health protection agency,
conducts scientific research and provides health information to prevent
and respond to infectious diseases and other global health threats,
irrespective of whether they arise naturally or via acts of
bioterrorism. Within the core infectious diseases budget of CDC, the
Division of Vector-Borne Diseases (DVBD) aims to protect the nation
from the threat of viruses, bacteria, and parasites transmitted
primarily by mosquitoes, ticks, and fleas. DVBD's mission is carried
out by a staff of experts in several scientific disciplines, including
entomology.
CDC plays a key role in tracking new and emerging diseases, as well
as in supporting healthcare professionals in identifying and diagnosing
these diseases. From 2016 to 2017, there was a 46 percent increase in
reported cases of a group of tick-borne diseases known as Spotted Fever
Rickettsiosis (SFR), which includes the notably fatal Rocky Mountain
spotted fever (RMSF).\3\ Disability and death from RMSF are treatable
if the antibiotic doxycycline is administered within the first five
days of illness: without treatment, 1 in 5 RMSF cases lead to death.\4\
Importantly, SFR, including RMSF, has non-specific symptoms, and fewer
than 1 percent of the SFR cases reported in 2016-2017 had sufficient
laboratory evidence for diagnosis. In response to this issue, the CDC
has created a first-of-its-kind education module that will help
healthcare providers recognize the early symptoms of RMSF and
distinguish it from other diseases, enabling affected patients to get
the life-saving treatment they need as quickly as possible.\5\ CDC
funding is crucial in the development of this and other educational
tools that equip healthcare providers to effectively combat tick-borne
diseases.
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\3\ https://www.ncbi.nlm.nih.gov/pubmed/?term=30969821.
\4\ https://www.cdc.gov/media/releases/2019/p0513-rocky-mountain-
spotted-fever-training.html.
\5\ https://www.cdc.gov/rmsf/resources/module.html.
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CDC has also awarded nearly $50 million to five universities to
establish regional centers of excellence (COE) that can help
effectively address emerging and exotic VBD. The five centers, for
which current funding expires in 2021, help generate the necessary
research, knowledge, and capacity to enable appropriate and timely
local public health action for VBD throughout the United States. The
COE model has also required collaboration between the research
institutions and the local and regional departments of health,
important relationships which haven't generally arisen organically.
This is critical given significant regional differences in vector
ecology, disease transmission dynamics, and resources.
A notable recent development supported by the Southeastern COE in
VBD involves an innovative ``attract-and-kill'' approach to mosquito
control. The strategy takes advantage of the discovery that female
mosquitoes are attracted to the common microbial compound geosmin, and
can be effectively lured into laying their eggs in traps containing
geosmin-scented water.\6\ Researchers hope that getting mosquitoes to
lay eggs in traps will help to break their ongoing breeding cycle and
ultimately curtail mosquito populations.
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\6\ https://www.cell.com/current-biology/fulltext/S0960-
9822(19)31441-1.
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ESA requests robust funding for IMLS, including no less than $42.7
million for the Office of Museum Services in fiscal year 2021. The
services and funding provided by IMLS are critical in several areas--
research infrastructure, workforce development and economic impact. The
IMLS provides for the expansion of collections capabilities at American
museums, which are key for the identification, documentation of
locations, and classification of entomological species. Funding
provides for the training and education of students and museum
professionals. The 21st Century Museum Professionals Program provides
opportunities for diverse and underrepresented populations to become
museum professionals, expanding participation in an industry with an
annual economic contribution of approximately $21 billion. Museums are
critical to the public understanding of emerging major scientific
issues through exhibits and programs, and in so doing, support science
education as an integral part of the nation's educational
infrastructure. Finally, they make significant long-term contributions
to economic development in their local communities.
ESA thanks the committee for the opportunity to provide input on
these important priorities. ESA, headquartered in Annapolis, Maryland,
is the largest organization in the world serving the professional and
scientific needs of entomologists and individuals in related
disciplines. As the largest and one of the oldest insect science
organizations in the world, ESA has over 7,000 members affiliated with
educational institutions, health agencies, private industry, and
government. Members are researchers, teachers, extension service
personnel, administrators, marketing representatives, research
technicians, consultants, students, pest management professionals, and
hobbyists. For more information about the Entomological Society of
America, please see http://www.entsoc.org/.
[This statement was submitted by Robert K.D. Peterson, PhD, Science
Policy Committee Chair and Past President, Entomological Society of
America.]
______
Prepared Statement of the Epilepsy Foundation
Dear Chairman Blunt and Ranking Member Murray:
The Epilepsy Foundation appreciates the opportunity to submit
written testimony as the Subcommittee begins its work on the fiscal
year 2021 Labor, Health and Human Services (HHS), Education and Related
Agencies appropriations bill. The Epilepsy Foundation respectfully
requests that the following funding levels be included in the final
fiscal year 2021 Labor, HHS, Education and Related Agencies bill: $11.5
million for the Centers for Disease Control and Prevention (CDC)'s
National Center for Chronic Disease Prevention and Health Promotion's
Epilepsy program; $44.7 billion for the National Institutes of Health
(NIH); $5 million for the National Neurological Conditions Surveillance
System at the CDC; $10 million for the Lifespan Respite Care Program;
and $8.8 billion for the Health Resources & Services Administration's
(HRSA) discretionary budget authority. Our written testimony focuses on
the incredible value and impact of CDC's Epilepsy program.
The Epilepsy Foundation is the leading national voluntary health
organization that speaks on behalf of the approximately 3.4 million
living with epilepsy and seizures. We foster the wellbeing of children
and adults affected by seizures through research programs, educational
activities, advocacy, and direct services. Epilepsy is a medical
condition characterized by seizures, which are sudden surges of
electrical activity in the brain, that affects a variety of mental and
physical functions.
The Institute of Medicine's (IOM) report on epilepsy, Epilepsy
Across the Spectrum: Promoting Health and Understanding, identifies the
Epilepsy Foundation and the CDC leaders in addressing many of its
national recommendations. The Epilepsy Foundation, supported by a
cooperative agreement with CDC, has made the following progress:
--Provided education and/or direct training on epilepsy to more than
81,531 law enforcement and first responders, 58,543 school
nurses and 419,541 students and teachers;
--Delivered evidence-based self-management training to people with
epilepsy so that they can take control of their health, better
cope with day-to-day challenges and reduce healthcare
utilization and healthcare costs;
--Reached underserved populations through:
--Project ECHO, a tele-mentoring process between an epilepsy
specialist and primary care providers, in Ohio, Indiana,
West Virginia and Kentucky;
--An advanced practice provider model with family nurse
practitioners and physician assistants;
--Delivery of signature programs through local Epilepsy Foundation
offices;
--Training community health workers in Texas and Illinois; and
--Outreach to behavioral health professionals in rural settings.
The Department of Health and Human Services initiative, Healthy
People 2020, includes the goal to ``increase the proportion of people
with epilepsy and uncontrolled seizures who receive appropriate medical
care.'' Continued and increased funding for the CDC epilepsy program is
critical to meeting this goal-as it is the only public health program
specifically related to epilepsy that offers a national scope and local
community programs.
Approximately 1 in 26 Americans will develop epilepsy at some point
in their lifetime. There is no ``one size fits all'' treatment option
for epilepsy, and despite available treatments, about a third of people
living with epilepsy--approximately 1 million--suffer from uncontrolled
or intractable seizures,\1\ with many more living with significant
side-effects. Among adults with epilepsy, only 50 percent have seen
both a primary care physician and a neurologist and epilepsy specialist
in the last year; 36 percent have seen a primary care physician only; 8
percent have seen a neurologist or epilepsy specialist only; and 6
percent have seen neither.\2\ Thirty-nine percent of those experiencing
seizures in the last year have not seen a neurologist.\3\ Compared to
adults with no history of epilepsy, adults with active epilepsy are
more likely to report not being able to afford their prescription drugs
(21 percent v. 9 percent) and mental healthcare (8 percent v. 2
percent) when these were needed in the previous year.\4\ Nine percent
of those with active epilepsy report not being able to obtain needed
healthcare because of a lack of transportation.\5\
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\1\ Patrick Kwan & Martin J. Brodie, Early identification of
refractory epilepsy, 342 N ENGL J MED 314-9 (2000). Retrieved from
https://www.nejm.org/doi/pdf/10.1056/NEJM2000020
33420503.
\2\ David J. Thurman et al., Health-care access among adults with
epilepsy: The U.S. National Health Interview Survey, 2010 and 2013, 55
EPILEPSY BEHAV 184-88 (2015). Retrieved from https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC5317396/.
\3\ Ibid.
\4\ Ibid.
\5\ Ibid.
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In fiscal year 2020, $9.5 million was appropriated for the CDC's
National Center for Chronic Disease Prevention and Health Promotion's
Epilepsy program. The $2 million additional requested funds will help
support epidemiologic studies, national dissemination of evidence-based
programs to address the access of care barriers described above and
expand provider education and public awareness campaigns to reduce
stigma. Epilepsy accounts for $19.4 billion in direct costs (medical)
and indirect costs (lost or reduced earnings and productivity) each
year. To decrease this public health burden and help more people with
epilepsy have a high quality of life and access the quality, physician-
directed and person-centered healthcare they need, we simply must do
more.
The Epilepsy Foundation thanks the Subcommittee for its
consideration. If you have any questions, please contact the Epilepsy
Foundation's Vice President of Government Relations and Advocacy Laura
Weidner at [email protected].
Sincerely.
[This statement was submitted by Laura E. Weidner, Esq., Vice
President,
Government Relations & Advocacy, Epilepsy Foundation.]
______
Prepared Statement of Evermore
Chairman Blunt, Ranking Member Murray, and members of the
Committee, thank you for the opportunity to provide testimony on the
fiscal year 2021 appropriations for key U.S. Department of Health &
Human Service Agencies including the Administration for Children and
Families (ACF), Centers for Disease Control and Prevention (CDC),
Centers for Medicare & Medicaid Services (CMS), Health Resources and
Services Administration (HRSA), Indian Health Service (IHS), National
Institutes of Health (NIH), Office of Minority Health (OMH), Substance
Abuse and Mental Health Services Administration (SAMHSA) and the Social
Security Administration (SSA). Your leadership has resulted in major
advances in the health and wellbeing of Americans, as well as ensuring
that our taxpayer dollars are appropriated to our nation's most
pressing health and human needs.
I am submitting this testimony on behalf of Evermore, a nonprofit
dedicated to making the world a more livable place for bereaved
families by raising awareness, advancing research, and advocating on
behalf of bereaved families and the professionals who serve them. The
unexpected or untimely death of a loved one is the most common
traumatic event Americans experience; many rate it as the worst event
of their life.\1\ This is not surprising considering suicide, homicide,
overdoses, mass casualty events, and now COVID-19. Americans are not
only exposed to an alarming number of tragic and often traumatic
deaths, but they are encountering a formidable array of barriers to
bereavement care that compound their suffering. For too long, access to
quality bereavement care has gone unrecognized by lawmakers, lacked
funding, and been excluded from Federal health agency priorities.
Although bereaved families indeed appreciate Congressional ``thoughts
and prayers,'' we desperately need your leadership on this immediate,
ongoing, and often invisible public health crisis. Epidemics of
suicide, opioid overdose, and others including contagious diseases are
so vast that our national life expectancy dropped for the first time in
a century. Arguably, we need your leadership more than ever.
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\1\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4119479/.
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Bereavement care is an essential element to any comprehensive
public health strategy. Our families require more support,
practitioners require more tools and resources, and we must understand
more about bereavement. Research not only saves lives, but drives
innovation.
Rigorous population-level studies, examining the health behaviors
and outcomes of millions of people, have concluded that bereaved
parents,\2\ siblings,\3\ children \4\ and spouses \5\ are all at risk
of premature death as a result of such loss. This is just the tip of
the iceberg: bereavement is an underlying driver of the poor health
undermining our nation's healthcare and social services systems.
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\2\ https://www.ncbi.nlm.nih.gov/pubmed/12573371.
\3\ https://www.ncbi.nlm.nih.gov/pubmed/28437534.
\4\ https://jamanetwork.com/journals/jamapsychiatry/fullarticle/
2469106.
\5\ https://www.ncbi.nlm.nih.gov/pubmed/16481639.
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Consider the following:
Today, ten million American children are bereaved, with two million
having lost a parent \6\ and a projected eight million having
lost a sibling.\7\ These uniquely devastating losses alter the
lifetime success of these youth. Nearly 90 percent of detained
youth have experienced the death of a close loved one and 25
percent subsequently joined a gang.\8\ Research studies have
found that ``bereaved children experience lower self-esteem,
reduced resilience, lower grades and more school failures,
heightened risk of depression, suicide attempts, suicide, and
premature death due to any cause, drug abuse, violent crime
involvement, youth delinquency, and a greater number of, and
more severe, psychiatric difficulties.'' \9\
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\6\ https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3471209.
\7\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302726/.
\8\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4577059/.
\9\ Layne, C. M., & Kaplow, J. B. (2020). Assessing bereavement and
grief disorders. In E. A. Youngstrom, M. J. Prinstein, E. J. Mash, & R.
A. Barkley (Eds.), Assessment of Disorders in Childhood and Adolescence
(5th ed., pp. 471-508). New York: Guilford Press.
If this does not cause alarm and encourage leadership, what will?
These few statistics demonstrate that our nation's Federal health
agencies should actively work to stem the individual and societal costs
of bereavement. The cost of inaction is incalculable.
Our request, a no-cost appropriation, will achieve three goals: (1)
continue LHHS' leadership in advancing America's health, (2) reveal
what, if anything, is being done by our Federal health agencies to
advance bereavement care and (3) alert leadership that bereavement
itself poses great risks to our society and should rank within future
priority activities. To that end, our research indicates that some
agency policies may be inflicting additional harm, including additional
trauma, on the newly bereaved.
In March 2020, we worked with the U.S. House of Representatives to
advance appropriations report language that would require key Federal
health agencies to report to Congress what activities, if any, they are
conducting to advance bereavement care for Americans. This is the first
time in history Federal health agencies will be asked to report
bereavement-related activities.
In an effort to ensure parity across legislative chambers, our hope
is that this subcommittee will adopt the same report language that the
House advanced. The House-endorsed report language is as follows:
``State of Bereavement Care.--The Committee is aware of research
indicating that individuals and families suffer severe health,
social, and economic declines following the death of a loved
one--be it a child, sibling, spouse, or parent. The Committee
encourages OMH, ACF, CDC, CMS, HRSA, IHS, NIH, SAMHSA, and SSA
to examine its involvement in activities to advance bereavement
care for families, including documenting and investigating the
policies or programs that help or hinder functional coping or
adaptive processing and the prevalence and outcome of
bereavement events (what relationships are impacted, how the
loved one died and their age, risk factors and associated
health events or outcomes, and biological or physiological
changes in well-being).''
federal agency rationale and context
Bereavement and its unintended outcomes are inextricably linked to
many of our Federal health agencies missions, priorities, and programs.
Outlined below is a brief rationale as to why we suggest each of the
following Federal agencies; however, we are happy to provide more
robust explanations upon request:
ACF.--Given bereavement's alarming prevalence and outcomes among
children, understanding how ACF integrates, if at all, bereavement care
into their programs is imperative. Facilitating functional coping and
adaptive processing among these children following the death of a loved
one may help stem or reduce other health and human services
expenditures, as well as alter the trajectory, independence, and
individual success of these children.
CDC.--CDC's National Center for Health Statistics (NCHS) collects
mortality events, but not who survives them or what outcomes survivors'
experience. Bereavement itself is an ``injurious'' event threatening
family health, wellbeing, and economic solvency. Scientific evidence
finds that bereaved parents, as a result of their loss, experience
cardiac events,\10\ immune dysfunction,\11\ depressive symptoms, poorer
well-being, less purpose in life, more health complications, marital
disruption,\12\ psychiatric hospitalization,\13\ a slight increase in
cancer incidence \14\ as well as premature death for mothers and
fathers as early as age 40.\15\
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\10\ https://www.ncbi.nlm.nih.gov/pubmed/12270855.
\11\ https://psycnet.apa.org/record/1992-05615-001.
\12\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841012/.
\13\ https://www.nejm.org/doi/full/10.1056/NEJMoa033160.
\14\ https://acsjournals.onlinelibrary.wiley.com/doi/pdf/10.1002/
cncr.10943.
\15\ https://www.ncbi.nlm.nih.gov/pubmed/12573371.
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CDC is one the nation's most trusted sources of data and evidence
on population and public health. Given the growing evidence base about
the profound long-lasting effects of bereavement on individuals and
community health, bereavement (as a marker of risk) and quality
bereavement care should be a top priority for CDC. The country needs
consistent and reliable data on the prevalence and sequelae of
bereavement on which to formulate sound policy and practice. These data
will also be important as the CDC begins plans for the next decade of
Healthy People 2030.
CMS.--As the purveyor of Medicare and Medicaid benefits, it touches
the lives of millions of Americans at high-risk of experiencing
bereavement. Although bereavement counseling is a required Medicare
benefit for up to 1 year of hospice participants, it is not eligible
for stand-alone reimbursement. Reimbursement rates are not linked to
counseling quality, and researchers have found that there are few, if
any, financial incentives for hospice to ensure quality care.\16\ These
constitute real barriers to bereaved families' ability to function and
cope with a death. As the primary funder of hospice benefits, CMS
should ensure that the quality of services rendered meet sound
professional standards, including incorporating standard quality
assurance and improvement practices and a research evidence base. With
$1.2 trillion taxpayer investment, it is imperative that we understand
CMS benefit coverage, quality, uptake, and reimbursement rationale.
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\16\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374048/.
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HRSA.--HRSA's core demographics, footprint and the health risk
profiles of its participants, make it a prime candidate for helping us
to understand bereavement offerings and how their programs help (or
hinder) an individuals' ability to cope and productively return to the
workforce.
IHS.--Millions of American Indians and Alaska Natives (AI/NA)
experience both a higher portion of disease prevalence and a reduced
life expectancy, when compared to their fellow Americans. As a result,
AI/AN experience death at younger ages, thus compounding their social
and health hardships. Requesting current bereavement-related activities
will help elucidate to what extent, if any, IHS is facilitating
functional coping and adaptive processing among this high-risk
population.
NIH.--In 2016, NIH aligned mortality and prevalence data to its
spending categories to link its research priorities and our nation's
public health needs. Because NIH extracts data from CDC and NCHS (and
CDC does not collect those bereaved by mortality events) bereavement
does not rank in NIH's 292 top disease conditions or research
priorities. However, with a $33 billion budget authority, undoubtedly
NIH is conducting useful research as it relates, directly or
indirectly, on bereavement care, function, coping, statistics or
outcomes. The potency of bereavement as a highly prevalent and
impactful stressor capable of altering lifelong developmental
trajectories underscores how critical these endeavors are to shaping
programs, resources, and driving innovation to meet our pressing public
health needs.
OMH.--Black Americans are at higher risk of losing a child, spouse,
sibling or parent throughout the lifespan when compared to their white
counterparts.\17\ As a result of these unique stressors, black
Americans face greater adversity and cumulative disadvantage.\18\ OMH
should play a leadership role in understanding bereavement's
implications to advance the wellbeing of minority Americans and reduce
gaps in health disparities and inequities.
---------------------------------------------------------------------------
\17\ https://www.ncbi.nlm.nih.gov/pubmed/28115712.
\18\ https://journals.sagepub.com/doi/abs/10.1177/0022146517739317.
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SAMHSA.--Substance abuse and mental health distress play a central
role in an individual's ability to cope, productively contribute to the
workforce and maintain stability following the death of a loved one.
Although it has made major strides in addressing childhood trauma,
today, none of SAMHSA's five hotlines or three directories of services
include care for the bereaved. SAMHSA should examine its current
offerings and determine how bereavement integrates into their existing
priorities and programs.
SSA.--SSA offers programs to the bereaved, but many of them are not
being utilized or have not been updated for decades. Consider, only 45
percent of bereaved children access Social Security benefits following
the death of a parent, thus leaving them at greater risk of poverty,
academic failures and use of other social programs.\19\ Further, the
lump sum death benefit (LSDB) program offers $255 to bereaved
individuals to help subsidize the high cost of funerals (estimates
range from $7,000 to $12,000). LSBD has not been updated since
1954.\20\ SSA's programs, data and policies warrant examination.
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\19\ https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3471209.
\20\ https://fas.org/sgp/crs/misc/R43637.pdf.
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Thank you for the opportunity to present this testimony on behalf
of bereaved Americans.
[This statement was submitted by Joyal Mulheron, Founder &
Executive Director, Evermore.]
______
Prepared Statement of the Families and Friends of Care Facility
Residents
Chairman Blunt, Ranking Member Murray and Committee Members,
Thank you for the opportunity to submit testimony. Thank you for
your public service.
interest and request of ff-cfr
I am the mother and guardian of John Farrar Sherman, aged 51, who
functions on the level of a young toddler. I submit this testimony in
behalf of Arkansas' statewide parent-guardian association, Families &
Friends of Care Facility Residents (FF-CFR), a 501 (c)3 organization
which was formed by my late husband and other concerned families in
1991 in support of Arkansans with life-long permanent disabilities.
Most, but not all, members of FF-CFR have loved ones with disabilities
receiving residential treatment services in one of Arkansas' five human
development centers which are Medicaid-certified intermediate care
facilities (ICFs).
FF-CFR is not requesting Federal funds. Rather, we request relief
from the use of funds by Department of Health and Human Services to
undermine and eliminate intermediate care facilities (ICFs), the
specialized long-term care facilities for persons with cognitive and
other developmental disabilities.
false narrative: national trend to close institutions
Our families watch with concern as states consolidate/downsize and
close public and private intermediate care facilities (ICFs), the
Medicaid certified congregate care programs designed to address the
urgent care needs of persons with cognitive and other life-long
developmental disabilities. A false narrative is being promoted that
all persons with disabilities thrive in small-less-regulated-care
programs and also that deinstitutionalization from licensed facilities
is a ``national trend.'' We submit that vulnerable persons are dying
horrific deaths when they are barred from appropriate care in licensed
facilities. We submit that the so-called ``national trend'' of
deinstitutionalization has been: (1) created and encouraged by
Department of Health and Human Services programs and policies which
destructively promote one needed program (``community'' care) over
another needed program (``institutional'' care); (2) fueled by Federal
dollars; and (3) encouraged by insufficient oversight of Federal
programs, policies and funds being used to weaken and eliminate the ICF
option. Finally, the ``national trend'' of deinstitutionalization has
been promoted by federally funded advocacy organizations and programs
which do not represent our family members with disabilities and their
peers, individuals living with life-long profound or severe cognitive
deficits and other developmental disabilities, most of whom are
nonverbal and who are unable to self-advocate.
mortality of vulnerable persons
Do you read stories in the media of horrific deaths of persons
unable to care for themselves? I do. And each time I read a story about
the awful death of such an at-risk individual, that person is not
faceless to me. He or she has a family; they are someone's daughter or
son/sister or brother. When I read such stories, I have these thoughts:
without me and without my state's specialized residential treatment
programs, my son could be the subject of such an article.
Attached hereto are summaries of two stories which were published
recently in our statewide paper. See FF-CFR Attachment 1. Through the
Internet, one can download the full reports. Here is the reality about
me reading the stories: yes, I see my son and his peers in them, but I
also know from my years of advocacy work that the two states where
these two individuals died their lonely horrible deaths are states
which have closed admissions to the ICF program. In the states where
these deaths occurred, qualified persons are denied admission to the
specialized residential treatment programs for persons with cognitive
and other developmental disabilities.
There is a connection between the work of the LHHS subcommittee,
the funding of Department of Health and Human Services programs and
grants, and the policies which have led to states closing admissions to
ICF programs.
request
We respectfully request your consideration for report language in
the fiscal year 2021 LHHS spending bill barring Federal funds from
incentivizing states to close their specialized facilities for persons
unable to care for themselves. Suggested Language Attached hereto, FF-
CFR Attachment 2.
Respectfully submitted.
[This statement was submitted by Carole L. Sherman, Families &
Friends of Care Facility Residents.]
______
Prepared Statement of the Family Planning Coalition
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
The undersigned organizations collectively represent millions of
providers, patients, administrators, researchers, public health
professionals, and advocates who support access to high-quality family
planning services. Established 50 years ago, the Title X family
planning program helps ensure that millions of individuals can obtain
high-quality sexual and reproductive healthcare. We are deeply
concerned by the administration's continued attacks on the integrity of
the Title X program, including the devastating program rule that the
Department of Health and Human Services finalized in 2019.\1\ Today,
more than 1.5 million Title X patients no longer have access to the
Title X-funded services at the site they used in 2018 due to the rule.
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\1\ Department of Health and Human Services. Final Rule.
``Compliance with Statutory Program Integrity Requirements.'' Federal
Register 84 (March 4, 2019): 7714-7791.
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We urge you to use the fiscal year 2021 Labor, Health and Human
Services, Education, and Related Agencies appropriations bill to make a
strong statement in support of high-quality, evidence-based, and
patient-centered family planning care and against the Title X program
rule. We request that you include language to block the rule and to
allow existing and former networks to rebuild and begin to reverse the
damage caused by the rule. With that language in place, we urge you to
appropriate $400 million for the program.
title x is a critical source of care
In 2018, Title X helped close to 4 million people access family
planning and related health services at nearly 4,000 health centers.\2\
More than half of users identified as people of color.\3\ For many
individuals, particularly those who have low incomes, are under- or
uninsured, or are adolescents, Title X has been their main access point
to obtain affordable and confidential contraception, cancer screenings,
sexually transmitted disease testing and treatment, complete and
medically accurate information about their family planning options, and
other basic care. In fact, a study found that in 2016, six in ten women
seeking contraceptive services at a Title X health center saw no other
healthcare provider that year.\4\
---------------------------------------------------------------------------
\2\ Christina Fowler et al, ``Family Planning Annual Report: 2018
National Summary,'' RTI International (August 2019). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
summary.pdf.
\3\ Id. This calculation includes persons who identify as non-white
and persons who identify as white and Hispanic.
\4\ Megan Kavanaugh, Mia Zolna, and Kristen Burke, ``Use of Health
Insurance Among Clients Seeking Contraceptive Services at Title X-
Funded Facilities in 2016,'' Perspectives on Sexual and Reproductive
Health 50.3 (September 2018). https://onlinelibrary.wiley.com/doi/full/
10.1363/psrh.12061.
---------------------------------------------------------------------------
The data show that Title X makes a difference for patients. In
2016, Title X-supported contraceptive services helped patients prevent
an estimated 755,000 pregnancies.\5\ Title X also supports important
health center efforts that are not reimbursable under insurance,
including staff training and community-based sexual and reproductive
health education programs. Moreover, research has shown that Title X-
supported services saved the Federal and state governments
approximately $4.4 billion in 2016,\6\ and 75 percent of American
adults-including 66 percent of Republicans, 75 percent of Independents,
and 84 percent of Democrats-support the program.\7\
---------------------------------------------------------------------------
\5\ Jennifer Frost et al, ``Publicly Supported Family Planning in
the United States: Likely Need, Availability and Impact, 2016,''
Guttmacher Institute (October 2019). https://www.guttmacher.org/report/
publicly-funded-contraceptive-services-us-clinics-2015.
\6\ Rachel Benson Gold, Adam Sonfield, ``Title X Family Planning
Services: Impactful but at Severe Risk,'' Guttmacher Institute (October
2019). https://www.guttmacher.org/article/2019/10/title-x-family-
planning-services-impactful-severe-risk.
\7\ Survey Says: Birth Control Support. The National Campaign to
Prevent Teen and Unplanned Pregnancy (2017). https://
thenationalcampaign.org/resource/survey-says-january-2017.
---------------------------------------------------------------------------
Title X's key role in the public health safety net has been
threatened by the Trump administration's 2019 program rule. Following
rule implementation in July 2019, 18 grantees, along with many
subrecipients, left the program rather than comply with the onerous,
medically unnecessary requirements. In 2018, the approximately 1,000
sites run by those entities served more than 1.5 million patients,
including the many patients served by Planned Parenthood. Health
centers that remained in the program face the challenge of implementing
a misguided rule while attempting to keep their doors open and services
available to, and affordable for, patients.
To rectify this situation, we urge Congress to include language in
the fiscal year 2021 Labor-HHS bill that blocks implementation of the
rule and allows entities that left the program to rejoin it. It is
crucial that remaining and previous grantees be able to rebuild their
networks and trusted services once the rule is no longer in place.
These steps are critical to ensure that people across the country
regain access to affordable services at their preferred family planning
provider.
title x is severely underfunded
In addition to the challenges posed by the Title X rule, the
program is unable to serve as many patients as need care due to woeful
underfunding. In 2016, researchers from the Centers for Disease Control
and Prevention, the Office of Population Affairs, and George Washington
University estimated that Title X would need $737 million annually to
deliver family planning care to all uninsured women with low incomes in
the United States.\8\ This estimate understates the true need for Title
X, as it does not include an estimate of costs for men (who made up 13
percent of patients in the network in 2018),\9\ gender non-binary
persons, and the insured patients who rely on Title X's confidentiality
protections.
---------------------------------------------------------------------------
\8\ Euna August, et al, ``Projecting the Unmet Need and Costs for
Contraception Services After the Affordable Care Act,'' American
Journal of Public Health (February 2016): 334-341.
\9\ Fowler, ``FPAR 2018.''
---------------------------------------------------------------------------
The gap between the funds appropriated and the funds needed has
only grown in recent years. From 2010 to 2016 the number of women in
need of publicly funded family planning services increased by 1.5
million,\10\ but Congress cut Title X's funding by $31 million over
that period. That decrease unfortunately corresponded to dramatic
decreases in patients served at Title X-funded sites, from 5.22 million
seen in 2010 \11\ to just under 4 million seen in 2018.\12\
---------------------------------------------------------------------------
\10\ Frost, ``Publicly Supported Family Planning Services in the
United States.''
\11\ Christina Fowler et al, ``Family Planning Annual Report: 2010
National Summary,'' RTI International (September 2011). https://
www.hhs.gov/opa/sites/default/files/fpar-2010-national-summary.pdf.
\12\ Fowler, ``FPAR 2018.''
---------------------------------------------------------------------------
We are deeply concerned about diminishing access to high-quality
family planning services and urge Congress to take an initial step to
reverse this devastating trend by appropriating $400 million for Title
X in fiscal year 2021. This funding increase, however, must be paired
with the language referenced above, and we urge you to prioritize
blocking the 2019 rule and creating the pathway for entities to reenter
the program.
title x is more important than ever due to covid-19
The need for the Title X program and network of providers it funds
is even more critical as the novel coronavirus affects communities
across the country. Family planning and sexual health services are
often time-sensitive, and the need for these services does not stop
during a pandemic. In fact, recent public opinion polling shows that a
majority of U.S. adults (65 percent) think now is a bad time for
individuals and couples to try to get pregnant, and only 5 percent of
adults would consider it ``less essential'' for individuals to have
access to birth control during the coronavirus pandemic.\13\ Now more
than ever, the Title X provider network, already struggling in the wake
of years of attacks and chronic underfunding, needs the robust support
of Congress to continue to provide high-quality family planning and
sexual health services.
---------------------------------------------------------------------------
\13\ Morning Consult, on behalf of the National Family Planning &
Reproductive Health Association (NFPRHA), conducted a poll using a
national sample of 2,200 US adults, between April 30--May 2, 2020. The
interviews were conducted online, and the data were weighted to
approximate a target sample of US adults based on age, educational
attainment, gender, race, and region. Results from the full survey have
a margin of error of +/-2 percent.
---------------------------------------------------------------------------
Furthermore, family planning staffing has been impacted at health
centers due in some instances to employees being redeployed to COVID-19
response and because of the individual toll the pandemic has taken on
staff, including short-term and long-term absences because employees
need to tend to health and family issues. Staffing issues coupled with
decreased patient visits and the likelihood that states will need to
cut family planning funding in future budgets to help backfill COVID-19
expenditures means that current public funding for safety-net health
centers is simply not enough. Access to essential services depends on
health centers receiving sufficient funds to remain open and
programmatic rules that allow expert providers to offer the best
possible care.
**********************************
During the fiscal year 2021 appropriations process, Congress has
the opportunity to stand against relentless attacks on family planning
and support strong public funding for the Title X family planning
network. The undersigned organizations urge you to begin the expansion
of family planning and related healthcare services with this critical
language and meaningful investment in Title X.
If you have any questions or would like additional information,
please contact Lauren Weiss at the National Family Planning &
Reproductive Health Association at [email protected].
Thank you for considering these requests.
Sincerely,
Abortion Care Network
ACLU
AIDS Action Baltimore
AIDS Alabama
AIDS Alliance for Women, Infants, Children, Youth & Families
AIDS Foundation of Chicago
AIDS United
Alliance for Justice
American Academy of Pediatrics
American Atheists
American College of Nurse-Midwives
American College of Obstetricians and Gynecologists
American Medical Student Association
American Public Health Association
American Sexual Health Association
American Society for Reproductive Medicine
Association of Nurses in AIDS Care
Association of Schools and Programs of Public Health
Association of Women's Health, Obstetric and Neonatal Nurses
Black AIDS Institute
Black Women's Health Imperative
Cascade AIDS Project
Catholics for Choice
Center for American Progress
Center for Reproductive Rights
Endocrine Society
Equality California
Equality North Carolina
Equity Forward
Girls Inc.
Guttmacher Institute
Hadassah, The Women's Zionist Organization of America, Inc.
Healthy Teen Network
HIV Medicine Association
Human Rights Campaign
If/When/How: Lawyering for Reproductive Justice
In Our Own Voice: National Black Women's Reproductive Justice Agenda
Ipas
Jacobs Institute of Women's Health
Jewish Women International
NARAL Pro-Choice America
NASTAD
National Abortion Federation
National Asian Pacific American Women's Forum (NAPAWF)
National Association of County and City Health Officials
National Coalition of STD Directors
National Council of Jewish Women
National Family Planning & Reproductive Health Association
National Hispanic Medical Association
National Institute for Reproductive Health (NIRH)
National Latina Institute for Reproductive Health
National Medical Association
National Network of Abortion Funds
National Organization for Women
National Partnership for Women & Families
National Women's Health Network
National Women's Law Center
North Carolina AIDS Action Network
Nurses for Sexual and Reproductive Health
Ovarian Cancer Research Alliance
PAI
People For the American Way
Physicians for Reproductive Health
Planned Parenthood Federation of America
Population Connection Action Fund
Population Institute
Power to Decide
Raising Women's Voices for the Health Care We Need
Religious Coalition for Reproductive Choice
Reproductive Health Access Project
Ryan White Medical Providers Coalition
San Francisco AIDS Foundation
SIECUS: Sex Ed for Social Change
Silver State Equality-Nevada
Society for Adolescent Health and Medicine
Southern AIDS Coalition
The AIDS Institute
The Well Project
Treatment Action Group
Union for Reform Judaism
Women of Reform Judaism
______
Prepared Statement of the Federal AIDS Policy Partnership's Research
Working Group
On behalf of the Federal AIDS Policy Partnership's Research Working
Group, we thank Chairman Senator Blunt, Ranking Member Senator Murray,
and members of the Committee for the opportunity to submit testimony to
the Senate LHHS Subcommittee on fiscal year 2021 Appropriations for the
National Institutes of Health (NIH) in regards to protecting,
strengthening, and expanding our nation's HIV/AIDS research agenda. The
Research Work Group (RWG) of the Federal AIDS Policy Partnership (FAPP)
is a coalition of more than 60 national and local HIV/AIDS research
advocates, patients, clinicians and scientists from across the country.
Our goal is to advance and support U.S. leadership to accelerate
progress in the field of HIV/AIDS research. The FAPP RWG urges the
subcommittee to recommend a fiscal year 2021 budget request level of at
least $44.7 billion for the NIH, and ask that at least $3.502 billion
be allocated for HIV research at the NIH in fiscal year 2021.
Public 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, particularly for people living with, or vulnerable to, HIV.
NIH funded AIDS research has supported innovative basic science for
better drug therapies, and evidence-based behavioral and biomedical
prevention interventions which have saved and improved the lives of
millions. NIH funding has contributed to over 210 approvals for a range
of novel therapeutics between 2010 through 2016, with new anti-
infectives for HIV and HCV receiving the second largest fraction of
those approvals. Additionally, NIH support was crucial in the
development of pre-exposure prophylaxis (PrEP), an HIV prevention tool
that is upwards of 99 percent effective in preventing sexual
transmission. Now more than ever, NIH-supported HIV research is
critical to advancement of possible treatments and a vaccine to counter
the rising COVID-19 pandemic.
HIV research advances at the NIH hold the potential to end the AIDS
epidemic, as well as update prevention approaches and improve outcomes
along the treatment cascade--a cornerstone of the Trump
Administration's initiative to End the HIV Epidemic in the U.S. In
addition, the average age of people living with HIV in the United
States is increasing, so it also remains critically important to make
substantial investments in research on co-morbidities and new
antiretroviral therapies. This aging population needs to stay healthy
and virally suppressed in order to bring community viral load to zero.
Federal support for HIV/AIDS research has cross-benefits for new
treatments for other diseases, including cancer, heart disease,
Alzheimer's, hepatitis, osteoporosis, and a wide range of autoimmune
disorders. Several HIV/AIDS treatments, notably lopinavir/ritonavir,
have been researched as treatments for the novel coronavirus (SARS-CoV-
2)--saving months of research time and, in the process, potentially
countless lives. Coronavirus vaccine research is now ongoing using
platforms and technology, such as Ad26, previously developed for use as
an HIV vaccine. These cross-disease benefits of HIV research provide
tremendous value in the dollars invested and necessary infrastructure
to support our nation's response to this emerging public health crisis.
Yet, the Administration's fiscal year 2021 budget proposal ignores
these significant contributions made by NIH and the need for a strong
HIV/AIDS research agenda in the End the HIV Epidemic initiative with
deep cuts in funding made to the Office of AIDS Research (OAR) that
places current studies, including for a vaccine and a cure for HIV, in
peril. These cuts also have a collateral effect by undermining existing
research infrastructure to develop tools needed to counter COVID-19,
which were made possible through historical and sustained investments
to HIV research.
The fiscal year 2021 President's Budget request for the NIH HIV
research program at OAR is $2,812 billion, a decrease of $263 million
compared to fiscal year 2020 levels. The proposal includes substantial
cuts (see table below) to HIV research into prevention, cure, and HIV
aging research. Scientific progress on cure and vaccine research
remains steady and iterative, and cutting research funding at this
juncture will only lengthen the time horizons or completely impede
these studies from realizing the potential of these investments. To
truly achieve an end to the HIV epidemic, we need a vaccine and cure
alongside our current slate of therapeutics and prevention modalities.
To support a science-based agenda for COVID-19, we must continue to
strengthen HIV research. In sum, these cuts would do harm to the HIV
research agenda, the health of people living with HIV, and the prospect
of new tools to combat COVID-19 in which HIV research infrastructure is
being relied upon. We urge the subcommittee to reject these cuts.
Furthermore, since 2003, funding for NIH HIV research 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--despite increases to the overall NIH budget. According to the
Biomedical Research and Development Price Index (BRDI)--which
calculates how much the NIH budget must change each year to maintain
purchasing power--between fiscal year 2003 and fiscal year 2017, the
NIH budget in constant dollars according to BRDI will have declined by
more than a third. The cuts proposed in the President's budget would
only further widen the gap.
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. Now is the time to increase
investment for the NIH to finish the job and end the HIV epidemic
through strategic, science-based interventions. NIH funding of HIV/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 HIV/AIDS research add value by seeding ideas later taken up in
industry partnerships and creating innovation incubators for important
medical advances with significant health impact.
Robust funding for NIH overall enables research universities to
pursue scientific opportunity, advance public health, and create jobs
and economic growth. NIH funding puts approximately 300,000 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.
The race to find better treatments and a cure for cancer,
Alzheimer's, heart disease, HIV/AIDS, and other diseases, and for
controlling global epidemics like AIDS, tuberculosis, coronavirus, 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. Congress should ensure the nation does not
delay vital HIV/AIDS research progress. We must protect HIV/AIDS
research funding to sustain research capacity and maintain our
worldwide leadership in HIV/AIDS research and innovation.
To that end, we urge the subcommittee to consider a needed increase
to the overall fiscal year 2021 budget request level of at least $44.7
billion for the National Institutes of Health (NIH) consistent with the
request of the Ad Hoc Group for Medical Research. While this increase
gets us closer to meeting the recent Trans-NIH AIDS Research By-Pass
Budget Estimate for fiscal year 2020, we ask the committee that at
least $3.502 billion be allocated for HIV research at the NIH in fiscal
year 2021, an increase of $426 million. We also urge the subcommittee
to consider approaches to ensure the HIV research budget receives
increases alongside other important and intersecting biomedical
research at NIH. The fiscal year 2021 President's Budget request
includes reallocation of $6 million in existing Centers for AIDS
Research (CFAR) funding to support this initiative. We believe that
CFARs are suited well to reach this goal, but funding must be new
funding for this initiative to succeed. We urge the subcommittee to
direct specific and increased CFAR funding for this purpose.
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
2021. This is especially critical in a time where science is needed to
counter the escalating COVID-19 pandemic. A meaningful commitment
towards maintaining the U.S. pre-eminence in HIV 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 that are needed to end the HIV epidemic here and abroad.
Thank you for the opportunity to provide these written comments.
______
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 $44.7 billion in fiscal year
2021 for the National Institutes of Health (NIH).
The NIH is the nation's largest funder of biomedical research,
providing competitive grants to support the work of 300,000 scientists
at universities, medical centers, independent research institutions,
and companies nationwide.
Congress has renewed its commitment to this critical research
agency, providing robust, sustained, and predictable budget increases
over the last five fiscal years (Figure 1). With these resources, NIH
has accelerated progress across all areas of medical science, including
regenerative medicine, cancer immunotherapy, and neurological
health.\1,2,3\ The agency has also expanded its commitment to support
more of the best and brightest young scientists, the next generation of
our biomedical research enterprise.\4\
\1\ NIH Regenerative Medicine Innovation Project, National
Institutes of Health, Bethesda, MD.
\2\ NCI's Role in Immunotherapy Research, National Cancer
Institute, Bethesda, MD.
\3\ The BRAIN Initiative Summary, National Institutes of Health,
Bethesda, MD.
\4\ NIH Grants and Funding, Next Generation Research Initiative,
National Institutes of Health, Bethesda, MD.
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Though the NIH is in a stronger position than it was just a few
years ago, Congress must continue to increase biomedical research
funding because our nation and the world are confronting daunting
public health threats, especially given a changing global climate. More
research will be needed to address increased risks posed by infectious
diseases and greater exposure to environmental pollutants.\5\
---------------------------------------------------------------------------
\5\ IPCC AR5 Climate Change 2014, Chapter 11: Human Health:
Impacts, Adaptation, and Co-Benefits.
---------------------------------------------------------------------------
In the U.S., we also must address the needs of an aging population.
NIH-supported research is developing therapies and cures for the whole
spectrum of age-related disorders.\6\
---------------------------------------------------------------------------
\6\ Aging Well in the 21st Century: Strategic Directions for
Research on Aging, National Institute on Aging, Bethesda, MD.
---------------------------------------------------------------------------
The great challenges of a changing climate and our aging population
will require us to expand our robust investment in biomedical research.
A $44.7 billion budget ($3 billion above fiscal year 2020) would allow
NIH to continue its commitment to the Next Generation Researchers
Initiative; provide $404 million already authorized through the 21st
Century Cures Act for key research initiatives; and provide a 3 percent
budget increase across NIH Institutes and Centers, allowing them to
bolster research areas in need of resources.
______
Prepared Statement of the Federation of Associations in
Behavioral and Brain Sciences
The Federation of Associations in Behavioral and Brain Sciences
(FABBS) represents 26 scientific societies and nearly 70 university
departments whose scientific members and faculty share a commitment to
advancing knowledge in the sciences of mind, brain, and behavior.
Through research in these sciences, FABBS members increase
understanding of the human element of the most pressing challenges
facing society, improving the health and education of our citizens.
FABBS appreciates the opportunity to submit testimony in support of the
Federal agencies investing in behavioral and cognitive science. For
fiscal year 2021, FABBS encourages your subcommittee to provide the
National Institutes of Health (NIH) with a budget of at least $44.7
billion, the National Center for Health Statistics (NCHS) within the
Center for Disease Control, a budget of at least $189 million, the
Agency for Healthcare Research and Quality (AHRQ) at $471 million, and
the Institute of Education Sciences (IES) within the Department of
Education a budget of $670 million.
During this unprecedented time, FABBS members are actively working
to help mitigate the extensive damage of the COVID-19 pandemic.
Behavioral and brain scientists are conducting research on strategies
to reduce transmission of the virus such as hand washing and restraint
from touching one's face; identifying interventions to support mental
health and recovery from addiction; developing decisionmaking tools for
response actions; and adjusting to online learning for students. These
efforts are contributing to the Federal and local responses. In many
cases, prior federally-sponsored research at NIH, NCHS, AHRQ and IES
has helped create the expertise and capabilities essential during the
global pandemic. We thank the subcommittee for its role in providing
supplemental appropriations to fight the pandemic including the funds
provided to the NIH.
FABBS would like to thank this subcommittee for their strong
bipartisan vision and diligence last year. The community is extremely
grateful that this subcommittee successfully completed a final Labor,
Health and Human Services, Education budget for fiscal year 2020,
sparing these agencies from experiencing an extended government
shutdown. We very much hope that we will see similar success funding
these agencies for fiscal year 2021.
national institutes of health
We sincerely thank the Labor HHS Appropriations Subcommittee for
its diligent work and considerable increases to NIH over the past 4
years. As members of the Ad Hoc Group for Medical Research and the
Coalition for Health Funding, FABBS recommends at least $44.7 billion
for NIH in fiscal year 2021. FABBS members contribute to the NIH
mission of seeking fundamental knowledge about the behavior of living
systems and the application of that knowledge to enhance health,
lengthen life, and reduce illness and disability. FABBS members
contribute to the advances in numerous institutes and centers.
FABBS members have a particular interest in the Office of
Behavioral and Social Science Research (OBSSR). OBSSR was created to
coordinate and promote basic, clinical, and translational behavioral
and social science research at NIH. The office serves an essential
function in enhancing trans-NIH investments in longitudinal datasets,
technology in support of behavior change, innovative research
methodologies, and promoting the inclusion of behavioral science in
initiatives at the NIH Institutes and Centers (IC). In partnership with
other Institutes and Centers, OBSSR co-funds highly rated grants that
the ICs cannot fund alone, and coordinates NIH's high-priority program
on gun violence prevention research.
While the NIH budget has grown in recent years, funding for OBSSR
has not seen commensurate increases. We recognize that, located in the
Office of the Director, OBSSR does not have a specific appropriation.
Nonetheless, FABBS appreciates the opportunity to express support for
OBSSR, underscore its key role supporting the mission of NIH, and raise
concerns about recent flat funding.
National Center for Health Statistics (NCHS), Center for Disease
Control--As members of the Friends of NCHS, FABBS urges the
Subcommittee to appropriate $189 million (an increase of $14.6 million
and realignment of $14 million in ongoing transfers) to NCHS in fiscal
year 2021. This increase would restore the NCHS budget to the fiscal
year 2010 funding level (adjusted for inflation) enabling NCHS to
continue to produce its essential existing surveys and reports without
interruption. Communities across the country rely on the high-quality
data provided by NCHS to understand and improve health. We greatly
appreciate the Subcommittee's longstanding support of NCHS and the data
it produces on all aspects of our healthcare system, such as opioid and
prescription drug use, healthcare disparities, and causes of death.
agency for healthcare research and quality (ahrq)
Consistent with the Friends of AHRQ, FABBS requests $471 million
for AHRQ in fiscal year 2021. AHRQ is the only Federal agency that
funds research at universities and other research institutions
throughout the nation on health systems--the ``real-life'' patient who
has complex comorbidities, the interoperability of different
technological advances, and the interactions and intersections of
healthcare providers.
Institute of Education Sciences (IES), U.S. Department of
Education.--As members of the Friends of IES, FABBS encourages the
subcommittee to appropriate at least $670 million to IES in fiscal year
2021. This funding level would restore IES to the fiscal year 2011 real
dollar purchasing power level. IES is a semi-independent, nonpartisan
branch of the U.S. Department of Education and is the research
foundation for improving and evaluating teaching and learning. The four
centers--the National Center for Education Statistics (NCES), National
Center for Education Research (NCER), National Center for Special
Education Research (NCSER) and National Center for Education Evaluation
(NCEE)--work collaboratively to efficiently and comprehensively produce
and disseminate rigorous research and high-quality data and statistics.
Thank you for the opportunity to express support for the following
fiscal year 2021 budget requests:
--National Institutes of Health at least $44.7 billion
--National Center for Health Statistics at least $189 million
--Agency for Healthcare Research and Quality at least $471 million
--Institute of Education Sciences at least $670 million
These investments to strengthen behavioral and cognitive research
are critical to the health and education of our citizens. Thank you for
considering this request.
FABBS Member Societies:
Academy of Behavioral Medical Research, American Educational
Research Association, American Psychological Association, American
Psychosomatic Society, Association for Applied Psychophysiology and
Biofeedback, Association for Behavior, Analysis, Behavior Genetics
Association, Cognitive Neuroscience Society, Cognitive Science Society,
International Society for Developmental Psychobiology, Massachusetts
Neuropsychological Society, National Academy of Neuropsychology, The
Psychonomic Society, Society for Behavioral Neuroendocrinology, Society
for Computers in Psychology, Society for Judgement and Decision Making,
Society for Mathematical Psychology, Society for Psychophysiological
Research, Society for the Psychological Study of Social Issues, Society
for Research in Child Development, Society for Research in
Psychopathology, Society for the Scientific Study of Reading, Society
for Text & Discourse, Society of Experimental Social Psychology,
Society of Multivariate Experimental Psychology, Vision Sciences
Society
FABBS Affiliates:
APA Division 1: The Society for General Psychology; APA Division 3:
Experimental Psychology; APA Division 7: Developmental Psychology; APA
Division 28: Psychopharmacology and Substance Abuse; Arizona State
University; Binghamton University; Boston University; California State
University, Fullerton; Carnegie Mellon University; Columbia University;
Cornell University; Duke University; East Tennessee State University;
Florida International University; Florida State University; George
Mason University; George Washington University; Georgetown University;
Georgia Institute of Technology; Harvard University; Indiana University
Bloomington; Indiana University--Purdue University Indianapolis; Johns
Hopkins University; Kent State University; Lehigh University;
Massachusetts Institute of Technology; Michigan State University; New
York University; North Carolina State University; Northeastern
University; Northwestern University; The Ohio State University, Center
for Cognitive and Brain Sciences; Pennsylvania State University;
Princeton University; Purdue University; Rice University; Southern
Methodist University; Stanford University; Syracuse University; Temple
University; Texas A&M University; Tulane University; University of
Arizona; University of California, Berkeley; University of California,
Davis; University of California, Irvine; University of California, Los
Angeles; University of California, Riverside; University of California,
San Diego; University of Chicago; University of Colorado, Boulder;
University of Delaware; University of Houston; University of Illinois
at Urbana-Champaign; University of Iowa; University of Maryland,
College Park; University of Massachusetts Amherst; University of
Michigan; University of Minnesota; University of Minnesota, Institute
of Child Development; University of North Carolina at Greensboro;
University of Pennsylvania; University of Texas at Austin; University
of Texas at Dallas; University of Washington; Vanderbilt University;
Virginia Tech; Wake Forest University; Washington University in St.
Louis; Yale University
[This statement was submitted by Juliane Baron, Executive Director,
Federation of Associations in Behavioral and Brain Sciences.]
______
Prepared Statement of Florida A&M University
Chairmen Shelby and Blunt, Vice Chairman Leahy, Ranking Member
Murray, and Members of the Labor, Health and Human Services, and
Education, and Related Agencies Subcommittee, thank you for the
opportunity to submit public testimony on the subcommittee's fiscal
year 2021 appropriations bill. Florida A&M University (FAMU) supports
maintaining or enhancing funding at the fiscal year 2020 enacted level
for programs of interest to the University and our students, including
the Department of Education's Historically Black Colleges and
Universities (HBCU) programs, the HBCU Capital Financing Program, and
the Federal Pell Grants program. FAMU also supports two programs at the
Department of Health and Human Services--the National Institutes of
Health's Research Centers in Minority Institutions and the Health
Resources and Services Administration's Health Careers Opportunity
Program. These Federal programs provide critical support to the
University, our students as well as other institutions of higher
education and the nation.
Florida A&M University, based in the State capitol of Tallahassee,
Florida, was founded in 1887 with only 15 students and two instructors.
Today, FAMU has grown to nearly 10,000 students and we are proud to be
the highest ranked among public Historically Black Colleges and
Universities (HBCU) according to the U.S. News and World Report
National Public Universities. Our University offers 56 bachelor's
degrees, 29 master's degrees, 12 doctoral degrees and three
professional degrees. We are a leading land-grant research institution
with an increased focus on science, technology, research, engineering,
agriculture, and mathematics. As noted by Diverse Issues, FAMU is a top
producer of African American doctoral degrees in pharmacy and
pharmaceutical sciences.
Federal support is critical for institutions of higher education,
particularly HBCUs, which are historically under-resourced. Robust
Federal funding for programs that help to improve our institutions,
broaden access for students, and improve student success is paramount.
The Department of Education HBCU programs help us achieve these goals
and the Federal Pell Grant program is an imperative resource for our
students as the majority of our students are Pell-eligible.
Furthermore, the Department of Health and Human Services' research and
career development programs that support minority students also benefit
FAMU, our students, and the nation. FAMU strongly supports funding for
these vital Federal programs.
Department of Education Historically Black Colleges and Universities
Programs
FAMU strongly supports robust funding for the Department of
Education HBCU programs under the Higher Education, Aid for
Institutional Development Programs account. These programs, authorized
under Title III of the Higher Education Act, provide critical support
to higher education institutions that enroll large proportions of
minority and financially disadvantaged students. One of the primary
missions of the Title III programs has been to support the nation's
HBCUs. The Strengthening Historically Black Colleges and Universities
program and the Historically Black Graduate Institutions program
provide FAMU and other HBCUs with formula grants to help strengthen our
academic, administrative, and fiscal capabilities.
The President's fiscal year 2021 budget requests $324.8 million for
the Strengthening Historically Black Colleges and Universities program.
These formula grants provide critical support to HBCUs that help to
improve our facilities, develop faculty, support academic programs,
strengthen institutional management, enhance our development and
recruitment activities, and provide tutoring and counseling services to
students. In fiscal year 2019, FAMU received $7 million under the
program.
We also support the President's fiscal year 2021 budget request of
$84 million for the Strengthening Historically Black Graduate
Institutions, which funds five-year grants to provide for scholarships
for disadvantaged students, academic and counseling services to improve
student success, and supports infrastructure and facilities
improvements. FAMU received $3.8 million under the current five-year
grant period for this program.
FAMU, like other HBCUs, has a critical need for funding to support
equipment upgrades and purchases, construction and renovation of our
facilities, and development of our academic programs. This includes a
wide variety of projects to strengthen the University and its programs,
such as expansion of our online education offerings to enhance pathways
to degree attainment, upgrading our information technology
infrastructure, construction of laboratories, research and education
facilities, and upgrading our health sciences and technology equipment
and facilities. Continued funding for these HBCU programs and other Aid
for Institutional Development programs is essential to postsecondary
institutions, like FAMU, that educate the nation's minority students.
Department of Education Historically Black Colleges and Universities
Capital Financing Program
FAMU supports maintaining the fiscal year 2020 enacted level of
$46.848 million for the Department of Education's HBCU Capital
Financing Program, which provides low-cost capital to finance
improvements to the infrastructure of the nation's HBCUs. Specifically,
the program provides accredited HBCUs with access to capital financing
or refinancing for the repair, renovation, and construction of
classrooms, libraries, laboratories, dormitories, instructional
equipment, and research instrumentation.
FAMU, like other HBCUs, has a critical need to upgrade and
rehabilitate our aging facilities. This program makes capital available
for HBCUs to improve our academic facilities, which will enhance the
learning experience for our students. The $46.484 million requested for
fiscal year 2021 will be used to pay the loan subsidy costs in
guaranteed loan authority under the program. The President's fiscal
year 2021 budget only proposes $40.848 million for the program. FAMU
urges to the Subcommittee to reject the President's proposal and
provide the current level of funding for fiscal year 2021, which will
allow HBCUs to continue to refinance previous capital project loans,
renovate existing facilities, or build new facilities to improve our
institutions.
Department of Education Pell Grant Program
FAMU supports robust funding for the Pell Grant program under the
Department of Education's Student Financial Assistance account. The
Federal Pell Grant program, authorized by Title IV of the Higher
Education Act, is the largest source of Federal grant aid supporting
college students. The Pell Grant Program provides need-based grants to
low-income undergraduate students to promote access to postsecondary
education.
For 2017-2018, there were 5,543 Pell Grant recipients attending
FAMU, amounting to $27.7 million in Pell Grant awards. More than half
of our enrolled students rely on Pell grants to attend our institution.
Given the ongoing coronavirus crisis, which will have devastating
impacts on the economy for the foreseeable future, we expect that our
current and prospective students will be dependent on financial
assistance, including Pell Grants, in order to continue pursuing their
postsecondary education goals.
The President's fiscal year 2021 budget requests level funding of
$22.475 billion for Discretionary Pell Grants. For fiscal year 2020,
Congress increased the maximum award by $150, to $6,345 in academic
year 2020-2021. FAMU would encourage Congress to double the total
maximum Pell grant award in fiscal year 2021 to provide critical
support for economically disadvantaged college students during this
particularly challenging time.
National Institutes of Health Research Centers in Minority Institutions
FAMU supports funding at the fiscal year 2020 enacted level of $75
million for the NIH National Institute on Minority Health and Health
Disparities (NIMHD), Research Centers in Minority Institutions (RCMI)
Program. The RCMI Program, established in 1985, supports critical
infrastructure development and scientific discovery in historically
minority graduate and health professional schools. The program serves
the dual purpose of bringing more racial and ethnic minority scientists
into mainstream research and promoting minority health research because
many of the investigators at RCMI institutions study diseases that
disproportionately affect minority populations.
Over the five-year period of 2013-2018, FAMU was awarded $13.7
million under the RCMI Program to support drug discovery and research
aimed at better understanding of the makeup and risks associated with
various degenerative diseases and their treatment. In the area of drug
discovery, the grant aids in developing new drugs that can be used for
the treatment of neurodegenerative diseases such as Parkinson's;
stroke; cancer (breast, prostate and lung); and emerging infectious
diseases to uncover targets for therapy and translational research.
Since 1985, FAMU has received RCMI support in excess of $54
million, which has helped to fund construction for the research wing of
the College of Pharmacy and make laboratory improvements. It has
provided critical infrastructure to enable the College to achieve
national prominence and become a competitive biomedical research center
nationally. Since the inception of the RCMI Program at FAMU, the
College has implemented four doctoral tracks in pharmaceutical
sciences. With concentrations in pharmacology/toxicology, medicinal
chemistry, pharmaceutics and environmental toxicology, our College of
Pharmacy has graduated more than 60 percent of the African American
doctoral recipients in the pharmaceutical sciences nationally.
The President's fiscal year 2021 budget cuts funding for the RCMI
Program to $68.25 million. The RCMI Program develops and strengthens
the research infrastructure necessary to conduct state-of-the-art
biomedical research and foster the next generation of researchers from
underrepresented populations. FAMU requests $75 million, the fiscal
year 2020 enacted level, for this program to allow NIH to continue
supporting this important work.
Department of Health and Human Services, Health Resources and Services
Administration (HRSA), Health Careers Opportunity Program
FAMU supports the fiscal year 2020 enacted level of $15 million for
HRSA's Health Careers Opportunity Program (HCOP). First authorized in
1972, the HCOP competitive grant program aims to provide individuals
from disadvantaged backgrounds an opportunity to develop the skills
needed to successfully compete for, enter, and graduate from health or
allied health professions schools. HCOP focuses on three key milestones
of education: high school completion; acceptance, retention and
graduation from college; and acceptance, retention and completion of a
health professions degree program. The ultimate goal of the HCOP
program is to diversify the health professions workforce by narrowing
the educational achievement gaps between individuals from higher-income
and lower-income households.
The Health Careers Opportunity Program (HCOP) High School Summer
Institute, conducted on FAMU's campus, is designed for high school
students interested in pursuing a career in a health profession. The
four-week program provides a wide-range of educational and social
experiences for rising 10th, 11th and 12th grade students. The entire
experience is designed to enhance participants' academic abilities,
social skills, and other competencies to increase their competitiveness
for admission to a post-secondary health professions program.
The President's fiscal year 2021 budget eliminates funding for
HRSA's Health Workforce, Training for Diversity Programs, including the
HCOP. Continued funding is critical for these programs that help to
increase the supply of underrepresented minorities in health
professions.
We urge the Subcommittee to support continued and/or enhanced
funding at the fiscal year 2020 level for these critical education
programs at the Departments of Education and Health and Human Services.
We thank you for your continued support of Federal postsecondary
initiatives that not only directly benefit the University and our
students, but the region and the nation as well. Thank you for your
consideration.
[This statement was submitted by Larry Robinson, Ph.D., President,
Florida A&M University.]
______
Prepared Statement of the Fred Hutchinson Cancer Research Center
The Fred Hutchinson Cancer Research Center (Fred Hutch) is grateful
to Congress for providing robust, reliable funding for the National
Institutes of Health (NIH), a key national priority. The nation's
investment in NIH research pays a lifetime of dividends in better
health and improved quality of life for all Americans. In fiscal year
2021, Fred Hutch recommends at least $44.7 billion for the NIH. This
funding level would continue the momentum of recent increases by
enabling meaningful base budget growth above inflation, while ensuring
that the NIH Innovation Account supplements the agency's base budget,
as intended, through dedicated funding for specific programs.
Through the strong, bipartisan action of this Subcommittee's
leaders, Chairman Roy Blunt and Ranking Member Patty Murray, Congress
is helping the agency regain lost ground after years of effectively
flat budgets. Once more, in the fiscal year 2020 minibus bill, the
Subcommittee's leadership ensured continued progress by providing a
substantial increase to all NIH institutes and centers.
The Federal investment in biomedical research has yielded a
significant number of scientific advances. These advances create
economic opportunity as new companies emerge to translate novel
research into cures and therapeutics to improve health outcomes for
patients. NIH funding enables Fred Hutch to redefine what is possible
across the full spectrum of biomedical research. Fred Hutch is
committed to working with Congress and the Administration to further
bipartisan support for increasing Federal investment in biomedical
science and ensuring NIH remains a top priority in fiscal year 2021 and
beyond.
about fred hutch
Fred Hutchinson Cancer Research Center, founded in 1975, is
designated by the National Cancer Institute (NCI) as a Comprehensive
Cancer Center with the mission to eliminate cancer and related diseases
as causes of human suffering and death. Fred Hutch's interdisciplinary
team of world-renowned scientists and humanitarians work together to
prevent, diagnose, and treat cancer, HIV/AIDS, and other diseases. Our
Nobel Prize winning discoveries began in the 1970s with Dr. E. Donnall
Thomas' work in bone marrow transplantation, providing the first
definitive and reproducible example of the power of the human immune
system's ability to cure cancer.
Fred Hutch scientists remain at the vanguard, from the development
of innovative treatments and cures for cancer and HIV, to analysis and
modeling of emerging pandemics like the novel coronavirus, COVID-19. In
addition to paving the way for groundbreaking discoveries in science,
Fred Hutch invests in the next generation of researchers through
initiatives that embrace diversity and inclusion in team-science,
promote women in the scientific enterprise, and empower early career
researchers. Below are some examples of how NIH funding drives Fred
Hutch innovation and helps shape future generations of scientists.
--Advancing Breakthrough Cures and Discoveries. Fred Hutch is leading
the way in developing cures for a wide variety of cancers and
other diseases. Recent examples include:
--Harnessing the Immune System to Kill Cancer. Fred Hutch
researchers continue to lead new breakthroughs in
immunotherapy, including discoveries leveraging
nanotechnologies that attach to and shrink tumors, and
using a failed Alzheimer's drug to help boost CAR-T cell
therapy for cancer patients.
--Exploring a Clever Way to Make an AIDS Vaccine. Fred Hutch
researchers have developed a new strategy to counter the
frustrating ability of HIV to sidestep vaccines designed to
block it by luring out extremely rare immune cells in the
human body with genetic bait.
--Boosting Cancer Clinical Trial Participation. Fred Hutch
researchers offer new solutions to low clinical trial
participation, such as loosening strict comorbidity
criteria in order to open trials to thousands of previously
exempt patients.
--Tracking the COVID-19 pandemic. Genomic analysis and modeling of
COVID-19 by Fred Hutch researchers has helped officials
from a local to international level anticipate viral spread
and provide scientific guidance as policymakers consider
appropriate public health mitigation measures. Researchers
are also contributing expertise to studies for the first-
in-human vaccine trials and pursuing assays for serologic
testing.
--Embracing Diversity and Inclusion in a Team-Science World. Fred
Hutch was the first U.S. Cancer Center to commit to the CEO
Action for Diversity & Inclusion pledge, and its Office of
Diversity, Equity and Inclusion focuses on integrating these
efforts as a core value and practice that will catalyze the
mission of eliminating cancer and related disease.
--Promoting Women in Science. Fred Hutch is a leader in prioritizing
gender parity among faculty members and promoting women in
science. Women scientists lead four of the five scientific
divisions and hold 12 of 25 endowed faculty chairs at the
center.
--Empowering Early Career Researchers. Fred Hutch is dedicated to
empowering the next generation of researchers. The Center
invests more than $2 million a year in a pipeline of programs
to mentor young faculty and encourage trainees from
underrepresented backgrounds, from high school to college and
graduate school to postdoctoral fellowships. These programs
have a broad reach, provide real world opportunities for young
scientists, and improves the overall quality of science.
the value of federally-funded biomedical research
The Federal Government has an irreplaceable role in supporting
biomedical and basic science research. No other public, corporate, or
charitable entity is willing or able to provide broad and sustained
funding for cutting-edge research necessary to yield new innovations
and technologies of the future. The partnership between NIH and
America's scientists and research institutions is a unique and highly-
productive relationship. By 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 biomedical innovations--and innovators--we will deliver
better treatments and cures to patients.
As an independent research institute with a sole mission to pursue
lifesaving discoveries, Fred Hutch depends on NIH funding to focus on
basic, translational, clinical, public health, and infectious disease
research, and to respond quickly to the research needs of the country.
In addition to supporting robust funding, Fred Hutch opposes
provisions--such as directives to reduce the salary limit for
extramural researchers--which would harm the integrity of the research
enterprise and disproportionately affect independent research
institutes. Policies to cut salary support hinder Fred Hutch's research
mission and ability to recruit and retain the talented researchers who
make U.S. institutions global leaders in advancing life-saving
biomedical sciences.
The NIH initiatives focusing on career development and recruitment
of a diverse scientific workforce are critical to innovation in
biomedical research and public health. Robust increases to the NIH
budget are critical to fostering the next generation of scientists, as
training funds work to attract the brightest minds to pursue a career
in research. Fred Hutch is committed to training the diverse group of
rising stars in science and supports NIH efforts like the Next
Generation Researchers Initiative to address challenges faced by
investigators launching their careers.
conclusion
Fred Hutch thanks the Subcommittee for its important work dedicated
to ensuring the health of the nation and for its strong support for NIH
funding in fiscal year 2021. We appreciate the opportunity to urge the
Subcommittee to provide at least $44.7 billion in fiscal year 2021 for
NIH, which is the next step toward a multi-year increase in our
nation's investment in biomedical research. Advances in bioscience,
technology, and data science have brought us to an inflection point.
This is not a time to pull back. Given the abundance of scientific
opportunity, this recommendation represents a minimum investment to
sustain progress that only would be amplified through an even more
robust commitment.
______
Prepared Statement of Friends of the Health Resources and
Services Administration Coalition
The Friends of HRSA coalition is a nonpartisan coalition of nearly
170 national organizations representing tens of millions of public
health and healthcare professionals, academicians and consumers
invested in the Health Resources and Services Administration's mission
to improve health outcomes and achieve health equity. We are pleased to
submit our request of at least $8.8 billion for the Health Resources
and Services Administration in fiscal year 2021. We strongly urge you
to reject the many proposed cuts to important HRSA programs contained
in the president's fiscal year 2021 budget proposal. These requests do
not reflect any additional resources that may be needed to address the
immediate and ongoing efforts to combat the COVID-19 pandemic. HRSA
programs are especially critical as the U.S. grapples with the COVID-19
pandemic. Adequate funding for programs that promote public health in
underserved communities, support health centers and bolster America's
public health workforce will be critical in facing the short-term and
long-term health impacts of COVID-19.
HRSA's 90-plus programs and more than 3,000 grantees support tens
of millions of geographically isolated, economically or medically
vulnerable people, in every state and U.S. territory, to achieve
improved health outcomes by increasing access to quality healthcare and
services; fostering a healthcare workforce able to address current and
emerging needs; enhance population health and address health
disparities through community partnerships; and promote transparency
and accountability within the healthcare system. The agency is a
national leader in improving the health of Americans by addressing the
supply, distribution and diversity of health professionals and
supporting training in contemporary practices, and providing high-
quality health services to populations who may otherwise not have
access to healthcare.
HRSA programs work in coordination with each other to maximize
resources and leverage efficiencies. For example, Area Health Education
Centers, a health professions training program, was originally
authorized at the same time as the National Health Service Corps to
increase the number of primary care providers at health centers and
other direct providers of healthcare services for underserved areas and
populations. AHECs play an integral role to recruit providers into
primary healthcareers, diversify the workforce and develop a passion
for service to the underserved among future providers.
HRSA's programs also work in collaboration across the Federal
Government to enhance health outcomes. For example, HRSA's HIV/AIDS
Bureau partners with the Office of the Assistant Secretary for Health,
the Centers for Disease Control and Preventions, the Substance Abuse
and Mental Health Services Administration, the Centers for Medicare and
Medicaid Services, the Indian Health Services, the National Institutes
of Health, the Agency for Healthcare Research and Quality, the
Department of House and Urban Development, the Department of Veterans
Affairs and the Department of Justice to ensure an effective use of
resources, and a coordinated and focused public health response to the
HIV epidemic. This Federal response has contributed to the number of
annual HIV infections dropping 5.6 percent between 2010 and 2016, with
HRSA's Ryan White HIV/AIDS Program serving as the foundation for
delivering healthcare and support services to reach the public health
goal of ending the HIV epidemic. Despite this success, an estimated 1.1
million people in the U.S. are living with HIV today, and nearly 38,000
become newly infected every year--1 in 7 of whom are unaware of their
infection. HRSA programs will play an integral role in achieving the
public health goal of ending the HIV epidemic.
HRSA grantees also play an active role in addressing emerging
health challenges. For example, HRSA's grantees provide outreach,
education, prevention, screening and treatment services for populations
affected by health emergencies such as the opioid epidemic. However,
much of this work required additional funding to increase capacity in
health centers, support National Health Service Corps providers to
deliver relevant care and expand rural health services. Strong,
sustained funding would allow HRSA to quickly and effectively respond
to emerging and unanticipated future health needs across the U.S.,
while continuing to address persistent health challenges.
HRSA programs and grantees are providing innovative and successful
solutions to some of the nation's greatest healthcare challenges
including the rise in maternal mortality, the severe shortage of health
professionals, the high cost of healthcare, and behavioral health
issues related to substance use disorder--including opioid misuse. We
are grateful for the increases provided for HRSA programs in the fiscal
year 2020, however HRSA's discretionary budget authority remains over
20 percent below the fiscal year 2010 level (adjusted for inflation).
We recommend Congress build upon the important increases they provided
for HRSA programs in fiscal year 2020 and provide at least $8.8 billion
for HRSA's total discretionary budget authority in fiscal year 2021.
Additional funding will allow HRSA to pave the way for new achievements
and continue supporting critical HRSA programs, including:
--Primary care programs support over 11,000 health center sites in
every state and territory, improving access to preventive and
primary care for more than 28 million people in geographic
areas with few healthcare providers. Health centers coordinate
a full spectrum of health services including medical, dental,
vision, behavioral and social services in the nation's most
underserved communities. Health centers reach 1 in 3 people
living at or below the Federal poverty line; 1 in 5 rural
residents; 1 in 5 uninsured persons; and 1 in 6 Medicaid
beneficiaries.
--Health workforce programs support the education, training,
scholarship and loan repayment of primary care physicians,
nurses, oral health professionals, optometrists, physician
assistants, nurse practitioners, clinical nurse specialists,
public health personnel, mental and behavioral health
professionals, pharmacists and other allied health providers.
With an emphasis on primary care and training in
interdisciplinary, community-based settings, these are the only
Federal programs focused on filling the gaps in the supply of
health professionals, as well as improving the geographic
distribution and diversity of the workforce.
--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 and maternal mortality, prevent
chronic conditions and improve access to quality healthcare for
mothers and babies. MCH programs help assure that nearly all
babies born in the U.S. are screened for a range of serious
genetic or metabolic diseases, and that coordinated long-term
follow-up is available for babies with a positive screen. They
also help improve early identification and coordination of care
for children with sensory disorders, autism and other
developmental disabilities. The MCH Block Grants funded 59
states and jurisdictions to provide healthcare and public
health services for an estimated 76 million people, reaching 91
percent of pregnant women, 99 percent of infants, and 54%55
percent of children nationwide.
--HIV/AIDS programs provide the largest source of Federal
discretionary funding assistance to states and communities most
severely affected by HIV/AIDS. The Ryan White HIV/AIDS Program
delivers comprehensive care, prescription drug assistance, and
support services to more than 550,000 people impacted by HIV/
AIDS. HRSA's Ryan White HIV/AIDS Program effectively engages
clients in comprehensive care and treatment, including
increasing access to HIV medication, which has resulted in 87
percent of clients achieving viral suppression, compared to
just 59 percent of all people living with HIV nationwide.
Additionally, the program provides education and training for
health professionals treating people with HIV/AIDS, and works
toward addressing the disproportionate impact of HIV/AIDS on
racial and ethnic minorities.
--Title X ensures access to a broad range of reproductive, sexual and
related preventive health services for nearly 4 million women,
men and adolescents, with priority given to low-income
individuals. Services include patient education and counseling
for family planning; provision of contraceptive methods;
cervical and breast cancer screenings; sexually transmitted
disease prevention education, testing and referral; and
pregnancy diagnosis. This program helps improve maternal and
child health outcomes and promotes healthy families.
--Rural health programs improve access to care for people living in
rural areas. The Office of Rural Health Policy serves as the
nation's primary advisor on rural policy issues, conducts and
oversees research on rural health issues and administers grants
to support healthcare delivery in rural communities. Rural
health programs are designed to support community-based disease
prevention and health promotion projects, help rural hospitals
and clinics implement new technologies and strategies and build
health system capacity in rural and frontier areas.
--Special programs include the Organ Procurement and Transplantation
Network, the National Marrow Donor Program, the C.W. Bill Young
Cell Transplantation Program and National Cord Blood Inventory.
These programs maintain and facilitate organ marrow and cord
blood donation, transplantation and research, along with
efforts to promote awareness and increase organ donation rates.
Special programs also include the Poison Control Program, the
nation's primary defense against injury and death from
poisoning for over 50 years. Poison control centers contribute
to significantly decreasing a patient's length of stay in a
hospital and save the healthcare system over $1.8 billion per
year, including $662.8 million saved by the Federal Government
each year in medical and productivity costs.
Our recommendation is based on the need to continue improving the
health of Americans and to provide HRSA with the resources needed to
pave the way for new achievements. We urge you to consider HRSA's
central role in strengthening the nation's health and advise you to
adopt our fiscal year 2021 request of at least $8.8 billion for HRSA's
discretionary budget authority. Thank you for the opportunity to submit
our recommendation to the subcommittee.
[This statement was submitted by Jordan Wolfe, Manager of
Government
Relations, American Public Health Association.]
______
Prepared Statement of the Friends of the Institute of Education
Sciences
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee; thank you for the opportunity to submit written testimony
on behalf of the Friends of IES, a consortium of scientific and
professional societies, research universities, and independent research
organizations interested in supporting the mission of IES and the use
of research and statistics. As Congress continues to address the
current public health and economic needs related to COVID-19, there are
ongoing education research programs and statistical infrastructure
needs that would be appropriately addressed through the regular
appropriations process. We recommend $670 million for the Institute of
Education Sciences (IES) in the fiscal year 2021 Labor, Health and
Human Services, and Education Appropriations bill.
This is a critical time to invest in education research, data, and
statistics to produce essential knowledge about teaching and learning
across all levels of education as the COVID-19 pandemic has impacted
students, parents, teachers, and school leaders in unprecedented ways.
IES has proactively worked to provide future data and evidence-based
resources, including the addition of questions to gauge the impact of
COVID-19 on National Center for Education Statistics longitudinal
surveys, a meta-analysis study being conducted to highlight effective
distance learning practices, and webinars and guidance from the
Regional Educational Laboratories.
IES is the independent and nonpartisan statistics, research, and
evaluation arm of the U.S. Department of Education charged with
supporting and disseminating rigorous scientific evidence on which to
ground education policy and practice. As such, it serves as the
critical Federal source for funding groundbreaking research in myriad
aspects of teaching and learning, as well as rigorous analysis of
educational programs and initiatives.
Its four centers--the National Center for Education Statistics
(NCES), National Center for Education Research (NCER), National Center
for Special Education Research (NCSER) and National Center for
Education Evaluation (NCEE)-work collaboratively to efficiently and
comprehensively deliver rigorous research and high-quality data and
statistics to educators, parents, and policymakers. As one example of
the need for more ongoing research, school districts are implementing
school improvement plans for their lowest performing schools under the
new framework provided under the Every Student Succeeds Act (ESSA). The
investment in IES for evidence-based resources and strategies helps
school districts make smart decisions about what plan elements will
positively impact student and school performance.
Our member organizations rely on IES to support vital research that
addresses many of the most important issues in our nation's schools--
from literacy and numeracy at the elementary level to the integration
of technology in teaching and learning, and from examining ways to
enhance career and technical education to closing achievement gaps at
every level of our educational systems. Yet, only one of every ten
grant proposals receives funding support, limiting the ability of IES
to support emerging lines of inquiry and tackle pressing questions
about education, such as what can be done support student learning,
bolster the impact of technology in the classroom, address challenges
facing rural districts, and improve literacy for adult learners.
Additional funding for IES would also support additional capacity for
communicating findings on areas of interest to teachers, including
research-based reading instruction, effective technology use, and
student engagement.
The National Center for Education Statistics (NCES) is the primary
Federal entity dedicated to collecting data related to education and is
the only principal statistical agency dedicated to this mission. NCES
compiles and disseminates important, scientifically valid data on the
condition of education that is essential to the research being
conducted across the nation. NCES also provides the funding support and
infrastructure for the Statewide Longitudinal Data Systems (SLDS),
providing critical investment for states to link K-12, postsecondary,
and workforce systems to gain a better understanding of education and
workforce outcomes. IES is also promoting the research use of SLDS to
measure the effects of interventions on long-term student outcomes.
Sufficient funding for NCES would allow for more timely collection and
dissemination of data on key indicators, including teacher salaries,
the amount of loans taken out by undergraduate students, and the
participation of students in English language learner programs.
In addition to the research supported by the National Center for
Education Research, the Regional Educational Laboratories (RELs)
conduct applied research that is directly relevant to state and
district administrators, principals and teachers. RELs also ensure that
research is shared widely through its deep dissemination networks.
Recent work across the REL network has focused on ways to address the
teacher shortage; how to increase family involvement in developing
foundational reading skills; and the relationship between teacher
qualifications and student performance in Algebra I. This work is all
driven by the state education agencies and other stakeholders in the
regions. With additional resources the RELs could produce additional
research-based materials to improve teaching and learning with
consideration given to regional context.
The National Center for Special Education Research (NCSER) is the
only Federal agency specifically designated to develop and provide
evaluations for programs for students with disabilities Research funded
by NCSER has resulted in programs that support youth with high
functioning autism experiencing high levels of anxiety, individuals
with Down syndrome learning to read, and students with learning
disabilities studying to master math word problems. NCSER also provides
special educators and administrators research-based resources that
support the provision of a free appropriate public education and
interventions to foster self-determination in students with
disabilities as they transition into adulthood. With a budget that is
only two-thirds of the amount appropriated in 2005 and has remained
relatively flat since 2014, NCSER has been unable to fund critical
topics such as special education teacher quality and shortages, high
leverage practices, and potential linkages between students with
disabilities and enrollment in developmental education classes in
higher education.
To this end, we urge the Committee to support funding IES at $670
million in fiscal year 2021. A commitment at this level will enable IES
to more fully support research that addresses the challenges of
preparing young Americans to succeed in the knowledge-based economy
that is not only upon us now, but also the key to future American
prosperity.
[This statement was submitted by Felice J. Levine, Chair, Friends
of the Institute of Education Sciences.]
______
Prepared Statement of the Friends of National
Center for Health Statistics
The Friends of NCHS is a coalition of public health associations,
patient organizations, scientific societies, and research institutions
who rely on the information produced by the National Center for Health
Statistics (NCHS) within the Centers for Disease Control and Prevention
(CDC). In order to support NCHS's continued work to monitor the health
of the American people and to allow the agency to make much-needed
investments in the next generation of its surveys and products, the
Friends of NCHS recommend an appropriation of at least $189 million for
the agency in fiscal year 2021. Our recommendation reflects an increase
to NCHS's base budget of $14.6 million from its fiscal year 2020
appropriation, as well as the formalization of an ongoing $14 million
transfer from Surveillance, Epidemiology, and Informatics as proposed
in the President's fiscal year 2021 Budget Request. We urge the
Subcommittee to reject the Administration's proposed $5.4 million cut
to the agency, which would have a devastating impact on NCHS's ability
to continue to provide timely, unbiased, and accurate data on
Americans' health. It is important to note that the enclosed request is
for NCHS's baseline budget for fiscal year 2021 and, without
supplemental funding, will not be sufficient in making the agency and
its programs whole once the pandemic subsides and Federal agencies
return to regular activity.
The coalition greatly appreciates the Subcommittee's longstanding
support of NCHS and the data it produces on all aspects of our
healthcare system. We also thank the Subcommittee for the prominent
inclusion of NCHS within the $50 million Public Health Data
Surveillance/IT Systems Modernization initiative in the fiscal year
2021 appropriations agreement. As the CDC's leadership determines how
to allocate this new funding, we ask that the Subcommittee exercise its
oversight authority over this initiative to ensure that NCHS receives
sufficient funding to invest in innovation as directed by the
Explanatory Statement.
Investing in the agency now will allow NCHS to put its expertise to
transformative use to create a true twenty-first century statistical
agency and reaffirm NCHS's status as the world's gold-standard producer
of health statistics. With additional funding, NCHS could capitalize on
advances in survey methodology, big data, and computing by:
--Building platforms that better integrate electronic health records
(EHRs) into NCHS's data production by standardizing data from
the major EHR vendors.
--Determining how best to achieve efficiencies among its hallmark
population health surveys (the National Health Interview Survey
and the National Health and Nutrition Examination Survey),
making them less costly to taxpayers and less burdensome on
participants.
--Supporting states as they modernize their vital records
registration systems by ensuring they have the flexibility to
collect information on new and rapidly-changing causes of
death, such as emerging infectious diseases, deaths due to
natural disasters, and drug overdoses, as well as collecting
geocoded information to better measure the spread of disease in
real time.
--Linking and integrating data reporting systems to receive and
process information more efficiently, reduce burden on local
data providers, and analyze and release statistics faster.
--Upgrading its computing technology and capacity to protect the
confidentiality and security of NCHS's data while improving
speed and quality.
--Expanding its use of machine learning and artificial intelligence
to spot trends in Americans' health earlier. These technologies
could allow NCHS to automate the coding of deaths of high
public health interest such as drug overdose deaths, emerging
infectious diseases, deaths due to natural disasters, and
infant and maternal deaths, which are currently coded manually.
--Improving external users' access to public and restricted NCHS data
by enhancing data visualization and usability and piloting the
use of remote access to restricted NCHS data files.
Even under a tightly constrained budget, NCHS has pioneered
innovative new techniques to get the most value out of every taxpayer
dollar. Over the past several years, NCHS has closed the gap between
data collection and publication for leading causes of death, resumed
official estimates of maternal mortality after over a decade,
implemented literal text analysis to identify the drugs most frequently
involved in overdose deaths, and executed a redesign of the Health
Interview Survey to reduce the burden on respondents. Yet, these
achievements only serve to highlight how far additional investment in
NCHS would go towards helping the agency rise to the challenges it
faces.
We thank you again for your continued support of NCHS's essential
data and statistics and encourage to you make sustained investments in
how we measure our nation's health. We urge you to support a funding
level of at least $189 million for NCHS in fiscal year 2021. Please do
not hesitate to contact me should you require additional information.
[This statement was submitted by Julia Milton, Chair, Friends of
NCHS, Director of Public Affairs, Consortium of Social Science
Associations.]
______
Prepared Statement of the Friends of the National
Institute on Drug Abuse
Thank you for the opportunity to submit testimony in support of the
National Institute on Drug Abuse (NIDA). The Friends of the National
Institute on Drug Abuse is a coalition working with about 150 scholarly
organizations with a total membership of at least 2 million scholars,
clinicians and educators who are committed to eliminating drug abuse in
society. We coordinate the opinions of the participating organizations,
who also actively participate on their own to provide important
information to policy makers to make decisions that will lead to the
elimination of this disease which now is killing so many of our
citizens. For example, former research which led to the creation of
drugs such as naloxone and buprenorphine has provided important
mechanisms which have prevented the death rate from being even much
higher. We need more research in all areas of basic and clinical
science to make additional advances.
In the fiscal year 2021 Labor-HHS Appropriations bill, we request
that the subcommittee provide at least $3 billion above the fiscal year
2020 level for the National Institutes of Health (NIH), and within that
amount a proportionate increase for the National Institute on Drug
Abuse (NIDA) using the Institute's conferenced level of $1,462,016,000
as NIDA's base budget for Fiscal 2021. In addition, within the NIH
total, we request at least $500 million for targeted research on opioid
misuse and addiction, development of opioid alternatives, pain
management, and addiction treatment, of which at least $250 million is
allocated to NIDA and included in its base budget for Fiscal 2021. We
also respectfully request the inclusion of the following NIDA specific
report language.
Opioid Initiative. The Committee continues to be extremely
concerned about the epidemic of prescription opioids, heroin, and
illicit synthetic opioid use, addiction and overdose in the U.S.
Approximately 174 people die each day in this country from drug
overdose (over 100 of those are directly from opioids), making it one
of the most common causes of non-disease-related deaths for adolescents
and young adults. This crisis has been exacerbated by the availability
of illicit fentanyl and its analogs in many communities. The Committee
appreciates the important role that research plays in the various
Federal initiatives aimed at this crisis. To combat this crisis, the
bill includes at least $250,000,000 for research related to preventing
and treating opioid misuse and addiction. With additional funding for
NIDA targeted at addressing the opioid epidemic, the Institute's opioid
specific allocation should be targeted for the following areas:
development of safe and effective medications and new formulations and
combinations to treat opioid use disorders and to prevent and reverse
overdose; conduct demonstration studies to create a comprehensive care
model in communities nationwide to prevent opioid misuse, expand
treatment capacity, enhance access to overdose reversal medications,
and enhance prescriber practice; test interventions in justice system
settings to expand the uptake of medication assisted treatment and
methods to scale up these interventions for population-based impact;
and develop evidence-based strategies to integrate screening and
treatment for opioid use disorders in emergency department and primary
care settings.
Methamphetamines and Other Stimulants. The Committee is concerned
that, according to the latest data released by the Centers for Disease
Control and Prevention, the number of deaths from the drug categories
that include methamphetamine and cocaine more than doubled from 2015-
2018, leading some to refer to stimulant overdoses as the ``fourth
wave'' of the current drug addiction crisis in America following the
rise of opioid-related deaths involving prescription opioids, heroin,
and fentanyl-related substances. The Secretary has also stated that
methamphetamine is highly addictive and there are no FDA-approved
treatments for methamphetamine and other stimulant use. The Committee
continues to support NIDA's efforts to address the opioid crisis, has
provided continued funding for the HEAL Initiative, and supports NIDA's
efforts to combat the growing problem of methamphetamine and other
stimulant use and related deaths.
Barriers to Research. The Committee is concerned that restrictions
associated with Schedule I of the Controlled Substance Act effectively
limit the amount and type of research that can be conducted on certain
Schedule I drugs, especially opioids, marijuana or its component
chemicals and new synthetic drugs and analogs. At a time when we need
as much information as possible about these drugs to find antidotes for
their harmful effects, we should be lowering regulatory and other
barriers to conducting this research. The Committee directs NIDA to
provide a short report on the barriers to research that result from the
classification of drugs and compounds as Schedule I substances
including the challenges researchers face as a result of limited access
sources of marijuana including dispensary products.
Raising Awareness and Engaging the Medical Community in Drug Abuse
and Addiction Prevention and Treatment. Education is a critical
component of any effort to curb drug use and addiction, and it must
target every segment of society, including healthcare providers
(doctors, nurses, dentists, and pharmacists), patients, and families.
Medical professionals must be in the forefront of efforts to curb the
opioid crisis. The Committee continues to be pleased with the NIDAMED
initiative, targeting physicians-in-training, including medical
students and resident physicians in primary care specialties (e.g.,
internal medicine, family practice, and pediatrics). NIDA should
continue its efforts in this space, providing physicians and other
medical professionals with the tools and skills needed to incorporate
substance use and misuse screening and treatment into their clinical
practices.
Marijuana Research. The Committee is concerned that marijuana
public policies in the states (medical marijuana, recreational use,
etc.) are being changed without the benefit of scientific research to
help guide those decisions. NIDA is encouraged to continue supporting a
full range of research on the health effects of marijuana and its
components, including research to understand how marijuana policies
affect public health.
Electronic Cigarettes. The Committee understands that electronic
cigarettes (e-cigarettes) and other vaporizing equipment are
increasingly popular among adolescents, and requests that NIDA fund
research on the use and consequences of these devices. The Committee
also supports the Population Assessment of Tobacco and Health (PATH)
Study, a collaboration between NIDA and the U.S. Food and Drug
Administration (FDA) Center for Tobacco Products to help scientists
learn how and why people start using tobacco products, quit using them,
and start using them again after they have quit, as well as how
different tobacco products affect health outcomes over time.
In addition, we request the following report language within the
Office of the Director account:
The HEALthy Brain and Child Development (BCD) Study. The Committee
recognizes and supports the NIH HEALthy Brain and Child Development
Study, which will establish a large cohort of pregnant women from
regions of the country significantly affected by the opioid crisis and
follow them and their children for at least 10 years. This knowledge
will be critical to help predict and prevent some of the known impacts
of pre- and postnatal exposure to drugs or adverse environments,
including risk for future substance use, mental disorders, and other
behavioral and developmental problems. The Committee recognizes that
the BCD Study is supported in part by the NIH HEAL Initiative?, and
encourages other NIH Institutes, such as NICHD, NIMH, NHLBI, NCI,
NIAAA, NIMH, NINR, as well as the Office of the Director to support
this important study.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a financial toll on our resources.
Over the past three decades, NIDA-supported research has revolutionized
our understanding of addiction as a chronic, often-relapsing brain
disease -this new knowledge has helped to correctly emphasize the fact
that drug addiction is a serious public health issue that demands
strategic solutions.
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 in strategies to address these problems, but areas
of continuing significant concern include the recent increase in
lethalities due to heroin and synthetic fentanyl, as well as continued
abuse of prescription opioids. 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 research. However, since the number of individuals
who are 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 2021 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction deserves to
be prioritized accordingly. Thank you for your support for the National
Institute on Drug Abuse.
[This statement was submitted by William L. Dewey, Ph.D., Friends
of the
National Institute on Drug Abuse.]
______
Prepared Statement of the Friends of the National Institute on Aging
Dear Chairman Blunt, Ranking Member Murray and Members of the
Senate Appropriations Subcommittee on Labor, Health and Human Services,
and Education, and Related Agencies:
On behalf of the Friends of the National Institute on Aging
(FoNIA), we are grateful for your leadership in advancing the mission
of National Institutes of Health (NIH), and, in particular, the
research supported and conducted by the National Institute on Aging
(NIA). FoNIA is a coalition of more than 50 academic, patient-centered
and non-profit organizations supporting NIA's mission to understand the
nature of aging and the aging process, and diseases and conditions
associated with growing older in order to extend the healthy, active
years of life.
As you prepare the fiscal year 2021 appropriations legislation, we
ask that Federal resources be dedicated to sustain and enhance the
timely and promising aging research at NIA and across the National
Institutes of Health (NIH). FoNIA requests:
--$44.7 billion--a $3 billion increase--in fiscal year 2021 for total
spending at NIH, which aligns with the overall recommendation
of the Ad Hoc Group for Medical Research;
--Within this amount, an increase of least $500 million specifically
dedicated to support cross-Institute aging research at the NIH,
including but not limited to biomedical, behavioral and social
sciences aging research;
--A minimum increase of $354 million specific to research on
Alzheimer's disease and related dementias (ADRD). The NIA is
the primary Federal agency supporting and conducting
Alzheimer's disease and related dementias research.
FoNIA understands that during this time of crisis, the Senate
Appropriations Committee is working hard to stem fallout of both the
human and fiscal toll of COVID-19. We are grateful for your efforts and
urge that the Committee continues work on policies that benefit us all
in this unprecedented pandemic. We know that through determination,
sacrifice and resilience, Americans will rise to the challenge and take
the necessary steps to mitigate the fallout of this public health
emergency.
Looking to fiscal year 2021, we must continue funding investments
in aging research, including research for Alzheimer's disease and
related dementias (ADRD). The number of people ages 65 and older in the
United States is projected to more than double from 46 million today to
more than 98 million by 2060.\1\ Between 2020 and 2030 alone, the
number of older persons is projected to increase by almost 18 million
as the last of the large baby boom cohorts reaches age 65.\2\ Although
much smaller in total size, the number of people ages 85 and older is
projected to more than triple from 6 million today to nearly 20 million
by 2060.\3\
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\1\ POPULATION REFERENCE BUREAU, Population Bulletin, VOL. 70, NO.
2 (December, 2015) (www.prb.org/wp-content/uploads/2016/01/aging-us-
population-bulletin-1.pdf).
\2\ Ibid.
\3\ Ibid.
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As growing numbers of Americans live well into their 80s, aging-
related diseases and multiple chronic conditions will become an even
larger public health concern. Advancing age is the major risk faster
for a number of chronic diseases. For example, as our nation ages,
incidences of the number of persons affected by dementia are expected
to double by 2060 from around 5 million cases today to 14.9 million
cases.\4\
---------------------------------------------------------------------------
\4\ Matthews, Kevin A. et al., Racial and ethnic estimates of
Alzheimer's disease and related dementias in the United States (2015-
2060) in adults aged *65 years, Alzheimer's & Dementia: The Journal of
the Alzheimer's Association, Volume 15, Issue 1, 17--24
(2018)(www.ncbi.nlm.nih.gov/pubmed/30243772). The burden of ADRD in
2014 was an estimated 5.0 million adults aged *65 years or 1.6 percent
of the population. ADRD burden will double to 3.3 percent by 2060 when
13.9 million Americans are projected to have the disease.
---------------------------------------------------------------------------
The NIA sponsors and conducts the lion's share of Federal aging-
related research and this pioneering research contributes significantly
to the improved care and quality of life of older adults. A key NIA
priority is to translate research into better and more efficient care
through the development of effective interventions that are
disseminated to healthcare providers, patients and caregivers. These
interventions for the prevention, early detection, diagnosis and
treatment of disease will help reduce the burden of illness for older
adults and reduce the cost of care.
NIA is at the forefront of applying scientific advancements to
enhance the health of older adults, lengthen life, and reduce illness
and disability. NIA supports studies on aging through extramural and
intramural programs, focusing on aging processes, age-related diseases,
and special problems and needs of the aged. The extramural program
funds research and training at universities, hospitals, medical
centers, and other public and private organizations nationwide.
In the area of dementia, NIA supports vital research where more
scientific investigation is needed to improve AD/ADRD prevention,
diagnosis, treatment and care; basic science approaches to illuminate
neurodegenerative mechanisms/pathways; and computational/biological
systems approaches to identify, model and predict the architecture and
dynamics of the molecular interactions underlying AD/ADRD pathogenesis.
With your continued support, NIA is accelerating scientific
discoveries in aging. 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 vital work of the NIA. Continued, and
meaningful investments in the NIA will make it possible to ultimately
enhance the quality of care for older adults across the nation.
Thank you for your consideration of this funding request. Should
you need additional information, feel free to contact me at
[email protected].
Sincerely.
[This statement was submitted by Eric W. Sokol, Chair, Friends of
the National Institute on Aging.]
______
Prepared Statement of FSHD Society
Honorable Chairman Blunt, Ranking Member Murray, and distinguished
members of the Subcommittee, thank you for the opportunity to testify.
Facioscapulohumeral Disease (FSHD) is a heritable disease and one
of the most common neuromuscular disorders with a prevalence of
1:8,000.\1\ It affects 934,000 children and adults of both sexes
worldwide. FSHD is characterized by progressive loss of muscle strength
that is asymmetric and widely variable. Muscle weakness typically
starts at the face, shoulder girdle and upper arms, often progressing
to the legs, torso and other muscles. In addition to affecting muscle
it can bring with it breathing issues, hearing loss, eye problems and
cardiac arrhythmias. FSHD causes significant disability and death.
---------------------------------------------------------------------------
\1\ Deenen, J. C. W. et al. Population-based incidence and
prevalence of facioscapulohumeral dystrophy. Neurology 83, 1056-9
(2014).
---------------------------------------------------------------------------
FSHD is associated with epigenetic changes at chromosome 4q35 in
the D4Z4 DNA macrosatellite repeat array region leading to an
inappropriate gain of expression (function) of the D4Z4-embedded double
homeobox 4 (DUX4) gene.\2\ DUX4 is a transcription factor that kick
starts the embryonic genome during the 2- to 8-cell stage of
development.\3,4,5\ Ectopic expression of DUX4 in skeletal muscle leads
to muscle death. DUX4 is never expressed in 'healthy' muscle. FSHD has
had few clinical trials,\6,7,8,9,10\ and currently there is no cure or
therapeutic option available to patients. DUX4 requires and needs to
activate its direct transcriptional targets for DUX4-induced gene
aberration and muscle
toxicity.\11,12,13,14,15,16,17,18,19,20,21,22,23,24\ Blocking DUX4's
RNA or DUX4's protein ability to activate its targets has profound
therapeutic relevance.\25\
---------------------------------------------------------------------------
\2\ Wang, L. H. & Tawil, R. Facioscapulohumeral Dystrophy. Curr.
Neurol. Neurosci. Rep. 16, 66 (2016).
\3\ Hendrickson, P. G. et al. Conserved roles of mouse DUX and
human DUX4 in activating cleavage-stage genes and MERVL/HERVL
retrotransposons. Nat. Genet. 49, 925-934 (2017).
\4\ Whiddon, J. L., Langford, A. T., Wong, C.-J., Zhong, J. W. &
Tapscott, S. J. Conservation and innovation in the DUX4-family gene
network. Nat. Genet. 49, 935-940 (2017).
\5\ De Iaco, A. et al. DUX-family transcription factors regulate
zygotic genome activation in placental mammals. Nat. Genet. 49, 941-945
(2017).
\6\ Tawil, R. et al. A pilot trial of prednisone in
facioscapulohumeral muscular dystrophy. FSHDY Group. Neurology 48, 46-9
(1997).
\7\ Passerieux, E. et al. Effects of vitamin C, vitamin E, zinc
gluconate, and selenomethionine supplementation on muscle function and
oxidative stress biomarkers in patients with facioscapulohumeral
dystrophy: a double-blind randomized controlled clinical trial. Free
Radic. Biol. Med. 81, 158-69 (2015).
\8\ Kissel, J. T. et al. Randomized, double-blind, placebo-
controlled trial of albuterol in facioscapulohumeral dystrophy.
Neurology 57, 1434-40 (2001).
\9\ Elsheikh, B. H. et al. Pilot trial of diltiazem in
facioscapulohumeral muscular dystrophy. Neurology 68, 1428-9 (2007).
\10\ Wagner, K. R. et al. A phase I/II trial of MYO-029 in adult
subjects with muscular dystrophy. Ann. Neurol. 63, 561-71 (2008).
\11\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
expression in FSHD myotubes is sufficient to cause cell death and
disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
5901-14 (2015).
\12\ Sandri, M. et al. Caspase 3 expression correlates with
skeletal muscle apoptosis in Duchenne and facioscapulo human muscular
dystrophy. A potential target for pharmacological treatment? J.
Neuropathol. Exp. Neurol. 60, 302-12 (2001).
\13\ Block, G. J. et al. Wnt/b-catenin signaling suppresses DUX4
expression and prevents apoptosis of FSHD muscle cells. Hum. Mol.
Genet. 22, 4661-72 (2013).
\14\ Statland, J. M. et al. Immunohistochemical Characterization of
Facioscapulohumeral Muscular Dystrophy Muscle Biopsies. J. Neuromuscul.
Dis. 2, 291-299 (2015).
\15\ Rickard, A. M., Petek, L. M. & Miller, D. G. Endogenous DUX4
expression in FSHD myotubes is sufficient to cause cell death and
disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. 24,
5901-14 (2015).
\16\ Kowaljow, V. et al. The DUX4 gene at the FSHD1A locus encodes
a pro-apoptotic protein. Neuromuscul. Disord. 17, 611-23 (2007).
\17\ Bosnakovski, D. et al. An isogenetic myoblast expression
screen identifies DUX4-mediated FSHD-associated molecular pathologies.
EMBO J. 27, 2766-79 (2008).
\18\ Wallace, L. M. et al. DUX4, a candidate gene for
facioscapulohumeral muscular dystrophy, causes p53-dependent myopathy
in vivo. Ann. Neurol. 69, 540-52 (2011).
\19\ Geng, L. N. et al. DUX4 activates germline genes,
retroelements, and immune mediators: implications for
facioscapulohumeral dystrophy. Dev. Cell 22, 38-51 (2012).
\20\ Yao, Z. et al. DUX4-induced gene expression is the major
molecular signature in FSHD skeletal muscle. Hum. Mol. Genet. 23, 5342-
52 (2014).
\21\ Homma, S., Beermann, M. Lou, Boyce, F. M. & Miller, J. B.
Expression of FSHD-related DUX4-FL alters proteostasis and induces TDP-
43 aggregation. Ann. Clin. Transl. Neurol. 2, 151-66 (2015).
\22\ Jagannathan, S. et al. Model systems of DUX4 expression
recapitulate the transcriptional profile of FSHD cells. Hum. Mol.
Genet. 25, 4419-4431 (2016).
\23\ Jones, T. I. et al. Facioscapulohumeral muscular dystrophy
family studies of DUX4 expression: evidence for disease modifiers and a
quantitative model of pathogenesis. Hum. Mol. Genet. 21, 4419-30
(2012).
\24\ Campbell AE, Shadle SC, Jagannathan S, Lim JW, Resnick R,
Tawil R, van der Maarel SM, Tapscott SJ. NuRD and CAF-1-mediated
silencing of the D4Z4 array is modulated by DUX4-induced MBD3L
proteins. Elife. 2018 Mar 13;7. pii: e31023. doi: 10.7554/eLife.31023.
(2018).
\25\ Jagannathan S1,2,3, Ogata Y4, Gafken PR4, Tapscott SJ3,
Bradley RK1. Quantitative proteomics reveals key roles for post-
transcriptional gene regulation in the molecular pathology of
facioscapulohumeral muscular dystrophy. Elife. 2019 Jan 15;8. pii:
e41740. doi: 10.7554/eLife.41740. (2019).
---------------------------------------------------------------------------
NIH-supported basic research on muscle disease and muscular
dystrophy over the past 25 years has improved health outcomes. Small
molecule and genetically engineered therapies are now in the works for
FSHD and on the market for several neuromuscular diseases!
\26,27,28,29,30,31,32\ Each year, the non-profit, private and public
investment in research yields critical advances in FSHD. Together we
foster new treatments, diagnostics, and intervention strategies that
affect the health of our nation. Meticulous efforts by FSHD
researchers/clinicians working with funding from FSHD Society, the NIH
and others have brought forth significant advancements in epigenetic
diseases. FSHD is the only human disease known to be caused by the
contraction of repetitive ``junk'' DNA. The Society has funded
approximately $15 million in seed grants for research.
---------------------------------------------------------------------------
\26\ Himeda CL, Jones, et al. CRISPR/dCas9-mediated Transcriptional
Inhibition Ameliorates the Epigenetic Dysregulation at D4Z4 and
Represses DUX4-fl in FSH Muscular Dystrophy. Mol Ther. 2016
Mar;24(3):527-35. epub 2015 Nov 3. (2016).
\27\ Chen JC, King OD, Zhang Y, et al. Morpholino-mediated
Knockdown of DUX4 Toward Facioscapulohumeral Muscular Dystrophy
Therapeutics. Molecular Therapy. 2016;24(8):1405-1411. doi:10.1038/
mt.2016.1118. (2016).
\28\ Himeda CL, Jones TI, Virbasius CM, Zhu LJ, Green MR, Jones PL.
Identification of Epigenetic Regulators of DUX4-fl for Targeted Therapy
of Facioscapulohumeral Muscular Dystrophy. Mol Ther. 2018 Jul
5;26(7):1797-1807. doi: 10.1016/j.ymthe.2018.04.019. Epub 2018 Apr 26.
(2018).
\29\ Giesige CR, Wallace LM, Heller KN, Eidahl JO, Saad NY, Fowler
AM, Pyne NK, Al-Kharsan M, Rashnonejad A, Chermahini GA, Domire JS,
Mukweyi D, Garwick-Coppens SE, Guckes SM, McLaughlin KJ, Meyer K,
Rodino-Klapac LR, Harper SQ. AAV-mediated follistatin gene therapy
improves functional outcomes in the TIC-DUX4 mouse model of FSHD. JCI
Insight. 2018 Nov 15;3(22). pii: 123538. doi: 10.1172/
jci.insight.123538. (2018).
\30\ Lee JK, Bosnakovski D, Toso EA, Dinh T, Banerjee S, Bohl TE,
Shi K, Orellana K, Kyba M, Aihara H. Crystal Structure of the Double
Homeodomain of DUX4 in Complex with DNA. Cell Rep. 2018 Dec
11;25(11):2955-2962.e3. doi: 10.1016/j.celrep.2018.11.060. (2018).
\31\ Marsollier AC, Joubert R, Mariot V, Dumonceaux J. Targeting
the Polyadenylation Signal of Pre-mRNA: A New Gene Silencing Approach
for Facioscapulohumeral Dystrophy. Int J Mol Sci. 2018 May 3;19(5).
pii: E1347. doi: 10.3390/ijms19051347. Review. (2018).
\32\ Dion C, Roche S, Laberthonniere C, Broucqsault N, Mariot V,
Xue S, Gurzau AD, Nowak A, Gordon CT, Gaillard MC, El-Yazidi C, Thomas
M, Schlupp-Robaglia A, Missirian C, Malan V, Ratbi L, Sefiani A,
Wollnik B, Binetruy B, Salort Campana E, Attarian S, Bernard R, Nguyen
K, Amiel J, Dumonceaux J, Murphy JM, Dejardin J, Blewitt ME, Reversade
B, Robin JD, Magdinier F. SMCHD1 is involved in de novo methylation of
the DUX4-encoding D4Z4 macrosatellite. Nucleic Acids Res. 2019 Jan 30.
doi: 10.1093/nar/gkz005. [Epub ahead of print] (2019).
---------------------------------------------------------------------------
The FSHD scientific community listed 2020-2021 priorities as:
2020 Industry and Scientific Research Priorities
--Clinical Trials Readiness Infrastructure and Therapeutics
--Biomarkers, Direct and Surrogate
--Genetic Testing, Genetics and Epigenetics
--Imaging and Outcome Measures
--Registries and Patient Reported Outcomes
Your Subcommittee and Congress in partnership with NIH, patients
and scientists have made truly outstanding progress in understanding
and treating the nine major types of muscular dystrophy through the
Muscular Dystrophy Community Assistance, Research and Education
Amendments of 2001 (MD-CARE Act, Public Law 107-84). The Federal
advisory committee mandated by MD CARE Act, called the MDCC, along with
working groups of outside scientific experts in the field assembled the
'2015 NIH Action Plan for the Muscular Dystrophies.' It was presented
by the Director of NIH to Congress. It specifies 81 objectives, in six
sections (mechanism, screening, treatments, trial readiness, access to
care, infrastructure including workforce) in need of funding and
further development.\33\ The genetics that give rise to FSHD are so
remarkable, NIH Director Dr. Francis Collins emphasized its
significance on the front page of the New York Times, saying ``If we
were thinking of a collection of the genome's greatest hits, this
[FSHD] would go on the list.'' \34\
---------------------------------------------------------------------------
\33\ Rieff HI, Katz SI et al. The Muscular Dystrophy Coordinating
Committee Action Plan for the Muscular Dystrophies. Muscle Nerve. 2016
Mar 21. [Epub ahead of print] (2016).
\34\ 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.
---------------------------------------------------------------------------
Honorable Chairman, these advances in scientific understanding and
epidemiological surveillance come at a significant cost. Since passing
the MD CARE Act in 2001, NIH funding for FSHD has been unbalanced given
the growth in discoveries and needs to be set right.
FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH PMUSCULAR DYSTROPHY FUNDING
[Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020
--------------------------------------------------------------------------------------------------------------------------------------------------------
All MD ($ millions).......................... $56 $83 $86 $75 $75 $76 $78 $77 $79 $81 $85ea $83 $88e
FSHD ($ millions)............................ $3 $5 $6 $6 $5 $5 $7 $8 $9 $12.8 $13.7a $17 $17.7a
FSHD (percent total MD)...................... 5% 6% 7% 8% 7% 7% 9% 10% 11% 16% 16% 20% 20%
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RePORT RCDC (e=estimate, a=actual)
The NIH is the principal worldwide source of funding of research on
FSHD. Currently active projects are $16.552 million fiscal year 2021
(current actual), a 21 percent portion of the estimated $80 million
spent on all muscular dystrophies. (source: NIH Research Portfolio
Online Reporting Tools (RePORT) keyword 'FSHD or facioscapulohumeral or
landouzy-dejerine').
Without research on muscle disease, supported by the FSHD patient-
advocacy groups in concert with the NIH biomedical research funding--
families with FSHD would be living shorter, less productive, and far
less hopeful lives. Nearly 41,000 Americans have FSHD, a disease that
can cause damage to skeletal muscle, hearing, vision, breathing and
lead to death.
What we need. Viewing at the current portfolio alongside the areas
in need of bolstering in FSHD the NIH needs to fast expand its
portfolio. Specifically, NIH needs to increase funding by adding R01
and R21 style grants in areas outlined by hundreds of experts in the
DHHS NIH MD Plan. The engine of Federal research runs on the basic
building blocks of workforce training, exploratory/developmental
research grants (parent R21) and research project grants (parent R01).
NIH can issue targeted funding announcements covering FSHD. A request
for applications (RFA) on FSHD will yield results. These efforts will
help convey to FSHD patients and allied researchers that NIH encourages
more grant applications coming through its front door.
We request for fiscal year 2021, a tripling of the NIH FSHD
research portfolio to $54 million. We are very appreciative of the slow
but steady year-to-year increases and thank NIH and Congress. At this
moment in time, FSHD needs an infusion of NIH grants both submitted and
funded--investments in centers, collaborative research grants--and,
most importantly, a rapid ramp up of basic/exploratory, preclinical and
therapeutic research awards along with moderate expansion of post-
doctoral and clinical training fellowships. FSHD research calls for and
needs this additional funding in order to succeed.
Honorable Chairman, thank you again for your help and efforts.
[This statement was submitted by Daniel Paul Perez, Co-founder,
FSHD Society.]
______
Prepared Statement of the Gateway Geriatric Workforce Enhancement
Program and the Geriatrics Workforce Enhancement Program
As the Co-Project Directors of the Gateway Geriatric Workforce
Enhancement Program at Saint Louis University School of Medicine, we
are pleased to submit this joint statement for the record recommending
appropriations of at least $51 million in fiscal year 2021 to support
geriatrics workforce training under the Geriatrics Workforce
Enhancement Program (GWEP) and the Geriatric Academic Career Award
(GACA) program administered by the Health Resources and Services
Administration (HRSA). We thank you for your past support.
We would like to thank you and HRSA for providing funding for the
48 GWEP sites to develop telehealth delivery systems for providing
geriatric education, training, and services and hope that the GWEP
sites will be able to receive additional funds to expand this work
through the HEROES Act or next emergency legislation. The staff at the
GWEP sites and GACA recipients, both funded by HRSA, are playing a
major role in the COVID-19 response for the most susceptible
populations as front-line practitioners and by supporting, educating,
and training healthcare professionals, community-based partners,
caregivers, and patients. The National Association of Geriatric
Education (NAGE) conducted a survey of GWEP sites to assess how these
programs are adapting to the impact of COVID-19 and how sites could use
additional resource during the pandemic. Current adaptations include:
converting healthcare professional and community education events to
online opportunities; converting evidence-based programs to online
opportunities; creating COVID-19 training materials for clinical and
social service settings as well as community partners; implementing or
supporting implementation of telehealth; conducting community education
through media appearances/interviews; converting academic offerings to
online platforms; conducting outreach to patients to facilitate
advanced care planning; increasing outreach to older adults; and
increasing outreach to community/GWEP partners. Multiple GWEPs are
creating educational materials focused on COVID-19-related topics
including social isolation, loneliness, telehealth delivery and
training for older adults/caregivers, advance care planning, and
infection prevention. Here at Saint Louis University, we have developed
a COVID-19 webpage, begun to deliver geriatric education and services
virtually through video/phone conferencing and social media, and are
utilizing HRSA telehealth funds to develop a HIPAA-compliant telehealth
platform to expand our geriatric education and service delivery.
At this time, GWEP sites and GACA recipients are in need of
additional resources to continue and expand our COVID-related work,
including funds for technology/equipment; webpage and materials
conversion; expanding Project ECHO/telehealth; expanding community,
hospital, long term care, and community programs and education; staff
support for phone reassurance and education with patients/caregivers
including homebound older adults; rural community outreach; management
of psychosocial issues such as social isolation and loneliness, anxiety
and depression among older adults; and dementia friendly resources and
programs. We have requested $10.9 million to be included in the next
emergency package. This is separate from our fiscal year 2021 request
described below.
The most resent Notice of Funding Opportunity (NOFO) for geriatrics
funded 48 GWEP sites and one of their primary responsibilities is to
educate primary care providers in caring for older adults.
Unfortunately, each GWEP received about $100,000 less for their
programs than the first round of grants provided in 2015. Our funding
request for $51 million would allow for additional GWEP sites in rural
and underserved communities and for supplemental payments for GWEPs
that provide additional training for caregivers, including family
caregivers. This request would also include at least the cost of the
recent NOFO for 26 GACA Program awards. These two geriatrics programs
were funded at $40.7 million in fiscal year 2020.
In fiscal year 2015, HRSA combined the geriatric education programs
in Titles VII and VIII of the Public Health Service Act, including the
Geriatric Academic Career Award, as well as portions of the Alzheimer's
Disease Prevention, Education, and Outreach Program to establish the
Geriatrics Workforce Enhancement Program (GWEP). The GWEP is one of
only two Federal programs designed to develop a healthcare workforce
specifically trained to care for the complex health needs of older
Americans with the most effective and efficient methods, providing
higher quality care and saving valuable resources by reducing
unnecessary costs. As you are aware, the number of Americans ages 65
and older will double to over 98 million by 2060, creating an
imperative for policymakers to enhance the education of health
professionals to improve care of older persons and, thus decrease costs
of care.
Proven results from activities under the GWEP and its predecessor
programs include an important increase in the number of teaching
faculty with geriatrics expertise in a variety of disciplines, plus
thousands of healthcare providers and family caregivers better prepared
to support older Americans with complex chronic conditions. We
recognize that the Subcommittee faces complex decisions in a
constrained budget environment, but we believe a top priority should be
a commitment to geriatric education programs that help the nation's
health workforce better serve the rapidly increasing number of older
persons.
The nation faces a shortage of geriatrics health professionals and
direct service workers. There are not enough geriatricians, advanced
practice nurses, and other health professionals with the knowledge,
skills, and training in geriatrics to meet the needs of our rapidly
growing population of older adults and to support their family
caregivers. Too often, the result is expensive walk-in care and
inappropriate return to hospital within thirty days of discharge. We
believe that funding for GWEP-based geriatric education supports a
sustainable future for the nation's healthcare and Social Security
systems by ensuring that (a) healthcare specialists trained in
geriatric care do not become an expensive resource from which only a
select few are able to benefit and (b) direct service workers and
family caregivers are prepared to support a lower cost, independent
lifestyle for community residing elders.
In recent years, GWEPs have continued the impressive work of the
Geriatric Education Centers. Approximately half of the GWEPs provide
education for areas that are more than 50 percent rural. In the 2017-
2018 academic year, GWEPs provided gerontological education to more
than 49,000 fellows and students. Continuing education for the current
workforce is another critical part of the program's success with
212,444 faculty and practicing professionals participated in 1,564
unique continuing education courses offered by GWEP grantees during
this period. Saint Louis University and other GWEPs are partnering with
federally Qualified Health Centers to provide geriatric primary care
education and didactic training. GWEPs create opportunities for
healthcare providers in underserved and remote areas of the country to
consult with top experts in geriatric care through Interactive
Televideo (ITV), interactive teleconsults, and synchronous webcasts,
and make available thousands of hours of online geriatric education
programs.
The Gateway Geriatric Education Center at Saint Louis University
has provided education to 25,611 health professionals and 5,904 members
of the public since 2016. These health professionals have provided
screenings for geriatric problems such as frailty, sarcopenia (muscle
weakness), falls, and dementia to 9,280 older adults in all six
Congressional districts in Missouri. More than 80 percent of this
trainings and evaluation of older persons were in primary care settings
and medically underserved communities. Developed specifically for the
GWEP, the Rapid Geriatric Assessment has been computerized in multiple
health systems, including Perry County Memorial Hospital in Perryville,
Missouri, a critical access hospital in rural Perry County, and
CARESTLHealth, a federally Qualified Health Center in north St. Louis
city, Missouri. In Perry County, over 25 percent of the older adults in
the county have been screened using this assessment process. Our
screenings thus far, have identified 25.4 percent with dementia and
31.9 percent with falls. Early intervention for these conditions can
decrease medical costs. Upon identifying concerns in any of the
assessment areas, older patients are referred for other GWEP-initiated
services, to include: Cognitive Stimulation Therapy-a non-pharmacologic
intervention for persons with dementia or Exercise and Strengthening
programming. In addition, our GWEP has provided education through in-
person and on-line continuing education, through daily tweets on
Twitter (@meddocslu)-828, to date--and with 102 postings to LinkedIn
and Facebook. Our GWEP also co-produced a regional prime time
television program on aging which was viewed by 340,739 persons. The
YouTube site has had 103,200 views.
Obviously, the GWEPs are playing a major role in improving
healthcare for older adults in the United States. Multiply this by 44
(the number of existing GWEPs) and you can begin to visualize the scope
and impact of this program across the nation. It is important to note
that every GWEP is focused on meeting the needs of rural and/or
underserved populations; many serve predominantly people of color and
those who are economically challenged.
GWEP awardees have received expanded authorization to provide
family caregivers and direct service workers with instruction on
prominent issues in the care of older adults, such as Alzheimer's
Disease and other dementias, palliative care, self-care, chronic
disease self-management, falls, and maintaining independence, among
others. In Missouri, we have developed Cognitive Stimulation Therapy
(CST) aimed at enhancing functioning in persons with moderate
Alzheimer's disease. We have trained over 1200 persons to deliver this
intervention and this has led to over 500 persons with dementia
participating in this effective intervention which our research has
shown to improve cognition. Our GWEP has recently been designated by
the founders of CST as the North American CST Training Center.
HRSA has estimated that more than 50,000 paid and family caregivers
will participate in GWEP training programs. For example, the GWEP at
Saint Louis University is partnering with several Area Agencies on
Aging, the local Alzheimer's Association, a rural hospital, a rural
osteopathic school, the regional Area Health Education Centers, and
dementia-focused community care agencies to train staff and family
caregivers in assessing and supporting them through the caregiving
process. The 2016 National Academies of Sciences, Engineering, and
Medicine (NASEM) report Families Caring for an Aging America
acknowledged that training must go beyond the healthcare professions
and support family caregivers. This will improve the quality of health
outcomes while saving valuable resources in the healthcare system.
In summary, GWEPs have improved the supply, distribution,
diversity, capabilities, and quality of healthcare professionals who
care for our nation's growing older adult population, including the
underserved and minorities. They train physicians, nurses, social
workers, dentists, mental health professionals, pharmacists, and
caregivers. In some states, the GWEP is offering training to first
responders to keep elders safe in their communities. Some of the
professionals trained through GWEPs will become academicians in
geriatric medicine, dentistry, psychiatry, nursing, and allied health
professions, thereby giving additional cohorts of professionals skills
they need to properly serve older Americans. Furthermore, GWEPs create
and deliver community-based programs that provide patients, families,
and caregivers with the skills to care for older adults and improve
health outcomes, including Alzheimer's disease education. The GWEPs are
serving as change agents and helping to transform a fragmented and
outmoded system.
We ask for your continued support for geriatric programs to
adequately prepare the next generation of health professionals and care
providers for the rapidly changing and emerging needs of the growing
and aging population.
On behalf of NAGE and those who have benefitted in Missouri and
from our colleagues around the country, thank you for your thoughtful
consideration of our request for funding for GWEPs and GACAs in fiscal
year 2021. NAGE is a non-profit membership organization representing
GWEPs, Geriatric Education Centers, Centers on Aging, and other
programs that provide education and training to healthcare
professionals and others in geriatrics and gerontology.
______
Prepared Statement of GBS|CIDP Foundation International
summary of recommendations for fiscal year 2021
_______________________________________________________________________
--Provide $44.7 billion for the National Institutes of Health (NIH)
and proportional increases across its Institutes and Centers
--Continue expanding GBS research supported by NIH with proportional
funding increases for the National Institute of Neurological
Disorders and Stroke (NINDS), and the National Institute of
Allergy and Infectious Diseases (NIAID)
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the community of individuals impacted by Guillain-Barre
Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy
(CIDP), and related conditions as you work to craft the fiscal year
2021 L-HHS Appropriations Bill.
about gbs, cidp, variants, and related conditions
Guillain-Barre Syndrome
Guillain-Barre Syndrome (GBS) is an inflammatory disorder of the
peripheral nerves outside the brain and spinal cord. GBS is
characterized by the rapid onset of numbness, weakness, and often
paralysis of the legs, arms, breathing muscles, and face. Paralysis is
ascending, meaning that it travels up the limbs from fingers and toes
towards the torso. Loss of reflexes, such as the knee jerk, are usually
found. 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. 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.
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.
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. 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 chronic, with symptoms constantly waxing and waning. 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. The gradual onset of CIDP can
delay diagnosis by several months or even years, resulting in
significant nerve damage that may take several courses of treatment
before benefits are seen. The chronic nature of CIDP differentiates
long-term care from GBS patients. Adjustments inside the home may need
to be made to facilitate a return to normal life.
about the foundation
The Foundation's vision is that every person afflicted with GBS,
CIDP, or variants has convenient access to early and accurate
diagnosis, appropriate and affordable treatments, and dependable
support services.
The Foundation's mission is to improve the quality of life for
individuals and families across America affected by GBS, CIDP, and
their variants by:
--Providing a network for all patients, their caregivers and families
so that GBS or CIDP patients can depend on the Foundation for
support, and reliable up-to-date information.
--Providing public and professional educational programs worldwide
designed to heighten awareness and improve the understanding
and treatment of GBS, CIDP and variants.
--Expanding the Foundation's role in sponsoring research and engaging
in patient advocacy.
centers for disease control and prevention
CDC and the National Center for Chronic Disease Prevention and
Health Promotion (NCCDPHP) have resources that could be brought to bear
to improve public awareness and recognition of GBS, CIDP and related
conditions. The Foundation supports a meaningful increase to the
Centers for Disease Control and Prevention as well as the establishment
of a Chronic Disease Education and Awareness Program. This program
seeks to provide collaborative opportunities for chronic disease
communities such as ours that lack dedicated funding from ongoing CDC
activities. Such a mechanism allows public health experts at the CDC to
review project proposals on an annual basis and direct resources to
high impact efforts in a flexible fashion.
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. We ask that
resources continue to be used to support the important collaboration
between NIAID, NINDS and the GBS|CIDP community. This May we will be
participating in a conference with NINDS that would allow intramural
and extramural researchers to develop a roadmap that would lead
research into these conditions into the next decade, and encourage
younger investigators to apply for grants that lead to sustained
research activities. We are continuing to have conversations with the
leadership of both institutes to facilitate a robust agenda and list of
goals for the Conference. In our meetings with the leadership, we also
spoke about the possibilities of cross-institute work between NINDS and
NIAID to expand the research and understanding of the link between Zika
and GBS. While such a conference would not require additional
appropriations, the Foundation urges you to provide NIH with meaningful
funding increases to facilitate growth in the GBS, CIDP, and related
conditions research portfolio.
patient access
As we have seen from communities that currently have access to home
infusion, such as primary immunodeficiency diseases, the ability to
choose the home as the preferred site of care has tremendous benefit in
terms of health outcomes and overall convenience for patients.
Individuals with CIDP and MMN often face mobility issues as limbs
suffer nerve damage. Traveling to receive an infusion presents a
tremendous hardship to many patients and their families. This hardship
greatly affects rural patients who have to travel hundreds of miles to
major cities in order to receive treatment, which can be both
inconvenient and costly. The Foundation has seen that when there are
obstacles to receiving regular infusions, patients tend to skip
scheduled infusions, which leads to progressive disability. Many CIDP
and MMN patients have access to IVIG home infusion through private
insurance, which allows them to lead productive and active lives. When
these individuals age on to Medicare, they can face disruption in their
routine and suboptimal circumstances when managing their condition.
Further, because the body's immune system is depressed at the end of an
infusion cycle, CIDP and MMN patients face an elevated risk of
contracting illness from visiting well-traveled sites of care for
infusions. Most importantly, patients and physicians should have the
authority to choose their preferred site of care. We hope that members
of this subcommittee and Congress as a whole support legislation that
will grant our patients this important access.
The Foundation was founded 40 years ago, and the four pillars that
guide our mission are: support, education, advocacy, and research. Our
patients rely on the premier research that is carried out at the NIH to
improve the diagnosis and treatment process of these devastating
illnesses. Without appropriate funding to the NIH and CDC, my fear as a
parent of a GBS survivor and the Executive Director of the Foundation,
is that many patients will needlessly suffer. There is so much to
learn; there is no bio-marker and we do not know why the immune system
reacts to trigger these conditions. I ask the Committee to provide
$44.7 billion to the NIH with proportional increases to NIAID and NINDS
to continue the potentially lifesaving work being done for our
community, and ask for Congressional support of our initiative to
improve access to life-saving treatments.
[This statement was submitted by Lisa Butler, Executive Director,
GBS|CIDP Foundation International.]
______
Prepared Statement of Gee Kaitlin deg.
Prepared Statement of Kaitlin Gee
To the United States Subcommittee on Labor, Health and Human
Services and Education,
I am writing to you as a 29-year-old sister with a research
background supporting a biological brother formally diagnosed with
schizophrenia. I am disclosing this information because I anticipate
that the majority of the testimonies you receive will be from a
different generation, but I need you to understand that there are many
individuals in all generations diagnosed with severe mental illness
(i.e.: schizophrenia and bipolar disorder) and their families who are
impacted and are yet left without a voice or unable to speak up because
they do not have accessible resources to contact individuals in a
position to make positive change on their behalf. I assure you, these
families are struggling as they work to support a family member
diagnosed with severe mental illness often because that individual is
likely to suffer from anosognosia, which is when the diagnosed
individual is incapable of realizing they themselves are mentally ill
(as a result of said illness). Slashing funding will hurt all of these
citizens and the families and organizations supporting them. Removing
financial support for trials carried out by the NIMH will not make the
issue go away; rather, the issue will only get worse than it already is
and become more costly for the country long term than if we proactively
support--financially support--research geared towards finding a
solution for the severely mentally ill.
Over the last 7 years, it has been immensely frustrating to watch
my brother suffer the side effects as his medication regimen as his
psychiatrists rotate through the same antipsychotics repeatedly because
there are no new medications, no better medications developed or
discovered available because there's so little funding for it.
Continuing to de-fund research and drug treatment trials will result in
trapping America's most vulnerable population in what would be the
never-ending cycle of homelesness, incarceration This continued neglect
of the severely and seriously mentally ill will have a ripple effect in
the unraveling of the nation's fabric. There are family members like
myself who are struggling to support our loved ones diagnosed with
mental illnesses like schizophrenia while continuing to live what
appears as ``normal'' a life as much as possible, who will mask that
there's nothing wrong.
Increasing funding to research and drug treatment trials
surrounding severe mental illness including schizophrenia and bipolar
disorder will help the nation's experts better understand what is
working and what is not working. We learn something from each research
investigation, from each clinical trial, from each drug treatment trial
that we pursue in full. As we learn more, we get closer to finding the
solution.
The NIMH must continue to support drug treatment trials and
demonstrate itself to be a leader in advocating for its most affected,
yet neglected population. Please do the right thing on behalf of
American citizens who are unable to advocate for themselves, who you
are representing.
Thank you for accepting my testimony.
______
Prepared Statement of Geesling Deborah deg.
Prepared Statement of Deborah Geesling
My name is Deborah Geesling. I am a mother, advocate, and President
of P82 Project Restoration, a nonprofit organization focused on
supporting individuals and families who battle against serious mental
illness. My son is 28 years old and suffers with Schizophrenia and
Bipolar Disorder.
I am writing to appeal to you that the National Institute of Mental
Health should return to its core mission and prioritize our citizens
who suffer from the devastating effects of serious mental illnesses
like Schizophrenia and Bipolar Disorder. I am asking that NIMH
prioritize trials that find better drugs for these disorders. As a
parent and advocate I was horrified to learn that this has mostly been
ignored over the past few years.
How can the only agency charged with oversight of such a vulnerable
group of people abandon those who need our help the most? It is
unconscionable! According to NIMH's own research from 2017,
approximately 4.5 percent of the U.S. population has a serious mental
illness. There is no excuse as to why the other 95.5 percent cannot
figure out a way to help the 4.5 percent. Allowing them to languish in
our prisons and homeless shelters is not acceptable. Schizophrenia and
Bipolar disorder are brain illnesses. We would never accept this sort
of dereliction of duty in relation to any other disability.
May 2021 be a year of new beginnings.
Thank you.
[This statement was submitted by Deborah Geesling, President, P82
Project
Restoration.]
______
Prepared Statement of the Geriatrics Workforce Enhancement Program and
the Geriatric Academic Career Award Program
As the Co-Project Directors of the Gateway Geriatric Workforce
Enhancement Program at Saint Louis University School of Medicine, we
are pleased to submit this joint statement for the record recommending
appropriations of at least $51 million in fiscal year 2021 to support
geriatrics workforce training under the Geriatrics Workforce
Enhancement Program (GWEP) and the Geriatric Academic Career Award
(GACA) program administered by the Health Resources and Services
Administration (HRSA). We thank you for your past support.
We would like to thank you and HRSA for providing funding for the
48 GWEP sites to develop telehealth delivery systems for providing
geriatric education, training, and services and hope that the GWEP
sites will be able to receive additional funds to expand this work
through the HEROES Act or next emergency legislation. The staff at the
GWEP sites and GACA recipients, both funded by HRSA, are playing a
major role in the COVID-19 response for the most susceptible
populations as front-line practitioners and by supporting, educating,
and training healthcare professionals, community-based partners,
caregivers, and patients. The National Association of Geriatric
Education (NAGE) conducted a survey of GWEP sites to assess how these
programs are adapting to the impact of COVID-19 and how sites could use
additional resource during the pandemic. Current adaptations include:
converting healthcare professional and community education events to
online opportunities; converting evidence-based programs to online
opportunities; creating COVID-19 training materials for clinical and
social service settings as well as community partners; implementing or
supporting implementation of telehealth; conducting community education
through media appearances/interviews; converting academic offerings to
online platforms; conducting outreach to patients to facilitate
advanced care planning; increasing outreach to older adults; and
increasing outreach to community/GWEP partners. Multiple GWEPs are
creating educational materials focused on COVID-19-related topics
including social isolation, loneliness, telehealth delivery and
training for older adults/caregivers, advance care planning, and
infection prevention. Here at Saint Louis University, we have developed
a COVID-19 webpage, begun to deliver geriatric education and services
virtually through video/phone conferencing and social media, and are
utilizing HRSA telehealth funds to develop a HIPAA-compliant telehealth
platform to expand our geriatric education and service delivery.
At this time, GWEP sites and GACA recipients are in need of
additional resources to continue and expand our COVID-related work,
including funds for technology/equipment; webpage and materials
conversion; expanding Project ECHO/telehealth; expanding community,
hospital, long term care, and community programs and education; staff
support for phone reassurance and education with patients/caregivers
including homebound older adults; rural community outreach; management
of psychosocial issues such as social isolation and loneliness, anxiety
and depression among older adults; and dementia friendly resources and
programs. We have requested $10.9 million to be included in the next
emergency package. This is separate from our fiscal year 2021 request
described below.
The most resent Notice of Funding Opportunity (NOFO) for geriatrics
funded 48 GWEP sites and one of their primary responsibilities is to
educate primary care providers in caring for older adults.
Unfortunately, each GWEP received about $100,000 less for their
programs than the first round of grants provided in 2015. Our funding
request for $51 million would allow for additional GWEP sites in rural
and underserved communities and for supplemental payments for GWEPs
that provide additional training for caregivers, including family
caregivers. This request would also include at least the cost of the
recent NOFO for 26 GACA Program awards. These two geriatrics programs
were funded at $40.7 million in fiscal year 2020.
In fiscal year 2015, HRSA combined the geriatric education programs
in Titles VII and VIII of the Public Health Service Act, including the
Geriatric Academic Career Award, as well as portions of the Alzheimer's
Disease Prevention, Education, and Outreach Program to establish the
Geriatrics Workforce Enhancement Program (GWEP). The GWEP is one of
only two Federal programs designed to develop a healthcare workforce
specifically trained to care for the complex health needs of older
Americans with the most effective and efficient methods, providing
higher quality care and saving valuable resources by reducing
unnecessary costs. As you are aware, the number of Americans ages 65
and older will double to over 98 million by 2060, creating an
imperative for policymakers to enhance the education of health
professionals to improve care of older persons and, thus decrease costs
of care.
Proven results from activities under the GWEP and its predecessor
programs include an important increase in the number of teaching
faculty with geriatrics expertise in a variety of disciplines, plus
thousands of healthcare providers and family caregivers better prepared
to support older Americans with complex chronic conditions. We
recognize that the Subcommittee faces complex decisions in a
constrained budget environment, but we believe a top priority should be
a commitment to geriatric education programs that help the nation's
health workforce better serve the rapidly increasing number of older
persons.
The nation faces a shortage of geriatrics health professionals and
direct service workers. There are not enough geriatricians, advanced
practice nurses, and other health professionals with the knowledge,
skills, and training in geriatrics to meet the needs of our rapidly
growing population of older adults and to support their family
caregivers. Too often, the result is expensive walk-in care and
inappropriate return to hospital within thirty days of discharge. We
believe that funding for GWEP-based geriatric education supports a
sustainable future for the nation's healthcare and Social Security
systems by ensuring that (a) healthcare specialists trained in
geriatric care do not become an expensive resource from which only a
select few are able to benefit and (b) direct service workers and
family caregivers are prepared to support a lower cost, independent
lifestyle for community residing elders.
In recent years, GWEPs have continued the impressive work of the
Geriatric Education Centers. Approximately half of the GWEPs provide
education for areas that are more than 50 percent rural. In the 2017-
2018 academic year, GWEPs provided gerontological education to more
than 49,000 fellows and students. Continuing education for the current
workforce is another critical part of the program's success with
212,444 faculty and practicing professionals participated in 1,564
unique continuing education courses offered by GWEP grantees during
this period. Saint Louis University and other GWEPs are partnering with
federally Qualified Health Centers to provide geriatric primary care
education and didactic training. GWEPs create opportunities for
healthcare providers in underserved and remote areas of the country to
consult with top experts in geriatric care through Interactive
Televideo (ITV), interactive teleconsults, and synchronous webcasts,
and make available thousands of hours of online geriatric education
programs.
The Gateway Geriatric Education Center at Saint Louis University
has provided education to 25,611 health professionals and 5,904 members
of the public since 2016. These health professionals have provided
screenings for geriatric problems such as frailty, sarcopenia (muscle
weakness), falls, and dementia to 9,280 older adults in all six
Congressional districts in Missouri. More than 80 percent of this
trainings and evaluation of older persons were in primary care settings
and medically underserved communities. Developed specifically for the
GWEP, the Rapid Geriatric Assessment has been computerized in multiple
health systems, including Perry County Memorial Hospital in Perryville,
Missouri, a critical access hospital in rural Perry County, and
CARESTLHealth, a federally Qualified Health Center in north St. Louis
city, Missouri. In Perry County, over 25 percent of the older adults in
the county have been screened using this assessment process. Our
screenings thus far, have identified 25.4 percent with dementia and
31.9 percent with falls. Early intervention for these conditions can
decrease medical costs. Upon identifying concerns in any of the
assessment areas, older patients are referred for other GWEP-initiated
services, to include: Cognitive Stimulation Therapy--a non-
pharmacologic intervention for persons with dementia or Exercise and
Strengthening programming. In addition, our GWEP has provided education
through in-person and on-line continuing education, through daily
tweets on Twitter (@meddocslu)--828, to date--and with 102 postings to
LinkedIn and Facebook. Our GWEP also co-produced a regional prime time
television program on aging which was viewed by 340,739 persons. The
YouTube site has had 103,200 views.
Obviously, the GWEPs are playing a major role in improving
healthcare for older adults in the United States. Multiply this by 44
(the number of existing GWEPs) and you can begin to visualize the scope
and impact of this program across the nation. It is important to note
that every GWEP is focused on meeting the needs of rural and/or
underserved populations; many serve predominantly people of color and
those who are economically challenged.
GWEP awardees have received expanded authorization to provide
family caregivers and direct service workers with instruction on
prominent issues in the care of older adults, such as Alzheimer's
Disease and other dementias, palliative care, self-care, chronic
disease self-management, falls, and maintaining independence, among
others. In Missouri, we have developed Cognitive Stimulation Therapy
(CST) aimed at enhancing functioning in persons with moderate
Alzheimer's disease. We have trained over 1200 persons to deliver this
intervention and this has led to over 500 persons with dementia
participating in this effective intervention which our research has
shown to improve cognition. Our GWEP has recently been designated by
the founders of CST as the North American CST Training Center.
HRSA has estimated that more than 50,000 paid and family caregivers
will participate in GWEP training programs. For example, the GWEP at
Saint Louis University is partnering with several Area Agencies on
Aging, the local Alzheimer's Association, a rural hospital, a rural
osteopathic school, the regional Area Health Education Centers, and
dementia-focused community care agencies to train staff and family
caregivers in assessing and supporting them through the caregiving
process. The 2016 National Academies of Sciences, Engineering, and
Medicine (NASEM) report Families Caring for an Aging America
acknowledged that training must go beyond the healthcare professions
and support family caregivers. This will improve the quality of health
outcomes while saving valuable resources in the healthcare system.
In summary, GWEPs have improved the supply, distribution,
diversity, capabilities, and quality of healthcare professionals who
care for our nation's growing older adult population, including the
underserved and minorities. They train physicians, nurses, social
workers, dentists, mental health professionals, pharmacists, and
caregivers. In some states, the GWEP is offering training to first
responders to keep elders safe in their communities. Some of the
professionals trained through GWEPs will become academicians in
geriatric medicine, dentistry, psychiatry, nursing, and allied health
professions, thereby giving additional cohorts of professionals skills
they need to properly serve older Americans. Furthermore, GWEPs create
and deliver community-based programs that provide patients, families,
and caregivers with the skills to care for older adults and improve
health outcomes, including Alzheimer's disease education. The GWEPs are
serving as change agents and helping to transform a fragmented and
outmoded system.
We ask for your continued support for geriatric programs to
adequately prepare the next generation of health professionals and care
providers for the rapidly changing and emerging needs of the growing
and aging population.
On behalf of NAGE and those who have benefitted in Missouri and
from our colleagues around the country, thank you for your thoughtful
consideration of our request for funding for GWEPs and GACAs in fiscal
year 2021. NAGE is a non-profit membership organization representing
GWEPs, Geriatric Education Centers, Centers on Aging, and other
programs that provide education and training to healthcare
professionals and others in geriatrics and gerontology.
[This statement was submitted by John E. Morley, MB, BCh,
Professor, Division of Geriatric Medicine, Dept. Internal Medicine,
Saint Louis University School of Medicine, Co-Project Director, Gateway
Geriatric Workforce Enhancement Program and Marla Berg-Weger, PhD.,
LCSW, Professor, School of Social Work, Saint Louis University,
Executive Director, Gateway Geriatric Education Center; Co-Project
Director, Gateway Geriatric Workforce Enhancement Program.]
______
Prepared Statement of Giese Gayle deg.
Prepared Statement of Gayle Giese
I am the mother of an adult child with schizophrenia. I would give
anything to have a cure or at least better treatment for this awful
brain disease that often leaves its victims in jail, homeless, or
hospitalized; and destroys families. This serious brain illness is not
rare as many believe, but affects 1.1 percent of the population and
that statistic has been true since first recorded, and is basically the
same throughout the world. Its cause is primarily genetic, but is
believed to be triggered by environmental factors. Schizophrenia (and
schizoaffective disorder) robs the person of motivation, concentration,
and cognition, as well as presenting positive symptoms such as
hallucinations and delusions. The disease usually occurs in late teen
or early adult years, just when our bright and beloved children are
preparing for jobs, universities, careers, serious relationships.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
I beg you to have NIMH prioritize research for the 5 percent of our
population that has serious mental illnesses that include chronic
depression (the leading cause of disability in the U.S.), schizophrenia
(and schizoaffective disorder), and bipolar illness. This makes sense
because it's the humane thing to do, but it also makes good fiscal
smarts. The most severe mental illnesses account for the most dollars
spent in hospitals, jails, prisons, emergency rooms, and services for
the homeless.
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of
Health budget resolution in December 2019, which brings the
NIMH budget to just under $2 billion and represents a 35
percent increase since 2015, one of the largest increases in
the history of the NIMH. Yet, during the 5 years from 2015
through 2019, NIMH funded a total of TWO new drug treatment
trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from
2006 through 2010 when NIMH funded 48 such trials . . .''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses identifying examples of research initiatives the NIMH
could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans. Those with the most severe
forms of mental illness deserve to be prioritized.
Thank you for your consideration,
Sincerely.
______
Prepared Statement of Global Health Council
Global Health Council (GHC) is the leading membership organization
of nonprofits, businesses, universities, and individuals dedicated to
saving lives and improving the health of people worldwide. GHC thanks
the Subcommittee for the opportunity to share this testimony in support
of global health programs under the jurisdiction of the Departments of
Labor and Health and Human Services. For fiscal year 2021, GHC
encourages continued support for global health at a minimum of fiscal
year 2020 levels enacted by Congress. However, in order to achieve U.S.
global health goals and commitments, we ask that you support a greater
investment in global health programs for fiscal year 2021, which
includes at a minimum: $5.808 billion for the National Institute of
Allergy and Infectious Disease (NIAID), $3.45 billion for the Office of
AIDS Research, and $84.9 million for the Fogarty International Center
at the National Institutes of Health (NIH); an investment of $699.3
million for the Center for Emerging Zoonotic and Infectious Diseases
and no less than $642 million for the Center for Global Health at the
Centers for Disease Control and Prevention (CDC).
In light of the COVID-19 pandemic we must urge Congress to
appropriate funds not only to sustain America's legacy as a leader in
global health, but also to support existing programs in their continued
response to the coronavirus. Recently, Global Health Council
distributed a letter to Congressional Appropriators advocating for at
least $5 billion in global health funding to support U.S. global health
initiatives affected by the COVID-19 pandemic. It is our hope that
appropriators will consider the additional needs and negative effects
the COVID-19 pandmeic has had on global health initiatives, when making
appropriations for fiscal year 2021.
We know these programs work and have secured their place as some of
the most cost-effective, critical, and successful tools for U.S. global
health. They are an essential component of how the United States
engages with the world. By investing in global health and development,
the U.S. is continuing to build healthier and more self-reliant
communities, which ultimately become economically and politically
stable. Early in 2020, we saw programs struggle to respond to the
massive need caused by COVID-19. The pandemic exacerbated weak points
in health systems in rich and poor countries alike, ultimately
weakening the effectiveness of our own health system. It highlighted
inequalities, inefficiencies, and a sheer lack of access around the
world. We are losing ground on the progress that the United States has
already made towards building healthier and more self-reliant
communities. A failure to backstop or to ignore these investments would
roll back the critical progress already made, and eventually undermine
U.S. foreign policy and global health goals.
A robust U.S. investment has historically been the foundation for
increasingly larger contributions from corporations and low- or middle-
income countries. Without this, global health programs lose access to
alternative funding sources and technical assistance that ultimately
enable them to become self-sustaining. Further, global health
investments benefit the U.S. economy, particularly in research and
development. Approximately 89 cents of every dollar spent by the U.S.
government on global health research and development goes directly to
U.S.-based researchers and product developers. This funding creates
much-needed jobs, builds U.S. research and technological capacity--a
boon to the economy as well as the health of Americans who equally
benefit from such innovation.
We undeniably live in a global environment. Global health is
important for medical professionals here at home, too. Every year more
than 500 million people cross borders in planes, and with them the
potential for infectious diseases to enter our country, demanding more
of our health workforce. But U.S.-based providers and other responders
have the opportunity to learn from health programs abroad about how
best to tackle diseases whenever they arrive. We have an opportunity
here, to mobilize everyone involved in health, from scientists,
pharmaceutical companies, frontline workers, advocates, and
policymakers, to create a world where health threats can become a thing
of the past.
By at the very least maintaining U.S. investment in global health,
we can continue to build upon the hard work and achievements of
previous years in order to prevent the persistent global health
challenges of our time and ensure a healthy future for citizens around
the world. In our current environment, in response to COVID-19, we must
consider increasing investments in global health and development
assistance funding. We have a moral obligation to resolve the
challenges that U.S. global health programs now face in light of the
pandemic. And it is in our national interest to demonstrate that these
are essential commitments.
Thank you for your consideration of this request.
[This statement was submitted by Loyce Pace, MPH, President and
Executive
Director, Global Health Council.]
______
Prepared Statement of the Global Health Technologies Coalition
On behalf of the Global Health Technologies Coalition (GHTC), a
group of 30 nonprofit organizations, academic institutions, and aligned
businesses advancing policies to accelerate the creation of new drugs,
vaccines, diagnostics, and other tools that bring healthy lives within
reach for all people, I am providing testimony on fiscal year 2021
appropriations for the National Institutes of Health (NIH), the Centers
for Disease Control and Prevention (CDC), and the Biological Advanced
Research and Development Authority (BARDA). My testimony reflects the
needs expressed by our members working in nearly one hundred countries
to develop new and improved technologies for the world's most pressing
health issues. We appreciate the Committee's support for global health,
particularly continued research and development (R&D) to advance new
drugs, vaccines, diagnostics, and other tools for longstanding and
emerging health challenges-like COVID-19. This pandemic has
demonstrated again that R&D must be the tip of the spear of our
response to global health emergencies and that innovation is our exit
strategy from the economic and social crises spurred by the public
health containment measures necessitated by our lack of effective
tools. This reality holds across many everyday emergencies in global
health-conditions affecting communities around the globe that cause
suffering and death often absent from the headlines.
As the subcommittee considers fiscal year 2021 appropriations in
light of this crisis, to accelerate progress towards life-saving tools
for the full range of emerging and enduring global health threats, we
respectfully request maintaining robust funding for NIH, particularly
the National Institute for Allergy and Infectious Diseases (NIAID) and
the Fogarty International Center; providing funding to match CDC's
growing responsibilities in global health and global health security,
at minimum level funding of $570.8 million for the Center for Global
Health (CGH) and $635.8 million for the National Center for Emerging
Zoonotic and Infectious Diseases (NCEZID); and supporting funding for
BARDA's critical work in emerging infectious diseases. GHTC members
strongly believe that sustainable investment in R&D for a broad range
of neglected diseases and health conditions is critical to tackling
both longstanding and emerging global health challenges that impact
people around the world and in the United States. This means investing
between and beneath global health crises: both for rapid innovation for
emerging infectious diseases when they strike and to enable continued
progress on less visible but life-saving, decades-long efforts to
combat persistent challenges like HIV/AIDS, tuberculosis (TB), and
malaria.
Coordination is also key: We urge the Committee to request that
leaders of the Department of Health and Human Services (HHS) agencies
work with counterparts at the State Department and the United States
Agency for International Development to develop a cross-government
global health R&D strategy to ensure that U.S. investments are
efficient, coordinated, and streamlined. Operation Warp Speed is an
audacious effort to combine the unique strengths of several U.S.
agencies, the U.S. military, and private-sector partners with the goal
of producing 300 million COVID-19 vaccine doses by January of next
year. This unique whole-of-government effort to combat this global
health emergency provides an inspiring model that could be replicated
to dramatically accelerate progress against other persistent global
health threats and leave us better prepared for the next health
emergency.
With supplemental funding afforded in emergency COVID-19 relief
bills, NIH, CDC, and BARDA have moved at historic speed to launch
research partnerships and support product development to combat COVID-
19. In just a few months, these agencies have begun advancing more than
50 innovations, including at least 20 diagnostics, 16 therapeutics, and
7 vaccine candidates. The pandemic has spurred an unprecedented
scientific response, enabled by a U.S. biomedical research
infrastructure primed and ready to act thanks to a decade of historic
investment by this subcommittee. These foundational investments have
enabled products to be developed and rolled out much faster than in
previous health emergencies. For example, it took researchers about 5
months to even identify the SARS virus after it was already spreading
in 2003. COVID-19 was sequenced in just weeks with work on vaccines and
diagnostics launched soon after. Our ability to mount this rapid
response is a testament to the strengthening of our biomedical research
infrastructure enabled by forward-thinking investment.
While COVID-19 demands our immediate attention and accelerated
efforts, the everyday emergencies of persistent health threats continue
to threaten communities around the globe. Though we have made
tremendous gains in global health over the past fifteen years, millions
of people around the world are still threatened by HIV/AIDS, TB,
malaria, and other neglected diseases and conditions. In 2018, TB
killed 1.5 million people, surpassing deaths from HIV/AIDS, while 1.7
million people were newly diagnosed with HIV. Nearly half the global
population remains at risk for malaria, and drug-resistant strains are
growing. Women and children remain the most vulnerable with around 80
percent of all global maternal and child deaths occurring in sub-
Saharan Africa and 1 out of every 13 children in the region dying
before the age of 5, often from vaccine-preventable and other
communicable diseases. These figures highlight the tremendous global
health challenges that remain and the need for sustained investment in
global health R&D to deliver new tools to combat endemic and emerging
threats. New tools and technologies are also critical to address
challenges of drug resistance, outdated and toxic treatments, and
difficulty administering current health technologies in poor, remote,
and unstable settings.
The COVID-19 pandemic has demonstrated once again that we do not
readily have all the tools needed to tackle many neglected and emerging
infectious diseases--a reality brought into sharp focus during the Zika
and West African Ebola epidemics just a few years ago. Yet, the impact
of the rVSV-ZEBOV Ebola vaccine on the now-waning epidemic in the
Democratic Republic of the Congo (DRC) demonstrates the power of having
the right tool at the right time to respond to a health emergency. This
new vaccine, developed with critical funding from NIH and other U.S.
Government partners, is 97.5 percent effective--a game-changer for this
and future outbreaks. As part of the rapid research response to COVID-
19, the U.S. Government and global partners are leveraging past
investments in R&D for other global health threats to advance
innovations for COVID-19. For instance, a vaccine development platform
originally developed to advance vaccine candidates for HIV/AIDS is
being repurposed to develop COVID-19 vaccine candidates, and an
emergency use authorization was recently granted to Remdesivir, a
broad-spectrum antiviral compound originally developed as an Ebola and
Marburg virus treatment that is now showing promise as a COVID-19
therapeutic. The United States is at the forefront of COVID-19
innovation today because of past investments in NIH, CDC, and BARDA.
NIH: The groundbreaking science conducted at NIH has long upheld
U.S. leadership in medical research. Within NIH, NIAID, the Office of
AIDS Research, and the Fogarty International Center all play critical
roles in developing new health technologies that save lives at home and
around the world. Recent activities have led to the creation of new
tools to combat neglected diseases, including vaccines for dengue and
trachoma, new drugs to treat malaria and TB, and multiple tools for
Ebola. Leadership at NIH has long recognized the vital role the agency
plays in global health R&D and has named global health as one of the
agency's top five priorities.
Today, NIH is leading U.S. R&D for COVID-19, supporting at least 17
vaccine, therapeutic, and diagnostic candidates, and, with emergency
supplemental funding, rapidly identifying new candidates to support.
Thanks to research investments in response to the SARS and MERS
outbreaks, NIAID scientists and partners are better prepared to develop
diagnostics, therapeutics, and vaccines for COVID-19. It remains
critical that support for NIH considers all pressing areas of research-
including research in neglected and emerging infectious diseases.
CDC: CDC also makes significant contributions to global health
research, particularly through CGH and NCEZID. CDC's ability to respond
to disease outbreaks is essential to protecting the health of citizens
both at home and abroad, and the work of its scientists is vital to
advancing the development of tools, technologies, and techniques to
detect, prevent, and respond to urgent public health threats. Important
recent global health contributions by NCEZID includes innovative
technologies to provide a rapid diagnostic test for the Ebola virus, a
new vaccine to improve rabies control, and a new diagnostic test for
dengue virus. The center also plays a leading role in the National
Strategy for Combating Antibiotic-Resistant Bacteria to prevent,
detect, and control outbreaks of antibiotic-resistant pathogens, such
as drug-resistant TB. NCEZID was instrumental in the development of the
first COVID-19 diagnostic used in the U.S., and their Office of
Advanced Molecular Detection is leading the SARS-CoV-2 Sequencing for
Public Health Emergency Response, Epidemiology and Surveillance
(SPHERES) initiative, a new national genomics consortium to coordinate
SARS-CoV-2 sequencing across the country that will provide crucial
information to track the spread of the virus and identify diagnostic
and therapeutic product targets.
Programs at CDC's CGH--including the Divisions of Global HIV and
TB, Global Immunization, Parasitic Diseases and Malaria, and Global
Health Protection--have also yielded tremendous results in the
development and refinement of vaccines, drugs, microbicides, and other
tools to combat HIV/AIDS, TB, malaria, and neglected tropical diseases
like leishmaniasis and dengue fever. CGH develops and validates
innovative tools for use by U.S. bilateral and multilateral global
health programs and leads laboratory efforts to monitor and combat drug
and insecticide resistance--functions essential to ensuring that global
health programs are responsive, efficient, and tailored for maximum
impact.
As global disease outbreaks have grown in frequency and intensity,
CDC's work in novel technology development and global health security
has only become more important. This includes the agency's efforts to
quash the most recent Ebola outbreak in DRC through its international
leadership on the Global Health Security Agenda (GHSA). GHTC supports
the funding increase to the Division of Global Health Protection (DGHP)
within CGH proposed by the Administration for fiscal year 2021 and
urges the Committee to continue annual increases to this and other
accounts critical to global health security-related R&D. As shown
through COVID-19 and the still-recent epidemics of Ebola and Zika,
these functions are being called upon with greater frequency and are
critical to protecting the health of Americans and the health of people
around the world. CDC monitors 30 to 40 international public health
threats each day, has identified disease outbreaks in over 150
countries, responded to over 2,000 public health emergencies, and
discovered 12 previously unknown pathogens. We also urge increased
funding for NCEZID, which supports DGHP's response efforts globally
with laboratory expertise.
BARDA: BARDA plays an unmatched role in global health R&D by
providing an integrated, systematic approach to the development and
purchase of critical medical technologies for public health
emergencies. By leveraging unique contracting authorities and targeted
incentive mechanisms, BARDA partners with diverse stakeholders from
industry, academia, and nonprofits to bridge the valley of death
between basic research and advanced-stage product development for
medical countermeasures--an area where more traditional U.S. Government
research programs do not operate. With these unique assets, BARDA has
played a vital role in the development of urgently needed
countermeasures for pandemic influenza, antimicrobial resistance, and
emerging infectious diseases (EIDs), like Ebola and Zika. Today,
BARDA's unique strengths are on full display in its response to COVID-
19. The agency has received supplemental resources many times its
annual base appropriation to advance medical countermeasures for the
pandemic, and is moving at unprecedented speed to use these resources
to advance more than 30 products to diagnose, treat, and prevent COVID-
19.
To date, BARDA's work in advancing tools to protect against the
threat of EIDs has largely been supported through emergency funding,
and today it is being forced to curtail critical work on a range of
naturally occurring threats to focus on COVID-19. A dedicated funding
line for EIDs would ensure that they are resourced for a wide range of
future threats and would prevent delays like those seen between the
onset of the COVID-19 pandemic and the first BARDA awards made with
supplemental funding. In a public health emergency, science cannot
wait, and we must ensure our research agencies have a funding pipeline
ready to resource innovation for the next threat as soon as it is
identified.
In addition to bringing lifesaving tools to those who need them
most, investment in global health R&D is also a smart economic
investment for the United States, with 89 cents of every US dollar
invested in global health R&D going directly to U.S.-based researchers.
U.S. Government investment in global health R&D between 2007 and 2015
generated an estimated 200,000 new jobs and $33 billion in economic
growth. As the COVID-19 crisis is demonstrating, investments in global
health R&D today can help achieve significant cost-savings and mitigate
the economic impact of outbreaks in the future.
It bears repeating: innovation is our exit strategy for COVID-19
and we will not be safe from the pandemic in the United States until we
end it everywhere. HHS research agencies advancing COVID-19 innovations
should be encouraged to assess whether and how such products might be
adapted for use in low-resource settings, where electricity is limited
or delivery methods such as intravenous administration are not always
feasible. Furthermore, as we continue to focus our immediate energies
on combatting this global pandemic, we must also work to ensure that
research on other critical global health issues is not sidelined
indefinitely--investment will be needed to restart clinical trials,
extend participant enrollment, and shore up critical research
infrastructure through the eye of this storm and in the aftermath of
this public health emergency.
At this time of crisis, Congress must make forward-thinking choices
to respond to the emergency before us and draw on the painful lessons
emerging from it to ensure that we are primed and ready for the next
health threat--while also committing to continue progress against the
full range of global health challenges. Global health research, which
improves the lives of people around the world while supporting U.S.
interests and health security, creating jobs, and spurring economic
growth, is a win-win investment.
[This statement was submitted by Jamie Bay Nishi, Director, Global
Health
Technologies Coalition.]
______
Prepared Statement of Global Water 2020
With COVID-19 dominating the news, the importance of handwashing is
front and center as one of the only effective ways of preventing
infection. Both the Centers for Disease Control and Prevention (CDC)
and the U.S. Surgeon General have touted the importance of washing your
hands. More broadly, access to safe drinking water, sanitation, and
hygiene (including handwashing), or WASH, is one of the first lines of
defense in slowing the spread of most infectious disease outbreaks such
as the flu and Ebola, as well as protecting communities, patients, and
frontline health workers over the long-term. For this reason, Global
Water 2020 recommends funding the Global WASH program within the Center
for Global Health (CGH) and the National Center for Emerging and
Zoonotic Infectious Diseases (NCEZID) at CDC at $10 million for fiscal
year 2021. In addition, we support overall funding for the Center for
Global Health at $642 million and the National Center for Emerging and
Zoonotic Infectious Diseases at $699.3 million. Both of these Centers
support global WASH programs at the agency.
The CDC Global WASH program works to address the impact of WASH-
related diseases such as cholera, hepatitis, and typhoid fever, by
improving access to safe water, adequate sanitation, and improved
hygiene in communities, schools, and healthcare facilities. CDC works
to identify and scale up the most effective WASH interventions, using
proven technologies to treat and safely store drinking water in homes,
schools, and healthcare facilities, and the integration of sanitation
and hygiene programs in schools and communities.
To accomplish this work, CDC partners with other U.S. government
agencies, non-governmental organizations, Ministries of Health, and
other international organizations. Through these partnerships, CDC
provides the technical backbone to better understanding water-borne
pathogens and assists countries with establishing sustainable and
country-led WASH services.
In addition, the Global WASH program is critical to CDC's work to
advance the U.S. Global Health Security Strategy, as well as U.S.
commitments to the Global Health Security Agenda (GHSA). Investing in
WASH, and more broadly health systems, puts in place preventative
measures that help countries to better prevent, detect, and respond to
infectious disease outbreaks. WASH also plays a role in combatting the
rise of ``superbugs,'' or drug-resistant diseases, by preventing
infections and lowering the need to use antibiotics.
However, there is a dangerous lack of WASH in many healthcare
facilities around the world. One in four healthcare facilities lacks
basic water services, one in five has no sanitation services, and two
in five lack basic hand hygiene services. So during a time when people
are encouraged to wash their hands to prevent the spread of the
coronavirus, there are frontline health workers and other healthcare
professionals, as well as patients, who are unable to do so. We also
saw this during the Ebola epidemic in West Africa, where the lack of
access to safe WASH in healthcare facilities and communities was a
factor in the inability to contain the disease. And the lack of WASH in
many healthcare facilities during this outbreak puts patients seeking
routine services such as neonatal care at risk of infection.
Currently, CDC does not receive dedicated and consistent funding
for the Global WASH program. The ongoing COVID-19 outbreak and the
focus on the importance of handwashing underscore the critical need to
ensure that CDC can continue this work without worrying about where
funding will come from every fiscal year.
Specifically, $10 million could ensure that CDC's global WASH
program could continue its work on:
--Improving access to WASH in healthcare facilities to prevent
disease outbreaks and the overuse of antibiotics through better
infection prevention and control;
--Strengthening CDC's work to control or eliminate Neglected Tropical
Diseases (NTDs) that are exacerbated by inadequate WASH; and
--Continuing CDC's work towards eliminating cholera as a public
health threat.
In addition, this request will help maintain CDC's efforts to
identify the most effective WASH interventions and provide technical
assistance in scaling up those interventions. And by leveraging the
WASH investments made by USAID, multilateral banks, and non-
governmental organizations, CDC is helping to make WASH interventions
more efficient and sustainable.
We highly recommend that funding for the Global WASH program be new
funding and not taken from existing programs at CDC.
Making investments in WASH now is critical to putting in place
preventive measures that can slow the spread of the next novel
coronavirus, Ebola outbreak, or the yet to be identified disease X and
perhaps prevent multi-billion dollar emergency supplementals in the
future. Access to WASH services is critical to protecting the health,
well-being, and resilience of individuals and communities. WASH is one
of the most cost-effective interventions available for improving global
health and development, which leads to more resilient and prosperous
communities.
[This statement was submitted by Danielle Heiberg, Advocacy
Advisor, Global Water 2020.]
______
Prepared Statement of Gutierrez Linda deg.
Prepared Statement of Linda Gutierrez
My brother was diagnosed with Schizophrenia when he was 16 years
old, he is 62 now. His life from adolescence through adulthood has been
consumed by mental illness. His dreams and ambitions were never
fulfilled. I would give anything to have a cure or at least better
treatment for this awful brain disease that often leaves its victims in
jail, homeless, or hospitalized; and destroys families. This serious
brain illness is not rare as many believe, but affects 1.1 percent of
the population and that statistic has been true since first recorded,
and is basically the same throughout the world. Its cause is primarily
genetic, but is believed to be triggered by environmental factors.
Schizophrenia (and schizoaffective disorder) robs the person of
motivation, concentration, and cognition, as well as presenting
positive symptoms such as hallucinations and delusions.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
I beg you to have NIMH prioritize research for the 5 percent of our
population that has serious mental illnesses that include chronic
depression (the leading cause of disability in the U.S.), schizophrenia
(and schizoaffective disorder), and bipolar illness. This makes sense
because it's the humane thing to do, but it also makes good fiscal
smarts. The most severe mental illnesses account for the most dollars
spent in hospitals, jails, prisons, emergency rooms, and services for
the homeless.
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of
Health budget resolution in December 2019, which brings the
NIMH budget to just under $2 billion and represents a 35
percent increase since 2015, one of the largest increases in
the history of the NIMH. Yet, during the 5 years from 2015
through 2019, NIMH funded a total of TWO new drug treatment
trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from
2006 through 2010 when NIMH funded 48 such trials . . .''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses identifying examples of research initiatives the NIMH
could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans. Those with the most severe
forms of mental illness deserve to be prioritized.
Thank you for your consideration,
Sincerely.
______
Prepared Statement of Head Start
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee,
On behalf of the Head Start community, thank you for the
opportunity to submit written testimony regarding funding for Head
Start and Early Head Start (collectively referred to as ``Head Start'')
in fiscal year 2021. For 55 years, Head Start has provided early
learning opportunities for our country's most vulnerable children and
comprehensive support to families that address long-term economic
stability and better health prospects, ultimately mitigating the
devastating impacts that poverty can have on the future success of
young children. As a community, we are grateful for the Subcommittee's
tradition of strong bipartisan support for Head Start and its
leadership on issues related to children and families. This
Subcommittee has been a tremendous advocate for Head Start, Early Head
Start, and other programs that give hardworking families sustained,
unmatched support, providing the chance for children not just to
succeed in school but to thrive in life. In light of the COVID-19
pandemic, we would like to thank you for the immense amount of time and
effort that you have put into ensuring that children and families'
needs are met as the impact in local communities continues to take
shape. To build on these critical successes, the National Head Start
Association (NHSA) recommends $11,369,445,000 in Head Start funding for
fiscal year 2021.
My personal journey with Head Start began over 30 years ago. I was
teaching in the elementary schools when I took a summer job with a
Community Action Program in Iowa. By the end of that summer, I had
accepted a job as an Education Coordinator for Head Start. Really, Head
Start found me and set my trajectory in motion. Because of my
employment with Head Start, I was able to finish a master's degree in
education and pursue a doctoral degree in organizational leadership.
Now, I have been the Head Start program director at Douglass Community
Services (DCS) in Hannibal, Missouri for more than 15 years.
Everyone says, 'Head Start gets into your blood,' and it is true. I
quickly grew to love Head Start's intergenerational approach. From the
beginning, my work has been inspired by watching families define
success for themselves and then going on to achieve it. I have seen
many parents in our program earn their degrees and start careers. Many
chose nursing school, and now, one of our former parents is the head
emergency room nurse at our local hospital. All across our community,
Head Start parents are stepping up as heroes right now. In all my years
with Head Start, many things have changed, but one constant is seeing
the success of families, and that is why I am still here more than 30
years later.
Our staff are the engine of the work we do. At DCS, we employ 140
people-teachers, nurses, managers, and mental health specialists. Every
year, we compete with our local school districts to keep the qualified,
quality staff who we have trained and invested in. We, our program and
our families, need our teachers' skill and passion for educating
children, but year after year, it is a challenge to compete with public
schools that can offer better compensation and benefits. At DCS, we
prioritize offering creative, robust benefits to stay competitive with
the local school districts, but supporting our workforce requires so
much more.
While further financial investment in our workforce is crucial, we
have also addressed staff turnover by creating an apprenticeship
program, which has been beneficial for our whole community. When our
CEO Stephanie Cooper came to DCS 5 years ago, we were able to start
building our career and professional development program. We knew that
if staff could see their work in Head Start as part of a career path,
the work would get in their blood just like it did mine.
The apprenticeship program is a career ladder that allows teachers
to grow within Head Start. We were the first Head Start program, and
the first program of any kind in our community, to establish an
official apprenticeship program. With the help of community partners
and the whole-hearted support of the DCS team, we have seen incredible
success with the apprenticeship program. Now, many of our staff have
been with us for a number of years, and many have earned CDAs and
degrees and stayed with us. Each year, DCS depends on Congress to be
able to provide small increases to our staff to incentivize them to
stay with us. For fiscal year 2021, Head Start requests that Congress
maintains its strong history of providing this critical cost-of-living
adjustment to Head Start that can help maintain services as the costs
of business increase. These investments have exponential benefits for
the continuity of our workforce and for the outcomes of our children
and families.
Another development in recent years is the way we have changed our
mental health practices in response to new and evolving needs within
our community. Knowing that many of our children have experienced
trauma and understanding the possible lifelong effects of adverse
childhood experiences, we shifted our practices to a trauma-informed
approach. Our staff now approach children's challenging behaviors with
the understanding that they may be coping with the effects of trauma,
and we work with them to understand their emotions and behaviors. As a
part of this intensive effort, we decreased class sizes, so that
teachers in the classroom have the opportunity to build trusting
relationships with all children.
These efforts do not end with the children who we serve. Our
trauma-informed mindset extends to our interactions with parents and
with one another on the DCS team. By simply asking parents,'How are you
doing today?' when they walk in our doors, and really listening, we are
building relationships and empowering them to be the best parents they
can be. When we provide trauma-related training for parents and staff,
we work hard to make it feel not like a training, but instead, a
strengths-based conversation. Parents are their children's first and
most important teachers, and we want them to know how valued they are.
One of our parents, Jessika, is a 30-year-old mother of four
children and has been with Head Start for a little over 4 years.
Jessika shared what she learned and applied to her own life from Trauma
Smart, the trauma-informed care curriculum provided by DCS Head Start.
Having spent her youth in 23 foster homes, she was still in foster care
at age 16 when she became pregnant. She was blessed to have a foster
mom who was willing to keep her and her baby, so she did not have to
give her first child up for adoption. She shared that our Trauma Smart
program helped her learn a lot about herself and identify that it was
the trauma she had experienced early in life that was leading her
behaviors as an adult.
In Trauma Smart, we learn the analogy of the brain as a car. When
you feel that you are in control of decisions, can solve problems, and
regulate your emotions, you are in the front seat. In the back seat,
you are in an emotional state, and when you are in the trunk, you are
in a survival mode of fight, flight, or freeze. Jessika stated that
through training she realized that she had spent most of her life ``in
the trunk,'' so much of it in fact that although it did not feel good,
it felt safe.
She shared that the training took her through a healing process,
where she could let go of the fear of moving from the safety of her
trunk and to see things through the eyes of others, including the eyes
of her own kids. In talking with me about her experience with Trauma
Smart, she ended by saying, ``I realized I was a broken adult, and I
was tired of just surviving.'' She keeps her training materials by her
bedside and refers to them often. Through her progress with Trauma
Start, Jessika has a new-found confidence and has set positive goals
for herself and her family. She is taking college courses with the goal
of completing a bachelor's degree. She knows that she is a much better
parent and can see changes in her children's behaviors that will make
them much more successful as well.
The trauma training we provide also builds a sense of camaraderie
among our staff that enables them to support each other, and this work
reminds us that we are doing more than going into a classroom and
teaching: we are making a substantial impact in children's lives. We
made these intentional changes in Hannibal long before much of the talk
about trauma-informed care began, and we are glad such practices are
reaching many more Head Start children and families today. That said,
we know that there is so much more that could be done, here in Hannibal
and in Head Start programs across the country working to provide the
interventions needed for children to succeed in school and later in
life. In fiscal year 2021, the Head Start community is seeking an
increase of $495 million in quality improvement funding, so that even
more children and families can see the benefits of services like our
trauma intervention.
Today, as we watch our communities adapt to respond to COVID-19,
children and families are facing new challenges and need Head Start
more than ever. With stay-at-home orders in place, Head Start programs
have continued to operate remotely, serving the needs of both children
and caregivers with delivery of food and sanitation supplies, provision
of learning materials, and virtual home visits. While there has long
been an urgent need to respond to children and families' mental health
needs, COVID-19 has dramatically compounded those needs.
While operating completely remotely, technology has become one of
our greatest areas of need, for both families and our DCS staff. For
our staff without home Internet access, we purchased hotspots. We have
also purchased track phones for teachers to stay in contact with
families. But the need for better technology is still there. Even if we
could get devices for every family, it would not be much use for those
without Internet, unlimited data plans, or cell service. Head Start is
the option for families in our area, and meeting the needs that stem
directly from COVID-19 is critical if we are going to be able to
fulfill our mission of sending children to kindergarten prepared.
Nationwide, there are roughly 1,600 Head Start grantees that serve
more than one million children and pregnant mothers each year and a
workforce of more than 270,000 Head Start staff who partner with those
children and families. As you make difficult decisions around fiscal
year 2021, I ask that you keep them in mind--the members of the early
childhood workforce who are such strong pillars in our programs and our
communities, who step up in times of crisis with selfless, untiring
commitment to the betterment of our community, innovative ideas to meet
our families' needs, and unending compassion. I ask that you keep in
mind the parents, like Jessika, who thrive through Head Start and the
children who depend on Head Start to arrive at kindergarten with a love
of learning and a readiness to succeed.
Above all, please remember that trauma does not go away. Trauma was
on the rise in the communities that Head Start serves before COVID-19,
and soon, we will see the effects of the trauma brought on by the
pandemic. Our efforts to address challenges stemming from trauma, faced
by our communities are not slowing down either. I ask you to remember
that the Quality Improvement Funds that came in fiscal year 2020 fuel
this unending work, and I urge you to consider just how critically
important it is that the trauma intervention services funded through
QIF are sustained as our community meets new challenges.
Thank you for your consideration.
Sincerely.
[This statement was submitted by Linda Bleything, Director,
Douglass
Community Services Head Start & Early Head Start.]
______
Prepared Statement of Healing Minds NOLA
Healing Minds NOLA, is a non-profit organization based in New
Orleans, Louisiana. Our mission is to explore and create alternatives
to incarceration, homelessness and death for people living with
untreated and undertreated severe mental illnesses. We appreciate the
opportunity to provide written testimony regarding the National
Institute of Health fiscal year 2021 budget appropriations.
Over the years, Americans have witnessed the steady decline of
long-term support programs and services for people with chronic,
debilitating severe mental illnesses. Despite the lifetime care needs
of people with mental diseases, a large percentage of people go without
treatment every year.
``Based on 2016 population numbers, the analysis found the
following: 8.2 million U.S. adults had schizophrenia or severe bipolar
disorder at the combined NIMH prevalence rate of 3.3 percent. 3.9
million people with these diseases were untreated at any given time
during the year'' \1\
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\1\ https://www.treatmentadvocacycenter.org/fixing-the-system/
features-and-news/3828-research-weekly-2016-prevalence-of-treated-and-
untreated-severe-mental-illness-by-state.
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Many exist within a never-ending system of crisis care--being
shuffled between the revolving doors of ERs, hospitals, jails, shelters
and various states of homelessness. 40-50 percent are treatment non-
adherent \2\ due to Anosognosia, defined as a deficit of self-
awareness, a condition in which a person with a disability is unaware
of having it.\3\ It is highly unlikely that anyone would seek treatment
and care for an illness they didn't have.
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\2\ https://www.treatmentadvocacycenter.org/key-issues/anosognosia/
3628-serious-mental-illness-and-anosognosia.
\3\ https://en.wikipedia.org/wiki/Anosognosia.
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Anosognosia is just one syndrome associated with severe mental
illness that we see on a regular basis. Other barriers to care include
negative attitudes toward medication due to side effects. Consequences
of non-adherence include poor quality of life or psycho-social
outcomes, relapse of symptoms, increased co-morbid medical conditions,
wastage of healthcare resources, and increased suicide.\4\
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\4\ https://www.dovepress.com/why-do-psychiatric-patients-stop-
antipsychotic-medication-a-systematic-peer-reviewed-fulltext-article-
PPA.
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To mitigate the enormous humanitarian and economic costs of
untreated and under-treated severe mental illness, now is the time to
increase support for drug trials and treatments for schizophrenia,
bipolar disorder, and major depressive disorder. Better medications
with less side-effects and evidence-based treatments would do much to
end the suffering for people who struggle with mental diseases.
Given that the NIMH has failed to prioritize funds for the most at-
risk and vulnerable mentally ill population,\5\ we urge the United
States Senate Subcommittee on Labor, Health and Human Services, and
Education, and Related Agencies to require it.
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\5\ https://www.psychiatrictimes.com/article/riches-abound-so-
where-are-trials-schizophrenia-and-bipolar-disorder.
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Thank you for your consideration of this matter.
[This statement was submitted by Janet Hays, Director, Healing
Minds NOLA.]
______
Prepared Statement of the Health Professions and
Nursing Education Coalition
The Health Professions and Nursing Education Coalition (HPNEC) is
an alliance of 80 national organizations representing schools,
students, health professionals, and communities dedicated to ensuring
that the healthcare workforce is trained to meet the needs of our
diverse population. Together, the members of HPNEC advocate for
adequate and continued support for the health professions and nursing
workforce development programs authorized under Titles VII and VIII of
the Public Health Service Act and administered by the Health Resources
and Services Administration (HRSA). For fiscal year 2021, HPNEC
encourages the subcommittee to adopt at least $790 million for HRSA
Titles VII and VIII programs.
HRSA's Title VII health professions and Title VIII nursing
workforce development programs are structured to allow grantees to test
educational innovations, respond to changing delivery systems and
models of care, and timely address health threats, such as COVID-19.
Titles VII and VIII programs are structured to respond to changing
delivery systems and models of care, such as telehealth, while
addressing immediate health threats in all communities. Through
scholarships, loan repayment programs, grants, and contracts to
academic institutions, students, and non-profit organizations, HRSA's
workforce development programs address health threats in all
communities by filling the gaps in the supply of health professionals
not met by traditional market forces.
As our population grows, ages, and becomes increasingly diverse,
our health professions workforce must adapt to the ever-changing health
needs of patients from all backgrounds in communities across the
country. Now more than ever support is needed for Title VII and Title
VIII programs that improve the supply, distribution, and diversity of
the workforce--to ensure health professionals are prepared to address
the healthcare challenges of today and the future.
Public Health.--Public Health Workforce Development trains
America's public health workforce to identify underlying causes of
health issues, new disease strains, health disparities, and other
public health issues vital to the country's response to any pandemic.
These programs support education and training in public health and
preventive medicine through different initiatives, including the only
funding for physicians to work in state and local departments of
health. In AY 2018-2019, Public Health Workforce grantees delivered
unique continuing education courses more than 226,500 practicing
professionals in the workforce.
Diversity Pipeline Programs.--Title VII and Title VIII programs
play an essential role in improving the diversity of the health
workforce and connecting students to healthcareers by supporting
recruitment, education, training, and mentorship opportunities. With
public health issues, such as COVID-19, disproportionately impacting
racial and ethnic minorities, these programs recruit and train a
diverse and culturally competent health workforce, tasked to mitigate
health disparities.
Diversity programs include the Health Careers Opportunity Program
(HCOP), Centers of Excellence (COE), Faculty Loan Repayment, Nursing
Workforce Diversity, and Scholarships for Disadvantaged Students (SDS).
Studies have demonstrated the effectiveness of such pipeline programs
in strengthening students' academic records, improving test scores, and
helping minority and disadvantaged students pursue careers in the
health professions. Title VII diversity pipeline programs reached over
10,000 students in the 2018-2019 academic year (AY), with SDS
graduating nearly 1,400 students and COE reaching more than 5,600
health professionals; 56 percent of which were located in medically
underserved communities.
Title VIII's Nursing Workforce Diversity Program increases nursing
education opportunities for individuals from disadvantaged backgrounds,
through stipends and scholarships, and a variety of pre-entry and
advanced education preparation. In AY 2018-19, the program supported
more than 11,000 students, with approximately 46 percent of the
training sites located in underserved communities
Primary Care Workforce.--The Primary Care Medicine Programs expand
the primary care workforce, including general pediatrics, general
internal medicine, family medicine, and physician assistants through
the following programs: Primary Care Training and Enhancement (PCTE);
academic units for PCTE; PCTE: Training Primary Care Champions; and
Primary Care Medicine and Dentistry Career Development. The Primary
Care programs are also intended to encourage health professionals to
work in underserved areas. In AY 2018-2019, 61 percent of PCTE programs
were located in medically underserved communities and 30 percent in
rural areas.
The Medical Student Education program, which supports the
healthcare workforce by expanding training for medical students to
become primary care clinicians, targets institutions of higher
education in states with the highest primary care workforce shortages.
By providing grants to institutions, the program develops partnerships
among institutions, federally recognized tribes, and community-based
organizations to train medical students to provide primary care that
improves health outcomes for those living in rural and other
underserved communities.
Interdisciplinary, Community Based Linkages.--Support for
community-based training of health professionals in rural and urban
underserved areas is funded through Title VII. By assessing the needs
of the local communities they serve, Title VII programs can fill gaps
in the workforce and increase access to care for all populations. The
programs emphasize interprofessional education and training, and using
telehealth to bring together knowledge and skills across disciplines to
provide effective, efficient, and coordinated care.
Programs such as Graduate Psychology Education (GPE); Opioid
Workforce Enhancement Program; Mental and Behavioral Health; Behavioral
Health Workforce Education and Training (BHWET); and Allied Health
Training test educational innovations, respond to changing delivery
systems and models of care, and timely address emerging health issues
in their communities. The BHWET and Mental and Behavioral Health
programs, which include GPE, provides training to expand access to
mental and behavioral health services for vulnerable and underserved
populations. In AY 2018-19, nearly 50 percent of all BHWET and GPE
grantees provided substance use disorder treatment services.
Area Health Education Centers (AHEC) support the recruitment and
training future physicians in rural areas, as well as providing
interdisciplinary healthcare delivery sites, which respond to community
health needs. In AY 2018-19, AHECs supported 192,000 pipeline program
participants, provided over 34,000 clinical training rotations for
health professions trainees.
Title VII Geriatric Workforce programs integrate geriatrics and
primary care to provide coordinated and comprehensive care for older
adults. These programs provide training across the provider continuum
(students, faculty, providers, direct service workers, patients,
families, and lay and family caregivers), focusing on interprofessional
and team-based care and on academic-community partnerships to address
gaps in healthcare for older adults. To advance the training of the
current workforce, the Geriatrics Workforce Enhancement Program (GWEP)
provided 1,342 unique continuing education courses to 187,955 faculty
and practicing professionals in AY 2018-19, including 445 courses on
Alzheimer's and dementia-related diseases
Nursing Workforce Development.--Title VIII nursing workforce
development programs provide Federal support to address all aspects of
nursing workforce demands, including education, practice, recruitment,
and retention, with a focus on rural and medically underserved
communities. These programs include Advanced Nursing Education; Nursing
Workforce Diversity; Nurse Education, Practice, Quality, and Retention;
NURSE Corps; and Nurse Faculty Loan Program. In AY 2018-2019, the Title
VIII Advanced Education Nursing programs supported more than 9,000
nursing students in primary care, anesthesia, nurse midwifery, and
other specialty care, all of whom received clinical training in primary
care in medically underserved communities and/or rural settings.
Oral Health.--The Primary Care Dentistry program invests in
expanding programs in dental primary care for pediatric, public health,
and general dentistry. The Pre- and Postdoctoral Training, Residency
Training, Faculty Development, and Faculty Loan Repayment programs
encourage integrating dentistry into primary care.
Workforce Information and Analysis.--The Workforce Information and
Analysis program Provides funding for the National Center for Health
Workforce Analysis as well as grants to seven Health Workforce Research
Centers across the country that perform and disseminate research and
data analysis on health workforce issues of national importance.
While HPNEC's members acknowledge the increasing demands and fiscal
challenges facing appropriators, funding for HRSA's workforce
development programs is critical in creating a culturally competent
workforce that can respond to current and future public health threats
facing all Americans. Therefore, HPNEC encourages the subcommittee to
adopt at least a $790 million for HRSA's Title VII and VIII programs to
continue the nation's investment in our health workforce.
______
Prepared Statement of the Hepatitis B Foundation
hbf recommendations for fiscal year 2021 appropriations
_______________________________________________________________________
National Institutes of Health
--Along with the biomedical research community, the Hepatitis B
Foundation (HBF) recommends at least $44.7 billion for NIH in
fiscal year 2021. This would be a $3 billion increase over
NIH's program level funding in fiscal year 2020. This funding
level would allow for meaningful growth above inflation in the
base budget that would expand NIH's capacity to support
promising science in all disciplines beyond the directed
funding included in the 21st Century Cures Act.
--HBF commends NIAID, NIDDK, NCI for the development of a Trans-NIH
Strategic Plan to Cure Hepatitis B and urges the Institutes to
issue targeted calls for research to implement and fund the
Strategic Plan.
Centers for Disease Control and Prevention
--HBF supports $8.3 billion for the Centers for Disease Control and
Prevention programs in fiscal year 2021, and within that $134
million for the Division of Viral Hepatitis. HBF further urges
the CDC to allocate the necessary resources to address serious
surveillance shortcoming without adversely impacting other CDC
hepatitis B programs.
_______________________________________________________________________
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to provide testimony as you consider funding priorities for
fiscal year 2021. I am Tim Block, President of the Hepatitis B
Foundation (HBF). The Hepatitis B Foundation and its associated Baruch
S. Blumberg Institute in Bucks County, Pennsylvania has grown to more
than 100 researchers and public health professionals and has one of the
largest, if not the largest, concentration of nonprofit scientists
working on the problem of hepatitis B and liver cancer in the United
States. The Foundation is a national disease advocacy organization that
has become the world's leading portal for patient-focused information
about hepatitis B. The Baruch S. Blumberg Institute is internationally
recognized, and we believe, home to some of as the most exciting and
promising work in the field.
Mr. Chairman, HBF joins the Ad Hoc Group for Medical Research
Funding, a coalition of 300 patient and voluntary health groups,
medical and scientific societies, academic research organizations and
industry, in recommending $44.7 billion, an increase of $3 billion, for
the National Institutes of Health in fiscal year 2021. While HBF
recognizes there are demands on our Nation's resources, we believe the
ever-increasing health threats and expanding scientific opportunities
continue to justify increased funding for NIH. HBF further urges that
NIH increase investments in hepatitis B research in order to find a
cure for the 2.2 million Americans infected with the hepatitis B virus
(HBV) and more than 10 deaths each day as a direct result of hepatitis
B.
In addition to the NIH, there are a number of programs within the
jurisdiction of the subcommittee that are important to HBF, including
the Centers for Disease Control and Prevention. We join the CDC
Coalition, an advocacy coalition of more than 140 national
organizations, in recommending $8.3 billion for the Centers for Disease
Control and Prevention in the fiscal year 2021 bill. Within that total,
we join the Hepatitis Appropriations Partnership in urging $134 million
for the CDC's Division of Viral Hepatitis.
recognizing the leadership of the subcommittee
Mr. Chairman, HBF appreciates your leadership and the leadership of
this Subcommittee in supporting public health service programs. Your
support is greatly recognized and appreciated. We applaud the
Committee's leadership in making progress in these important areas and
to allocating increased funding to these programs during periods of
fiscal austerity. We are particularly grateful for your leadership in
securing generous and steady increases for the NIH in your tenure as
Chairman.
national institutes of health
As previously noted, HBF recommends an fiscal year 2021 funding
level of $44.7 billion for the NIH, which would enable real growth over
health research inflation as an important step to ensuring stability in
the Nation's research capacity over the long term. The Administration's
request of $38.7 billion in fiscal year 2021, translating to a $3.0
billion cut, is reckless and shortsighted. Cuts to NIH would affect
every American, including patients, their families, researchers, and
communities where NIH investment spurs economic growth.
In addition to overall funding for the NIH, HBF urges that NIH
investments in hepatitis B research be increased at least $38.7 million
a year for 6 years in order to fund identified research opportunities
that would help cure and eliminate the disease once and for all. The
Hepatitis B Foundation appreciated the creation of the Hepatitis B
Trans-NIH Working Group and was even more encouraged by the release of
a Strategic Plan for Trans-NIH Research to Cure Hepatitis B in December
of 2019. Report language is requested in the fiscal year 2021 Report
urging the NIAID and NIDDK to issue targeted calls for HBV research
proposals in fiscal year 2021 focused on the many new research
opportunities identified by the Strategic Plan.
In the U.S., 1 in 20 Americans has been infected with hepatitis B
virus (HBV) and an estimated 2.2 million are chronically infected.
Worldwide, HBV is associated with 840,000 deaths each year, making it
the 10th leading cause of death in the world. Left undiagnosed and
untreated, 1 in 4 of those with chronic HBV infection will die
prematurely from cirrhosis, liver failure and/or liver cancer. Although
HBV is preventable and treatable, there is still no cure for this
disease. In view of the epidemic scope of hepatitis B and the fact that
the virus was discovered 50 years ago, it is disappointing that funding
for HBV research at the NIH is only expected to be funded at $66
million in fiscal year 2021.
There is the need, the know-how, and the tools to find a cure that
will bring hope to almost 300 million people worldwide suffering from
chronic hepatitis B. A cure was accomplished for hepatitis C with
increased Federal attention and funding. It can be accomplished for
hepatitis B as well. Each year, despite an effective vaccine, there are
30 million new HBV infections worldwide and over 80,000 new infections
in the U.S. Moreover, despite the availability of seven approved
medications to manage chronic HBV infection, none are curative, most
require lifelong use, and only reduce the likelihood of death due to
liver disease by 40-60 percent.
In addition to the devastating toll on patients and their families,
ignoring hepatitis B is costing the United States an estimated $4
billion per year in medical costs. By increasing the NIH budget for
hepatitis B we have a good chance of success in finding a cure in the
next few years. There are exciting new research developments and
opportunities in the field that make finding a cure very possible.
centers for disease control and prevention
Given the challenges and burdens of chronic disease and disability,
public health emergencies, new and reemerging infectious diseases and
other unmet public health needs, HBF joins the 140 organizations in the
CDC Coalition and urges a funding level of at least $8.3 billion for
CDC's programs in fiscal year 2021. This is $693 million more than the
Administration's request. The CDC serves as the command center for the
nation's public health defense system against emerging and reemerging
infectious diseases. States, communities, and the international
community rely on CDC for accurate information and direction in a
crisis or outbreak. The proposed reduction, especially in the time of a
global pandemic is reckless and we are strongly opposed.
The CDC's Division of Viral Hepatitis (DVH) is part of the National
Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at CDC. In
collaboration with domestic and global partners, DVH provides the
scientific and programmatic foundation and leadership for the
prevention and control of hepatitis virus infections and their
manifestations. HBF joins the Hepatitis Appropriations Partnership in
recommending $134 million for the DVH in fiscal year 2021. This is $95
million more than the Administration's request.
The CDC Division of Viral Hepatitis spends less than 5 percent on
HBV focused projects, despite hepatitis B infected patients comprising
more than 35 percent of all those infected with viral hepatitis.
Furthermore, tremendous HBV-related health disparities exist for people
of Asian and Pacific Islander descent and recent African immigrants.
These groups represent less than 5 percent of the U.S. population but
make up over 50 percent of the U.S. burden of chronic HBV infection.
CDC has not adequately addressed the issue of chronic HBV infections
among high-risk, foreign-born populations and their children. Of
particular concern, surveillance within the CDC surveillance program is
not robust enough to accurately report the prevalence of the disease in
high incidence states such as California and Hawaii. In view of the
fundamental importance of good surveillance data to develop, manage and
analyze public health programs and interventions, HBF urges CDC to
allocate the necessary resources to address this shortcoming without
adversely impacting other CDC hepatitis B programs.
HBF is further concerned that despite the availability of an
effective hepatitis B (HBV) vaccine, less than 25 percent of adults age
19 and older are vaccinated. According to CDC's most recent survey of
Vaccination Coverage Among Adults, this poor vaccination rate remains
flat and has not improved in several years. We are encouraged that CDC
is evaluating new universal HBV vaccination recommendations including a
comprehensive plan to increase adult HBV vaccinations. The CDC is
further urged to promote awareness about the importance of hepatitis B
vaccination among medical and health professionals, communities at high
risk, and the general public and to improve collaboration and
coordination across CDC to achieve this goal.
summary and conclusion
Mr. Chairman, again we wish to thank the Subcommittee for its past
leadership. Significant progress has been made in meeting the many
public health concerns facing this Nation, due to your efforts. Mr.
Chairman, if this country is to continue to see advances in improving
the health and well-being of our Nation adequate funding for the public
health service is paramount.
There is the need, the know-how, and the tools to find a cure that
will bring hope to more than 292 million people worldwide suffering
from hepatitis B. A cure was accomplished for hepatitis C with
increased Federal attention and funding. It can be accomplished for
hepatitis B as well. Each year, despite an effective vaccine, there are
an estimated 30 million new HBV infections worldwide and over 50,000
new infections in the U.S. Moreover, recent advances in the scientific
understanding of new viral and immunological antiviral targets, and new
experimental systems, are leading to innovations in drug discovery.
There are 46 drugs currently in development, of which 27 are already in
clinical trials. The findings of two recent National Academy of Science
reports that not only is a cure for hepatitis B within reach, but the
virus could be totally eliminated when coupled with public health
interventions to improve diagnosis, care and treatment. The most recent
report, titled ``A National Strategy for the Elimination of Hepatitis B
and C Phase Two Report'', recommends specific actions to hasten the end
of these diseases and lays out five areas--including research--to
consider in the national plan. HBF appreciates the opportunity to
provide testimony to you on behalf of these paramount needs of the
Nation.
[This statement was submitted by Timothy Block, Ph.D., President,
Hepatitis B Foundation.]
______
Prepared Statement of the HIV Medicine Association
Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee my name is Dr. Judith Feinberg, Fellow of the Infectious
Diseases Society of America, and Chair of the HIV Medicine Association
(HIVMA). I am pleased to submit testimony on behalf of HIVMA. HIVMA
represents more than 6,000 physicians, scientists and other healthcare
professionals around the country on the frontlines of the HIV epidemic.
Our members provide medical care and treatment to people living with
HIV in the U.S., lead HIV prevention programs and conduct research that
has led to the development of effective HIV prevention and treatment
options. Many of them are infectious diseases specialists who are now
on the frontlines of their community's coronavirus (COVID-19) response.
For the fiscal year 2021 appropriations process, we urge you to
increase funding for the Ryan White HIV/AIDS Program at the Health
Resources and Services and Administration (HRSA); increase funding for
the Centers for Disease Control and Prevention's (CDC) HIV, hepatitis
and STD prevention programs; increase investments in HIV research
supported by the National Institutes of Health (NIH); appropriate
additional funding to support the ``Ending the HIV Epidemic'' (EHE)
Initiative; and address workforce shortages that affect the
implementation of the EHE initiative as well as the response to the
COVID-19 pandemic. As the United States responds to the global COVID-19
pandemic, it is paramount to provide robust funding for these vital
programs which support global and domestic health security measures and
our public health infrastructure.
The COVID-19 pandemic has dramatically impacted public health
programs across the country. Critical programs are at their breaking
point as they continue to fight against COVID-19 while simultaneously
responding to their existing public health priorities. Many programs
have been forced to shift and re-focus their work. Any reduction in
Federal funding for state and local health departments, community-based
organizations and other entities that provide core HIV prevention,
diagnosis and treatment services deserve scrutiny and public comment by
those of us dealing with these issues firsthand.
The funding requests in our testimony largely reflect the consensus
of the Federal AIDS Policy Partnership, a coalition of HIV
organizations from across the country. For a chart of current and
historical funding levels, along with coalition requests for each
program, please click here: https://bit.ly/2SNWk7h.
Health Resources and Services Administration--HIV/AIDS Bureau:
HRSA's Ryan White HIV/AIDS Program provides medical care and
treatment services to over half a million people living with HIV. Ryan
White Program providers are also on the frontlines of the COVID-19
pandemic, and they need increased and sustained funding to meet the
current needs of their patients. Ryan White programs effectively engage
clients in comprehensive care and treatment, including increasing
access to HIV medication, which has resulted in 87 percent of clients
achieving viral suppression, the goal of HIV treatment that also
decreases transmission, compared to just 59 percent of all people
living with HIV nationwide.
Additional funding across the program's parts to help people living
with HIV maintain access to care and treatment during the economic
downturn, meet the new needs of people who now are without health
insurance, and prevent and contain the spread of COVID-19 is crucial.
To continue providing comprehensive, life-saving treatment and to bring
many more people into care through the Ending the HIV Epidemic
Initiative, we request a $263 million increase over fiscal year 2020
levels for the Ryan White HIV/AIDS Program for a total of $2.652
billion.
Policy--Ryan White Program Income:
Successful HIV prevention for individuals at risk for HIV is
available now through education, routine HIV screening, and ready
access to pre-exposure prophylaxis (PrEP), post-exposure prophylaxis
(PEP), harm reduction services, and other prevention tools, strategies
both known now and yet to be discovered. HIVMA supports the HIV/AIDS
Bureau in allowing Ryan White Program grantees to use their program
income to reduce new HIV infections and services that improve care and
treatment outcomes for people living with HIV, as long as the use of
that program income does not reduce access to current or critical HIV
care and treatment services provided by the grantee.
HIVMA urges an allocation of $225.1 million, or a $24 million
increase over current funding, for Ryan White Part C programs. Part C-
funded HIV medical clinics are struggling to meet the demand of
increasing patient caseloads. The team-based and patient-centered Ryan
White care model has been highly successful at improving clinical
outcomes for a population with complex healthcare needs. Persons with
HIV who receive Ryan White services are more likely to be prescribed
HIV treatment and to be virally suppressed, which also limits
transmission to others. Between 2010 and 2018, the viral suppression
rate for all Ryan White clients increased from 70 percent to 87
percent.\1\ We also know that the annual healthcare costs for persons
who are diagnosed late and/or do not have reliable access to care and
treatment are nearly 2.5 times greater than that of healthier persons
with HIV.\2\ Increased Ryan White Part C funding also is urgently
needed to meet the increasing demand for treatment for substance use
disorders and mental health at Ryan White clinics.
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\1\ Health Resources and Services Administration. Ryan White HIV/
AIDS Program Annual Client-Level Data Report 2016. https://
hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-
client-level-data-report-2016.pdf.
\2\ Gilman BH, Green, JC. Understanding the variation in costs
among HIV primary care providers. AIDS Care, 2008:20;1050-6. doi:
10.1080/09540120701854626.
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We also recommend funding the administration's request of $716
million in funding for the Ending the HIV Epidemic initiative--more
than double the 2020 request. The EHE Initiative will focus on 48
counties, the District of Columbia, San Juan, P.R., and seven rural
states where the incidence of new HIV infections are the highest. Last
year, those jurisdictions developed community-specific plans to combat
HIV that addresses the unique needs of each jurisdiction. The funds
appropriated last year will allow those plans to be scaled up.
Health Resources and Services Administration--Bureau of Primary Health
Care:
We recommend appropriating $87 million in new funding for HRSA's
Community Health Center program for the End the HIV Epidemic
initiative. Community health centers, especially those already funded
by the Ryan White Program, are critical entry points for people with
limited resources or without other access to care to get tested and
initiate PrEP. CDC estimates only 10 percent of those who could benefit
from PrEP have had it prescribed to them, and those who need it most--
black and Latino gay and bisexual men at high risk--are prescribed it
at a much lower rate.\3\ Scaling up PrEP among the most affected
populations in the EHE areas is critical to ending the HIV epidemic.
Without a vaccine on the horizon, PrEP for HIV is our most effective
prevention tool.
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\3\ CDC. HIV prevention pill not reaching most Americans who could
benefit--especially people of color. https://www.cdc.gov/nchhstp/
newsroom/2018/croi-2018-PrEP-press-release.html.
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Centers for Disease Control and Prevention--National Center for HIV/
AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and
Tuberculosis Prevention:
CDC serves as the command center for the nation's public health
defense system against emerging and reemerging infectious diseases.
From aiding in the surveillance, detection and prevention of the
current COVID-19 outbreak to playing a lead role in the control of
Ebola in West Africa and the Democratic Republic of the Congo to
pandemic flu preparedness, CDC is both a national and global expert
resource and response center, coordinating communications and action
and serving as the laboratory reference center. To meaningfully address
the HIV, viral hepatitis and STD epidemics, as well as the co-occurring
crisis of substance use disorder-especially injection drug use-- we
request a $647 million overall increase above fiscal year 2020 levels
for a total of $1.921 billion.
For the Division of HIV/AIDS Prevention (DHAP), we request a total
of $1.293 billion, which is a $365 million increase over fiscal year
2020 levels. DHAP conducts our national HIV surveillance and funds
state and local health departments and communities to conduct evidence-
based HIV prevention activities. As HIV prevention and surveillance
staff are shifted to work on the COVID-19 response, it is important
that the HIV prevention infrastructure is not impacted. CDC's national
surveillance system is a key tool in identifying people and regions
most impacted by the HIV epidemic, and tailoring prevention efforts to
meet the needs of those populations and prevent HIV transmission
clusters. CDC's high impact prevention strategies work, but with flat
funding, we cannot reach all the people at risk for HIV. We also
recommend appropriating the $371 million requested by the
administration for the Ending the HIV Epidemic initiative, which will
allow CDC to focus on efforts to scale up HIV testing, implement PrEP
programs, and immediately link people newly diagnosed with HIV to care
to preserve their health and prevent further spread.
Additionally, we urge the appropriation of the requested $58
million for the CDC to fund surveillance and programming to monitor and
prevent opioid-related infectious diseases. Funding for CDC's
Infectious Diseases and Opioid Epidemic programming increases
prevention, testing and linkage to care efforts to combat the increase
in new HIV and viral hepatitis B and C infections and the massive
increase in life-threatening bacterial infections such as endocarditis
that affects heart function, all of which have spiked in areas impacted
by the opioid crisis. The COVID-19 pandemic already has resulted in
increased drug overdoses, homelessness, and unemployment, worsening the
underlying conditions in regions already hard-hit by the drug epidemic.
Policy--Syringe Services Programs (SSP):
The fiscal year 2020 appropriations bill continued a harmful policy
rider that restricts the use of Federal funds for the purchase of
sterile syringes, which negatively impacts the ability of state and
local public health groups from expanding SSPs. SSPs have been shown to
limit HIV and hepatitis C infections and to increase the number of
people who enter treatment for substance use disorder, while at the
same time decreasing drug-related crime. HIVMA is opposed to
restrictions on Federal funding that ban SSPs from purchasing sterile
syringes.
For the Division of Viral Hepatitis (DVH), we request a total of
$134.0 million, which is a $95 million increase over fiscal year 2020
levels. CDC announced that in 2017 there were over 44,000 recognized
new cases of hepatitis C. New hepatitis B and C infections are being
driven by injection drug use throughout the country, and especially in
regions hardest hit by the opioid epidemic.\4\ We have the tools to
prevent this growing epidemic, but only significantly increased funding
can provide the needed level of testing, education, screening,
surveillance, treatment and on-the-ground syringe service programs
needed to reduce new infections, and to put the U.S. on the path to
eliminate hepatitis as a public health threat.
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\4\ Centers for Disease Control and Prevention. Viral Hepatitis
Surveillance Report 2016. https://www.cdc.gov/hepatitis/statistics/
2016surveillance/pdfs/2016HepSurveillanceRpt.pdf.
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For the Division of STD Prevention (DSTDP), we request a total of
$240.8 million, which is an $80 million increase over fiscal year 2020
levels. Data released in October 2019 by the CDC shows that after 5
years of dramatic increases, combined cases of syphilis, gonorrhea, and
chlamydia reached all-time highs in the U.S. Tragically, congenital
(mother-to-child) syphilis increased by 40 percent in 1 year, leading
to a 22 percent increase in newborn deaths related to congenital
syphilis. These historic increases have created a public health
emergency with devastating long-term health consequences, including
infertility, cancer, HIV transmission, and infant and newborn deaths.
National Institutes of Health--Office of AIDS Research:
In order to continue funding 21st-century discoveries that will
help us end the HIV epidemic, such as improved HIV prevention
modalities and treatment options, we ask that at least $3.502 billion
be allocated for HIV research in fiscal year 2021, an increase of $426
million. This level of funding is vital to sustaining the pace of
research that will improve the health and quality of life for millions
of people in the U.S. and abroad. Flat funding of HIV research from
fiscal year 2015 to fiscal year 2020 threatens to slow progress toward
a vaccine and a cure, erode our capacity to sustain our nation's
leadership in HIV research and innovation, and discourage the next
generation of scientists from entering the field.
Indian Health Service--Eliminating HIV and Hepatitis C in Indian
Country:
Last year, the community and administration requested $25 million
to address the disparate impact HIV and hepatitis C have on American
Indian/Alaska Native populations through the Indian Health Service.
Between 2011 and 2015, there was a 38 percent increase in new HIV
diagnoses among the AI/AN population overall, and a rise of 58 percent
among AI/AN gay and bisexual men. We were disappointed that the $25
million request was not included in the final fiscal year 2020 funding
and hope that this can be remedied in fiscal year 2021. This year, we
urge you to fund the EHE Initiative work within Indian Health Service
at $27 million.
COVID-19 Response Funding Request:
As the Senate examines budget requests and the needs of Federal
spending programs, immediate supplemental funding for programs
negatively affected by COVID-19 is urgently needed. As the impacts of
the pandemic spread and accelerate throughout the country, additional
funding for the Ryan White Program and the CDC is needed. Investment in
the Ryan White program is critical to ensure that no person living with
HIV loses access to services during the COVID-19 pandemic and in the
economic aftermath. To meet these immediate needs, Congress should
allocate $500 million in supplemental funding to be divided amongst all
parts of the Ryan White Program and at least $100 million toward the
CDC's Division of HIV Prevention in the next COVID-19 response package.
Conclusion:
Thousands of frontline providers, scientists and public health
professionals who are working to save lives, contain the spread of
disease and inform responses to the threat to health, stability and
security worldwide are currently involved on the COVID-19 response.
These same professionals who are actively orchestrating the response to
COVID-19 are also the same dedicated professionals who are responding
to the EHE initiative--from the White House to state and local
government- compounding strains on a limited workforce. The current
pandemic highlights the importance of preparing for infectious diseases
outbreaks by fully funding programs that support public health services
and infrastructure so that we are better prepared for the next
pandemic.
We are concerned about the long-term impact COVID-19 will have on
our nation's healthcare infrastructure and clinical workforce and the
impact this may have on the administration's End the HIV Epidemic
initiative. We have the tools to end the HIV epidemic in the U.S. To
accomplish this, we must substantially increase funding to support
comprehensive prevention and care programs, grow a qualified workforce
and create a healthcare system which routinely screens people for HIV
and provides access to those living with HIV uninterrupted access to
care and treatment. We need to invest in a strong public health
infrastructure and protect Americans from public health threats and
emergencies. With congressional support we can be better prepared for
preventing future outbreaks and pandemics and get on track to end HIV
as an epidemic. Thank you for your time and consideration of these
requests. Please contact me or Jose A. Rodriguez, Senior Policy &
Advocacy Manager, at [email protected] if you have any questions or
need additional information.
[This statement was submitted by Judith Feinberg, MD, FIDSA, Chair,
HIV
Medicine Association.]
______
Prepared Statement of HIV+HEP Policy Institute
On behalf of the HIV+Hepatitis Policy Institute, we respectfully
submit this testimony in support of increased funding for domestic HIV
and hepatitis programs in the fiscal year 2021 Labor, HHS spending
bill. The HIV+Hepatitis Policy Institute is a leading HIV and hepatitis
policy organization promoting quality and affordable healthcare for
people living with or at risk of HIV, hepatitis, and other serious and
chronic health conditions.
While our nation and the entire world are currently battling COVID-
19, where the science is in its infant stage, we have the science to
end two other infectious diseases that have been impacting our country
for decades: HIV and hepatitis C. While there still is no cure or
vaccine for HIV, we have preventive tools along with treatments that
suppress the virus and together can bring the number of new infections
down to a point that we can end HIV. For hepatitis C, there are
curative treatments. However, Federal leadership and funding for our
public health system is necessary to ramp up efforts to address these
two epidemics. The programs and funding increases detailed below are
pivotal to our nation's ability to end both HIV and hepatitis.
The healthcare workers, community-based organizations, and state
and local governments who have been on the front line of the COVID-19
response are the same people and organizations that have been
responsible for planning and implementing our nation's response to both
HIV and hepatitis and will continue to be once the current crisis
subsides. Funding for them to address infectious diseases, such as HIV
and hepatitis and others in the future, will particularly be necessary
in the year ahead.
funding public health programs outside budget caps
Our nation's public health infrastructure has been underfunded for
many years. Now is the time to provide increased funding to allow
Federal agencies, state and local jurisdictions, and community
organizations on the ground the resources and capacity to build
interconnected
and state-of-the-art surveillance, prevention, screening, and
educational programs. In order to provide this necessary funding, the
HIV+Hepatitis Policy Institute strongly supports funding critical
public health programs, including those for ending HIV and hepatitis in
the United States, outside of the Budget Control Act spending caps,
similar to the creation of the proposed Health Defense Operations (HDO)
fund. Without the necessary funding we will never end these infectious
diseases or be prepared for future epidemics.
HIV and hepatitis programs across the nation are experts in best
practices related to infectious disease prevention, control, and
treatment. Jurisdictions across the nation are discussing how to
incorporate and bundle screening and testing for COVID-19 infection
with the same services for HIV, hepatitis, and sexually transmitted
infections. Programs addressing HIV and hepatitis also have significant
experience working with populations currently disproportionately
affected by COVID-19 including homeless and racial and ethnic
minorities.
ending the hiv epidemic
Announced in the 2019 State of the Union, the Ending the HIV
Epidemic (EHE) initiative is a historic effort to reduce new HIV
infections by 75 percent in the next 5 years and by 90 percent in the
next 10 years. The initiative focuses on four key areas: diagnosing all
individuals with HIV as early as possible after infection; treating the
infection rapidly after diagnosis, achieving sustained viral
suppression; protecting individuals at risk for HIV using proven
prevention approaches such a Pre-exposure Prophylaxis (PrEP); and
responding rapidly to detect and respond to growing HIV clusters.
We thank the committee for supporting funding for the first year of
this initiative. Funding is being distributed to the fifty-seven target
Phase-1 cities and states, which have all developed Ending the HIV
Epidemic plans. They are ramping up screening to diagnose people
unaware of their HIV status and link them to antiretroviral treatment
and providing PrEP to those who are at high risk of HIV. For fiscal
year 2021, we ask that you fully fund the second year of the initiative
to continue to scale up the EHE initiative by supporting the
president's budget request of $716 million, an increase of $450 million
from fiscal year 2020.
With proposed fiscal year 2021 funding of $371 million, an increase
of $231 million, the Centers for Disease Control and Prevention (CDC)
will transition from planning to implementation and intensify work
already begun in the fifty-seven target jurisdictions. CDC grants will
drive additional testing with the goal of doubling the number of new
HIV diagnoses rapidly treated with antiretroviral therapy to maintain
health and prevent additional HIV transmissions. Funded jurisdictions
will use pharmacy data, telehealth, mobile testing, and new science-
based networks to ensure individuals enter and adhere to care.
An increase of $182 million for a total of $302 million will allow
the Health Resources and Services Administration (HRSA) to expand
treatment and prevention services through its vast network of
providers. With $137 million, an increase of $87 million, the Bureau of
Primary Health Care (BPHC) will fund over 300 additional community
health centers to expand the provision of PrEP services, bringing the
total number of health centers funded by the initiative to over 500.
The Ryan White HIV/AIDS Program would receive an increase of $95
million to the amount of $165 million to reach over 43,000 people
living with HIV who are not yet in care or who have not yet received an
HIV diagnosis. HRSA's Ryan White Program is a critical safety net
program providing care, treatment, and support services to over 500,000
people living with HIV. Almost 86 percent of Ryan White clients are
virally suppressed, far exceeding the national average of nearly 60
percent.
The EHE is a critical targeted component of our nation's response
to the HIV epidemic; however, we must continue to invest in ongoing HIV
programs throughout the nation. This includes the CDC's HIV Prevention
Programs (including the Division of School and Adolescent Health),
HRSA's Ryan White HIV/AIDS Programs (including the AIDS Drug Assistance
Program), the Minority HIV/AIDS Initiative, AIDS Research at the NIH,
and the Teen Pregnancy Prevention Program (TPPP).
Each of these programs is necessary to address the HIV epidemic in
our nation and each is being negatively impacted by the ongoing COVID-
19 pandemic. State and local health departments' staff is being
detailed to deal exclusively with COVID-19 and facing furloughs to make
up for budget shortfalls. Programs that rely on in-person visits for
assessments and testing are having to purchase new equipment to
increase telehealth services and organizations are having to work with
clients and their families to ensure access to broadband and mobile
devices to ensure consistent access. Increased funding will help our
HIV infrastructure be able to provide necessary services in the ``new
normal.''
viral hepatitis
Additionally, we respectfully request that you provide increased
funding for viral hepatitis programs at the CDC. The CDC estimates that
more than 4.5 million people in the United States live with hepatitis B
(HBV) or hepatitis C (HCV), with nearly half unaware they are living
with the disease. The opioid epidemic has significantly increased the
number of viral hepatitis cases in the United States, with new cases of
HCV rising 374 percent between 2010 and 2017. Newly released CDC data
show that in 2018 there were an estimated 50,300 new hepatitis C
infections, which represents a three-fold increase in the rate of new
infections over the last decade. The CDC also found that due to the
ongoing opioid epidemic and injection drug use, there are now just as
many new infections among Millennials as Baby Boomers, who in the past
bore the brunt of all new cases. Therefore, the CDC is now recommending
that every adult eighteen and older be tested at least once for
hepatitis C, plus all women during each pregnancy, and those at risk.
From 2006 to 2018, increases in reported cases of acute HBV
infection range from 56 percent to 457 percent in states most heavily
impacted by the opioid crisis. From 2014-2017, the number of reported
cases of hepatitis A increased by 271 percent. There are several
curative treatments available for HCV, but individuals must have access
to screening and linkage to care programs to be able to take advantage
of these medications.
CDC Division of Viral Hepatitis
The viral hepatitis programs at the CDC are severely underfunded,
receiving only $39 million-far short of what is needed to build and
strengthen our public health response to hepatitis. Currently, the CDC
is only able to fund fourteen jurisdictions to conduct enhanced
hepatitis surveillance, which is harming our nation's ability to
respond to the infectious disease consequences of the opioid epidemic.
Additional resources would allow the CDC to enhance testing and
screening programs, conduct additional provider education, enhance
clinical services specific to hepatitis at sites serving vulnerable
populations, and increase services related to hepatitis outbreaks and
injection drug use. We urge you to provide the CDC Division of Viral
Hepatitis with $134 million, an increase of $95 million over fiscal
year 2020 enacted levels.
The CDC recently released a Notice of Funding Opportunity
announcement to fifty-eight jurisdictions asking them to prepare ending
hepatitis plans that focus on education, surveillance, screening,
linkage to care, and syringe service programs. Unfortunately, since the
state and local jurisdictions are responding to COVID-19, it had to
been withdrawn. Later this year, the administration is expected to
release an updated national hepatitis strategy with a stated goal to
end hepatitis. However, the current level of funding is completely
inadequate for these jurisdictions to even begin to discuss ending
hepatitis--particularly hepatitis C, which has a cure, and hepatitis B,
which has a vaccine and effective treatments.
CDC's Eliminating Opioid-Related Infectious Diseases Program
This CDC program focuses on addressing the infectious disease
consequences of increased rates of injection drug use due to the opioid
crisis. Providing full support for this program is another key step in
preventing new cases of viral hepatitis and HIV and putting the country
on the path towards elimination. We urge the committee to fund this
program to eliminate opioid-related infectious diseases at no less than
$58 million, an increase of $48 million, and the amount proposed in the
president's budget.
syringe service programs (ssps)
We also ask that the committee support ending any prohibition on
the use of Federal funds to purchase sterile needles or syringes for
SSPs. A wealth of scientific evidence has shown that SSPs reduce the
spread of infectious diseases, such as HIV and hepatitis. Full Federal
funding for these programs will only serve to make the programs
stronger and more effective.
In conclusion, we urge the committee to continue its investment in
our nation's public health infrastructure specifically as it relates to
addressing the ongoing HIV and HCV epidemics. Fortunately, we have the
tools available to end both these epidemics; however, we must provide
the necessary resources to achieve these goals.
[This statement was submitted by Carl Schmid, Executive Director,
HIV+HEP Policy Institute.]
______
Prepared Statement of Horner Richard deg.
Prepared Statement of Richard Horner
I am the mother of an adult child with schizophrenia. I would give
anything to have a cure or at least better treatment for this awful
brain disease that often leaves its victims in jail, homeless, or
hospitalized; and destroys families. This serious brain illness is not
rare as many believe, but affects 1.1 percent of the population and
that statistic has been true since first recorded, and is basically the
same throughout the world. Its cause is primarily genetic, but is
believed to be triggered by environmental factors. Schizophrenia (and
schizoaffective disorder) robs the person of motivation, concentration,
and cognition, as well as presenting positive symptoms such as
hallucinations and delusions. The disease usually occurs in late teen
or early adult years, just when our bright and beloved children are
preparing for jobs, universities, careers, serious relationships.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
I beg you to have NIMH prioritize research for the 5 percent of our
population that has serious mental illnesses that include chronic
depression (the leading cause of disability in the U.S.), schizophrenia
(and schizoaffective disorder), and bipolar illness. This makes sense
because it's the humane thing to do, but it also makes good fiscal
smarts. The most severe mental illnesses account for the most dollars
spent in hospitals, jails, prisons, emergency rooms, and services for
the homeless.
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of
Health budget resolution in December 2019, which brings the
NIMH budget to just under $2 billion and represents a 35
percent increase since 2015, one of the largest increases in
the history of the NIMH. Yet, during the 5 years from 2015
through 2019, NIMH funded a total of TWO new drug treatment
trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from
2006 through 2010 when NIMH funded 48 such trials . . .''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses identifying examples of research initiatives the NIMH
could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans. Those with the most severe
forms of mental illness deserve to be prioritized.
Thank you for your consideration,
Sincerely.
______
Prepared Statement of the Human Factors and Ergonomics Society
On behalf of the Human Factors and Ergonomics Society (HFES), we
are pleased to provide this written testimony to the Senate
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies for the official record. HFES urges the Subcommittee
to provide $471 million for the Agency for Healthcare Research and
Quality (AHRQ) and a minimum of $354.8 million for the National
Institute for Occupational Safety and Health (NIOSH), including $32
million for the Education and Research Centers (ERCs), in fiscal year
2021.
AHRQ funds research to protect and promote patient safety and care,
while identifying and evaluating efficiencies to save lives and reduce
costs. HFES requests $471 million, which is consistent with the fiscal
year 2010 level adjusted for inflation. This funding level will allow
AHRQ to rebuild portfolios terminated after years of cuts. HFES also
urges the Subcommittee to continue to fund AHRQ as its own agency,
rather than integrating it into the National Institutes of Health
(NIH), as proposed in the President's fiscal year 2021 budget request.
Additionally, HFES requests $354.8 million for NIOSH, including $32
million for the Education and Research Centers (ERCs). NIOSH supports
education and research in occupational health through academic degree
programs and research opportunities. With an aging occupational safety
and health workforce, ERCs are essential for training the next
generation of professionals. The Centers establish academic, labor and
industry research partnerships to achieve these goals. Currently, the
ERCs are responsible for supplying many of the country's OSH graduates
who will go on to fill professional roles.
The fiscal year 2021 President's budget request proposes reducing
the NIOSH budget and eliminating many NIOSH programs, which would limit
the ability of workers to avoid exposures that can result in injury or
illnesses, push back improved working conditions, eliminate
occupational safety and health educational services to U.S. businesses,
and ultimately raise healthcare costs.
HFES and its members recognize and appreciate the challenging
fiscal environment in which we as a nation currently find ourselves.
However, we believe strongly that investment in scientific research
serves as an important driver for innovation and the economy as well as
for protecting and promoting the health, safety, and well-being of
Americans. We thank the Subcommittee for its longtime recognition of
the value of scientific and engineering research and its contribution
to innovation and public health in the U.S.
the value of human factors and ergonomics science
HFES is a multidisciplinary professional association with over
4,500 individual members worldwide, including psychologists and other
scientists, engineers, and designers, all with a common interest in
designing safe and effective systems and equipment that maximize and
adapt to human capabilities.
For over 50 years, the U.S. Federal Government has funded
scientists and engineers to explore and better understand the
relationship between humans, technology, and the environment.
Originally stemming from urgent needs to improve the performance of
humans using complex systems such as aircraft during World War II, the
field of human factors and ergonomics (HF/E) works to develop safe,
effective, and practical human use of technology. HF/E does this by
developing scientific approaches for understanding this complex
interface, also known as ``human-systems integration.'' Today, HF/E is
applied to fields as diverse as transportation, architecture,
environmental design, consumer products, electronics and computers,
energy systems, medical devices, manufacturing, office automation,
organizational design and management, aging, farming, health, sports
and recreation, oil field operations, mining, forensics, and education.
With increasing reliance by Federal agencies and the private sector
on technology-aided decision-making, HF/E is vital to effectively
achieving our national objectives. While a large proportion of HF/E
research exists at the intersection of science and practice--that is,
HF/E is often viewed more at the ``applied'' end of the science
continuum--the field also contributes to advancing ``fundamental''
scientific understanding of the interface between human decision-
making, engineering, design, technology, and the world around us. The
reach of HF/E is profound, touching nearly all aspects of human life
from the healthcare sector, to the ways we travel, to the hand-held
devices we use every day.
conclusion
HFES urges the Subcommittee to provide $471 million for AHRQ and
$354.8 million for NIOSH, including $32 million for the Education and
Research Centers (ERCs) in fiscal year 2021. These investments fund
important research studies, enabling an evidence base, methodology, and
measurements for improving healthcare, safety, and public health for
Americans.
On behalf of the HFES, we would like to thank you for the
opportunity to provide this testimony. Please do not hesitate to
contact us should you have any questions about HFES or HF/E research.
HFES truly appreciates the Subcommittee's long history of support for
scientific research and innovation.
[This statement was submitted by Susan Hallbeck, PhD, President,
and Steven C. Kemp, CAE, Executive Director, Human Factors and
Ergonomics Society.]
______
Prepared Statement of Hurn Shauna
Prepared Statement of Shauna Hurn deg.
My brother Elis Matetich is 38 years old & schizoaffective but does
not believe he is sick (anosognosia) and will not take his medication.
He was on disability almost 20 years ago, but then got a job and was
employed for over 10 years (and was off disability) living
independently and taking his meds most the time. Over the years he had
become more isolated/adverse to coming to family gatherings and more
argumentative and difficult to be around.
Last year (2019) he lost his job, went off his meds for many
months, and threatened the life of my stepdad, and believes our mom is
a demon who wishes him harm. He has never been threatening or violent
toward family prior to 2019 and this devastated us. Subsequently we got
him hospitalized twice (two weeks each time/back to back) and were
supposed to go to court against him for his threats to our family, but
the court case was dropped.
--He got in four fist fights while at Navos Behavioral Hospital, West
Seattle, WA (Sep 2019) but was released in just 2 weeks (after
many months of being unmedicated).
--He was released with no aftercare plan, or instruction to family or
anyone else, on how he was to take his medication. After his
release he did not take his medication.
--Our family worked with the Crisis team to get him in the hospital
again, this time Fairfax Kirkland, WA (Oct 2019).
--Upon his release he had been resistant to taking any kind of
financial aid or help from family unless completely on his
terms, he proceeded to spend the last of any money he had and
wouldn't allow family to help him apply for disability.
The past 2 months (Apr 2020-Current) he has been off his meds again
and in crisis.
--He believes there is a devil in his apartment and that family
members have evil powers and intend to harm him.
--He has gotten his two cars impounded in one weekend (while fleeing
from the devil in his closet and the evil powers he believes
are after him).
--He slept in bushes for 3 nights because he was scared to go to his
apartment because he thinks the devil is in it (and because he
doesn't know how to get back home//he gets disoriented and does
not actually know where he is, even though he has a smart phone
he can use).
--In the last 2 weeks he has not been eating or drinking because he
is suspicious of food & water. He has probably lost 40-50 lbs
within a short timeframe
--He received stimulus money but says someone stole his wallet and he
did not take any action with the bank to get a new debit card
or with DSHS to apply for food stamps. (He claims to know how
to do these things but why wouldn't he do them if he was
starving?). Our family can't help him get these things back
without his consent which he won't give.
--He has been picked up by police multiple times, was charged with a
DUI, but only jailed a few hours.
--Every time I offer to help he insists he can and will do things on
his own, but then he doesn't do it. Afterwards he blames other
people or things for not following through.
--I've been attending all of his counseling appointments at Valley
Cities Federal Way WA to try to get him on track to take
injection medication and regain his life. But he is resistant
to everything.
It's been about 2 months straight while he is in psychosis and
unmedicated where I have been working with him to try to get him to
voluntarily ask for help and get on injection medication. I am seeing
him fall apart before my eyes and see that he is someone incapable of
living without help. Except that he's 38 years, a full grown man with a
mind of his own, that doesn't believe he needs help. It's a comparable
situation to a grandparent with Dementia or Alzheimer's. If he is able
to get stabilized on medication he might be able (over time) to get a
job again, but he is nowhere near that right now, my brother is barely
surviving and it's unclear if he will ever recover from this.
I am overwhelmed at the level of care my brother needs and
depressed that the Healthcare system falls completely short of helping
my brother. I am upset the laws will criminalize my brother if he will
not get treatment, but how will he accept treatment if he does not
believe he is ill? The gaps in the healthcare system and government are
putting the tremendous burden on the families to care for our
schizophrenic/schizoaffective loved ones. How can someone with a brain
disorder (schizoaffective) and/or anosognosia can be expected to
voluntarily take medication? Everything I try to help my brother with,
requires his consent but he will not give it, so I'm set up to fail/to
try to convince a psychotic person to do things to manage their life. I
have had so much advice from others to ``work around the system'' to
``stop helping my brother stay afloat financially'' (which would make
him homeless) so that he can get ``help''. Basically, wait for his
brain disorder to criminalize him, so that he will qualify for
financial aid and treatment. Or they suggest we try to take away his
legal rights by going to court against him. This is a huge moral
conundrum for us as a family members, forcing us against our loved ones
who need help!!! It's easy on the outside to tell someone to do this,
but imagine it's your own parent or sibling. How would you feel about
turning against them in order to help them? The severely mentally ill
need a village, they need hope and a place in our communities... a
system that requires them to take medication in order to keep a job to
contribute to society (for those who are capable) or medication to get
food (for those who can't work). Us, as family members, should not be
forced to prove our loved ones are ill and need help. Other physical
illnesses are treated//but not mental illness. Do you know how
invalidating it is to have no hope for treatment for your loved one, no
way to help them or make them safe? To wait until their illness gets so
bad you are living in fear of the future? Our family should not be
forced to take on the financial burden of housing them especially while
they unmedicated, undergoing psychosis and resistant to help. But it is
the disease causing this!!! But what about, us the family, who become
targets of their delusions?? This is not safe for us. ``Prove he is
going to kill himself or someone else''. ``Call 911'' they say. Or we
force our loved ones to live on the streets and then must live with the
guilt. The families are left with no rights to help their severely
mentally ill loved ones, and no protection from them either. This is a
human rights issue that needs to be addressed. Mental Illness is real.
Especially as the violence and mass shootings in our country escalate,
we need to start addressing mental illness that turns people into
criminals.
Prepared Statement of the Infectious Diseases Society of America
On behalf of the Infectious Diseases Society of America (IDSA),
which represents more than 12,000 physicians, scientists, public health
practitioners and other providers involved in infectious diseases
prevention, care, research and education, I urge the Subcommittee to
provide full fiscal year 2021 funding for public health and biomedical
research activities that save lives, contain healthcare costs and
promote economic growth. IDSA asks the Subcommittee to provide $8.3
billion for the Centers for Disease Control and Prevention (CDC), $44.7
billion for the National Institutes of Health (NIH), $230 million for
the Biomedical Advanced Research and Development Authority (BARDA)
Broad Spectrum Antimicrobials and CARB-X programs, and $140 million for
the Strategic National Stockpile Special Reserve Fund program.
centers for disease control and prevention
Antibiotic Resistance Solutions Initiative
We urge at least $200 million in funding for the Initiative in
fiscal year 2021. IDSA members see the impact daily that antimicrobial
resistance (AMR) has on patients. Antibiotic resistance is one of the
greatest public health threats of our time. Drug-resistant infections
sicken at least 2.8 million each year and kill at least 35,000 people
annually in the United States. Antibiotic resistance accounts for
direct healthcare costs of at least $20 billion. If we do not act now,
by 2050 antibiotic-resistant infections are predicted to be the leading
cause of death. Secondary bacterial infections caused by resistant
bacteria and fungi are complicating care for seriously ill patients
including those with COVID-19. Antibiotic resistance threatens the
safety of major medical advances, including cancer chemotherapy, organ
and bone marrow transplants, caesarean sections, and other surgeries--
all of which carry risk of infection. The Federal response to AMR must
be increased to prevent and detect multi-drug resistant infections. The
requested funding would allow the expansion of efforts at state, local
and territorial health departments to prevent, detect, contain and
respond to multi-drug resistant infections. Funding would also support
implementation of antimicrobial stewardship programs (newly required by
CMS at hospitals) to reduce inappropriate antibiotic use and improve
patient outcomes. Since fiscal year 2016, CDC has provided $300 million
to 59 state and local health departments to increase capacity for
faster response to outbreaks and emerging infections. Additionally,
this funding improved antibiotic use, increased state and regional
laboratory capacity to rapidly detect resistant infections, and
enhanced tracking of healthcare-associated infections. These
substantial payoffs mean a clear net positive for the Federal budget to
recoup the direct costs of the program, but a deeper investment in
fiscal year 2021 is needed to effectively address current and newly
emerging threats and prepare for future challenges.
Advanced Molecular Detection (AMD)
AMD strengthens CDC's epidemiologic and laboratory expertise to
effectively detect and respond to the ever-expanding universe of
emerging diseases and deadly pathogens. Requested fiscal year 2021
funding of at least $37.5 million is required to ensure AMD has updated
cutting-edge technology to allow CDC to more rapidly determine where
emerging diseases come from, whether microbes are resistant to
antibiotics, and how microbes are moving through a population.
Additional funding would help ensure state and local health departments
have enhanced expertise to harness DNA sequencing of pathogens to ramp
up early detection and response to surging disease outbreaks. AMD is
integrating next-generation sequencing in the COVID-19 response, which
provides a clearer picture of how the outbreak is evolving and how
cases are connected, allowing more effective targeting of response
efforts. AMD promotes more effective antimicrobial use when used by
antimicrobial stewardship programs.
National Healthcare Safety Network
Fiscal year 2021 funding of at least $25 million for the National
Healthcare Safety Network (NHSN) will enable CDC to expand tracking of
healthcare-associated infections (HAIs), antibiotic use, and antibiotic
resistance. The NHSN is the most widely used HAI tracking system in the
country and provides facilities, states, regions, and the nation with
data needed to identify problem areas and best practices, and to
measure and drive the progress of prevention and stewardship efforts.
NHSN is playing a central role in the COVID-19 response. Nursing homes
are required by the Centers for Medicare and Medicaid Services to
report cases of COVID-19 directly to NHSN, and are strongly encouraged
to share information about confirmed COVID-19 cases with patients,
residents, families, and loved ones. The responses will be uploaded
into NHSN and will complement existing state-level reporting
requirements, helping the Federal Government collect nationwide data to
assist in COVID-19 response activities.
This new NHSN capability for nursing homes follows the launch of
CDC's NHSN Hospital Capacity and Patient Impact COVID-19 module. Given
the breadth of reporting capability of NHSN, CDC was able to quickly
adapt the system to easily collect nursing home data and report it to
state health departments and other parts of the Federal Government
emergency response for action.
Additionally, as of April 1, 2018, 776 out of the over 5,500 U.S.
hospitals have voluntarily reported antibiotic use data, and 317
hospitals have reported antibiotic resistance data to the CDC NHSN
Antibiotic Use and Resistance (AUR) module. While this represents
progress, it falls strikingly short of the stated goal in the National
Action Plan for Combating Antibiotic Resistant Bacteria for 95 percent
of hospitals to report these data by 2020. Comprehensive and real-time
data on antibiotic use and resistance are essential to inform and
evaluate antibiotic stewardship activities and other efforts to address
AMR.
CDC Center for Global Health
IDSA urges the Subcommittee to provide at least $624 million in
fiscal year 2021 funding, including $225 million for CDC's Division of
Global Health Protection to prevent, detect and respond to infectious
disease threats in the places they originate before they reach American
soil. As the response to the devastating global COVID-19 pandemic
continues, global health security efforts are critical for ensuring
America's health security, including strengthening laboratory
capacities, disease surveillance and field epidemiology activities in
resource-limited countries. Sustained funding for the Division of HIV
and TB, a key implementer of PEPFAR, is needed to facilitate access to
life-saving antiretroviral treatment for millions, including to
pregnant women living with HIV to prevent transmission to their
children. The Center works to find, cure and prevent TB, eliminate the
global burden of malaria, stop poliovirus transmission, and reduce
mortality from vaccine-preventable diseases like measles. The CDC
Center for Global Health addresses more than 400 diseases and health
threats in 60 countries.
Immunization Program
IDSA supports funding of $710 million for the Section 317
Immunization Grant Program that would allow healthcare providers to
obtain necessary vaccines. The program helps decrease the number of
children and adults who die each year from vaccine-preventable
illnesses and helps prevent outbreaks of diseases due to inadequate
vaccination rates. We must strengthen our nation's vaccine
infrastructure to prepare to drive access and uptake of a COVID-19
vaccine once one is developed.
Since COVID-19 distancing restrictions and business closures were
implemented, childhood immunization rates have dropped considerably due
to fears of contracting the virus. During the week of April 5, the
administration of MMR vaccines dropped 50 percent; diphtheria and
pertussis vaccines dropped 42 percent; and HPV vaccines dropped 73
percent. Even before this pandemic, vaccine hesitancy began fueling a
resurgence of vaccine-preventable diseases such as measles, making this
a critically important time to invest in a comprehensive response. Many
communities have been deemed ``at risk'' for outbreaks of measles and
other vaccine-preventable illnesses due to insufficient vaccination
rates. During January 1-October 1, 2019, a total of 1,249 measles cases
and 22 measles outbreaks were reported in the United States. This is
the greatest number of cases reported in a single year since 1992.
Infectious Diseases Rapid Response Fund
The quick spread of emerging infectious diseases makes clear the
need for the Response Fund in regular fiscal year 2021 appropriations.
At the beginning of the COVID-19 emergency, the Response Fund allowed
HHS to begin initial activities without waiting for congressional
action. An investment of at least $85 million is needed to ensure
agencies, led by the CDC can move forward with initial response
activities to contain the spread of infection; treat infected
individuals and launch research for vaccines, diagnostics and
therapeutics.
Infectious Diseases and Opioids
IDSA urges $58 million in funding in fiscal year 2021 to address
opioid addiction, HIV/AIDS, and hepatitis. We are increasingly
concerned about how the opioid crisis is driving higher rates of
infectious diseases including hepatitis C, endocarditis, HIV,
pneumonia, and skin, soft tissues, bone and joint infections. Before
COVD-19, some of our members were reporting that 25 to 50 percent of
their inpatient hospital consultations are for infections in patients
who inject drugs, and this problem has not gone away.
Vector-Borne Diseases
We advise funding of $66 million for vector-borne diseases efforts
to help define disease extent and to reduce the impact of infections
such as the Zika virus and tick-borne illnesses including Lyme disease.
CDC found that the number of disease cases in the U.S. due to mosquito,
tick or flea bites tripled from 2004 to 2016, demonstrating the need
for increased funding to support evidence-based surveillance and
prevention efforts.
assistant secretary for preparedness and response (aspr)
Biomedical Advanced Research and Development Authority
At least $230 million in fiscal year 2021 for the BARDA broad
spectrum antimicrobials program and CARB-X is needed to leverage
public/private partnerships to develop products that directly support
the government-wide National Action Plan for Combating Antibiotic-
Resistant Bacteria. These programs have been successful in developing
new FDA-approved antibiotics. Despite this progress, the pipeline of
new antibiotics in development is insufficient to meet patient needs,
and $230 million in funding is needed to help prevent a post-antibiotic
era in which we lose many modern medical advances that depend upon the
availability of antibiotics, such as cancer chemotherapy, organ
transplants and other surgeries. There is early evidence of secondary
bacterial infections among COVID-19 patients. It is, as yet, unclear
exactly how significant secondary bacterial and fungal infections will
be in this pandemic, but serious viral respiratory infections typically
pose some risk of these secondary infections that increases when
patients need to be hospitalized or placed on a ventilator. This report
on 191 patients found that 50 percent of patients who died had a
secondary infection.
Project BioShield
We request at least $140 million in fiscal year 2021 for the
Project BioShield Special Reserve Fund (SRF) which is positioned to
support the response to public health threats, including AMR. BARDA and
NIAID efforts have been successful in helping companies bring new
antibiotics to market, but those companies now struggle to stay in
business and two filed for bankruptcy in 2019. In December 2019, SRF
funds supported a contract for a company following approval of its
antibiotic--a phase in which small biotechs that develop new
antibiotics are particularly vulnerable. Additional funding is needed
to expand this approach to better support the antibiotics market.
national institutes of health
National Institute of Allergy and Infectious Diseases (NIAID)
Within NIH, NIAID should be funded at $6.345 billion, with $600
million for AMR research to support the continued response to COVID-19,
and research for new rapid diagnostics, vaccines, and therapeutics for
all ID threats. With increased investment to combat AMR, NIAID is
poised to ramp up valuable research into how to counter the ever-
evolving threat posed by resistant microbes. There are significant
research needs with regard to COVID-19, including vaccines and
therapeutics, better diagnostics, and epidemiologic and pathogenesis
studies. NIAID is also planning to expand efforts to support the next
generation of researchers, but this will be challenging without
additional resources. Funding at the requested level would enable NIAID
to increase funding and success rates for early and mid-career research
awards, and pilot a new innovator award to promote bold new ideas from
early stage investigators. This kind of thinking is precisely what is
needed to address growing ID threats.
conclusion
Thank you for the opportunity to submit this statement. The
nation's ID physicians and scientists rely on strong Federal
partnerships to keep Americans healthy and urge you to support these
efforts. Please forward any questions to Lisa Cox at
[email protected].
[This statement was submitted by Thomas File, MD, FIDSA, President,
Infectious Diseases Society of America.]
______
Prepared Statement of the International Association of Fire Chiefs
On behalf of the more than 13,000 chief fire and emergency medical
services (EMS) officers of the International Association of Fire Chiefs
(IAFC), I urge you to provide $20 million in fiscal year 2021 for the
Rural EMS Training and Equipment Assistance (REMSTEA) program, also
known as the Supporting and Improving Rural EMS Needs (SIREN) program,
which is housed within the Substance Abuse and Mental Health Services
Administration (SAMHSA). America's rural fire departments desperately
need assistance in sustaining their operations following the
devastation that was brought upon on their budgets by the economic
impact stemming from the SARS-CoV-2 virus and it resulting illness,
COVID-19. The SIREN program is one of the most effective ways in which
Congress can provide direct assistance to these rural fire and EMS
agencies to purchase personal protective equipment (PPE), procure
medications, and recruit and train personnel. Funding the SIREN program
at $20 million in fiscal year 2021 will enable these agencies to be
prepared for future waves of COVID-19 as well as the ``routine''
volumes of critically ill and injured patients which seek emergency
medical care each day.
As you know, EMS-related calls account for 80 percent of all fire
department calls for service nationwide. EMS is even more important in
rural and frontier communities where firefighters and EMS personnel
might be the only the only healthcare provider that a critically ill or
injured patient sees in the first hour of their emergency. Long
transport distances to a hospital make it important for fire
departments to be fully staffed and equipped with the latest emergency
medications and medical supplies.
Rural fire departments face acute challenges in meeting their
community's EMS needs. These agencies often rely upon community
fundraisers such as barbeques, bingo, raffles, and auctions to raise
the money needed to fund their operations. While this may have once
been a plausible funding model, these types of fundraisers are no
longer sufficient to meet the needs of the 21st Century EMS systems.
Furthermore, these community-based fundraising activities were
completely shut down this year as a result of the stay-at-home orders
and social distancing guidelines which were implemented in most
communities across the nation. In strong financial times, these rural
fire departments' limited budgets prevented them from having the latest
medical equipment to treat patients or the resources to recruit and
retain volunteer EMS personnel. The unprecedented economic downturn has
exacerbated these financial struggles and threatens to curtail these
agencies' response abilities or even close their departments
completely.
Despite the fact that fire departments and EMS agencies transport
more than 30 million patients each year, the U.S. Department of Health
and Human Services (HHS) provides little support to essential agencies.
In 2018, Congress reauthorized the REMSTEA grant as the SIREN grants
and revised the criteria to provide funding directly to the rural fire
departments and EMS agencies. SIREN is a competitive grant program
which helps rural fire departments to procure emergency medications and
supplies, purchase EMS vehicles like ambulances and quick response
vehicles, establish recruitment and retention programs to attract
volunteers, and administer training classes to certify personnel as
emergency medical technicians. Congress' support for local EMS agencies
through the SIREN program is vital to ensuring that these agencies can
continue meeting the emergency medical needs of their communities. A
funding level of $20 million for the SIREN program in fiscal year 2021
will help these rural fire departments be prepared to care for COVID-19
patients as well as other patients suffering from medical emergencies,
traumatic injuries, natural disasters, and acts of terrorism.
I would like to thank the members of this subcommittee, as well as
the entire United States Senate, for their work to support the fire
departments in the response to SARS-CoV-2 and COVID-19. I look forward
to continuing to work with each of your offices to ensure that fire
departments have the resources, personnel, medications, and equipment
needed to care for all types of ill and injured patients across the
United States. The SARS-CoV-2 epidemic has placed unprecedented strains
on fire departments and the IAFC urgently requests your assistance by
providing $20 million for the SIREN grant program in fiscal year 2021.
[This statement was submitted by Fire Chief Gary Ludwig, President
and
Chairman of the Board of Directors, International Association of Fire
Chiefs.]
______
Prepared Statement of the International Foundation for
Gastrointestinal Disorders
fiscal year 2020 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $44.7 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, as you work with your colleagues to develop the
fiscal year 2021 Labor-Health and Human Services (L-HHS) appropriations
bill, please keep in mind the needs and concerns of the functional GI
and motility disorders community. ``Nearly two decades ago, I was
diagnosed with one of these diseases, irritable bowel syndrome (IBS).
As a young adult, I underwent extensive testing and workups over many
years in a difficult effort to discover what was causing my symptoms
and how best to treat them. I often relied on self-treatment as best as
I could, but this was not sustainable. Unfortunately, I am not alone in
these experiences. As President of IFFGD, I have heard my story echoed
back to me by thousands of others. Patients affected by these disorders
often face similar delays in diagnosis, frequent misdiagnosis, and
inappropriate treatments including unnecessary and costly surgery.
These are common concerns for our community, and they underscore the
need for increased research, improved provider education, and greater
public awareness.''
about the foundation
The International Foundation for Gastrointestinal Disorders (IFFGD)
is a registered nonprofit education and research organization dedicated
to informing, assisting, and supporting people affected by
gastrointestinal (GI) disorders. IFFGD works with patients, families,
physicians, nurses, practitioners, investigators, regulators,
employers, and others to broaden understanding about GI disorders,
support and encourage research, and improve digestive health in adults
and children.
about gastrointestinal (gi) and motility disorders
GI and motility disorders are the most common digestive disorders
in the general population. These disorders are classified by symptoms
related to any combination of the following: motility disturbance,
visceral hypersensitivity, altered mucosal and immune function, altered
gut microbiota, and altered central nervous system (CNS) processing.
Some examples of functional GI disorders are: dyspepsia, gastroparesis,
irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD),
bowel incontinence, and cyclic vomiting syndrome. The costs associated
with these diseases range from $25-$30 billion annually; economic costs
are also reflected in work absenteeism and lost productivity.
national institutes of health
Strengthening the nation's biomedical research enterprise through
NIH fosters economic growth and sustains innovations that enhance the
health and well-being of the American people. Functional GI disorders
are prevalent in about 1 in 4 people in the U.S., accounting for 40
percent of GI problems seen by medical providers. NIDDK supports basic,
clinical, and translational research on aspects of gut physiology
regulating motility and supports clinical trials through the Motility
and Functional GI Disorders Program.
Several of NIH's crosscutting initiatives are currently advancing
science in meaningful ways for patients with gastrointestinal
disorders. The Stimulating Peripheral Activity to Relieve Conditions
(SPARC) Initiative supports research on the role that nerves play in
regulating organ function. Methods and medical devices that modulate
these nerve signals are a potentially powerful way to treat many
chronic conditions, including gastrointestinal and inflammatory
disorders. The Human Microbiome Project is also unlocking important
discoveries that will help to inform and advance emerging treatment
options for many in the community.
patient perspective
Jacqui's Story
I got sick after an emergency appendectomy on Thanksgiving 2010
while I was in Army basic training. I was able to fight off the
inevitable and did 4 years in the Army during which I did a tour in
Afghanistan. When I got back, my health really started declining.
I fought and fought and fought for an answer, but it took just over
7 years to be diagnosed with gastroparesis. My main symptoms were
nausea, vomiting and pain. It got so bad that I had to give up my dream
career and was medically retired from the service.
Because we had tried pretty much every conservative treatment, they
told me I would just have to live with it. It got to the point where I
was going weeks without eating and was in and out of the ER getting
fluids, because anything that went in my stomach came back up. My hair
thinned, so I shaved it, and I was having memory problems and
confusion, which got so bad that my neuropsych tests came back with my
score being in the range of dementia.
My gastroenterologist even told me at one point that she couldn't
do anything ``drastic'' to help me until my blood work was ``bad
enough.''
Thank you for the opportunity to submit our community's
perspective, as you consider appropriations priorities for fiscal year
2021. We look forward to continuing to work with you on these critical
issues.
Informing, assisting, and supporting people affected by
gastrointestinal disorders.
[This statement was submitted by Ceciel T. Rooker, President,
International Foundation for Gastrointestinal Disorders.]
______
Prepared Statement of the Interstate Mining Compact Commission
We are writing in regard to the fiscal year 2021 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 (the Act). MSHA's budget
includes an amount of not less than $10,537,000 for state assistance
grants. We urge the Subcommittee to fund these grants at this
statutorily authorized level 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 more than 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 27
member states. The states are represented by their Governors who serve
as Commissioners.
We support full funding $10,537,000 for the state assistance grants
that enable the states to provide essential safety and health training
for the nation's coal miners, undiminished by use of these funds for
other purposes. Section 503 of the Act was structured to be broad 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 by
Congress.
With respect to the training component of our mine safety and
health 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. Our
experience over the past 40 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. We greatly appreciate Congress' recognition of this fact and this
Subcommittee's strong support for state assistance grants, especially
in past years when the Administration sought to eliminate or
substantially reduce those moneys.
We also appreciate the recognition by Congress that the
availability of these funds to states should not be diminished by
allowing them to be used for other purposes. A proviso in the
Administration's proposed fiscal year 2020 budget for MSHA would have
allowed funds from state assistance grants to be used for the purchase
and maintenance of equipment required by the final rule entitled
``Lowering Miners Exposure to Respirable Coal Mine Dust, Including
Continuous Personal Dust Monitors'' published by the Department of
Labor in the Federal Register on May 1, 2014 (70 Fed. Reg. 24813), for
operators that demonstrate financial need as determined by the
Secretary. This proviso had appeared in enacted Federal budget
legislation for several fiscal years before 2020. In our comments to
this Subcommittee on the proposed budget for fiscal year 2020, we
requested that this proviso be removed from the budget so that these
vital state mine safety and health training programs could be assured
of receiving adequate funding. We were pleased to see that this proviso
was eliminated in the enacted Federal budget for fiscal year 2020. We
urge Congress to reject any other similar attempt to diminish the funds
available to states for this purpose in the budgets it adopts for
fiscal year 2021 and future years. The budget that is adopted for
fiscal year 2021 should include the full amount of $10,537,000 for
state assistance grants, without any provisos or other qualifications
that could reduce the amount of money states receive.
Thank you for the opportunity to present our views on the proposed
fiscal year 2021 budget for MSHA.
[This statement was submitted by Thomas L. Clarke, Executive
Director,
Interstate Mining Compact Commission.]
______
Prepared Statement of the Interstitial Cystitis Association
summary of recommendations for fiscal year 2021
_______________________________________________________________________
--Provide $1.1 million for the IC Education and Awareness Program and
the IC Epidemiology Study at the Centers for Disease Control
and Prevention (CDC)
--Provide $44.7 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 and Chronic Pain
_______________________________________________________________________
Thank you for the opportunity to present the views of the
Interstitial Cystitis Association (ICA) regarding interstitial cystitis
(IC) public awareness and research. ICA was founded in 1984 and is the
only nonprofit organization dedicated to improving the lives of those
affected by IC. The Association provides an important avenue for
advocacy, research, and education. Since its founding, ICA has acted as
a voice for those living with IC, enabling support groups and
empowering patients. ICA advocates for the expansion of the IC
knowledge-base and the development of new treatments. ICA also works to
educate patients, healthcare providers, and the public at large about
IC.
IC is a condition that consists of recurring pelvic pain, pressure,
or discomfort in the bladder and pelvic region. It is often associated
with urinary frequency and urgency. This condition may also be referred
to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
chronic pelvic pain (CPP). It is estimated that as many as 12 million
Americans have IC symptoms. Approximately two-thirds of these patients
are women, though this condition does severely impact the lives of as
many as 4 million men. IC has been seen in children and many adults
with IC report having experienced urinary problems during childhood.
However, little is known about IC in children, and information on
statistics, diagnostic tools and treatments specific to children with
IC is limited.
The exact cause of IC is unknown and there are few treatment
options available. There is no diagnostic test for IC and diagnosis is
made only after excluding other urinary/bladder conditions. It is not
uncommon for patients to experience one or more years delay between the
onset of symptoms and a diagnosis of IC. This is exacerbated when
healthcare providers are not properly educated about IC.
The effects of IC are pervasive and insidious, damaging work life,
psychological well-being, personal relationships, and general health.
The impact of IC on quality of life is equally as severe as rheumatoid
arthritis and end-stage renal disease. Health-related quality of life
in women with IC is worse than in women with endometriosis, vulvodynia,
and overactive bladder. IC patients have significantly more sleep
dysfunction, and higher rates of depression, anxiety, and sexual
dysfunction.
Some studies suggest that certain conditions occur more commonly in
people with IC than in the general population. These conditions include
allergies, irritable bowel syndrome, endometriosis, vulvodynia,
fibromyalgia, and migraine headaches. Chronic fatigue syndrome, pelvic
floor dysfunction, and Sjogren's syndrome have also been reported.
ic public awareness and education through cdc
ICA recommends a specific appropriation of $1.1 million in fiscal
year 2021 for the CDC IC Program. This will allow CDC to fund the
Education and Awareness Program, per ongoing congressional intent, as
well as the IC Epidemiology Study.
CDC had shifted the focus of the IC program to an epidemiology
study and away from education and awareness, but thanks to the
Subcommittee the ICA and IC community have been able to open
discussions with CDC to ensure a renewed focus on education and
awareness activities. The IC community had been concerned that focusing
solely on an epidemiology study instead of on education and awareness
activities was detrimental to patients and their families. We have
recently met with CDC thanks to the actions of this Subcommittee where
we openly and effectively communicated the need for CDC to include ICA
in any collaboration along with the epidemiology study. We know that
CDC has not received as generous increases as NIH over the past few
fiscal years, but it is important the CDC continue supporting both
critical components of the IC Program. 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 2021.
The IC Education and Awareness program has utilized opportunities
with charitable organizations to leverage funds and maximize public
outreach. Such outreach includes public service announcements in major
markets and the Internet, as well as a billboard campaign along major
highways across the country. The IC program has also made information
on IC available to patients and the public though videos, booklets,
publications, presentations, educational kits, websites, self-
management tools, webinars, blogs, and social media communities such as
Facebook, YouTube, and Twitter. For healthcare providers, this program
has included the development of a continuing medical education module,
targeted mailings, and exhibits at national medical conferences.
The CDC IC Education and Awareness Program also provided patient
support that empowers patients to self-advocate for their care. Many
physicians are hesitant to treat IC patients because of the time it
takes to treat the condition and the lack of answers available.
Further, IC patients may try numerous potential therapies, including
alternative and complementary medicine, before finding an approach that
works for them. For this reason, it is especially critical for the IC
program to provide patients with information about what they can do to
manage this painful condition and lead a normal life. With the recent
developments in our conversations with the CDC we are confident that we
will continue to provide key education and awareness that will continue
to benefit the IC community.
ic research through the national institutes of health
ICA recommends a funding level of $44.7 billion for NIH in fiscal
year 2021. 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. The NIDDK Multidisciplinary Approach to the Study of Chronic
Pelvic Pain (MAPP) Research Network has continued to include cross-
cutting researchers who are currently identifying different phenotypes
of the disease. Phenotype information will allow physicians to
prescribe treatments with more specificity. Research on chronic pain
that is significant to the community is also supported by the National
Institute of Neurological Disorders and Stroke (NINDS) as well as the
National Center for Complementary and Integrative Health (NCCIH). The
vast majority of IC patients often suffer major and multiple quality of
life issues due to this condition. Many IC patients are unable to work
full time because pain affects their mobility, sleep, cognition, and
mood. These are people that simply want to lead productive lives, and
need pain medication to do so. Due to the fact that IC is categorized
as a non-cancer pain condition, IC patients already have a difficult
time obtaining pain meds. IC doctors do not have time nor the
inclination to effectively prescribe or monitor the distribution of the
opioid class of medication. They often refer their patients to Pain
Management Specialists, many who have never heard of IC, who often
refuse to treat them. In addition, antidepressants and benzodiazepines
are often used to treat both mood and sleeping disorders for IC
patients. Additionally, the NIH investigator-initiated research
portfolio continues to be an important mechanism for IC researchers to
create new avenues for interdisciplinary research.
patient perspective
IC is a tough disease to diagnose, and it is one of the most
challenging things to deal with, finding a Dr. that specializes in IC
that can help diagnose and treat. I can't stress enough how important
finding the right Dr. is. IC patients need a Dr. who understands and is
willing to go along with them on this long, frustrating, painful and
confusing road. I have found strength through having this that I never
knew I had, strength to keep going when all treatments so far have
failed me.
There are a small number of treatments available for managing IC
symptoms, but they only work on a small percentage of patients. I have
tried those treatments and some drugs that ``might'' help. I manage my
diet, take lots of supplements and have to see all kinds of Doctors
now. I have six! That includes holistic medicine doctors, physical
therapists, and acupuncturist. That's along with my regular MD,
Urologist and two different gynecologists. This is what my life has
become. The life of an IC patient. I deal with one or more symptoms of
IC EVERY SINGLE DAY. Some days definitely better than others, but every
single day. It affects my life in so many ways. Work, social, travel
and my intimate relationships. I never know how I'm going to feel from
one day to the next. Anxiety and fear included.
Thank you for the opportunity to present the views of the
interstitial cystitis community.
[This statement was submitted by Lee Lowery, Executive Director,
Interstitial Cystitis Association.]
______
Prepared Statement of the Jamestown S'Klallam Tribe
Chairman Blunt, Ranking Member Murray and distinguished members of
this Subcommittee, on behalf of the Jamestown S'Klallam Tribe, I would
like to thank you for this opportunity to submit written testimony on
our funding priorities and recommendations for the fiscal year 2021
appropriations process for the Department of Labor, the Department of
Health and Human Services, and the Department of Education.
covid-19 pandemic
--Fund Tribal Fishers and Tribal Employees Unemployment Benefits
--Provide Tribes a Robust Share of the $1.5 Billion DoE Post-
Secondary Education Account
tribal specific health & education appropriation priorities
--Fund Medicare/Medicaid Expansion
--ESSA Title VII Impact Aid--$2 Billion
--Child Welfare Programs Tribal Allocations Subpart 1, $5.5 million;
Subpart 2, $3.3 million
--Older Americans Act Title VI, Part A, B Native American Nutrition
and Supportive Services--$43 million
national requests
--Special Diabetes Program for Indians--$200 Million
--Alcohol and Substance Abuse Treatment--$503.9 Million
Our Tribal Communities are now on the front lines dealing with the
urgency, infection rate, and death toll of the COVID-19 pandemic and it
has become increasingly clear that Tribal Governments need
significantly more funding and resources to prevent the loss of human
life. In order to prevent Tribes from facing legal and regulatory
barriers to fighting this pandemic, Indian Country must be explicitly
included in any legislative or policy funding vehicle that is being
advanced and there must be allowance for greater flexibility in the
application and use of funds.
covid-19 pandemic
100 Percent Fund Tribal Fishers and Tribal Employees Unemployment
Benefits
Tribes in Washington State have an agreement with the State whereby
Tribes self-ensure rather than participate in FUTA. This agreement has
worked well for the Tribes under the normal termination of employee's
process. However, the COVID-19 pandemic presents new challenges that
were unforeseen at the time of entering these State agreements. The
copious revenue loss by the Tribes has been devasting and continues to
increase. Tribes should recover 100 percent of the unemployment
benefits extended to Tribal fishers and employees because of Covid-19.
Tribal unemployment recipients should also receive supplemental income
that is made available to other unemployed recipients and included in
the COVID-19 relief legislation.
Tribes Share in $1.5 Billion for Department of Education Post-Secondary
Education Account
Emergency Funding for Tribes to address the educational needs of
Indian students must also be provided. Provide a robust share of the
$1.5 Billion for the Department of Education Post-Secondary Education
Account to Tribal Colleges and Universities and Educational
Institutions serving AI/AN students; Provide $40 Million for the
extension of classes for AI/AN students for at least four (4) months;
and Ensure access to healthy meals for all AI/AN that are impacted by
school closures.
tribal specific health & education appropriation priorities
Fund Medicare/Medicaid Expansion.--It is vital that the Federal
Government continue to fully fund Medicaid for eligible AI/AN because
the 3rd party revenue is used to supplement Tribal health programs due
to inadequate IHS funding. AI/AN must also be exempted from the cost
sharing provision under Medicare. The Medicaid/Medicare system is a
critical lifeline to our community and coupled with our innovative
approach to healthcare is an effective and efficient use of the Federal
investment resulting in better health services and reduced healthcare
costs. Tribal consultation is required before any changes, such as,
work requirements or block grants are instituted.
ESSA Title VII Impact Aid--$2 Billion.--Currently, 93 percent of
Native students are enrolled in local public schools. Impact Aid
provides direct essential funding to public schools serving Native
students and should be forward funded to avoid the need for cost
transfers and other funding issues. Our mission to enhance self-
reliance, self-sufficiency and developing strong intellectually astute
Tribal citizens includes providing opportunities for personal growth
through education. Education is extremely important to our Tribe and
continued and increased funding for ESSA Title VII is needed to not
only ensure the success of our students and future Tribal leaders but
to secure the welfare and vitality of our Tribal community and culture.
Child Welfare Programs Title IV B (subpart 1)--$280 Million Tribal
Allocation $5.5 Million & Promoting Safe and Stable Families Social
Security Act Title IV B (subpart 2) $110 Million Tribal Allocation $3.3
Million.--Title IV B provides funding to Tribes to support community-
based child welfare services. Tribal tradition and culture are an
integral component of Tribal child welfare programs because it has been
proven that culturally tailored programs and services lead to better
outcomes for AI/AN children and families. Cultural integration leads to
increased community participation and support for these programs which
in turn results in a more effective response rate. Promoting Safe and
Stable Families provides funding for coordinated culturally appropriate
child welfare services. Maximum flexibility in the use of these funds
is essential to allow Tribes to provide ancillary services, including,
parenting classes, conducting home visits, and addressing issues, such
as, alcohol and substance abuse that have a direct correlation to
American Indian/Alaska Native children becoming integrated into the
child welfare system. The goal of these programs is to keep children
with their families and Tribal communities.
Older Americans Act Title VI--$43 Million.--Title VI programs fund
nutritional and other direct supportive services to AI/AN elders.
Reducing isolation through community and cultural activities and
ensuring our Elders receive proper nutrition and healthcare is a
priority for our Tribe. Title VI of the Older Americans Act is the
primary funding source for the provision of these programs and
services. Our meal delivery program has been in service for over 20
years and serves over 1100 meals per month on average to 80 elders.
Providing support services to our elders is deeply rooted in our
beliefs and ensures the survival of our culture, traditions, and
language. Our elders are the pathway to the past, present and future
for the next seven generations.
national health & education appropriation priorities
Special Diabetes Program for Indians--$200 Million.--The Special
Diabetes Program for Indians is a critical program that is saving lives
in our Tribal communities. This program has grown to become one of this
nation's most strategic and effective Federal investments that is
addressing the diabetes epidemic in Indian country. Tribes request
permanent reauthorization, remaining a mandatory rather than
discretionary appropriation and a minimum increase of $50 million for a
total of $200 million for SDPI.
Alcohol and Substance Abuse Treatment--$503.9 Million.--Alcohol and
Substance abuse has plagued Tribal communities for years and an
increase is needed to break the cycle. Tribal communities will continue
to struggle with addiction and the inter-related social issues unless
targeted funding is provided to Tribes to address these issues in a
culturally appropriate way.
The Jamestown S'Klallam Tribe continues to support the requests and
recommendations of the Portland Area Indian Health Board, the National
Indian Health Board, and the National Congress of American Indians.
Thank you.
[This statement was submitted by W. Ron Allen, Tribal Chairman/CEO,
Jamestown S'Klallam Tribe.]
______
Prepared Statement of Jennings Susan deg.
Prepared Statement of Susan Jennings
Chairman Blunt, Ranking Member Murray and Subcommittee Members,
Thank you for your public service and for affording families the
opportunity to submit testimony.
I have recently learned that the House passed its fiscal year 2021
LHHS spending bill and that the bill recommends increases or level
funding for four programs administered by HHS/Administration for
Community Living, the Developmental Disabilities and Bill of Rights Act
(DD Act) programs, including the Federal DD Act program that is working
to eliminate all intermediate care facilities (ICF's) in the state of
Pennsylvania. See testimony below submitted May, 2020.
I learned that the House fiscal year 2021 LHHS spending bill does
not include the report language protecting ICF care and we families in
Pennsylvania are deeply worried and I am re-submitting my testimony for
your consideration. On behalf of Joey and KIIDS, I respectfully request
that the attached Report Language be included in the Senate fiscal year
2021 LHHS spending bill.
I am Susan Jennings of Mansfield, Pennsylvania. My interest in
providing testimony is because of my son Russell ``Joey'' Jennings,
aged 28, who suffers from severe autism, intellectual disability and
co-morbid psychiatric disorders. I submit this testimony on behalf of
KIIDS--Keeping Individuals with Intellectual Disabilities Safe, a
statewide organization of the friends and families of Pennsylvania
State Developmental Centers. Most, but not all, members of KIIDS have
loved ones with disabilities receiving residential treatment services
in one of Pennsylvania's four human development centers which are
Medicaid-certified intermediate care facilities (ICFs).
Our family went through the journey parents travel when they learn
that their children have conditions which cannot be healed: denial,
grief, and despair. We worked hard to meet Joey's needs when he was
younger. As he grew into a strong youth, his care became beyond our
capacities. A growing percentage of the population with disabilities
should have the centralized structured support of institutional systems
of care. Joey is one of those.
KIIDS requests relief from Department of Health and Human Services'
(HHS') programs and policies which undermine and eliminate our state's
much-needed specialized residential treatment programs. I implore you
to halt the use of Federal funds by HHS programs and policies to
achieve the deinstitutionalization of at-risk persons like our son and
his peers from their safe intermediate care facility (ICF) homes.
hhs dd act programs in pennsylvania
It is clear to me and other parents of disabled persons residing in
state developmental centers that HHS through its grants to programs
created under the Developmental Disabilities Assistance and Bill of
Rights Act (last reauthorized in 2000) has been responsible for many of
the groups intent on closing our state's larger residential centers for
persons with cognitive deficits and other developmental disabilities.
The DD Act programs are: (1) State Councils on Developmental
Disabilities, (2) Protection and Advocacy (P&A) systems and (3)
National Network of University Centers for Excellence in Developmental
Disabilities Education, Research and Service (UCEDD) programs.
I am new in learning about the role that HHS plays in shaping long
term care policies for persons with developmental disabilities because,
relatively speaking, our family is new to the need for safe residential
care for our son. I am new to learning about the HHS funded DD Act
programs, that there have been no oversight hearings on them for the
past 20 years and that they receive a steady stream of unchecked
Federal funds, that they have insufficient oversight. I submit that the
general public would not support the DD Act programs' work to eliminate
the option of institutional care for persons unable to care for
themselves, which is sometimes called ``inclusion.''
Examples of deinstitutionalization work by DD Act programs in
Pennsylvania are:
(1) PA DD Council: a grant of $50,000.00 for the period March,
1994--to February, 1995 was awarded by Pennsylvania
Developmental Planning Council to the advocacy organization the
Arc. Purpose of the grant: ``To develop strategies for
overcoming the obstacles to closing institutions for persons
with mental retardation including but not limited to economic,
political and attitudinal barriers.'' Attachment 1,
(2) PA P&A: the Pennsylvania Protection and Advocacy program
brought Federal lawsuits which resulted in the closure of
Western Center and Embreeville Center.
(3) PA UCEDD: on September 24, 2019, the Director of the
Pennsylvania UCEDD program (Temple University Institute on
Disabilities) appeared before the Commonwealth's Senate Health
and Human Services legislative hearing in her official capacity
and urged the closure of Polk Center and White Haven Center,
two of the PA State ICF programs.
HHS through its DD Act programs and other long term care policy
programs and grants is on a disastrous path of closing institutional
(ICF) programs in favor of ``Community'' (Home and Community Based
Service) programs.
nowhere to go
My own severely autistic son's life is a case study in the
superiority and effectiveness of care in an ICF versus the suffering
and abuse he sustained in the ``Community'' HCBS model of care. He was
discharged from no less than 6 different community group homes,
administered by 3 different state providers, who offloaded him into 5
different psychiatric facilities in the short span of 4 years' time.
During his stay in ``Community'' services, he suffered a broken eye
socket, toxic overmedication, and exposure to pornography. He was
rescued by a Pennsylvania State Developmental Center (ICF) which
affords him quality of life and freedom from abuse.
My son is not an anomaly and he is not alone. According to the
National Alliance on Mental Illness, 500,000 autistic adults will be
coming of age in the next 5-7 years. Roughly between 10 percent and 50
percent of those adults will have the same severe impairments and
dangerous behavioral challenges as my son. If
``deinstitutionalization'' and the elimination of appropriate
residential care facilities continue, there will be a catastrophic
shortage of housing and effective services for these adults. With an
autism birthrate of 1 in 54, according to the CDC, this is a pressing
issue at this time in our nation's history. These young adults will
have nowhere to go except into a revolving door of failed ``Community''
placements, retro-fitted Hospital Emergency Rooms, psychiatric wards
and jail cells, at great cost to taxpayers, families and traumatized
vulnerable young autistic adults. See ``Nowhere to Go: Young People
with Severe Autism Languish in Hospitals,'' Kaiser Health News,
September 26, 2017
We respectfully request your consideration for report language in
the fiscal year 2021 LHHS spending bill barring Federal funds from
incentivizing states to close their specialized facilities for persons
unable to care for themselves. Suggested Report Language for fiscal
year 2021LHHS Spending Bill, Attachment 2.
Respectfully submitted,
KIIDS--Keeping Individuals with Intellectual Disabilities Safe
By: Susan Jennings
______
Prepared Statement of Johnson & Johnson
On behalf of Johnson & Johnson's 132,000 global employees, I am
pleased to provide written testimony to the House Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies in support of increased funding for the National Institutes of
Health (NIH) fiscal year 2021 budget.
Robust funding for NIH is necessary to ensure that the agency has
the continued ability to fuel innovation in medical research, improving
the trajectory of healthcare in the United States and around the world.
This funding request also represents what is required to remain
competitive in addressing emerging health threats confronting the
United States and to encourage the pursuit of innovative solutions
essential in addressing these increasingly complex challenges.
As a physician and scientist, I have dedicated much of my life to
translating basic scientific research into medical advances. In my role
as Global Head of Johnson & Johnson External Innovation and as a board
member of Research! America, the nation's largest not-for-profit
public education and advocacy alliance, and the American
Association for Cancer Research, I am deeply aware of the value of our
nation's investment in research.
In the United States, the majority of medical research into the
root causes of disease is publicly funded by the NIH through research
grants to more than 2,500 institutions across the country. The
invaluable research conducted by NIH-funded investigators represents
the building blocks of scientific discovery, enabling healthcare
companies to expand upon this research to transform scientific findings
into the breakthrough healthcare products of tomorrow. Furthermore, NIH
research often makes possible the business case for the enormous, at-
risk investment and effort it requires to discover, develop and guide
an important new medical treatment through the regulatory process and
to patients in need.
At Johnson & Johnson, we make a commitment to create life-enhancing
innovations and to produce value through partnerships that will
profoundly change the trajectory of health for humanity. To that end,
in 2019, Johnson & Johnson invested nearly $11.4 billion in research
and development across our pharmaceutical, consumer and medical device
companies. Our teams of scientists work tirelessly to accelerate the
translation of scientific discoveries into meaningful solutions for
patients and consumers. Much of our work, and that of scientists across
the industry, would not be possible without the constant progression of
the understanding of underlying disease biology--precisely the type of
research funded by the NIH.
In addition, Johnson & Johnson recognizes the crucial importance of
early-stage companies and the critical role NIH plays in supporting
these small businesses through Small Business Innovation Research
(SBIR) and Small Business Technology Transfer (STTR) funding.
Through our J&J Innovation Centers, entrepreneurs and startups can
discuss the innovative ideas they're working on and seek to collaborate
with Johnson & Johnson scientists, our global expertise and resources
to accelerate what they are working on. Through Johnson & Johnson
Innovation--JJDC they may obtain venture capital funding to support
their innovations. At Johnson & Johnson Innovation--JLABS incubator
sites, we support the life sciences ecosystem by helping entrepreneurs
and scientists realize their dreams of creating healthcare solutions
that improve lives by identifying and nurturing highly innovative ideas
in areas of potentially disruptive, cutting-edge research, which may
lead to novel platforms, products or technologies. These are advances
that the scientific community could only imagine several years ago, yet
they are becoming a reality today through the support of public-private
partnerships like these.
The work of the NIH is tied not only to innovation and the vitality
of the life sciences, but also to the health of our national economy.
NIH is the lifeblood of basic healthcare research for America, and is
also an incredible economic engine. In fiscal year 2019, NIH research
funding directly and indirectly supported over 475,000 jobs and spurred
nearly $81.3 billion in new economic activity. Moreover, the pace of
medical research must keep up with the aging of our population and
emerging microbial threats. 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,
diabetes, cancer and heart disease threaten to overwhelm our healthcare
system in a matter of years with enormous costs of care if we do not
find ways to prevent, intercept, treat and cure them.
Investments in medical research at the end of the 20th century by
the Federal Government and private life sciences companies, combined
with the work of industry and NIH-funded investigators across the
country, have produced fundamental scientific advances, vast new
datasets and increasingly sophisticated areas of scientific research.
As the NIH is working on projects in areas like precision medicine,
gene therapy and vaccines to prevent infectious diseases, there has
never been a more critical and promising time to work in medical
research.
Johnson & Johnson believes that fully and consistently funding the
NIH represents a commitment to fueling innovation in medical research.
It is also a commitment to our communities by advancing science to
match medical need, to our current and future generations of scientists
by stimulating the life sciences ecosystem, and to the prosperity of
our nation as a worldwide leader in medical research. Sustainable,
robust investment is needed to strengthen this research and to realize
its benefits for improving people's lives and reducing the burden and
associated costs of today's major diseases in the United States and
around the world.
[This statement was submitted by William N. Hait, MD, PhD, Global
Head,
Johnson & Johnson External Innovation.]
______
Prepared Statement of Kansas Neurological Institute
Parent Guardian Group
Chairman Blunt, Ranking Member Murray, and Committee Members, Thank
you for the opportunity to submit testimony.
There is a fierce ideological battle to eliminate all Intermediate
Care Facility options where defenseless individuals, affected with the
most profound disabilities have access to the supports they need (ICFs/
IID). These Medicaid approved facilities often disparagingly referred
to as institutions. The distortion of truth before this and other
Congressional Committees is often presented by well funded entities and
so-called ``subject matter experts''. What is missing from their
testimonies is the mounting number of tragedies occurring in community
settings nation-wide. This troubling discrimination against defenseless
individuals is based on a questionable agenda, and involves the use and
mis-use oof millions of dollars through HHS funding.
Having raised my grandson, who is affected with profound autism,
and who routinely exhibits extreme, maladaptive and dangerous
behaviors, I am well aware first-hand of the diminishing, unsustainable
aspects of ``inclusion'' ideology in community settings. The number of
community deaths and community abuse nationwide against helpless I/DD
individuals who did not choose to be born this way, are mounting and
have been mounting for more than two decades. Yet the forced ``trend''
of ICF facility closures across the nation continues.
The connection between appropriations work, the Senate LHHS
Subcommittee, funding of the Department of Health and Human Services
programs and grants, and policies adversely affecting the weakest
members of society by closing admissions to ICF programs is striking.
Robust Congressional oversight is desperately needed of DD Act related
grants and programs.
request
Our families respectfully request inclusion of attached report
language, to be included in the fiscal year 2021 LHHS spending bill,
which would bar Federal funds from incentivizing states to close
specialized facilities designed to provided adequate support for our
highest-risk loved ones. These individuals are our children,
grandchildren, brothers, sisters and friends.
Thank you for serious consideration in honoring requests herein.
Extensive documentation of nationwide community tragedies in this arena
is available upon the Committee's/Sub-committee's request.
Respectfully.
[This statement was submitted by Joan Kelley, Vice-President,
Kansas
Neurological Institute Parent Guardian Group.]
______
Prepared Statement of Komen Susan G. deg.
Prepared Statement of Susan G. Komen
Susan G. Komen (Komen) is the world's leading nonprofit breast
cancer organization, representing the millions of women and men who
have been diagnosed with breast cancer. Komen has an unmatched,
comprehensive 360-degree approach to fighting this disease across all
fronts--we advocate for patients, drive research breakthroughs, improve
access to high quality care, offer direct patient support and empower
people with trustworthy information. Komen is committed to supporting
those affected by breast cancer today, while tirelessly searching for
tomorrow's cures. We advocate on behalf of the estimated 279,100 women
and men in the United States who will be diagnosed with breast cancer
and the more than 42,690 who will die from the disease in 2020 alone.
Breast screening and diagnostic services allow us to catch potential
cancers at earlier stages often yielding better outcomes for patients
and resulting in decreased financial pressure on our healthcare system.
To this end, Komen is requesting that Congress fully fund the Centers
for Disease Control and Prevention's (CDC) National Breast and Cervical
Cancer Early Detection Program (NBCCEDP) at the authorized amount of
$275 million in fiscal year 2021.
Established in 1990 with the passage of the Breast and Cervical
Cancer Mortality Prevention Act, NBCCEDP plays a critical role in
helping low-income, uninsured, and underinsured women who do not
qualify for Medicaid access breast and cervical cancer screening and
diagnostic services that are free or low-cost. The covered services
include: clinical breast examinations, mammograms, pap tests, pelvic
examinations, human papillomavirus (HPV) tests, diagnostic tests if
results are abnormal, and referrals to treatment, education and case
management.
Since its inception, NBCCEDP-funded programs have served more than
5.6 million women, provided more than 13.3 million breast and cervical
cancer screenings, and diagnosed more than 68,486 invasive breast
cancers, and 4,720 invasive cervical cancers. In program year 2018 (the
most recent data available), the program screened 276,417 women for
breast cancer, diagnosing 2,599 invasive breast cancers and screened
135,148 women for cervical cancer, diagnosing 159 invasive cancers.
More than 2.6 million women remain eligible for NBCCEDP breast cancer
screening services. However, at current funding levels ($197 million in
fiscal year 2020), the program serves around 10 percent of those
eligible.
The program functions as a Federal-state partnership, under which
states are required to satisfy a 1:3 matching obligation ($1 in state
funding, monetary or in-kind, for every $3 in Federal funds provided to
that state). Currently, the Federal Government provides program funding
to all 50 states, the District of Columbia, six U.S. territories, and
13 American Indian/Alaska Native tribes or tribal organizations.
Uninsured and underinsured women at or below 250 percent of the Federal
poverty level, ages 40-64 are eligible for breast cancer screenings
services through NBCCEDP. Each state program operates within the
national framework of legislation, policy, and oversight; however,
programs vary in funding, infrastructure, populations served, and
geographical barriers. State programs are charged with implementing
strategies to reach women in underserved areas, as well as adopting
operational models that fit their unique populations and demographics.
Programs can prioritize the population they serve based on their cancer
burden, environment, available resources, and goals. Unfortunately,
these are often influenced and limited by state funding and legislative
constraints.
NBCCEDP faces several challenges, most notably funding. The program
funding has been targeted for cuts based on the assumption that more
women will heave health coverage as a result of the Affordable Care Act
(ACA) and thus would be able to get the services elsewhere. However,
challenges remain for women who live in states that have limited
Medicaid eligibility, fail to obtain insurance coverage, have limited
health literacy, and face language barriers. We recently heard from a
patient in California, ``I am grateful for the screening program to
have been here for me. I had a mammogram through the program and the
results were abnormal and I needed further studies. Unfortunately, I
was diagnosed with breast cancer. I am grateful that I found the cancer
at the very beginning stage and I only had to have a lumpectomy and
after treatment I am doing great.'' The NBCCEDP is even more critical
today when many Americans are facing financial and insurance insecurity
due to the COVID-19 crisis.
Increasing NBCCEDP funding is key to achieving Komen's Bold Goal of
reducing the number of breast cancer deaths by 50 percent by 2026. The
availability of the NBCCEDP impacts every taxpayer, and people in every
Congressional district, as the uninsured will eventually show up at our
states' hospitals with late-stage diagnoses, putting an even greater
strain on the patients, the health system and state budgets. Increasing
funding for NBCCEDP will allow the CDC and its grantees the ability to
pursue important goals such as implementing innovative strategies to
find eligible women who have not yet benefitted from the program due to
lack of access to care or lower incomes, education, or health literacy.
Ensuring adequate NBCCEDP funding is key to ensuring that low-
income, uninsured and underinsured women continue to have access to
vital screening and diagnostic services, providing newly insured women
access to health education and patient navigation services, as well as
enabling proper monitoring of state and local breast cancer patterns
and trends. Please support increased funding for NBCCEDP in the fiscal
year 2021 Labor, HHS, Education Appropriations Bill so that more women
can be screened, diagnosed and treated for breast cancer. Recognizing
the challenging budget and public health crises facing our nation, we
ask that Congress at least maintain the current NBCCEDP funding level
to avoid any losses of coverage or access to needed breast imaging.
[This statement was submitted by Molly Guthrie, Director, Public
Policy and
Advocacy.]
______
Prepared Statement of LEAD Coalition
Chairman Shelby, Vice Chairman Leahy, Chairman Blunt and Ranking
Member Murray, Chairman Hoeven and Ranking Member Merkley, Chairman
Moran and Ranking Member Shaheen, thank you for receiving this
testimony. Today, the LEAD Coalition submitted a more detailed letter
(see: http://www.leadcoalition.org/2020/05/22/fy2021-appropriations/)
to your offices signed by nearly 200 patient advocacy organizations and
health non-profits, philanthropies and foundations, trade and
professional associations, academic research and clinical institutions,
home and residential care providers, biotechnology and pharmaceutical
companies, and leading university-based researchers. This summary
testimony highlights vital fiscal year 2021 appropriations increases to
address immediate needs of people living with dementia and the
scientific research that will produce effective pharmacological and
non-pharmacological interventions to prevent, treat and eventually cure
Alzheimer's disease and related forms of dementia (including
cerebrovascular disease, Lewy body dementia, frontotemporal
degeneration and Creutzfeldt-Jakob disease). We sincerely thank you for
recognizing and decisively responding to these challenges in the fiscal
year 2020 appropriations package. Continuing the momentum in fiscal
year 2021 is a national priority, an economic and budgetary necessity,
a health and moral imperative. Specifically, we request that the fiscal
year 2021 appropriations bills include at least the following minimum
increases:
--a $354 million increase for National Institutes of Health (NIH)
research on Alzheimer's disease and other forms of dementia to
accelerate progress as articulated in the NIH Bypass Budget
Proposal for fiscal year 2021
--a $500 million increase for aging research across the NIH, in
addition to the funding for dementia-specific research, to
ensure that the NIH has the resources to address the many other
age-related chronic diseases that affect people with dementia
--a $3 billion increase for the NIH, including funds from the 21st
Century Cures Act for targeted initiatives, as recommended by
the Ad Hoc Group on Medical Research
--a $120 million increase for the FDA, in addition to funds included
in the 21st Century Cures Act for targeted initiatives, as
recommended by the Alliance for a Stronger FDA
--funding recommendations established in the recent Older Americans
Act reauthorization (Supporting Older Americans Act of 2020,
H.R. 4334) for all OAA programs and services, as recommended by
the Leadership Council of Aging Organizations
--a $8.5 million increase for the ACL/AOA Alzheimer's Disease Program
Initiative
--$20 million in new funds for the CDC to implement the BOLD Act
--a $3 million increase for the DoJ Missing Americans' Alert Program
We also recommend that the fiscal year 2021 appropriations bill
report language direct HHS to:
--report to Congress within 90 days consensus dementia-specific
pandemic preparedness and response action steps to be
implemented by Federal, state and local governments along with
relevant non-governmental organizations; and
--set a national, measurable, time-bound impact goal to reduce
dramatically dementia prevalence and deliver an implementation
plan to Congress within 180 days, with annual progress updates
provided to Congress and the National Alzheimer's Project Act
Federal advisory committee.
As the COVID19 pandemic has brought into starker relief, there are
few more compelling or complex issues to confront our aging society,
now and over the coming decades, than Alzheimer's disease and other
forms of dementia. These neurodegenerative conditions impose enormous
costs to our nation's health, prosperity, and social fabric. These
costs are skyrocketing and unsustainable for families, public and
private insurers, and our nation's economy. Currently, more than 5.8
million Americans have dementia, with combined healthcare and long-term
care costs of $305 billion. Taxpayers foot about two-thirds of that
bill--$206 billion--directly through the Medicare and Medicaid
programs. Individuals with dementia and their families pay out of
pocket for another fifth of the cost, $66 billion. More than 16 million
Americans provide unpaid care for someone with dementia, resulting in
additional healthcare and economic costs. Today, as another person
develops the disease every 65 seconds, Alzheimer's and other forms of
dementia impose a nearly $550 billion loss in public and private
expenditures along with uncompensated caregiving. By 2050, someone in
the United States will develop the disease every 33 seconds with as
many as 13.8 million Americans living with dementia. This explosive
growth will cause direct costs to increase from an estimated $305
billion in 2020 to $1.1 trillion in 2050 (in 2020 dollars) and the
hidden costs of uncompensated caregiving to be even more staggering.
Alzheimer's disease contributes to the deaths of more than 500,000
Americans each year. Alzheimer's disease is the third leading cause of
death in the United States and--despite a powerful body of evidence for
risk-reduction strategies, which is being expanded with significant NIH
investments--the only one among the top 10 for which there is not yet a
proven means of prevention, disease modification or cure. One third of
older Americans die with Alzheimer's disease or another form of
dementia.
The choice before our nation is not whether to pay for dementia--we
are paying dearly. The question is whether we will emulate the
investment strategies that have led to remarkable progress in fighting
other leading causes of death such as cancer, HIV/AIDS and heart
disease and achieve similar breakthroughs, or spend trillions to care
for tens of millions of people. A modernized and more robust research
portfolio along with rationale and compassionate investments in better
support services can help America prevent this catastrophe and move us
closer to achieving our national goal of preventing and effectively
treating dementia by 2025. The congressional appropriations committees
along with Federal agencies have moved mountains to create additional
resources, public-private partnerships, and a culture of urgency.
Across the NIH, institutes are advancing promising research into
Alzheimer's disease and other forms of dementia to: understand genetic
risk factors; address health disparities among women, African
Americans, Hispanics, and persons with intellectual and developmental
disabilities; understand Down syndrome's relationship to Alzheimer's
disease; pursue cutting-edge trials aimed at preventing or
substantially slowing disease progression by administering treatments
much earlier in the disease process; and improve quality of life for
people with dementia and their caregivers. In fiscal year 2021, the
National Institute on Aging plans to intensify its research focus on
better understanding the basic biology of underlying dementia,
characterizing novel biomarkers and screening tools such as a blood
test, identifying and testing innovative drug targets, supporting
clinical trials and infrastructure like the Alzheimer's Clinical Trials
Consortium, and improving the diagnosis, care, and support of those
living with dementia. The FDA is encouraging new research avenues and
clarifying regulatory approval pathways. This year, FDA is expected to
review new products to address some of the most heart-breaking symptoms
of dementia along with what would be the first disease modifying
therapy.
The investments we recommend for Older Americans Act services, BOLD
Act implementation and other vital programs are relatively small but
crucial complements to vastly larger Medicaid and Medicare expenditures
to protect and promote the wellbeing of people living with dementia and
their caregivers. As urgently as resources are needed to enable
scientific breakthroughs, the millions of Americans currently living
with dementia and their family caregivers deserve strengthened
commitments to protect and enhance their quality of life.
Thank you for considering our views and for your commitment to
overcoming Alzheimer's disease and other forms of dementia.
[This statement was submitted by Ian Kremer, Executive Director,
LEAD
Coalition (Leaders Engaged on Alzheimer's Disease).]
______
Prepared Statement of Linkin Victoria deg.
Prepared Statement of Victoria Linkin
My 22-year-old daughter needs help and has been unable to find it
in this broken system. She's now on her 6th hospital stay since first
experiencing mental illness 1 year ago after returning home from
college. There are no long-term facilities in my state (Nevada). Our
insurance forces her to be released from acute care before she is
ready, and winds up hospitalized again within a few days.
Society and the government put the tremendous burden on the
families to care for our schizophrenic/schizoaffective loved ones. We
are not equipped to handle this disease nor do we have the expertise.
If my daughter had cancer or was a drug addict, she would have access
to a plethora of treatment options. Why are serious mental health
conditions treated any differently? She has a disease of the brain, why
aren't we afforded the resources to help combat the effects of this
debilitating disease?
Because we lack necessary resources, most individuals with mental
health diseases wind up homeless or in jail. Why is this disease
criminalized? Why must we wait for a jail sentence so that they will
qualify for financial aid and treatment? They need a village, they need
hope and a place in our communities, a system that requires them to
take medication. We need help with the financial burden of housing
them, especially while they are unmedicated, undergoing psychosis and
resistant to help. This is a human rights issue. This ongoing crisis is
unmanageable.
Sincerely.
______
Prepared Statement of the Lymphatic Education & Research Network
key recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with $44.7 billion
for fiscal year 2021 and advance lymphatic disease research by
expanding resources and encouraging better coordination among
relevant institutes and centers.
--Establish a National Commission on Lymphatic Disease Research at
the NIH to identify emerging opportunities, challenges, gaps,
structural changes, and recommendations on lymphatic disease
research.
--Provide the Centers for Disease Control and Prevention (CDC) with
$8.3 billion for fiscal year 2021 and enable programmatic
activity on chronic disease education and public awareness.
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for the opportunity to submit the
priorities of the lymphatic diseases community you as you consider
fiscal year 2021 appropriations for the National Institutes of Health
(NIH) and the Centers for Disease Control and Prevention (CDC).
about le&rn
The Lymphatic Education & Research Network (LE&RN) is an
internationally recognized non-profit organization founded in 1998 to
fight lymphatic diseases and lymphedema through education, research and
advocacy. With chapters throughout the world, LE&RN seeks to accelerate
the prevention, treatment and cure of these diseases while bringing
patients and medical professionals together to address the unmet needs
surrounding lymphatic diseases, which include lymphedema and lipedema.
about lymphedema and lymphatic diseases
The lymphatic system is a circulatory system that is critical to
immune function and good health. When it is compromised and lymph flow
is restricted, the physical impact to patients can be devastating, life
altering, and can lead to shortened lifespan. Lymphedema (LE) is one
such lymphatic disease. LE is a chronic, debilitating, and incurable
swelling that can be a result of cancer treatment, inherited or genetic
causes, and damage to the lymphatic system from surgery or an accident,
or from parasites as in lymphatic filariasis. Stanford University
estimates that up to 10 million Americans have lymphedema. This
represents more Americans than those living with AIDS, Multiple
Sclerosis, Parkinson's disease, Muscular Dystrophy and ALS--combined.
The World Health Organization puts the global number of people with
this disease at 250 million. There is no cure. There is no approved
drug therapy. And there are currently only three drug studies worldwide
seeking a treatment. Psychosocially bruised by a disease that leaves us
deformed, we do our best to hide our lymphedema.
Lymphedema is an equal opportunity disease, affecting women, men
and children alike. Many are born with congenital or hereditary
lymphedema. Others, like our veterans, get the disease as a result of
physical trauma, bacterial infection, or as result of exposure to burn
pits. Like seven million other Americans, one can develop lymphedema
after being treated for cancer. Those with LE face a lifetime of time-
consuming daily care regimens. These include manual lymph drainage
massage, wrapping oneself in compression garments and using a pneumatic
pump to control the swelling. Forever. Compression garments aren't even
covered by Medicare. We are working to expand access through the
Lymphedema Treatment Act, and we are hopeful this bill will pass this
year. But it is clear that this community deserves more options.
Lymphedema is an ignored disease. A study concluded that physicians
are currently getting an average of only 15-30 minutes of study on the
lymphatic system in their entire medical training. This leaves them
ill-prepared to diagnose the disease. Misdiagnosis leads to improper
treatment. Those who are diagnosed find it difficult to find certified
lymphedema therapists. Few medical centers exist that are prepared to
address lymphatic diseases. Surgeons are experimenting with treatment
that could alter the course of the disease. However, the necessary
basic research is not being done to inform their procedures. And
currently, Medicare and Medicaid do not cover some of the basic
treatment needs of these patients--such as compression garments, which
all must wear daily.
fiscal year 2021 appropriations recommendations
It is time for a challenge worthy of our great country. We ask that
within 20 years, we will make lymphedema a truly treatable disease. To
reach this goal will require a commitment to important medical
research. LE&RN joins the broader medical research community in
thanking Congress for continuing to provide the National Institutes of
Health with proportional and sustainable funding increases over the
past several fiscal years, and we ask you all to continue to prioritize
these activities by providing at least a $3 billion funding increase
for fiscal year 2021 to bring NIH's budget up to $44.7 billion.
We continue to urge the Subcommittee to work to expand and advance
the lymphatic disease portfolio at the NIH. In late 2015, the NIH
hosted a Lymphatic Symposium, where experts in the field identified a
scientific roadmap that could build the research portfolio up to a
level of at least $70 million annually over subsequent years by funding
meritorious grants on critical topics. In an effort to further support
and enhance emerging lymphedema and lymphatic disease research
activities, we ask the Subcommittee to encourage further collaboration
among relevant institutes and centers conducting research in this area.
We also call on the Subcommittee to work with your colleagues to
establish a National Commission on Lymphatic Disease Research, which
can thoroughly examine the portfolio and make recommendations on how
best to advance this emerging scientific area under NIH's current
structure. Currently, the National Institutes of Health spends
approximately $25 million annually on lymphatic research, and only $5
million of this is dedicated to clinical lymphedema research. Experts
state with confidence that there is no other disease affecting more
Americans that receives so little attention. It must also be noted that
study of the lymphatic system is poised to bring miracles for a host of
diseases that are part of the lymphatic continuum: obesity, heart
disease, diabetes, Rheumatoid arthritis, cancer metastasis, AIDS,
Crohn's disease, lipedema, and a host of other diseases. Recent
research discovered lymphatics surrounding the brain, which now has us
studying its impact on Alzheimer's disease and multiple sclerosis. We
appreciate the Subcommittee's continued support for the establishment
of a National Commission on Lymphatic Diseases and ask that NIH be held
accountable for the lack of progress on its establishment.
LE&RN also joins the public health community in asking Congress to
provide the Centers for Disease Control and Prevention (CDC) with $8.3
billion through fiscal year 2021 and to establish funding to increase
awareness, education, and surveillance of lymphatic diseases. The CDC's
National Center for Chronic Disease Prevention and Public Health
Promotion has programs dedicated to improving surveillance, physician
education, and public awareness for several chronic diseases. We
encourage the Subcommittee to establish a $5,000,000 merit-based
programmatic activity in this area that will allow CDC to work with
stakeholder organizations to expand important initiatives on chronic
diseases such as lymphedema and lymphatic diseases. Formal study of the
lymphatic system and of lymphatic diseases is virtually nonexistent in
the current curricula of U.S. medical schools, and misinformation
routinely leads to misdiagnosis and under-treatment. This delay and
misdirection of treatment results in irreparable physical and
psychosocial harm to patients suffering from these already debilitating
diseases. CDC can help to address this lack of public and provider
awareness.
Thank you for the opportunity to testify before you today. LE&RN
looks forward to working with you all to advance medical research and
public health activities that will improve patient outcomes for the
members of our community suffering from these debilitating diseases.
[This statement was submitted by William Repicci, President and
CEO,
Lymphatic Education & Research Network.]
______
Prepared Statement of March of Dimes
March of Dimes, the nation's leading nonprofit organization
fighting for the health of all moms and babies, appreciates this
opportunity to submit testimony for the record on fiscal year 2021
appropriations for the Department of Health and Human Services (HHS).
March of Dimes leads the fight for the health of all mothers and
infants through our research, community services, education, and
advocacy. Our organization recommends the aforementioned funding levels
for programs and initiatives that are essential investments in maternal
and child health.
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD): March of Dimes recommends that Congress provide at
least $1.6 billion for NICHD's groundbreaking biomedical research
activities in fiscal year 2021. Increased funding will allow NICHD to
sustain vital research on preterm birth, maternal mortality, maternal
substance use, prenatal substance exposure and related issues through
extramural grants, Maternal-Fetal Medicine Units, the Neonatal Research
Network and the intramural research program. It will also ensure that
NICHD can continue research on the impact of the 2019 novel coronavirus
and coronavirus disease 2019 (COVID-19) on pregnant women, new mothers,
and infants. March of Dimes is strongly supportive of NICHD's efforts
to expand research identifying safe and effective therapies for
pregnant and lactating women. The Task Force on Research Specific to
Pregnant and Lactating Women (PRGLAC) laid the foundation for this
important work by releasing recommendations in September 2018 as
mandated by Congress in the 21st Century Cures Act (Public Law 114-
255). March of Dimes is encouraged by PRGLAC's current work to develop
an implementation plan for those recommendations. NICHD funding also
supports research to address gaps in our understanding of the best way
to treat mothers with opioid use disorder and the long-term impact of
opioid exposure in utero. March of Dimes was pleased the President's
fiscal year 2021 budget request included $50 million specifically for
research to improve outcomes for infants born too soon or born with
dangerous health conditions. We support the inclusion of this dedicated
funding to address the nation's preterm birth crisis.
Title V Maternal and Child Health Block Grant Program: March of
Dimes recommends funding the Title V Maternal and Child Health Block
Grant Program (Title V Block Grant) at $715 million. States,
territories and other jurisdictions use Title V Block Grant funds to
support their most pressing maternal and child health needs. This
increase in funding can be used to intensify state efforts to prevent
maternal deaths and severe maternal morbidity, including supporting
maternal mortality review committees, implementing the Alliance for
Innovation on Maternal Health program, and continuing State Maternal
Health Innovation Grants. We urge the Committee to increase funding for
the Title V Block Grant in fiscal year 2021 to allow states to address
maternal mortality while maintaining and expanding its work to improve
maternal and child health across the nation and confronting emerging
issues, such as COVID-19.
Safe Motherhood Initiative: The mission of the Safe Motherhood
Initiative at the CDC's National Center for Chronic Disease Prevention
and Health Promotion is to promote optimal reproductive and infant
health. March of Dimes recommends funding of $76 million for the Safe
Motherhood program, an increase of $18 million over fiscal year 2020.
The increase would be used to scale CDC's efforts to address the
nation's alarming number of maternal deaths by supporting state-based
maternal mortality review committees in all 50 states. March of Dimes
also strongly urges maintenance of the preterm birth sub-line at $2
million, as authorized in the PREEMIE Reauthorization Act of 2018
(Public Law 115-328), to maintain ongoing and essential preterm birth
research at CDC.
National Center on Birth Defects and Developmental Disabilities
(NCBDDD): NCBDDD is the lead Federal agency tasked with supporting
vital surveillance, research, and prevention activities on birth
defects and developmental disabilities. For fiscal year 2021, March of
Dimes urges the Committee to provide at least $168.5 million for NCBDDD
and apply this increase across the full range of NCBDDD activities.
This increase aligns with March of Dimes' request to increase funding
for the CDC by 22 percent by fiscal year 2022. We also urge the
Committee to continue support for two new NCBDDD activities funded in
fiscal year 2020, the Surveillance for Emerging Threats to Mothers and
Babies Initiative and work to improve neonatal abstinence syndrome
(NAS) surveillance. The Emerging Threats Initiative enables select
states and jurisdictions to continue important work begun during the
Zika virus response to identify and address new threats to mothers and
infants. Currently, NCBDDD is working to utilize this infrastructure to
monitor the impact of COVID-19 on moms and babies. NCBDDD's efforts to
improve NAS surveillance are vital to addressing the opioid epidemic's
short- and long-term impact on infants.
Newborn Screening: March of Dimes urges funding of $29.7 million
for CDC's Newborn Screening Quality Assurance Program (NSQAP) and $31
million for the Health Resources and Services Administration's (HRSA)
Heritable Disorders program, which play critical roles in assisting
states in the adoption of additional screenings, educating providers
and consumers, and ensuring coordinated follow-up care. These amounts
are equal to the authorized levels in the Newborn Screening Save Lives
Reauthorization Act of 2019 (H.R. 2507), which unanimously passed the
U.S. House of Representatives in July 2019. HRSA's Heritable Disorders
program also supports the work of the Advisory Committee on Heritable
Disorders in Newborns and Children (ACHDNC), which provides
recommendations to the HHS Secretary for conditions to be included in
the Recommended Uniform Screening Panel (RUSP). In recent years, the
ACHDNC has added four new conditions to the RUSP, bringing the total
number of recommended screens to 35. New funding for NSQAP and the
Heritable Disorders program is crucial to ensure states have adequate
funds and support to implement screening for these new additions to the
RUSP.
Grants for Maternal Depression Screening and Treatment: Research
shows that up to one in seven pregnant women or new mothers experience
some sort of maternity-related depression, yet only about 15 percent of
those affected receive treatment. The 21st Century Cures Act sought to
address this gap by authorizing grants to states to improve screening
for and treatment of maternal depression in pregnant and postpartum
women. March of Dimes appreciates that Congress provided funding for
this innovative grant program in fiscal year 2020 and urges the
Committee to provide $8 million for the programs in fiscal year 2021.
Funding to Promote Optimal Birth Spacing and Improved Birth
Outcomes: Research shows that appropriate birth spacing--waiting at
least 18 months between pregnancies--can dramatically reduce the risk
of poor birth outcomes. Additionally, we know that the youngest mothers
have some of the worst birth outcomes. We can mitigate these risk
factors by ensuring women have access to evidence-based counseling and
education prior to pregnancy and access to all forms of contraception
approved by the Food and Drug Administration. To support these
important goals, March of Dimes recommends funding of $400 million for
Title X Family Planning Program and $110 million for the Teen Pregnancy
Prevention Program administered by the Office of the Assistant
Secretary for Health.
Conclusion: March of Dimes looks forward to working with
appropriators and all Members of Congress to secure the resources
needed to improve our nation's health. Federal public health programs
are essential to preventing preterm birth, ending preventable maternal
deaths, and addressing the opioid epidemic's impact on mother, infants
and families.
[This statement was submitted by Ariel Gonzalez, Esq., Senior Vice
President of Public Policy and Government Affairs, March of Dimes.]
______
Prepared Statement of The Marfan Foundation
the foundation's fiscal year 2021 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $44.7 billion in program level funding for the National
Institutes of Health (NIH).
--Proportional funding increase for NIH's National Heart, Lung, and
Blood Institute (NHLBI); National Institute of Arthritis
and Musculoskeletal and Skin Diseases (NIAMS); National Eye
Institute (NEI); and National Center for Advancing
Translational Sciences (NCATS).
_______________________________________________________________________
Chairman Blunt and distinguished members of the Subcommittee, thank
you for your time and your consideration of the priorities of the
heritable connective tissue disorder and aortic aneurysm syndrome
community as you work to craft the fiscal year 2021 L-HHS
Appropriations Bill.
About The Marfan Foundation
The Marfan Foundation's mission is to save lives and improve the
quality of life of individuals with Marfan syndrome and other genetic
aortic/vascular conditions.
--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.
The Foundation will not rest until we've achieved victory--a world
in which everyone with these conditions receives a proper diagnosis,
gets the necessary treatment, and lives a long and full life.
About The VEDS Movement
The mission of The VEDS Movement is to save lives and improve the
quality of life of individuals with Vascular Ehlers-Danlos Syndrome
(VEDS). By pursuing the most innovative research, educating the medical
community, general public and affected individuals, and providing
support to patients, families, and caregivers, we can charge forward
and improve the outcomes for those living with VEDS.
About Genetic Aortic Aneurysm/Vascular Conditions
Connective tissue is found throughout the body. Consequently,
heritable connective tissue conditions, like Marfan syndrome, Vascular
Ehlers Danlos syndrome (VEDS), Loeys-Dietz syndrome, and familial
aortic aneurysm syndrome, can affect many different parts of the body.
Features of the conditions are most often found in the heart, blood
vessels, bones, joints, lungs, eyes and intestines. All of these
conditions are genetic conditions that have one common feature: the
aorta (the main blood vessel that carries blood from the heart to the
rest of the body) is prone to enlarge or rupture, a life-threatening
problem that requires appropriate and timely medical intervention. In
addition, people with Vascular Ehlers Danlos and Loeys-Dietz Syndrome
are at high risk for ruptured arteries or organs throughout the body.
centers for disease control and prevention
People with heritable connective tissue disorders are born with
them but features of the conditions are not always present right away.
Some people have a lot of 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, vascular Ehlers Danlos, or Loeys-Dietz
syndrome until they are young adults. Some features of these syndromes,
like those affecting the heart and blood vessels, bones or joints, get
worse over time. This makes it very important for people with such
conditions to receive accurate, early diagnosis and treatment. Without
it, they can be at risk for potentially life-threatening complications
that could lead to a sudden early death. The earlier some treatments
are started, the better the outcomes are likely to be. We are asking
Congress to provide the Centers for Disease Control and Prevention
(CDC) with $8.3 billion through fiscal year 2021 and to establish
funding to increase awareness, education, and surveillance of
connective tissue disorders. The CDC's National Center for Chronic
Disease Prevention and Public Health Promotion has programs dedicated
to improving surveillance, physician education, and public awareness
for several chronic diseases. We encourage the Subcommittee to
establish a $5,000,000 merit-based programmatic activity in this area
that will allow CDC to work with stakeholder organizations to expand
important initiatives on chronic diseases such as heritable connective
tissue conditions, like Marfan syndrome, Vascular Ehlers Danlos
syndrome (VEDS), Loeys-Dietz syndrome, and familial aortic aneurysm
syndrome.
national institutes of health
NIH, specifically NIAMS and NHLBI, have worked closely with the
Foundation to investigate the mechanisms of these conditions. In recent
decades, this research has yielded significant scientific breakthroughs
that have the potential to improve the lives of affected individuals.
In order to ensure that the heritable connective tissue disorders
research portfolios can continue to expand and advance, NIH requires
meaningful funding increases to invest in emerging and promising
activities.
patient perspective
David Bowen was 13\1/2\ years old in February 1996 when he suddenly
suffered a perforation of the sigmoid colon, which required a
colostomy. His surgeon could not identify a cause and suspected David's
parents of child abuse, despite David denying anything untoward. A full
investigation was launched which removed that suspicion. Not one of his
physicians ever considered the need to consult a geneticist. Instead,
they led the family to believe that David was healthy and there was no
reason to worry. While recovering he had other unusual symptoms, which
should've sparked more investigation, but he was released from the
hospital in early March. While at home slowly healing, all he wanted
for his 14th Birthday was to roller blade around his driveway. In June,
he had surgery to reverse the colostomy. It was filled with
complications; fever, pain, vomiting, elevated blood pressure, and more
bowel problems, but the doctors did not think they were serious and
said it would take time. But David's condition worsened. The doctors
and nurses were still not alarmed and did not consult a geneticist.
David continued to go downhill and, by evening he collapsed in his
mother's arms. His parents quickly arranged for a helicopter transport
to a major trauma center. By the time he got there, he was in septic
shock, bleeding, with infection throughout his body. He had surgery in
the morning--the large colon was wide reopen, four perforations of the
small bowel, abscesses, and blood clots. There were new complications
over the next 10 days and, despite a valiant fight, David died on July
8, 1996.
For David, the diagnosis came too late to save him. Tragically, in
2020, this same story still continues to replay over and over due to
the lack of medical knowledge of VEDS, including in the hospital
emergency departments. People with VEDS rely on a handful of
specialists to be available to their local doctors, especially in the
case of emergency. In fact, 80 percent of people with VEDS have a major
complication by the age of 40. And, the median life expectancy is 51
years. Education and awareness is needed. It's truly a matter of life
and death.
[This statement was submitted by Michael Weamer, President and CEO,
The Marfan Foundation.]
______
Prepared Statement of Matthew Savage of Virginia
Dear Chairman Blunt, Ranking Member Murray and distinguished
members of the Subcommittee:
I write to you concerning the budget request of the Department of
Education for fiscal year 2021. I write in opposition to Secretary
Devos and President Trump's continuous budget cuts and request for
consolidation of many of the grant programs the Congress has worked to
build, beginning in 1965.
In a time of national emergency, when our school districts are
being asked to cut costs in order to make up for a loss of revenue,
when teachers are being laid off, and when our lower-income students
who may not have access to a computer, high-speed Internet, or lunch
outside of school are most at risk of falling behind in their
educational careers, many Americans will find it difficult, as I do, to
accept a tiny handful of billionaires proposing cuts to funding for our
most vulnerable students.
We must fully understand the full implications of what Secretary
Devos is really proposing in regards to the Elementary and Secondary
Education for the Disadvantaged (ESED) block grant. Secretary Devos
calls it putting students first; but in reality, this is nothing more
than a tool for the richest of the rich to consolidate the power and
the money that the Congress appropriates for the disadvantaged youth.
The justification for the ESED consolidation of these grant
programs is that it allows the states and school districts to assert
more control over the money they receive from the Federal Government.
But the facts are that this consolidation proposal would not accomplish
that goal. The facts are that consolidation of formula grants leads to
more, not less, Federal power; and that power would be possessed by an
even smaller group of people. This proposal would merely undermine the
Congressional 'power of the purse' by allowing one individual to decide
the fate of nearly twenty billion dollars of Federal funds. This
proposal would allow states and individual school districts to use
Federal money however they wish, without any substantive Federal
regulation or Federal oversight.
Each of the almost 30 grant programs Secretary Devos proposes
consolidating serve a different purpose. The largest is the Title 1
grant program to support schools with a large number of low-income
residents, but they vary from support for migrant education, the
homeless, the rural school population, English learners and neglected
and delinquent children; and those are the students who are going to be
impacted the worst if this ESED consolidation proposal is adopted. All
of these grant programs serve a different purpose, and thus each must
be apportioned with a different formula and governed by different
Federal regulations and reporting requirements. Contrary to what
Secretary Devos may believe, there is no one size fits all formula. As
with the needs of every student, the needs of each individual school
are completely different. And now as ever, we need the Department of
Education's budget to recognize the unique needs of each classroom.
I am deeply concerned, further, that the ESED consolidation program
would allow states to divert more and more into charter schools while
the educational needs of the vast majority of students go unmet.
With warm regards.
______
Prepared Statement of Mayo Linda deg.
Prepared Statement of Linda Mayo
Schizophrenia and bipolar disorder are among the most serious
psychiatric disorders and play a disproportionate role among
individuals who end up homeless, incarcerated, and who commit suicide.
The cost of schizophrenia alone in the U.S. was estimated to be $155.7
billion \1\.
---------------------------------------------------------------------------
\1\ Cloutier M, Aigbogun MS, Guerin A, et al. The economic burden
of schizophrenia in the United States in 2013. J Clin Psychiatry.
2016;77:764-771.
---------------------------------------------------------------------------
As the mother of adult twin daughters, this issue is very personal.
Both girls have been living with schizophrenia and bipolar schizo-
affective disorders since their early twenties. Initially diagnosed and
treated they lived independent and productive lives for over 10 years;
working, going to college, socializing, dating, etc.
Over that time period they were in wellness treatment programs and
taking meds. But a couple of times, their bodies developed a tolerance
for the medication and they had to go through med changes to stabilize
them once again. We are fortunate that substance abuse has never been
an issue to deal with in their treatment. But there are those who
choose to self-medicate with illegal drugs in order to drum out the
voices in their heads.
Ten years ago, still in treatment and taking their medication, they
began to spiral down. In today's mental health system the intervention
they needed to prevent total decompensation is not permitted. They both
decompensated to the point they were completely psychotic and one of
them became homeless. Examples of their condition? One went to a house
in which we had once lived in 20 years ago, pounded on the door
screaming obscenities telling these people to get out of her ``Fn**''
house. The other believed she had transmitters under her skin and
thought electricity was going through her body to the point she was
pulling out electrical outlets and cutting electrical cords. I could
cite many, many more similar and worse examples but I will move on.
Both eventually got into intensive treatment programs through the
criminal justice system. One currently lives in a board and care
facility and receives intensive treatment services and medication. The
other lives in a subsidized apartment and receives intensive treatment
services and medication. The kicker here is, even while being treated
and medicated, they continue to battle the symptoms of their illness
each and every day. My one daughter is now on Clozaril.
Today, Clozaril is the final medication that can keep her from
falling into the abyss of total insanity. There are no other anti-
psychotic medications for her to try. As a mother, I am terrified of
the time when her body no longer responds to the medication.
I am begging you to do everything you can to support extensive
research into more and better treatment options and a cure for my
daughters and all those who share a similar story. I am not alone in
this battle. PLEASE HELP US! Since 2006 Congress has been very generous
by increasing NIMH budget by 35 percent, while at the same time, NIMH
has reduced its support for drug treatment trials/research for cures by
96 percent.
I hope I have helped you understand the gravity of the situation
for many who live with a serious mental illness. We are desperate for
new medications. We are desperate for a cure. Please direct the NIMH to
use the resources to save our loved ones lives and give them a chance
to again live safe, productive, and happy lives.
Thanks for giving me the opportunity to express my fears and hope
for resources to advance the research for our most vulnerable in our
society today.
______
Prepared Statement of McClellan Amy J. deg.
Prepared Statement of Amy J. McClellan
I am the mother of two young adult daughters who live with serious
mental illnesses--bipolar disorder and major depressive disorder (that
has not responded to current treatments). Their lives were turned
upside down with the onset of their mental illness in adolescence and
profoundly affected our entire family. I still lay awake many nights
praying that my daughter with treatment-resistant depression makes it
through another day.
I also co-founded and am the board president of a mental health
Clubhouse in Miami, which serves very low-income adults living with
serious mental illness. Many of our members have told me their stories
of homelessness, desperation and difficulty finding good treatment.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
I beg you to have NIMH prioritize research for the 5 percent of our
population that has serious mental illnesses that include chronic
depression (the leading cause of disability in the U.S.), schizophrenia
(and schizoaffective disorder), and bipolar illness. This makes sense
because it's the humane thing to do, but it also makes good fiscal
smarts. The most severe mental illnesses account for the most dollars
spent in hospitals, jails, prisons, emergency rooms, and services for
the homeless. There hasn't been a new treatment for schizophrenia for
decades, yet this illness alone destroys millions of lives each year
and fills our streets and jails with people with untreated mental
illness.
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of
Health budget resolution in December 2019, which brings the
NIMH budget to just under $2 billion and represents a 35
percent increase since 2015, one of the largest increases in
the history of the NIMH. Yet, during the 5 years from 2015
through 2019, NIMH funded a total of TWO new drug treatment
trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from
2006 through 2010 when NIMH funded 48 such trials . . .''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses identifying examples of research initiatives the NIMH
could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans. Those with the most severe
forms of mental illness deserve to be prioritized.
Sincerely.
______
Prepared Statement of Meals on Wheels America
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
Thank you for the opportunity to submit testimony concerning fiscal
year 2021 appropriations for the Older Americans Act (OAA) Nutrition
Program, administered by the Department of Health and Human Services'
(HHS) Administration for Community Living (ACL). On behalf of Meals on
Wheels America, the national network of community-based senior
nutrition providers and the individuals they serve, we are grateful for
your enduring support for the program, particularly in response to the
coronavirus (COVID-19) crisis in recent months. Despite crucial
investments in annual appropriations and emergency supplemental
funding, senior nutrition programs across the country face great
challenges, existing prior to COVID-19, in addressing the growing
demand for services with insufficient resources. Since the onset of the
current national emergency, local Meals on Wheels programs have been
responding on the front lines to deliver essential nutrition assistance
to older Americans in need and are experiencing a dramatic increase in
requests for meals, soaring costs and other unfamiliar challenges as
they adjust their operations amid the pandemic. For this reason, we
request a total of $1,028,753,000 for the OAA Nutrition Program--
Congregate Nutrition Services, Home-Delivered Nutrition Services, and
Nutrition Services Incentive Program (NSIP)--in fiscal year 2021. As
older adults will most likely need to continue to stay at home and
practice social distancing through the new fiscal year, our specific
appropriations requests are:
--$510,342,000 for Congregate Nutrition Services (Title III C-1)
--$336,342,000 for Home-Delivered Nutrition Services (Title III C-2)
--$182,069,000 for Nutrition Services Incentive Program (Title III)
This fiscal year 2021 ask represents a $70,000,000 increase for
Home-Delivered Nutrition Services and a $22,000,000 increase for
Nutrition Services Incentive Program, both of which are necessary to
meet the growing need for vital nutrition assistance and social
connection to seniors, who remain among those at greatest risk of
contracting and experiencing complications due to COVID-19. In total,
this is a $92 million (10 percent) increase above fiscal year 2020-
enacted funding levels and reflective of the total amount authorized
for the OAA Nutrition Program in fiscal year 2021 by the Supporting
Older Americans Act of 2020 (Public Law 116-131)--bipartisan
legislation to reauthorize the OAA and its programs through fiscal year
2024. As our country strives to respond, recover and rebuild from this
health and economic crisis, these nutrition programs and the services
they provide must be continue to exist and expand because they are a
lifeline for millions of our nation's most vulnerable.
The OAA Nutrition Program (i.e., Meals on Wheels) provides
nutritious meals, opportunities for socialization and safety checks to
adults age 60 and older--either in a group setting or directly in the
home--and has been at the forefront of addressing senior hunger and
isolation for nearly fifty years. Overseen by ACL's Administration on
Aging (AoA) and implemented at the local level through more than 5,000
community-based providers, the services offered through the program are
effective in promoting the health, independence and quality of life of
seniors.
However, despite broad support from the public, policymakers and
seniors themselves, the OAA Nutrition Program remains underfunded year
after year and has experienced diminished growth and reach during a
time when the country's older adult population is expanding. Due to
COVID-19, older adults are now also facing an unprecedented threat to
their health, autonomy and financial well-being. In a recent survey,
four out of five Meals on Wheels programs reported demand for services
had at least doubled since March 1, 2020.\1\ Accordingly, additional
Federal funding and flexibilities for utilizing OAA dollars are needed
for senior nutrition providers to adequately adapt and scale operations
to meet the rapidly growing and evolving needs of the communities they
serve.
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\1\ Meals on Wheels America. Survey of Meals on Wheels America
Membership conducted by Trailblazer Research between April 22-28, 2020,
https://www.mealsonwheelsamerica.org/learn-more/national/press-room/
news/2020/05/07/new-survey-data-demand-on-meals-on-wheels-national-
network-swells-and-wait-lists-grow-due-to-covid-19-pandemic.
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insufficient federal funding threatens a growing number of seniors
With approximately 12,000 individuals turning 60 every day, the
senior population is becoming increasingly endangered by hunger and
isolation. Nationally, 9.5 million seniors are threatened by hunger
(i.e., marginally food insecure)--and one in 13 individuals (7.7
percent) age 60 and older are food insecure or very low food secure.\2\
Social isolation--which has been amplified throughout the current
pandemic amid safety and social distancing measures--is another threat
for the nearly 17.5 million (24 percent) seniors living alone, with one
in five older adults reporting frequent feelings of loneliness prior to
COVID-19.\3,4\ Most older Americans possess at least one trait that
puts them at increased risk of experiencing food insecurity,
malnutrition, social isolation and/or loneliness, thereby increasing
the likelihood of experiencing myriad negative and consequential health
effects. Despite the wide recognition of the relationship between
healthy aging and access to nutritious food and regular socialization,
millions of seniors struggle to meet these basic human needs.
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\2\ Ziliak & Gunderson. The State of Senior Hunger in America 2017,
a report prepared for Feeding America, 2019, https://
www.feedingamerica.org/sites/default/files/2019-05/state-of-senior-
hunger-2017_full-report.pdf.
\3\ U.S. Census Bureau, American Community Survey (ACS) Demographic
Data, 2018, available on the Administration for Community Living's
(ACL) Aging, Independence, and Disability Program Data Portal (AGID),
https://agid.acl.gov/.
\4\ Hawkley, Kozloski & Wong. A Profile of Social Connectedness in
Older Adults, report prepared for AARP Foundation by Academic Research
Centers, NORC at the University of Chicago, 2017, https://
connect2affect.org/wp-content/uploads/2017/03/A-Profile-of-Social-
Connectedness.pdf.
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While the OAA Nutrition Program plays a pivotal role in addressing
the growing issues of senior hunger and isolation, Federal funding for
the program has not kept pace with demographic shifts or inflation,
leaving a huge gap between seniors served and those who are in need of
services but are not receiving them. Nationally, the OAA Nutrition
Program network served 20 million fewer meals in 2018 than in 2005--a
decline of more than 8 percent--despite the 60 and older population
increasing over 45 percent in that same period.\5\ Further underscoring
the need for more funding, a 2015 Government Accountability Office
study estimated that 83 percent of low-income, food insecure seniors do
not receive the congregate or home-delivered meals that they likely
need.\6\
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\5\ ACL, Administration on Aging (AoA). State Program Report (SPR)
2005-2018, available on AGID, https://agid.acl.gov/.
\6\ U.S. Government Accountability Office (GAO), Older Americans
Act: Updated Information on Unmet Need for Services, June 2015, https:/
/www.gao.gov/products/GAO-15-601R.
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Prior to the COVID-19 pandemic, nearly half of all Meals on Wheels
America members representing every state and the District of Columbia
reported maintaining an active waiting list due to insufficient
resources to meet the need for services in their communities.\7\ That
sobering reality is even worse now, as revealed in a recent survey
commissioned by Meals on Wheels America and conducted by Trailblazer
Research, with over half of Meals on Wheels programs surveyed reporting
that their existing waiting lists have grown by 26 percent, with 22
percent of them stating that their waiting lists have at least doubled.
Furthermore, the survey results indicated that new requests for Meals
on Wheels services have increased for nearly all programs, and as a
result programs are serving 56 percent more meals and 22 percent more
seniors each week since March 1 when concerns of COVID-19 and efforts
to employ social distancing began.\1\ The emergency funding provided in
the Families First Coronavirus Response Act (FFCRA) and the Coronavirus
Aid, Relief and Economic Security (CARES) Act provided a critical boost
in resources to assist OAA nutrition programs in response to the need
and demand for additional meals from both pre-existing and new clients
as a result of the pandemic. While this emergency action was necessary,
additional appropriations will be needed this coming fiscal year for
the senior nutrition network, as well. As the country continues to
combat the severe upsurge in food insecurity during this time of
economic hardship, there are likely far more seniors that are currently
in need of, but still not receiving, these critical nutrition and
social services.
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\7\ Meals on Wheels America. The More Than a Meal Comprehensive
Network Study, produced by Meals on Wheels America and conducted by
Trailblazer Research (public report in publication), 2019.
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serving those with the greatest social and economic need
The OAA exists to support seniors in the greatest social and
economic need, and as such, effectively targets services and stretches
limited financial resources accordingly. In 2018, the latest year for
which data is available, the OAA Nutrition Program provided over 73
million congregate meals and 147 million home-delivered meals to 2.4
million seniors.\5\ While impressive, it is still leaving too many in
need behind. Further, for many program participants, the volunteer or
staff member who delivers meals to their homes or serves them when it's
safe for congregate dining facilities to be open, may be the only
individual(s) she or he sees that day, and the meal may account for the
majority of her or his daily food intake.
The profile of home-delivered meal clients reveals the high degree
of vulnerability among recipients, with the majority being age 75 or
older, female, living alone and/or having three or more chronic
conditions. Among participants: 35 percent live at or below the poverty
level; 25 percent live in rural areas; 15 percent are veterans; and 28
percent are a racial and/or ethnic minority.\8\ Fortunately, the vital
services financed by the OAA Nutrition Program enable seniors with
these risk factors to remain safer, healthier and less isolated in
their own homes and communities.
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\8\ Mabli et al. Evaluation of the Effect of the Older Americans
Act Title III-C Nutrition Services Program on Participants' Food
Security, Socialization, and Diet Quality, Mathematica Policy Research
report prepared for ACL, April 2017, https://acl.gov/sites/default/
files/programs/2017-07/AoA_outcomesevaluation_final.pdf.
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The results of a 2015 study commissioned by Meals on Wheels America
found that seniors who received daily home-delivered meals were more
likely to report improvements in mental health, self-rated health and
feelings of isolation and loneliness, as well as reduced rates of falls
and decreased concerns about their ability to remain in their home.\9\
Additional studies have found home-delivered meal program participants
to experience less healthcare utilization and lower expenditures than
the non-participant controls, suggesting the program's potential to
reduce costs among patients with high-cost or complex healthcare needs
and help them remain independent in their communities.\10\ As public
spending on healthcare rises each year--largely attributable to a
rapidly growing senior population with complex health needs (which can
only be expected to increase amid the ongoing COVID-19 crisis), it is
imperative that we invest in these cost-effective programs that promote
health and independence, and reduce costly healthcare utilization.
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\9\ Thomas & Dosa. More Than a Meal Pilot Research Study, report
commissioned by Meals on Wheels America, 2015, https://
www.mealsonwheelsamerica.org/docs/default-source/News-Assets/mtam-full-
report_march-2-2015.pdf?sfvrsn=6.
\10\ Berkowitz et al. Meal Delivery Programs Reduce the Use of
Costly Health Care in Dually Eligible Medicare and Medicaid
Beneficiaries. Health Affairs (Vol. 37(4): 535-542; 2018), https://
www.healthaffairs.org/doi/10.1377/hlthaff.2017.0999.
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As a long-established and trusted community-based service, Meals on
Wheels is also a successful public-private partnership that, for
decades, has leveraged Federal OAA grants to offer nutrition and social
services with the help of millions of volunteers, who provide
innumerable in-kind contributions to support daily operations. Through
the delivery of these services, the program produces concrete results
and saves significant taxpayer dollars by reducing other costly
healthcare expenditures and providing a far more cost-effective and
desirable alternative to traditional long-term care options, often paid
for by Medicare and Medicaid.
delivering a strong return on investment for our nation
We understand the difficult decisions you face with respect to
annual appropriations bills, efforts to mitigate the immediate impact
of the global pandemic and recovery from this prolonged national
emergency. Providing a $92 million (10 percent) increase for the OAA
Nutrition Program is a proven and efficient use of taxpayer dollars and
critically needed at this time to ensure adequate resources are
available to meet the nutritional and social needs of our nation's most
frail seniors.
As the Subcommittee develops its fiscal year 2021 Labor-HHS-
Education appropriation bill, we request you provide $1,028,753,000 for
the OAA Nutrition Program so that local community-based Meals on Wheels
programs can continue serving and safeguarding a growing number of
seniors in need. As mentioned earlier, this funding level reflects the
total provided by the Supporting Older Americans Act of 2020, which
reauthorizes the OAA for 5 years and was signed into law in March 2020
after being passed unanimously, and is further evidence of the broad
and bipartisan backing for this robust funding in Congress. Thank you,
again, for your leadership, support and consideration. We are pleased
to offer our assistance to you and your staff at any time throughout
the appropriations process.
[This statement was submitted by Ellie Hollander, President and
CEO, Meals on Wheels America.]
______
Prepared Statement of the Medical Library Association and Association
of Academic Health Sciences Libraries
I, Mary M. Langman, Director, Information Issues and Policy,
Medical Library Association (MLA), submit this statement on behalf of
MLA and the Association of Academic Health Sciences Libraries (AAHSL).
MLA is a global, nonprofit, educational organization with a membership
of more than 400 institutions and 3,000 professionals in the health
information field. AAHSL supports academic health sciences libraries
and directors in advancing the patient care, research, education and
community service missions of academic health centers through visionary
executive leadership and expertise in health information, scholarly
communication, and knowledge management.
We thank the Subcommittee for the opportunity to submit testimony
supporting appropriations for the National Library of Medicine (NLM),
an agency of the National Institutes of Health (NIH), and recommend
$479.7 million for NLM in fiscal year 2021, a 5 percent ($22.7 million)
increase.
Working in partnership with the NIH and other Federal agencies, NLM
is the key link in the chain that translates biomedical research into
practice, making the data and other results of research readily
available to all who need it. NLM is taking on additional
responsibilities for NIH-wide efforts in data science and open science.
As health sciences librarians who use NLM's programs and services every
day, we can attest that NLM resources literally save lives. Therefore,
investing in NLM is an investment in good health. NLM addresses
Congressional priorities through rapid deployment of resources related
to health emergencies including response to the COVID-19 pandemic and
the opioid crisis, by providing clinical trial information, genomic
sequencing data, and public access to research literature.
Leveraging NIH Investments in Biomedical Research
NLM's budget supports information services, research, and programs
that sustain the nation's biomedical research enterprise. In fiscal
year 2020 and beyond, NLM's budget must continue to be augmented to
support modernization and expansion of its information resources,
services, research, and programs which collect, organize, and develop
new ways to make readily accessible rapidly expanding biomedical
knowledge resources and data. NLM maximizes the return on investment in
research conducted by the NIH and other organizations. It makes the
results of biomedical information accessible to researchers,
clinicians, business innovators, students, and the public, enabling
such data and information to be used more efficiently and effectively
to drive innovation and improve health. Rapid growth of data also
necessitates funding that will ensure long-term sustainability of these
valuable information resources.
NLM plays a critical role in NIH's data science and open science
initiatives. NLM leads the development, maintenance and dissemination
of key standards for health data interchange that are now required of
certified electronic health records (EHRs). NLM builds, sustains, and
augments a suite of almost 300 databases which provide information
access to health professionals, researchers, educators, and the public.
It supports the acquisition, organization, preservation, and
dissemination of the world's biomedical literature. In fiscal year
2019, NLM made genomic sequence data available in the cloud. NLM's
Sequence Read Archive (SRA) is the world's largest publicly available
repository of next-generation genome sequence data, with more than 9
million records comprising 25 petabytes of data. To improve access and
utility of SRA data, NLM uploaded the public access SRA data to two
commercial clouds that have agreements with NIH's Science and
Technology Research Infrastructure for Discovery, Experimentation, and
Sustainability (STRIDES) Initiative. This transition significantly
expands the discovery potential of the data. Freed from the limitations
of local storage and computational resources, users are empowered to
compute across the full corpus of SRA data without having to download
and store large volumes of data. Moving to cloud platforms also makes
it possible to develop customized tools and methods for asking research
questions of the data.
Growing Demand for NLM's Information Services
Each day, more than 6 million people use NLM websites and download
115 terabytes of data. Thousands of researchers and businesses submit
15 terabytes of data daily. Annually, NLM information systems process
more than six billion human requests and eight billion computer-to-
computer interactions. NLM's information services help researchers
advance scientific discovery and accelerate its translation into new
therapies; provide health practitioners with information that improves
medical care and lowers its costs; and give the public access to
resources and tools that promote wellness and disease prevention. Every
day, medical librarians across the nation use NLM's services to assist
clinicians, students, researchers, and the public in accessing
information to save lives and improve health. Without NLM, our nation's
medical libraries would be unable to provide quality information
services that our nation's health professionals, educators, researchers
and patients increasingly need.
NLM's data repositories and online integrated services such as
GenBank, dbGaP, Genetics Home Reference (GHR), PubMed, and PubMed
Central (PMC) are revolutionizing medicine and ushering in an era of
personalized medicine. GenBank is the definitive source of gene
sequence information. Each month, 2.1 million users accessed consumer-
level information about genetics from GHR, which contains more than
2,700 summaries of genetic conditions, genes, gene families, and
chromosomes. PubMed, with more than 30 million references to the
biomedical literature, is the world's most heavily used source of
bibliographic information with almost 1.35 million new citations added
in fiscal year 2019 and approximately 2.5 million users each day. NLM
also launched a new PubMed platform for an improved user experience,
including a new search algorithm with relevance rankings and better
tools for citations. PubMed Central is NLM's digital archive which
provides public access to the full-text versions of more than 6.1
million biomedical journal articles, including those produced by NIH-
funded researchers. On a typical weekday more than 2.5 million users
download more than 2.8 million articles.
NLM continually expands biomedical information services to
accommodate a growing volume of relevant data and information and
enhances these services to support research and discovery. NLM ensures
the availability of this information for future generations, making
books, journals, technical reports, manuscripts, microfilms,
photographs and images 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.
Improving Public Access to federally Funded Research Results
The Department of Health and Human Services (DHHS) continues to
work with NLM to ensure free public access to the results of taxpayer-
funded research. HHS operating divisions, and ten other Federal
agencies, use NLM's PubMed Central (PMC) as a common repository to
provide access to peer-reviewed publications resulting from their
research. In fiscal year 2019, NLM added 600,000 full-text articles to
PMC and continued linking articles to associated data by aggregating
data citations, data availability statements, and supplementary
materials. Since featuring these data links more prominently, daily
downloads of supplementary material have increased by 30 percent. A
subset of about 3 million articles in PMC is available for bulk
retrieval for text mining and other research purposes.
Disseminating Clinical Trial Information
ClinicalTrials.gov, the world's largest clinical trials registry,
now includes more than 320,000 registered studies and summary results
for more than 39,000 trials. As health sciences librarians who fulfill
requests for information from clinicians, scientists, and patients, we
applaud NIH and NLM for implementing requirements for clinical trials
registration and results submission consistent with the FDA Amendments
Act of 2007, and for applying them to all NIH-supported clinical
trials. These efforts increase transparency of clinical trial results
and provide patients and clinicians with information to guide
healthcare decisions. They also ensure biomedical researchers have
access to results that can inform future protocols and discoveries.
Partnerships Ensuring Outreach and Engagement in Communities Across the
Nation
NLM's outreach programs are essential to the MLA and AAHSL
membership and to the profession. Through the National Network of
Libraries of Medicine (NNLM), with over 7,000 members nationwide as of
fiscal year 2019, NLM educates medical librarians, health
professionals, and the general public about its services and provides
training in their effective use. The NNLM serves the public by
promoting educational outreach for public libraries, secondary schools,
senior centers and other consumer settings, and its outreach to
underserved populations helps reduce health disparities. NLM's
``Partners in Information Access'' provides local public health
officials with online information that protects public health.
Since May 2018, the NNLM has partnered with the NIH All of Us
Research Program to support community engagement efforts by United
States public libraries and to raise awareness about the program. To
date, 376 libraries and 101 community-based organizations across 33
states and the District of Columbia have held 1,135 events with more
than 40,000 people. Via the NNLM All of Us Community Engagement
Network, 654 libraries support health literacy, including offering
health and wellness programming in their communities. To support public
library staff in providing health programming to the community, NNLM
has also provided 491 classes, training, and workshops that have served
11,188 library staff.
NLM's MedlinePlus provides consumers with trusted, reliable health
information on 1,000 topics in English and Spanish. It attracts more
than 1 million visitors daily. NLM continues to enhance MedlinePlus and
disseminate authoritative information via the website, a web service,
and social media. MedlinePlus and MedlinePlus en Espanol have been
optimized for easier use on mobile phones and tablets. NIH MedlinePlus
Magazine and NIH MedlinePlus Salud are available in doctors' offices
nationwide, and NLM's MedlinePlus Connect enables clinical care
organizations to link from their EHR systems to relevant patient
education materials.
Strengthening Data Science and Open Science Capacity
NLM is a leader in data science and open science, including the
acquisition and analysis of data for discovery and the training of
biomedical data scientists. The library aims to strengthen its position
as a center of excellence for health data analytics and discovery, and
to spearhead the application of advanced data science tools to
biological, clinical and health data. NLM is building a workforce for
data-driven research and health by funding PhD-level research training
in biomedical informatics and data science. The library also partners
with NIH to ensure inclusion of data science and open science core
skills in all NIH training programs, and is expanding training for
librarians, information science professionals, and other research
facilitators. NLM is participating in NIH-wide efforts to foster a
culture that advances science and ensures the development and retention
of a diverse, safe, and respectful workforce for data-driven research
and health well into the future.
Responding to the Novel Coronavirus (COVID-19)
The health sciences library community thanks Congress for providing
NLM with the $10 million supplemental appropriations to prevent,
prepare for, and respond to the Coronavirus. NLM has been responding to
COVID-19's rapidly evolving situation through its suite of tools and
deep well of expertise in managing large and complex datasets and
making them accessible to the public. Our frontline healthcare
providers use NLM's databases to access the latest research datasets,
literature publications, and scientific information about COVID-19. For
example, NLM is:
--Making immediately available to the public in PubMed Central tens
of thousands of coronavirus-related research publication and
data contributed by major publishers
--Contributing to the COVID-19 Open Research Dataset (CORD-19), which
represents the most extensive machine-readable coronavirus
literature collection available for text mining to date, with
more than 30,000 full-text scholarly articles from PMC as of
mid-May 2020. The Text REtrieval Conference (TREC)-COVID
Challenge makes use of the CORD-19 dataset to help search
engine developers evaluate and optimize their systems in
meeting the needs of the research and healthcare communities.
--Providing the biomedical community free and easy access to genome
sequences from the coronavirus through the GenBank sequence
database.
--Providing information about US clinical trials related to COVID-19
via ClinicalTrials.gov, which is also now making available
information about trials listed in the World Health
Organization's international clinical trial registry.
--Extending standard terminologies to include terms related to COVID-
19, including codes for laboratory tests, chemical entities,
and indexing terms.
--Applying machine learning techniques to research conducted at NLM
to assist in identifying COVID-19 in X-rays and to identify and
categorize relevant published literature.
Supporting Biomedical Informatics Research and Health Information
Technology Innovation
NLM conducts and supports informatics research, training and the
application of advanced computing and informatics to biomedical
research and healthcare delivery. NLM's National Center for
Biotechnology Information (NCBI) focuses on genomics and biological
data banks, and the Lister Hill National Center for Biomedical
Communications (LHC), is a leader in clinical information analytics and
standards. Many of today's biomedical informatics leaders are graduates
of NLM-funded informatics research programs at universities nationwide.
A number of the country's exemplary electronic and personal health
record systems benefit from findings developed with NLM grant support.
A leader in supporting the development, maintenance, and free,
nationwide dissemination of standard clinical terminologies, NLM
partners with the Office of the National Coordinator for Health
Information Technology to support the interoperability of EHRs. NLM
also develops tools to make it easier for EHR developers and users to
implement accepted health data standards and link to relevant patient
education materials. In fiscal year 2019, NLM played a critical role in
the development, usage, and utility of a data exchange standard to
improve flow and availability of data, the Health Level Seven
International (HL7) Fast Healthcare Interoperability Resources
(FHIR(r)). NIH is encouraging funded investigators to use the FHIR
standard to capture, integrate, and exchange clinical data for research
purposes and to enhance capabilities to share research data. NIH has
also announced to the small business communities its special interest
in supporting applications that use FHIR in the development of health
IT products and services. To support these efforts, NLM is managing the
development and testing of FHIR tools that researchers can use to
increase the availability of high-quality, standardized research
datasets and phenotypic information for genomic research and genomic
medicine.
We look forward to continuing this dialogue and thank you for your
efforts to support funding of at least $479.7 million for NLM in fiscal
year 2021, with additional increases in future years.
______
Prepared Statement of the Mental Illness Policy Org.
I am writing on behalf of our nationwide membership to urge you to
focus NIMH on serious mental illnesses. We urge the committee to
require NIMH to allocate a minimum of 33 percent of it's budget to
finding better medications for schizophrenia, bipolar disorder and
other serious mental illnesses and specifically to supporting treatment
trials for those disorders.
The lack of cures and treatments--as a result of the lack of
attention from NIMH--is causing the seriously mentally ill to suffer,
communities to deteriorate, and is bloating costs for everyone.
As I documented in Insane Consequences: How the Mental Health
Industry Fails the Mentally Ill, in spite of $140 billion in Federal
spending, 392,000 seriously mentally ill are incarcerated, 755,000 are
on probation or parole, 40,000 seriously mentally ill go homeless,
downtowns are being turned into homeless camps, psychiatric hospitals
are closing, law enforcement is becoming a more dangerous profession,
and even educated and wealthy families can't get care for seriously
mentally ill loved ones.
This is largely because non-profit mental health organizations and
Federal mental health programs no longer focus on the seriously ill.
Mission-creep runs rampant. They wrap worthy social services such as
bad grades, divorce, angst about gender identity, unemployment, and
most recently, totally appropriate anxiety about COVID-19 in mental
health narrative and divert funds to them. The seriously ill are left
to suffer.
No agency is a better example of this than NIMH. The NIMH research
portfolio is a hodge-podge of basic research without any attempt to
prioritize the research that is most likely to lead to a cure or
treatment for serious mental illness. Circa 1980, my own mentally ill
family member was in a NIMH-sponsored inpatient research program at the
St. Elizabeth's Hospital. Those types of programs no longer exist. If
they were brought back we might be able to find a treatment or cure
that would avoid future tragedies like those that befell President
Ronald Reagan, Rep. Gabrielle Giffords, Rep. Steve Scalise, two capital
guards, multiple contractors at the Washington Navy Yard and many
others who were injured by persons with serious mental illness who
didn't believe existing treatments were worth using.
Please require NIMH to replace its mission-creep with mission
control and prioritize research on treatments, cures and medication
trials for serious mental illness. Thank you for all you do. Let me
know how I can help or if you need more information.
Sincerely.
[This statement was submitted by DJ Jaffe, Executive Director,
Mental Illness Policy Org.]
______
Prepared Statement of METAvivor
fiscal year 2021 appropriations recommendations
_______________________________________________________________________
--Please provide the National Institutes of Health (NIH) with an
increase of at least a $3 billion for fiscal year 2021 to bring
total agency funding up to a minimum of $44.7 billion annually.
--Please continue to support additional investment for the cancer
``moonshot'' as outlined by the 21st Century Cures Act and
otherwise ensure the National Cancer Institute (NCI) has
adequate resources.
--Please continue to emphasize the importance of Federal research
activities focused on controlling and eliminating cancer that
has already disseminated (Metastatic Cancer) through committee
recommendations and timely oversight of ongoing activities.
--Please support emerging efforts to modernize the Surveillance,
Epidemiology, and End Results Research Program (SEER) Registry
to better capture the experience of metastatic cancer patients
(as outlined by recommendations within the fiscal year 2020
House LHHS Appropriations Bill).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you once again for considering the views of
METAvivor and the stage IV metastatic cancer community as you work on
fiscal year 2021 appropriations for medical research. The community is
deeply grateful for the $2.6 billion funding increase provided to NIH
in fiscal year 2020. Please maintain this commitment to supporting
innovative medical research moving forward.
about metavivor
What is my involvement? I am President of METAvivor, a patient-
founded, volunteer-led, grassroots organization that funds vital
research to increase longevity and quality of life for metastatic
breast cancer patients. It is our sincerest hope that one day efforts
such as ours, efforts we hope you will also support, promote and
undertake, will one day make a difference for the more than 500,000
patients who die annually of a metastasized cancer in the U.S. alone.
Our disease is defined by the spread of cancer from its original
location to other vital organs in the body, such as the bones, lungs,
liver or brain. At present, the disease is fatal for 98 percent of
those diagnosed. METAvivor was founded in 2009 by four terminally ill,
metastatic breast cancer patients because everyone around them was
dying. One of our founders learned there were metastasis researchers
that had many research concepts, however, there was very little funding
for the research projects. METAvivor founders decided something had to
be done and began raising research funds for metastatic breast cancer.
Within 12 months of organizing, two founders had died, and not long
after a third founder died. Many more people joined to advocate for
additional metastatic cancer research funding and the community pressed
ahead. Today, we have one living founder, Dian ``CJ"Corneliussen, and
she along with the growing community of patient advocates, continue to
raise funding for metastatic cancer research.
Since METAvivor's founding in 2009, METAvivor has awarded 106
metastatic cancer research grants totaling $13.6 million despite
sustaining the deaths of 15 Board members. The organization continues
to grow, but there are limits to what we can achieve alone. We need
more funding for stage IV metastatic cancer research. Far more funding
is needed; far more interest is needed; and far more research must be
accomplished. After 10 years of doing this alone, it is high time other
organizations; especially the NCI which has a national responsibility
for all American citizens; even the terminally ill, does right by our
greater community and adds to its portfolio a program of respectable
size that addresses the issue and funds the research that will
ultimately, significantly extend life with quality and hopefully end
death for the metastatic cancer community as a whole.
the facts about metastatic stage iv cancer
Roughly 600,000 Americans die annually from cancer. Ninety percent
of these deaths are caused by a metastasis. If we wish to lower the
death rate, we must tackle metastasis. For more than 20 years, the
primary focus has been on preventing cancer altogether and if that
fails, catching it early. But aside from convincing people to stop
smoking, forbidding smoke in common areas and removing colon polyps
prior to malignancy, little progress has been made. For most cancers,
it is believed there are multiple causes, few if any of which are
known, making prevention a formidable goal. Improved equipment has
allowed some cancers to be diagnosed as early as stage 0; however,
stage 0 patients are also metastasizing. And although we are slowly
adding drugs to the treatment repertoire, a treatment's effectiveness
often runs out in 2-3 months. Thus, we empty our toolbox of drugs far
too quickly and we, metastatic patients, die. Saving lives is an
achievable goal but tragically is not being realized because the focus
continues to be prevent and early detect. Those goals have been
maximized. Backs have been turned to the metastatic community long
enough. It is high time to include metastasis as a major focus area..
my story
My name is Beth Fairchild. In my former life, I was an artist, a
mother, a wife, a daughter, a friend. Now, while I may still be all of
these, I have added fearless fighter and breast cancer advocate to the
list of things that make me, me. This is my new, cancer life. At 34, my
life was pretty normal. My husband and I were successful business
owners. We were raising our daughter and preparing to adopt another. I
was happy in my personal life and career, I worked out daily and ate
healthy. Then, there it was: cancer. After months of complaining of
intestinal discomfort and lack of energy, my doctors discovered my
ovaries were the size of grapefruits and in danger of rupture. They had
to come out and, because I had a family history (my mom was diagnosed
with breast cancer at 44 and my paternal grandmother was dead and
buried at 33), I decided on a total hysterectomy. My surgery was the
day after Mother's Day. Tissue samples were sent off to pathology, and
two days later, I was told I had breast cancer. After my diagnosis, I
came home to die. I was in agony from the pain of surgery and my head
was spinning. I couldn't see past that moment in time. But it got
better. Every. Day. My body healed. I got stronger. I endured 18 weeks
of chemo and survived! I was a 34-year-old, post-menopausal, bald-
headed, terminal cancer patient, but I was alive and LIVING. I set out
to take back control of my life.
My children were my first motivation. I saw the fear in their eyes.
Mommy couldn't assure them that things would be ok, but I could show
them I wasn't going to give up. I talked candidly with them about my
condition and treatment. I got up every morning and took them to
school, even the days I didn't feel like it. I was a mom first, and
they kept me going. My job kept me going. I'm an artist. I make
tattoos. My husband and I have five studios and I have made my career
in the tattoo industry. My specialty is permanent cosmetics and areola
restoration for breast cancer patients. Ironic, huh? On the days I had
to see my breast cancer clients, I knew what the procedure meant to
them, so I would leave chemo and go straight to the studio and help a
woman feel whole again. It was therapy to me. Then, I found support
groups. I had wanted to talk to and be with other women like me. There
were several groups available in my town in North Carolina; however, I
was the youngest person there by at least 20 or 30 years. I'm in no way
minimizing the severity of cancer in older patients, but it was hard to
hear others speak about not seeing their grandkids grow into adults
when I felt like I wouldn't even see my daughter graduate from high
school. When I was diagnosed with stage IV breast cancer, I was in the
prime of my life. Cancer is a daily struggle in any season of life, but
the under-40 demographic has to not only juggle surgeries and
treatments, but oftentimes careers, new marriages, or maybe dating.
Many have young kids already, but some women will never experience
childbirth because their ovaries are suppressed from hormonal
treatments or, like me, have had them removed in order to slow the
cancer's progress. Realizing the sacrifices of these men and women, as
well as myself, made, the lack of awareness about metastatic cancer was
disturbing. I thought my condition was rare, but, turns out, not so
much. There are 600,000 people with metastatic cancer. There are 41,000
with metastatic breast cancer that die every year, that is about 113
per day. We must increase research funding for new treatments. We must
make sure that families like mine have hope and that my two little
girls know that we are working toward life extending treatments.
Through local events and social media, I have tried to help spread
the under-reported message of metastatic breast cancer. I started a
social media movement on Facebook called Stomp Out BC using the hashtag
#dontignorestageiv created by METAvivor. I am now the Immediate Past
President of METAvivor and work alongside others to raise funds for and
draw attention to metastatic breast cancer until my dying breath. No
one can say for sure when my time will be up, or even for certain that
this ``thief of life'' we call cancer will be the cause, but short of a
miracle--and I do still believe in miracles--I will die with this
cancer in my body. In the interim, I hope the lives of the more than
600,000 people with stage IV metastatic cancer is considered when
making decisions about the future of cancer research and especially
funding the stage IV metastatic cancer research. METAvivor has worked
hard to fund research. Since 2009, we have funded over $10 million but
we need more...stage IV metastatic cancer needs more research.
[This statement was submitted by Beth Fairchild, Immediate Past
President, METAvivor.]
______
Prepared Statement of The Michael J. Fox Foundation
The Michael J. Fox Foundation for Parkinson's Research (MJFF)
appreciates the opportunity to comment on fiscal year 2021
appropriations for the U.S. Department of Health and Human Services.
Our comments focus on the importance of Federal investment in
biomedical research at the National Institutes of Health (NIH) and the
Centers for Disease Control and Prevention (CDC). MJFF supports at
least $44.7 billion for the NIH, as well as the continued appropriation
of $5 million to proceed with the pilot of the National Neurological
Conditions Surveillance System at the CDC.
In providing more than $900 million in Parkinson's disease (PD)
research funding since our founding in 2000, our Foundation has
fundamentally altered the trajectory of progress toward a cure.
However, MJFF investments are a complement to, rather than a substitute
for, federally funded research. Robust and reliable Federal funding is
imperative to drive progress. There are many potential Parkinson's
breakthroughs on the horizon, which are critically needed by the
millions living with this disease and the many more who will age into
Parkinson's risk.
national institutes of health research furthers progress toward new
treatments
Parkinson's is a chronic, progressive neurological disorder
affecting approximately one million people (including 110,000 veterans)
in the United States. Every year, Parkinson's costs Americans $52
billion--$25 billion of which is paid for by the Federal Government in
Medicare, Supplemental Security Income and Social Security Disability
Insurance costs. Without intervention, the prevalence of Parkinson's is
expected to more than double by 2040. The financial impact and rising
prevalence can be mitigated through research to treat and cure PD.
Investing in NIH research on the front end to develop innovative
therapies and cures can lower back-end costs to the Federal Government.
Ninety percent of the Parkinson's population relies on Medicare for
healthcare coverage, and up to one-third of people with PD are dual-
eligible for Medicaid due to their income or disability status. New
treatments would relieve the burden on Medicare, Medicaid and the
Department of Veterans Affairs. Additionally, NIH funds research in all
50 states, and every dollar of funding generates two dollars in local
economic growth. This is important for the economic strength and
vitality of cities and towns across America.
We appreciate the committee's continued support of NIH through
increases over the past several years. However, those increases only
helped NIH funding begin to catch up with inflation, and many good
studies remain unfunded. In 2018, NIH funded just under 20 percent of
investigator-initiated grants, leaving an untold number of
breakthroughs undiscovered. Patients and the medical community deserve
stable and reliable funding growth that allows for research progress
and supports innovative projects that drive cures. It is time to fund
the NIH in a robust way that allows for the National Institute of
Neurological Disorders and Stroke and the National Institute on Aging
at NIH to at least double its funding for Parkinson's disease research.
While industry and philanthropy have prioritized Parkinson's
research, these investments are not enough. Researchers rely on
federally funded basic research to make the discoveries from which come
deeper understanding and therapeutic development. The biggest non-
profit organizations and most generous philanthropists cannot come
close to the resources or scope of a Federal agency committed to human
health and economic strength such as NIH.
The following projects leveraged Federal dollars to push
Parkinson's research forward in the past year:
Coordination of the Global Parkinson's Genetics Program
The Global Parkinson's Genetics Program (GP2) is a five-year study
supported through the Aligning Science Across Parkinson's (ASAP)
initiative, created by the Milken Institute Center for Strategic
Philanthropy with support from the Sergey Brin Family Foundation. GP2
aims to create a resource of genetic data for scientists to analyze for
greater understanding of the genetic architecture of PD, which could
point to new measures and treatments for the disease. Led by NIH
Distinguished Investigator Andrew Singleton, PhD, GP2 will analyze
samples from more than 150,000 people with Parkinson's worldwide.
GP2 is leveraging funding from ASAP--of which MJFF is the
implementing partner, lending its grant-making infrastructure and
business and scientific expertise--and NIH resources to gather samples
and generate data from a diverse pool of participants around the globe.
These efforts will significantly expand the understanding of the causes
of Parkinson's disease and point to new ways scientists may intervene
to stop or even prevent it.
Molecular Fingerprinting and Data Analysis across Parkinson's Studies
Launched in 2018, the Accelerating Medicines Partnership
Parkinson's disease (AMP PD) program made strides in the past year
toward greater use and generation of data toward new disease insights.
AMP PD is a public-private partnership between the NIH, multiple
biopharmaceutical and life sciences companies, and MJFF and ASAP.
Managed through the Foundation for the NIH (FNIH), the program aims to
identify and validate the most promising biological targets for
therapeutics.
In 2019, AMP PD launched its Knowledge Portal harmonizing and
offering data from across four MJFF- and/or NIH-funded studies for
qualified researchers to compare toward novel disease insights and
identification of biomarker candidates and therapeutic targets. The
program also is funding protein profiling from study samples--
generating more data from which to learn--and data analysis of that
already in the AMP PD Knowledge Portal. This ambitious program is
building infrastructure and financially supporting efforts toward
breakthroughs.
Testing of New Treatments to Stop Parkinson's Disease
With supplemental MJFF funding, NIH scientists also are testing
novel therapeutic approaches to slow or stop Parkinson's progression.
For example, Richard Youle, PhD, at the National Institute of
Neurological Disorders and Stroke, part of the NIH, is working on a
project to boost breakdown of mitochondria (the cell's energy center).
Mitochondria build-up may be toxic and lead to cell death. Ellen
Sidransky, PhD, at the National Human Genome Research Institute, also
part of the NIH, is testing activation of calcium channel TRPML1, which
also may help the cell clear out impaired or excess cell parts. These
projects are moving the field closer to new treatments that could
protect cells, slow disease and ease symptoms.
centers for disease control and prevention support helps gather
valuable disease data
While there are rough estimates of the number of people diagnosed
with PD, we do not currently have accurate and comprehensive
information on how many people are living with the disease, who they
are and where they are located. This lack of core knowledge makes it
difficult to assess potential environmental triggers and other patterns
of disease. This absence of data also slows Parkinson's research and
drug development and makes it difficult to ensure healthcare services
are allocated properly.
The National Neurological Conditions Surveillance System (NNCSS)
was authorized by the 21st Century Cures Act, signed into law in
December 2016 (Public Law 114-255) and received its first appropriation
in fiscal year 2019. The CDC began its development and implementation
work, ensuring that the NNCSS is an effective tool for all
stakeholders--patients, researchers, Congress and the public. The NNCSS
will be developed in three stages, which CDC will carry out in
association with partners and stakeholders.
First, the agency is working on demonstrations using multiple
sclerosis (MS) and Parkinson's disease, to determine how it can have
the biggest impact by exploring complex data sources with innovative
analytic methods, and capturing lessons learned. This stage will take 2
years. In fiscal year 2020, CDC will evaluate the newly purchased data
sources and, as resources allow, will purchase and evaluate the final
data sources.
Second, the agency will build out the NNCSS for MS and PD, as
resources allow, using successful approaches from the demonstration
projects, and checking methods, costs, and opportunities to determine
which approaches will help efficiently extend the NNCSS to other
neurological conditions.
Third, it will apply these model approaches to extend the NNCSS to
other neurological conditions.
continued support for research is critical to drive progress
Momentum in Parkinson's disease research is strong. While
researchers are uncovering more about the causes and progression of
Parkinson's and testing many new treatments, many questions remain, and
more people are facing a PD diagnosis. We need the financial and data
resources to find answers and slow or halt the disease. Robust
investments in NIH and CDC will continue to propel research forward,
leading to life-changing treatments and, ultimately, a cure.
Please allocate $44.7 billion for the NIH, as well as the fully
authorized amount of $5 million to continue the work of the National
Neurological Conditions Surveillance System at the CDC. Thank you for
the opportunity to testify.
______
Prepared Statement of Montana Karen deg.
Prepared Statement of Karen Montana
The NIMH research goals for 2020-2025 offer little hope for
advancements for those with severe mental illness including
schizophrenia and bipolar disorder.
As a mother of a son with bipolar disorder and severe depression, I
urge you to make sure the NIMH spends an adequate amount of its budget
on helping people with these and others serious mental disorders. It is
gut wrenching and heart breaking to see my son suffer, and the impact
it has on our whole family, especially when I know there is money
available for more research and testing to find more effective
treatment for him.
Even after considerable response identifying new treatment
initiatives, the final draft of the NIMH showed little change to their
goals and objectives. This is a public agency being funding by our tax
dollars. We need relief and help for our family members who suffer
mental illness. The NIMH has an unprecedented budget for the next 5
years with which they could make a real impact on helping people with
severe mental illness live better lives.
Please ensure that this funding will be used to help find more
effective treatments for people with severe mental health disorders,
including bi-polar disorder. Until you have seen your child suffer the
ramifications with such an illness, you will never know the pain and
suffering he goes through, and that our family lives through. It is gut
wrenching and heartbreaking. We live in a constant state of anxiety and
trauma, not knowing what the next day holds for our son, and thus for
our family. Please, I beg you, make sure the NIMH does its job in
finding treatments for these disorders.
Sincerely and Desperately.
______
Prepared Statement of Mothers of the Mentally Ill
Dear Senators,
My son died by suicide March 18, 2019. His severe form of bipolar
disorder, which included psychosis, was extremely hard to treat. Not
knowing how to help, when I knew my son's brain was malfunctioning, was
a horrible vantage point for a mother. I watched an antiquated and
broken mental healthcare system fail. Medications that for decades have
provided limited relief were the first choice of providers, and they
created their own set of dangerous symptoms.
My son had a complicated brain disease, but no provider ever asked
questions about what might be happening in his brain. They instead
focused on his thoughts--using psychology to treat a psychiatric
condition. Only a few providers even knew that genetic testing could
provide clues about a person's metabolism and which prescriptions might
not work as planned. One doctor called it ``hocus pocus.'' That ill-
informed attitude is one result of underfunded research.
I request that you commit more NIMH dollars to research about cause
and treatment for the most serious forms of bipolar disorder and
schizophrenia. Dollars for this critical area of research have shrunk
desperately in the past 15 years, even as NIMH budgets have increased.
Severe brain impairment in a few individuals (about 2 percent of
the population) is costing society disproportionately. Like my son,
most individuals with the most debilitating psychiatric disorders end
up incarcerated, homeless, impoverished and often dead from suicide.
This is unconscionable in a society with sophisticated science that can
do so much better.
The medications my son was offered made him miserable, pre-
diabetic, and unable to think clearly. Before he got sick, he was a
state champion in extemporaneous debate and a competitive swimmer.
After he got sick, he struggled to remember which bus route would get
him home and rarely had energy to participate in physical fitness.
We need research to uncover clues about what happens in the brain.
When my son was 6, he had a bad Strep Throat with a fever of 105
degrees. After he began to recover, he developed an uncontrollable tic
disorder and was diagnosed with Tourette's Syndrome. Some basic
research led me to believe he suffered from Pediatric Autoimmune
Neuropsychiatric Disorder Associated with Strep (PANDAS). This was a
known, named condition and made sense for his diagnosis, but no one in
the psychiatric community knew what to do with that information.
My son's Tourette's Syndrome included explosive anger and may have
indicated a brain inflammation that ultimately made him susceptible to
bipolar disorder. He had many unusual and significant bacterial
infections throughout his life, and I believe his immune response to
infection was a significant factor in his psychiatric condition. There
was no pathway to investigate any of those possibilities because they
are not being studied in any significant way within mainstream medical
research.
I recently read Susannah Cahalan's book, Brain on Fire, an
extraordinary telling of her personal experience with an autoimmune
reaction to an illness that led to psychosis and other symptoms of
serious mental illness. Traditional psychiatric approaches failed to
help with old-school anti-psychotics. Cahalan's family sought help from
well-resourced and clever doctors who determined that her brain was
``on fire'' from inflammation--a condition called anti-NMDA receptor
encephalitis. She needed an entirely unique medical protocol, which
enabled her to recover her mind and her life. Cahalan's diagnosis is
called ``rare,'' but I question whether it truly is. I wonder how many
individuals sleeping in gutters, wasting away in prisons and jails,
might have a condition like Cahalan's. Why does no one bother to
investigate?
A dear friend has a son diagnosed with schizophrenia who has been
in 5-point restraints in a state hospital for the better part of the
past year. He is known to have epilepsy. He's had encephalitis.
Medication seems to make him worse. Electro-Convulsive Therapy (ECT)
sometimes helps, but it's controversial and hard to access. It seems
clear that he has suffered from seizures his whole life and his brain
is inflamed, yet psychologists and social workers have been tasked to
talk him out of his illness.
In order for psychiatry to step into its critical role as a field
of medicine that studies and treats the organ of its investigation--the
brain--sophisticated research about the root causes and treatments for
serious mental illness are a critical need.
Please require that significantly more NIMH dollars move toward
vital research about the causes and treatments for schizophrenia and
bipolar disorder. Thank you.
Sincerely.
[This statement was submitted by Jerri Clark, Director, Mothers of
the Mentally Ill.]
______
Prepared Statement of NAF
NAF is a national network of education, business, and community
leaders who work together to ensure high school students are college,
career, and future ready. NAF appreciates the opportunity to submit
testimony to the Senate Labor, Health and Human Services, Education,
and Related Agencies Appropriations Subcommittee on fiscal year 2021
report language for the Department of Labor and Department of Education
addressing work-based learning for high school students.
For 40 years, NAF has been partnering with existing high schools in
high-need communities to enhance school systems by implementing NAF
academies--small learning communities within traditional high schools.
We have partnered with hundreds of leading companies to provide work-
based learning, career-relevant knowledge and hands-on experiences.
Currently, NAF supports more than 110,000 students in 620 academies at
406 public high schools across 34 states, Washington, D.C., Puerto
Rico, and the U.S. Virgin Islands.
NAF's educational design ignites students' passion for learning and
provides employers in the students' local area the opportunity to shape
America's future workforce by transforming the learning environment to
include work-based learning experiences.
Work-based learning brings the classroom to the workplace and the
workplace to the classroom. This instructional strategy provides
students with a well-rounded skill set that goes beyond academics and
includes the soft skills needed to succeed in college and the working
world. Employers seek employees with workforce ready skills that
include collaboration, attention to detail, effective communication,
critical thinking, and active learning. NAF's approach to work-based
learning is centered on a continuum of experiences beginning with
career awareness, progressing to career exploration, and culminating in
career preparation activities, including paid internships.
Representatives from the employer community speak to classes, host
college and career skills workshops, and take part in mock interviews.
Students have the opportunity to tour worksites and network with and
shadow business professionals. Work-based learning culminates in a paid
internship that allows students to apply their classroom skills and
learn exactly what it takes to succeed in the workplace.
Today, 65 percent of all jobs, and nearly all high-paying jobs,
require some form of postsecondary education or training. Work-based
learning gives students opportunities to apply academic and technical
knowledge, while fostering workforce ready skills such as working in
teams, professionalism, problem solving, and critical thinking. These
skills can add up to 20 percent to a college graduate's earnings. Most
importantly, work-based learning helps students build positive
relationships with adults and grow their social capital.
Work-based learning is a winning solution for high school students,
employers, and their communities. It is imperative, especially to the
employers struggling to fill positions with skilled and diverse
employees, to encourage deeper and wider inclusion of this real-world,
time-tested, skills-based workforce development program into the
community. Together, the schools and employers create a talent pipeline
and a pool of future leaders.
There are more than 15.3 million high school students in the United
States, according to the U.S. Department of Education. High school
graduation is the pathway to the continued growth and development of
our youth and our communities. The potential long term impact of
students not graduating spreads beyond the lives of those students and
their families. For example, according to the report ``By the numbers:
Dropping out of High School'' (Breslow, 2012), a youth who drops out of
high school can expect to earn $10,386 less annually than a high school
graduate, and $36,424 less annually than a college graduate. In
addition, the report showed that a youth who does not graduate from
high school could cost taxpayers an average of $292,000 over a
lifetime.
Engaging high school students in work-based learning experiences
ensures these students graduate college, career, and future ready,
which is essential, especially for students who fail to see the
connection between high school academics and future careers. In a
recent study, students enrolled in a NAF program in grade 9 and were
identified as at-risk of not graduating were 5 percentage points more
likely to graduate from high school than their non-NAF counterparts.
NAF academy students have a 99 percent graduation rate.
Showing students the connection between school and careers is
critical. Work-based learning engages students in school; so they are
more likely to graduate and are prepared with the necessary skills.
This act of prevention benefits employers and the community at-large.
NAF urges the subcommittee to include the requested fiscal year 2021
report language as outlined below.
department of labor
NAF encourages communities to include experts in work-based
learning, particularly those with an expertise at the secondary level,
on local workforce boards. NAF urges the subcommittee to support and
advocate for the inclusion of the following report language in the
fiscal year 2021 Appropriations bill.
Research shows that participation in work-based learning during
high school has a positive impact on students and helps them secure
higher-quality jobs, boosting equity and economic opportunity. The
Committee urges the Department to encourage local secondary educational
authorities with expertise in work-based learning to be included as
part of the required education and training organization
representatives on local Workforce Development Boards to provide
guidance on work experience, including summer employment opportunities.
department of education
NAF encourages work-based learning included as a quality indicator
in state and local education accountability programs. NAF urges the
subcommittee to support and advocate for the inclusion of the following
report language in the fiscal year 2021 Appropriations bill.
To further support work-based learning and future career
preparedness for high school students, the Committee encourages the
Department to support including work-based learning and paid
internships in state and local education accountability programs as a
quality indicator. This will help ensure that decision makers can
monitor which student populations are or are not receiving access to
these opportunities.
conclusion
Thank you for your attention to the importance of including work-
based learning experiences for high school students. NAF appreciates
the opportunity to share its expertise; and thanks you for your
consideration of these requests that will help improve secondary
education for our nation's students and embolden their future success.
[This statement was submitted by JD Hoye, CEO, NAF.]
______
Prepared Statement of the National Alliance for Eye and Vision Research
NAEVR, which serves as the ``Friends of the National Eye
Institute,'' is a 501(c)4 non-profit advocacy coalition comprised of 50
organizations involved in eye and vision research, including
professional societies in ophthalmology and optometry, patient and
consumer groups, private funding foundations, and industry. NAEVR
thanks Congress, especially the House and Senate Appropriations
Subcommittees on Labor, Health and Human Services, and Education
(LHHS), for the strong bipartisan support for National Institutes of
Health (NIH) funding increases from fiscal years 2016 through fiscal
year 2020. The $11.6 billion NIH increase has helped the agency regain
some of the ground lost after years of effectively flat budgets.
NAEVR is grateful for the recent bipartisan agreements to provide
supplemental appropriations for NIH and other key health programs as
the healthcare and research community responds to the COVID-19
pandemic. To maximize our country's ability to develop countermeasures
against COVID-19 and to sustain the research momentum, NAEVR urges
Congress to appropriate $44.7 billion for the NIH, a $3 billion or 7.2
percent increase, over the fiscal year 2020 program level and allowing
for: meaningful growth above inflation in the base budget to support
promising science across all Institutes and Centers (ICs); funding from
the Innovation Account established through the 21st Century Cures Act
which would supplement NIH's base budget, as intended, through
dedicated funding for specific programs; and support for early-stage
investigators.
Additionally, due to the strain COVID-19 is placing on the research
infrastructure and strict limits of the fiscal year 2021 discretionary
spending caps, NAEVR supports bipartisan proposals to exempt key health
programs, including NIH, from the fiscal year 2021 caps. NAEVR also
requests that the LHHS bill is structured to facilitate emergency
funding, as necessary, to maintain the momentum of research emerging
from past NIH investment such that the return on that investment is
fully realized with new diagnostics and therapies.
NAEVR also urges Congress to appropriate $875 million for the NEI,
a $51 million or 6.2 percent increase over enacted fiscal year 2020.
The NEI is the world leader in sight-saving and vision-restoring
research. Congress must ensure robust NEI funding to address the
challenges of The Decade of Vision 2010-2020--as recognized by Congress
in S. Res. 209 in 2009--which include an aging population,
disproportionate risk/incidence of eye disease in fast-growing minority
populations, and the impact on vision from numerous chronic diseases
and their treatments/therapies.
Despite the total fiscal year 2016-2020 funding increases of $146
million, NEI's enacted fiscal year 2020 budget of $824.1 million is
just 21 percent greater than the pre-sequester fiscal year 2012 budget
of $702 million. Averaged over the eight fiscal years, the 2.6 percent
annual growth rate is less than the average annual biomedical inflation
rate of 2.8 percent, thereby eroding purchasing power, which in fiscal
year 2019 was below that of fiscal year 2012 and equivalent to that in
fiscal year 2000. Maintaining the momentum of vision research is vital
to vision health, as well as overall health and quality of life. Since
the U.S. is the world leader in vision research and training the next
generation of vision scientists, the health of the global vision
research community is also at stake.
With the COVID-19 pandemic, the NEI also faces additional
challenges, as both the working age population and students may
potentially rely exclusively on electronic communications devices and
e-learning platforms into the future. Since increased rates of myopia,
dry eye, and eye strain are associated with lengthy exposure to these
communications tools, the NEI will play a pivotal role in research that
ensures eye health along the continuum of life--and especially as it
relates to the vision care that children receive during their
developmental years.
nei leads in genetic and regenerative medicine research
As recently as the March 21, 2018, NEI 50th Anniversary
Congressional Reception, NIH Director Francis Collins, MD, PHD said the
following about NEI:
``Due to the architecture, accessibility, and the elegance of the
eye, vision research has always been a few steps ahead in biomedical
research. Understanding the genetic basis of eye diseases has led the
way for understanding the genetic basis of many common diseases.''
The NEI has been a leader in genetics/genomics research and
regenerative medicine.
--Genetics/Genomics: Vision researchers worldwide participating in
NEI's Glaucoma Genetics Collaboration Heritable Overall
Operational Database (NEIGHBORHOOD) Consortium have identified
133 genetic variants that predict within 75 percent accuracy a
person's risk for developing glaucoma related to elevated
intraocular pressure (IOP). Among the 133 variants, 68 had not
been previously linked to IOP, and their loci point to cellular
processes, such as lipid metabolism and mitochondrial function,
that contribute to IOP. By understanding these cellular
processes that can increase IOP and cause optic nerve damage,
clinicians may be able to make an earlier diagnosis and
researchers may be able to develop neuroprotective therapies to
potentially halt disease progression.
--NEI-funded research has also made discoveries of dozens of rare eye
disease genes possible, including the discovery of RPE65, which
causes congenital blindness called Leber congenital amaurosis
(LCA). As of late 2017, NEI's initial efforts led to a
commercialized, Food and Drug Administration (FDA)-approved
gene therapy for this condition. These gene-based discoveries
are forming the basis of new therapies that treat the disease
and potentially prevent it entirely.
--Regenerative Medicine: NEI is at the forefront of regenerative
medicine with its Audacious Goals Initiative (AGI) for
Regenerative Medicine, which launched in 2013 with the goal of
restoring vision. Initially asking a broad constituency of
scientists within the vision community and beyond to consider
what could be done if researchers employed this new era of
biology, the AGI currently funds major research consortia that
are developing innovative ways to image the visual system.
Researchers can now look at individual nerve cells in the eyes
of patients in an examination room and learn quite directly
whether new treatments are successful. Another consortium is
identifying biological factors that allow neurons to regenerate
in the retina. And the AGI is gathering considerable momentum
with current proposals to develop disease models that may
result in clinical trials for therapies within the next decade.
--In late 2019, NEI began a first-in-human clinical trial that tests
a stem cell-based therapy from induced pluripotent stem cells
(iPSC) to treat geographic atrophy, also known as the ``dry''
form of Age-related Macular Degeneration (AMD), the leading
cause of vision loss among people age 65 and older. This trial
converts a patient's own blood cells to iPS cells which are
then programmed to become retinal pigment epithelial (RPE)
cells, which nurture the photoreceptors necessary for vision
and which die in geographic atrophy. Bolstering remaining
photoreceptors, the therapy replaces dying RPE with iPSC-
derived RPE.
congress must robustly fund the nei as it addresses the increasing
burden of vision impairment and eye disease
NEI's fiscal year 2020 enacted budget of $824.1 million is less
than 0.5 percent of the $167 billion annual cost (inclusive of direct
and indirect costs) of vision impairment and eye disease, which was
projected in a 2014 Prevent Blindness study to grow to $317 billion--or
$717 billion in inflation-adjusted dollars--by year 2050. Of the $717
billion annual cost of vision impairment by year 2050, 41 percent will
be borne by the Federal Government as the Baby-Boom generation ages
into the Medicare program. A 2013 Prevent Blindness study reported that
direct medical costs associated with vision disorders are the fifth
highest -only less than heart disease, cancers, emotional disorders,
and pulmonary conditions. The U.S. is spending only $2.50 per-person,
per-year for vision research, while the cost of treating low vision and
blindness is at least $6,680 per-person, per-year. [http://
costofvision.preventblindness.org/]
In a May 2016 JAMA Ophthalmology article, NEI-funded researchers
reported that the number of people with legal blindness will increase
by 21 percent each decade to 2 million by 2050, while best-corrected
visual impairment will grow by 25 percent each decade, doubling to 6.95
million people-with the greatest burden affecting those 80 years or
older. [http://jamanetwork.com/journals/jamaophthalmology/article-
abstract/2523780?resultClick=1]
In an August 2016 JAMA Ophthalmology article, the Alliance for Eye
and Vision Research (AEVR, NAEVR's educational foundation) reported
that a majority of Americans across all racial and ethnic lines
describe losing vision as having the greatest impact on their day-to-
day life. Other studies have reported that patients with diabetes who
are experiencing vision loss or going blind would be willing to trade
years of remaining life to regain perfect vision, since they are
concerned about their quality of life. [http://jamanetwork.com/
journals/jamaophthalmology/article-abstract/2540516?resultClick=1]
Investing in vision health is an investment in overall health.
NEI's breakthrough research is a cost-effective investment, since it
leads to treatments and therapies that may delay, save, and prevent
health expenditures. It can also increase productivity, help
individuals to maintain their independence, and generally improve the
quality of life--as vision loss is associated with increased
depression/accelerated mortality.
In summary, NAEVR requests fiscal year 2021 NIH funding of at least
$44.7 billion and NEI funding of $875 million. NAEVR thanks the
Subcommittee for the opportunity to submit this written testimony,
especially as it grapples with the challenges now and into the future
from the COVID-19 pandemic.
For more information, 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
Mister Chairman and Members of the Subcommittee, I am pleased to
present the views of the National Alliance for Public Charter Schools
on the fiscal year 2021 appropriation for the Charter Schools Program
(CSP), which is administered by the U.S. Department of Education. I
thank the Subcommittee for maintaining strong support for the CSP,
including by providing a significant funding increase to $440 million
fiscal year 2019 and continuing that level in 2020. The CSP continues
to play a critical role in expanding educational opportunities for
families and in improving public school outcomes nationwide. As the
Subcommittee begins consideration of the fiscal year 2021 Labor, Health
and Human Services, Education and Related Agencies appropriations
legislation, we request an increase in funding for the CSP to at least
$500 million, with a reservation of 30 percent for the replication and
expansion of high-quality charter schools. We strongly urge the
Subcommittee to maintain a specific appropriation for the CSP and to
reject the Administration's education block grant proposal. The
President's proposal would jeopardize the ability of community leaders
to start new schools. We also urge you to continue your strong support
for Title I and the Individuals with Disabilities Education Act, both
of which provide critical funding for public schools, including charter
schools.
the growth and success of charter schools
Over the last year or so, and notwithstanding charter schools'
achievements, we have seen a number of misconceptions about those
schools put forward in the media and in other public discourse. So
let's be clear on what charter schools are: they are public schools,
supported by taxpayers and open to all students, without entrance
requirements. Each State decides who may authorize its charter schools
and how they are to be held accountable for meeting the goals laid out
in their charters. Moreover, while charter schools typically have more
flexibility than non-charter schools--in setting the curriculum, hiring
teachers and other staff, determining the school calendar, and adapting
to meet the needs of their students-they are required to meet the same
academic testing requirements as other schools.
Most importantly, although there is variety in the performance of
charter schools, in the main they are delivering for their students.
The 2015 Urban Charter School Study, from the Center for Research on
Education Outcomes (CREDO) at Stanford University, found that students
in urban charter schools gained an average of 40 additional days of
learning per year in math and 18 days in reading, compared to their
non-charter-school peers. Moreover, the study found that the longer a
student attends an urban charter school, the greater the gains; four or
more years of enrollment in such a school led to 108 additional
learning days in math and 72 in reading. Research in individual States
and communities, such as 2019 studies of North Carolina, Boston, and
Newark charter schools, provides additional evidence backing up these
national findings. Charter schools have succeeded in offering high-
quality options to students, particularly in low-income urban districts
where those options are most sorely needed and particularly for African
American and Hispanic students as well as students from low-income
families.
the importance of the federal charter schools program
The CSP was first authorized in 1994, as a bipartisan effort of
President Clinton and leaders of both parties in Congress. The program
was originally created to support the start-up of new schools, but now
also funds the expansion and replication of successful charter schools
and helps charter schools gain access to school facilities. It has
continued to receive bipartisan support over more than two and a half
decades.
Since its inception, the CSP has awarded some $3.9 billion to
States, charter management organizations (CMOs), and other entities. To
put that number in context, it's about 1 percent of the appropriation
for ESEA Title I LEA Grants over that time period. The result: the
number of charter schools has grown from only a handful in the early
1990s to more than 7,500 today. Many of those schools have relied on
the CSP to get off the ground because, while States and localities have
provided per-pupil funding to their public schools, they have not
provided new charter schools with funds for planning, staff training,
equipment and materials, renovations, recruitment, and other necessary
start-up activities. In addition, State appropriations have often not
given charter schools the same level of per-pupil support as non-
charter schools, and often have not addressed their facilities needs.
Unfortunately, with States now facing severe resource constraints
because of the COVID-19 crisis, insufficient State support for charter
schools could become even more of a problem over the next few years.
Charter schools more typically serve communities with low property tax
revenues, and thus depend more heavily than the average school on State
funding. When States experience reductions in income, sales, and other
taxes and thus have to cut funding for public education, charter
schools will be particularly affected.
Charter school enrollment--now at nearly 3.3 million students--has
grown rapidly, but it has not kept up with the demand for seats in
charter schools. Surveys indicate that 5 million additional students
would attend a charter school if space were available at a convenient
location. Many of those are students who attend schools identified as
in need of support and improvement under Title I, that is, schools that
are not meeting State performance targets either for the school as a
whole or for one or more student subgroups. The increase we are
recommending would enable the creation of charter schools to serve more
of the students and families who want them.
fiscal year 2021 request
As I noted at the beginning of my statement, our request for fiscal
year 2021 is $500 million, including 30 percent ($150 million) for
grants to CMOs for the replication and expansion of high-quality
charter schools. Although we understand that the amount of funding
available to the Subcommittee will be tight, because of the budget caps
and COVID-19 relief efforts, we strongly believe that this requested
increase would be a wise investment. As schools across the nation
grapple with the challenges of distance learning, charter schools have
shown incredible resilience and leadership. Charter school autonomy,
and the flexibility that it affords, allowed charter schools to pivot
very quickly to rise to the challenges presented by the closing of
school buildings. Schools like Common Ground in New Haven Connecticut
deliver free fresh produce directly to the doors of those in need
weekly; Impact Public Schools in Tukwila, Washington built partnerships
to provide their students with Wi-Fi hotspots, laptops and free meals;
and Springs Charter Schools in Florida offered their online learning
curriculum for free to all, reaching more than 5,000 students today.
An increase of $60 million would allow States and CMOs to support
the creation of new charter schools, reducing the waiting lists and
providing high-quality educational options to more families,
particularly those in communities where those opportunities are not
commonly available. In many cases the very communities hit hardest by
the virus and its economic fallout.
Our request would also enable more CMOs to replicate and expand the
charter schools they operate or manage. A study by CREDO found that the
schools funded through the Replication and Expansion competition have
made impressive growth in reading and math: more than half of the
grants have supported CMOs that outpaced non-charter schools in
academic growth in both subjects.
Finally, our request would help charter schools meet their very
significant school facilities needs. Charter schools generally do not
have the same access to the funding sources that support the facilities
needs of other public schools, such as municipal bonds, property tax
revenues, and State school facilities programs. They have had to scrape
by in buildings not designed for learning or use funds that should have
been available for instruction to cover facilities needs, or simply not
open at all for lack of an adequate building. The two small facilities
programs included in the CSP, Credit Enhancement for Charter School
Facilities and the State Facilities Grants, help fill some of this
unmet need.
conclusion
The National Alliance for Public Charter Schools takes great pride
in the growth and accomplishments of public schools over the last
quarter century. Our schools' enrollments continue to climb, and more
and more studies have found that charter schools are succeeding, that
they increase achievement and meet the other needs of a diverse and
often very needy student populations. Indeed, at a very critical time
in our nation's history, when innovative approaches to educating all
students are needed, charter schools stand ready to offer that
innovation and have a track record of doing so successfully. The
flexibility granted by their charters makes it feasible for them to
adopt to new operational challenges and succeed with the student
populations that are at the greatest risk of educational failure
because of the disruptions resulting from COVID-19. But they cannot do
so with insufficient funding.
This success of charter schools could not have been achieved
without the CSP, which continues to be a vital source of support. We
ask that you continue that support and accept our recommendation for
fiscal year 2021.
[This statement was submitted by Nina Rees, President and CEO,
National
Alliance for Public Charter Schools.]
______
Prepared Statement of the National Alliance on Mental Illness
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, the National Alliance on Mental Illness (NAMI) would
like to offer our views on the Subcommittee's fiscal year 2021 bill.
NAMI is the nation's largest grassroots mental health organization
dedicated to building better lives for the millions of Americans
affected by mental illness. NAMI advocates for improved research and
innovation, increased access to care, and comprehensive services and
supports for individuals living with mental health conditions.
high cost of mental illness in america in the u.s.
Approximately one in five Americans live with a mental health
condition--approximately 46.6 million people in 2017.\1\ Individuals
who live with mental health conditions are our neighbors, family
members, and friends. They contribute to all sectors of the U.S.
economy--yet the social and economic costs associated with mental
health conditions is devastating. In 2013, mental illness topped the
list of the costliest conditions in the U.S. at $201 billion, according
to a 2016 study.\2\ While this financial cost is an incredible burden
on U.S. healthcare spending, the personal cost of untreated mental
illness to individuals and families is much more devastating. At NAMI
we hear from countless individuals who share their own stories of a
family member or friend who couldn't reach their full potential because
of a lack of necessary, innovative treatment. Some also carry the
burden of someone lost to suicide. In fact, 47,173 Americans die by
suicide annually, and it's currently the tenth leading cause of death
in the United States.\3\ Additionally, suicide and self-injury cost the
U.S. $69 billion in 2015 alone.\4\ As you can see, the work of this
Subcommittee and your commitment to adequate investment in innovative
mental health research, and first-class treatments and supports is
vitally important to keep America strong and save American lives.
---------------------------------------------------------------------------
\1\ Gordon, J. (2018, May 15). National Institute of Mental Health.
Prevalence of Mental Illness. Retrieved from: https://www.nimh.nih.gov/
health/statistics/mental-illness.shtml. Date: 3 April 2019.
\2\ Roehrig, C. Mental Disorders Top The List of The Most Costly
Conditions in The United States: $201 Billion, Health Affairs, 2016.
DOI:10.1377/hlthaff.2015.1659
\3\ Suicide Statistics. American Foundation for Suicide Prevention.
Retrieved from: https://afsp.org/about-suicide/suicide-statistics/.
Date: 2 April 2019.
\4\ Ibid.
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fiscal year 2020 labor-hhs appropriations bill
NAMI would like to thank the Chairman, Ranking Member, and
Subcommittee for the bipartisan effort on the fiscal year 2020 enacted
bill, and the critical investments that were made for mental health
research and treatment. We are especially grateful for the $2.6 billion
budget increase for the National Institutes of Health (NIH), and the
$98 million increase for the National Institute of Mental Health
(NIMH). NAMI is also very appreciative of the additional $200 million
for the ongoing Certified Community Behavioral Health Clinics (CCBHCs).
nami fiscal year 2021 funding priorities for the national institute of
mental health
NAMI endorses the goal of at least $44.7 billion for the National
Institutes of Health (NIH), a $3 billion increase in base funding for
the agency. Additionally, NAMI supports the current NIMH strategic plan
and its high-level strategic objectives.
Advancing Services and Intervention Research & Investing in Early
Psychosis Prediction and Prevention (EP3)
Approximately 100,000 young Americans experience a first episode of
psychosis (FEP) each year.\5\ Intervening early is critical to altering
the downward trajectory associated with psychosis. Accordingly, NAMI
prioritized support for the NIMH Recovery After an Initial
Schizophrenia Episode (RAISE) Project, which developed Coordinated
Specialty Care (CSC) programs that are helping people experience
recovery. We urge further investment into maintaining CSC's positive
treatment and quality-of-life outcomes over the long-term. NAMI also
supports NIMH's Early Psychosis Prediction and Prevention (EP3)
initiative, which shows promise in detecting risk for psychotic
disorders and reducing the duration of untreated psychosis in
adolescents who have experienced early psychosis.
---------------------------------------------------------------------------
\5\ Fact Sheet: First Episode Psychosis. National Institutes of
Mental Health. Retrieved from: https://www.nimh.nih.gov/health/topics/
schizophrenia/raise/fact-sheet-first-episode-psychosis.
shtml. Date: 21 May 2020.
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Advancing Precision Medicine
NAMI remains supportive of the NIMH Research Domain Criteria (RDoC)
and its efforts to build a classification system based on underlying
biological and behavioral mechanisms, rather than on symptoms. Through
continued development, we believe RDoC will provide the precision
currently lacking in traditional diagnostic approaches to mental health
conditions.
nami fiscal year 2021 funding priorities for samhsa programs
NAMI supports programs at the Center for Mental Health Services
(CMHS) at SAMHSA that are focused on replication and expansion of
effective, evidence-based interventions to serve children and adults
living with mental health conditions. We are grateful for increases in
recent years for the Community Mental Health Services Block Grant
(MHBG) to its current level of $722.6 million.
Additionally, NAMI strongly supports the 10 percent set-aside in
the MHBG for evidence-based programs that address the needs of
individuals with early serious mental illness. As noted above, NAMI
endorses the Coordinated Specialty Care (CSC) model for collaborative,
recovery-oriented care. This evidence-based approach emphasizes shared
decisionmaking and should be the priority program for receiving funding
from this set-aside.
Request for Consideration of additional Set-Aside for Crisis Care
Services
As the Subcommittee is aware, there is an increased need for mental
health crisis care services to improve our nation's mental health and
combat the suicide and opioid epidemics. As such, NAMI supports a
funding increase for an additional $35 million to the MHBG to fully
fund a 5 percent set-aside for Crisis Care Services--as was included in
the House Labor-HHS Subcommittee's fiscal year 2020 bill. If funded, we
request the array of crisis care services to include centrally deployed
24/7 mobile crisis units, short-term residential crisis stabilization
programs, the implementation of evidence-based protocols for treating
individuals at risk of suicide, and regional or statewide crisis call
centers coordinating in real time.
Additional NAMI Fiscal Year 2021 Funding Priorities at CMHS
We support continued funding for all current programs at CMHS,
including $125 million for Children's Mental Health Services, $6.3
million for Criminal and Juvenile Justice Programs, $102 million for
Project AWARE state grants, $64.6 million for the Projects for
Assistance in Transition from Homelessness (PATH) program, $36.4
million for the Treatment Systems for Homeless portfolio, and $19
million for the continuation of the Assisted Outpatient Treatment (AOT)
pilot program and $7 million for the Assertive Community Treatment
(ACT) program. NAMI respectfully requests the Subcommittee consider a
$68 million increase to the National Suicide Prevention Lifeline, for a
total of $80 million and fully fund all Garrett Lee Smith (GLS) suicide
prevention grants consistent with fiscal year 2020, enacted.
Additionally, NAMI remains concerned about the proposed elimination of
the Primary and Behavioral Health Care Integration (PBHCI) program in
the fiscal year 2021 President's Budget (PB) Request. The PBHCI is a
critical program which supports collaboration and infrastructure that
increases primary and wellness care for children and adults with
serious mental health conditions, and we strongly encourage the
restoration of funding at $51.9 million.
Health Resources and Services Administration (HRSA)
NAMI recognizes the important work of HRSA, and therefore requests
$36.9 million for Mental and Behavioral Health, $102 million for the
Behavioral Health Workforce, and $10 million for Increasing Access to
Pediatric Mental Health Care--all level to fiscal year 2020, enacted
funding. These programs are crucial to supporting development of the
mental health workforce.
Fully Funding the 21st Century Cures Act
The Helping Families in Mental Health Crisis Act as included in the
21st Century Cures Act, Public Law 114-255, was a landmark piece of
legislation and represented a substantial leap forward for Americans
who live with mental illness. NAMI respectfully asks the Subcommittee
to fully fund all programs authorized including $6 million for Adult
Suicide Prevention programs and $2.5 million for Strengthening
Community Crisis Response Systems. These programs, if funded, will
ensure that we can capitalize on the advancements put forth in this
bill, and help more Americans living with mental health conditions to
realize that recovery is possible.
conclusion
NAMI would like to express our gratitude to the Chairman, Ranking
Member and the Subcommittee for your investments in the necessary
research, treatments, services and supports for Americans living with
mental health conditions.
______
Prepared Statement of the National Alopecia Areata Foundation
the foundation's fiscal year 2021 l-hhs appropriations recommendations
_______________________________________________________________________
--At least $44.7 billion for the National Institutes of Health (NIH).
--Proportional funding increases for National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS),
National Institute of Allergy and Infectious Diseases
(NIAID) and the National Center for Advancing Translational
Science (NCATS).
_______________________________________________________________________
Chairman Blunt and distinguished members of the Subcommittee, thank
you for your time and your consideration of the priorities of the
alopecia areata community as you work to craft the fiscal year 2021 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 a prestigious
Scientific Advisory Council. 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.
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 Clinical Trials
Registry which was established in 2000 with funding support from the
National Institute of Arthritis and Musculoskeletal and Skin Diseases;
NAAF took over financial and administrative responsibility for the
Registry in 2012 and continues to add patients to it. NAAF is engaging
scientists in active review of both basic and applied science in a
variety of ways, including the November 2012 Alopecia Areata Research
Summit featuring presentations from the Food and Drug Administration
(FDA) and NIAMS.
NAAF is also supporting legislation to provide coverage for cranial
prosthetics under Medicare. This bill will grant increased access to
cranial prosthetics and therapies for patients with alopecia areata and
other forms of medical hair loss. Many patients living with medical
hair loss suffer from a variety of diseases, including cancer. With no
known cause or cure, alopecia areata is an autoimmune skin disease
affecting approximately 6.8 million Americans, many of whom are
children.
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, 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 has led 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.
patient perspective
Rosie's mother explains their family's experience with alopecia
areata:
``As we struggled to understand the diagnosis of alopecia areata
and what it might mean for our two-and-a-half-year-old daughter
Rosie, the last of her remaining hair fell out. In the
meantime, we sought answers from books, from second (and third)
opinions, and genetic testing. We read medical journal
articles, sometimes in the middle of the night when we were up
with Rosie's little sister, looking for signs of hope that a
cure was just around the corner. We scoured the Internet for
miracles and success stories, for the magic bullet that would
return those soft brown curls back to Rosie's smiling face. We
tried countless treatments; ointments, creams, steroids, herbal
medicines, special diets, and even lifestyle changes designed
to reduce any stress a three-year-old might feel. We searched
Rosie's scalp daily, sometimes with a flashlight, for any sign
of new hair growth. Our hope that this would be a temporary
condition, even a funny story someday, slowly faded. The next
few months were filled with ups and downs. Sympathetic smiles
were far rarer than stares, and the stares were often paired
with inquisitive finger-pointing from younger children. Parents
would shush their children, 'Shhh--don't stare. Stop pointing.
It's not polite,' while we just kept right on grocery shopping
or waiting in line at Starbucks. When Rosie asked why they were
pointing, we'd explain they were simply curious, all the while
whisking her away from the pointers with a pit in our stomach.
One particular type of public comment bothered Rosie more than any
other; `Hey little guy, how are you today?' or, `Great
scootering, buddy!' She'd frown and tell people she wasn't a
boy, and usually she'd be too annoyed to explain further. She
began to ask, `Why do they think I'm a boy, I'm wearing pink?
Boys don't wear pink!' Of all the answers we'd had to provide,
this one was the toughest. By the end of the discussion, we
found ourselves explaining to our teary-eyed Rosie that
sometimes things happen to us that we can't control. So,
instead of focusing on fixing her baldness, we shifted to
raising a little girl who loves herself unconditionally, hair
or no hair.''
Thank you for the opportunity to testify before you today. NAAF
looks forward to working with you all to advance medical research and
public health activities that will improve patient outcomes for the
members of our community suffering from alopecia.
[This statement was submitted by Dory Kranz, Chief Executive
Officer, National Alopecia Areata Foundation.]
______
Prepared Statement of the National Association for State Community
Services Programs
As Executive Director of the National Association for State
Community Services Programs (NASCSP), I am pleased to submit testimony
in support of the Department of Health and Human Services' (HHS)
Community Services Block Grant (CSBG). We are seeking a fiscal year
2021 appropriation level of $775 million for CSBG. NASCSP believes that
this funding level will ensure that states and local communities have
the resources they need to lead the fight against poverty through
innovative, effective, and locally tailored anti-poverty programs that
help communities, individuals, and families achieve economic security.
NASCSP is the member organization representing the State CSBG
Directors in all 50 states, Washington D.C., and 5 U.S. territories on
issues related to CSBG and economic opportunity. NASCSP also provides
training and technical assistance to help State Offices implement
program management best practices and develop evidence-based policy.
The State Offices represented by our organization would like to thank
the members of this committee for their support of CSBG over the years,
particularly for the increase to CSBG in the fiscal year 2020 Labor-HHS
Bill and for recognizing the role of CSBG in response to the COVID-19
pandemic through supplemental funding provided by the CARES Act.
CSBG is a model example of a successful Federal-State-Local
partnership, a fact I can personally attest to having worked for over
20 years in various roles within the CSBG network. However, CSBG is
arguably one of the most misunderstood programs within the Federal
Government. This is evident in the Administration's justification for
eliminating CSBG in its budget. The administration claims that ``CSBG
funding is poorly targeted and not allocated based on performance.''
They also claim that ``CSBG also funds some services that are
duplicative of those supported by other Federal programs.'' My
testimony will illustrate that this could not be further from the
truth. I would like to highlight three main points in my testimony:
1. The structure of CSBG empowers states and local communities to
take the lead on reducing poverty, giving states wide
discretion to target and tailor funding as they see fit for
their unique conditions.
2. The robust local, state, and Federal accountability measures
of the CSBG Performance Management Framework are unique and
bold compared to other Federal programs, preventing duplication
and fostering continuous improvement.
3. CSBG creates impact in communities across the country by
leveraging additional private, local, state, and Federal
investments to fight poverty, serving as the thread that weaves
together and coordinates both private and public antipoverty
efforts.
structure
Critics of Federal anti-poverty programs emphasize the need for
state and local leadership to address poverty, asserting that state and
local leaders are best equipped to tackle the challenges facing their
communities. CSBG embodies this very principle. CSBG is a block grant
administered and managed by states, which distribute funds to a
nationwide network of over 1,000 local CSBG Eligible Entities, also
known as Community Action Agencies or CAAs. The CSBG network serves
every corner of America, touching urban, rural, and suburban
communities. In some rural counties, the CAA is the only human services
organization working to promote economic security in that community.
Community Action Agencies utilize CSBG funds to address specific
local needs, which may include services and programs that address one
or more of the core domains in which we work: employment, education and
cognitive development, income, infrastructure and asset building,
housing, health and social behavioral development, and civic engagement
and community involvement. The CSBG Act also requires that the work of
Community Action Agencies must be shaped by a community needs
assessment performed at least every 3 years. This process ensures that
CAA programs and services are evidence based and tailored to unique
community needs, rather than a one-size-fits-all solution. The needs
assessment prevents duplication and incorporates community feedback in
the strategic planning process. Furthermore, the CSBG Act requires at
least one-third of a Community Action Agency's board to be composed of
people with low-incomes or their representatives, ensuring that local
needs are accurately reflected in the priorities of the organization.
In addition to low-income representation, the CSBG Act also
requires Community Action boards be comprised of local elected
officials or their representatives and community stakeholders which
include local businesses, other helping organizations, professional
groups, or community organizations. This unique tripartite structure
assures that the Community Action Agency not only properly identifies
the needs of a community, but also identifies the available resources
and opportunities that can be leveraged to maximize outcomes and
impact. The tripartite structure of Community Action boards calls on
all sectors of society to join in the fight against poverty.
accountability
In addition to a structure that empowers states and local
communities, CSBG is bolstered by a Performance Management Framework to
ensure accountability at all levels of the network. This federally
established Performance Management Framework includes state and Federal
accountability measures, organizational standards for Community Action
Agencies, and a Results Oriented Management and Accountability (ROMA)
system. Under the Performance Management Framework, the CSBG Network
reports outcomes through the CSBG Annual Report. Within this reporting
mechanism, National Performance Indicators are used across the network
to track and manage progress, ensuring CAAs have the data they need to
improve and innovate. The ROMA system allows local communities to
strengthen their impact and achieve robust results through continuous
learning, improvement, and innovation. Furthermore, CSBG State Offices
monitor local agency performance and adherence to organizational
standards, providing training and technical assistance to ensure high
quality delivery of programs and services.
impact
CSBG is a sound Federal investment that produces tangible results.
Federal CSBG dollars are used to support and strengthen the anti-
poverty infrastructure of our communities. In fiscal year 2017,\1\ for
every $1 of CSBG, CAAs leveraged $7.36 from non-Federal sources. This
leveraging of funds allowed CAAs to expand and maintain highly
successful programs. Including all Federal sources, non-Federal
sources, and volunteer hours valued at the Federal minimum wage, the
CSBG Network leveraged $20.22 of non-CSBG dollars per $1 of CSBG.
Without CSBG, many rural communities across America would not be able
to implement critical programs that address poverty at both the
community and family levels. Terminating CSBG would be detrimental to
the lives of the over 15.3 million people with low-incomes who the CSBG
network served in fiscal year 2017. Here is just a snapshot of the
impact of CSBG:
---------------------------------------------------------------------------
\1\ Fiscal year 2017 data is the latest publicly available from the
Office of Community Services (OCS) within the Department of Health and
Human Services (HHS).
--173,775 unemployed, low-income people obtained a job as a result of
Community Action.
--52,220 low-income people with jobs obtained an increase in income
and/or benefits.
--38,947 low-income people achieved ``living wage'' employment and/or
benefits.
--425,445 low-income participants obtained healthcare services for
themselves or a family member.
--360,909 low-income families in CAA tax preparation programs
qualified for a Federal or state tax credit. (The expected
total amount of tax credits was $459,277,981).
--134,109 low-income people completed Adult Basic Education (ABE) or
General Educational Development (GED) coursework and received a
certificate or diploma.
Looking beyond the data, we can see that the CSBG Network is
delivering innovative, comprehensive, and effective programs across the
country that put individuals and families on a path out of poverty:
--Nationwide Pandemic Response and Recovery: As the COVID-19 crisis
has swept across America, Community Action Agencies are trusted
local partners implementing programs that provide support and
stability in these unprecedented times. CAAs have adapted
processes and procedures to continue operating and expand
programs such as emergency food distribution, energy
assistance, housing support, and other efforts in response to
the immediate impacts of the pandemic. Many CAAs have also
utilized technology to innovate and continue to provide Head
Start early childhood education and home visits virtually. INCA
Community Services in Oklahoma has delivered over 430 care
packages to seniors and other homebound individuals, providing
not only physical necessities, but also emotional support. The
CSBG network has also been recognized by Governors across the
nation as a critical partner in the recovery ahead. In
Kentucky, the state's Community Action Agencies have been
called on by the Governor to help direct and distribute the
Team Kentucky Fund. In Georgia, Community Action Agency leaders
have been tapped to serve on the Governor's community outreach
task force.
--Two Generation Housing Solutions in Washington: The Second Chance
Center (SCC) Rapid Engagement and Empowerment Project is an
initiative of the Benton-Franklin Community Action Committee.
The SCC is targeted to meet the needs of families with children
who are experiencing homelessness as well as those at-risk of
homelessness. The target populations and goals are two-fold;
first, to reduce the recidivism rate of families with children,
returning to homelessness, living doubled-up, or in imminent
danger of becoming homeless, and second to provide a safe
family-oriented day shelter with services to educate,
encourage, and assist in this process that works to promote
self-sufficiency, including job search skills, Life Skills, and
financial literacy. The initiative is on track to serve 120
people in its first year, helping families achieve greater
self-determination and self-sufficiency through solutions for
both children and parents.
--Economic Self-Sufficiency & Bundled Services in Mississippi:
Washington, Warren, Issaquena, Sharkey Community Action Agency
(WWISCAA) operates a comprehensive case management program to
help members of the community reach their full potential. The
main pillars of the program include: (1) Assistance with job
placement, employability skills training and soft skill such as
resume writing; (2) GED placements, work skill training and
vocational skills training for young adults; (3) intern
placement and job shadowing for low-income men of color; and
(4) Coordinated referrals for economic assistance and
healthcare from the county department of human services. The
outcome indicators used to measure success were the number of
jobs gained and maintained for 90 days, the number of GEDs
obtained, completion of vocational skills training programs,
attainment of Career Readiness Certifications, attainment of
professional licenses, and increase in the number of youth
attending post-secondary education. Results included over 2,600
measurable outcomes across employment, education, and income
management.
In closing, we ask the committee to fund CSBG at no less than $775
million for fiscal year 2021, the funding level necessary to grow and
sustain this nationwide network with an over 50-year record of success.
The structure of CSBG empowers states and local communities to take the
lead on reducing poverty, while prioritizing locally determined
solutions. CSBG is subject to the extensive accountability mechanisms
of the Performance Management Framework, ensuring effective and
responsible stewardship of funds at the Federal, State, and local
level. CSBG is producing concrete results, serving millions of
vulnerable Americans each year and implementing strategies that move
communities, individuals, and families toward economic security and
independence. Additionally, in the months ahead, the need for CSBG
programs and services will only increase due to the impact of COVID-19.
Community Action Agencies have a robust record of success helping
Americans to get back to work. In addition to helping hundreds of
thousands of Americans obtain employment every year, the CSBG network
played a critical role in the economic recovery from the last recession
10 years ago.
NASCSP looks forward to working with Committee members to ensure
that CSBG continues to help families achieve outcomes that strengthen
our communities and make a difference in the lives of our most
vulnerable neighbors. Thank you.
Respectfully submitted.
[This statement was submitted by Jenae Bjelland, Executive
Director, National Association for State Community Services Programs.]
______
Prepared Statement of the National Association of Councils on
Developmental Disabilities
Chairman Blunt, Ranking Member Murray and members of the committee,
the National Association of Councils on Developmental Disabilities
(NACDD), a national membership organization for the State Councils on
Developmental Disabilities (DD Councils), appreciates the opportunity
to present this testimony. NACDD respectfully requests that Congress
appropriate $80 million for the DD Councils within the Administration
for Community Living (ACL) in the Labor-HHS-Education appropriations
bill for fiscal year 2021 and clarify in report language that not less
than $700,000 of that amount be provided for technical assistance and
training for the DD Councils.
Authorized by the bipartisan Developmental Disabilities Assistance
and Bill of Rights Act (DD Act), DD Councils work collaboratively with
the University Centers for Excellence in Developmental Disabilities
(UCEDDs) and Protection and Advocacy program for Developmental
Disabilities (P&As), to ``assure that individuals with developmental
disabilities and their families participate in the design of and have
access to needed community services, individualized supports, and other
forms of assistance that promote self-determination, independence,
productivity, and integration and inclusion in all facets of community
life, through culturally competent programs.'' \1\ The DD Act design
threads these three distinctly different programs together to ensure a
well-trained cadre of experts provide services to individuals with DD
and their families, protect the rights of individuals with DD, and
ensure that people with DD are fully included in the work to improve
services and systems to make them fully inclusive. Working within this
Federal framework, the role of the DD Councils is to promote person-
centered and family-centered system improvements with and for people
with developmental disabilities.
---------------------------------------------------------------------------
\1\ 42 U.S.C. 15001(b).
---------------------------------------------------------------------------
For the past fifty years, Congress has recognized that DD Councils
are in a strategic position in each state and territory to invest in
dynamic and innovative programs that improve services and systems that
help people with developmental disabilities live in the community.
Appointed by Governors and comprised of at least 60 percent people with
DD and their families, DD Councils assess problems or gaps in the
system and design solutions. Innovative solutions from the DD Councils
often bring about public-private partnerships that make real changes to
systems such as employment, transportation, education, healthcare,
housing and more.
This year, DD Councils were quick to respond to the COVID-19
pandemic to advise governors and state agencies and fill gaps in
emergency services for people with I/DD and families. Expert council
staff and trusted local organizations provided concrete resources to
respond to emerging needs of individuals with developmental
disabilities and their families who have been impacted by the COVID-19
pandemic. For example, one of the thirty-three projects by the Illinois
DD Council supported direct care staff to be able to continue their
work under these unusual circumstances to provide the supports needed
for the people they serve. The Missouri DD Council established a COVID-
19 Scholarship Fund, which will provide opportunities for individuals
and/or family members to apply for one-time funding to use technology
as a way to address today's unique barriers to community living (e.g.
accessing telehealth and other supports during quarantine). The
Washington State DD Council's Informing Families Project worked with
self-advocates to create and disseminate accessible information about
the pandemic to people with I/DD in accessible formats (e.g. ``plain
language'') that has been downloaded by hundreds of people and shared
across the country.
This fiscal year 2021 funding request reflects the need for DD
Councils to direct resources through partnerships with local non-
profits, businesses and state and local governments, to address
obstacles to community living for people with DD that they encounter
every day as well as those that emerge unexpectedly during disaster and
public health emergencies, such as the recent pandemic. Community
living provides opportunities for children and adults with DD to live
their life to the fullest extent possible. People with DD are living
longer and contributing to the social and economic growth of our
country at historic levels. States and territories rely on DD Councils
to turn fragmented approaches into innovative and cost-effective
strategies to increase the percentage of individuals with DD who become
independent, self-sufficient and integrated into the community. DD
Council programs and funding helps people with DD realize competitive
and integrated employment, access to qualified direct support workers,
successfully transition to independent living, access affordable
housing, build leadership and advocacy skills, and more. DD Council
members also provide a critical and unique role in educating state and
local policymakers by directly participating in the design of state and
local government-funded supports and services affecting their lives.
DD Councils promote community living in the states through narrowly
tailored, state-specific initiatives. For example, even though persons
with developmental disabilities want to go to work and continue to be
contributing members to the workforce, national statistics indicate
that persons with developmental disabilities experience significantly
higher unemployment rates than their peers without disabilities. To
address this disparity, the Missouri DD Council invested funds for
people with I/DD to get and keep competitive jobs in integrated work
settings, improve transportation options and create homeownership
opportunities. The ``Show-Me-Careers'' project scaled up evidence-based
practices in eight pilot communities using approaches developed with
their local community in mind, including skill-building of youth,
career planning, and development of partnerships with the local
business community. The DD Council also partnered with three Regional
Planning Commissions and leveraged funding with the Missouri Department
of Transportation (MODOT) to launch MO-RIDES, a referral service that
connects riders to transportation providers. MO-RIDES works with
existing transportation providers to find affordable, accessible and
flexible transportation for people with DD who need a ride to work,
appointments or shopping, thus improving their quality of life, by
giving them greater access to their community. Finally, recognizing
that people with disabilities, including people with intellectual and
developmental disabilities (I/DD) face a severe housing crisis, the
Missouri DD Council supported the Home of Your Own (HOYO) project for
low-income (below 50 percent median) people with significant
disabilities. The HOYO program has helped over 30 Missourians with
developmental disabilities obtain homes throughout the state and
continues beyond the grant period as Missouri Inclusive Housing
Development Corporation (MoHousing).
Another example of local solutions stemming from DD Council efforts
comes from Washington. The popular understanding of Autism spectrum
disorder focuses primarily on children and the importance of early
detection and intervention. However, Autism is a lifelong condition and
supports and treatments change as people grow older. The Washington
State DD Council is leading a five-year Community of Practice to
explore different ways of supporting families with individuals with
Autism across his or her lifespan. Some of their work includes
developing strategies to address the needs of aging caregivers,
establishing an adult sibling support network, educating parents with
intellectual and developmental disabilities about parenting support
services, and more.
The Georgia DD Council is another great example of Councils
applying state-based solutions to obstacles to community living.
Individuals with disabilities should have the opportunity to live full,
self-determined lives in the community. That is why the Georgia Council
on DD is the lead supporter of the UNLOCK! Coalition. UNLOCK! works to
rebalance the state system of long-term services and supports, so that
fewer dollars are spent on institutional care and more dollars are
invested into home and community-based supports. Because of UNLOCK!,
self-advocates, their families, providers, and other allies
successfully advocated to bring additional resources for long term
supports and services for people with disabilities to their state.
The 56 DD Councils require continuous support in order meet the
requirements of the DD Act. The DD Act provides funding for technical
assistance to DD Councils on how to implement the DD Act.\2\ Previously
funded through Projects of National Significance within the
Administration for Community Living, starting in fiscal year 2018,
Congress authorized the same technical assistance within the
appropriation for DD Councils. Unlike previous years, the fiscal year
2018 and fiscal year 2019 legislation did not contain report language
to protect technical assistance funding at levels that reflect the need
for these services. Unfortunately, for both fiscal year 2018 and 2019,
the Secretary of Health and Human Services reduced funding both through
a departmental transfer as well as for other administrative needs in
the department. For that reason, NACDD respectfully requests that the
committee include report language reflecting minimum levels of funding
of not less than $700,000 for technical assistance and training.
---------------------------------------------------------------------------
\2\ The Information and Technical Assistance for Councils on
Developmental Disabilities is a federally funded technical assistance
project authorized by Section 129(b) of PL 106-402.
---------------------------------------------------------------------------
Please contact Erin Prangley, NACDD Director, Policy, at
[email protected] if you require additional information. Thank you
for consideration of this request.
______
Prepared Statement of the National Association of County and
City Health Officials
The National Association of County and City Health Officials
(NACCHO) is the voice of the nearly 3,000 local health departments-
including city, county, metropolitan, district, and tribal agencies-
across the country. As we are currently seeing with our nation-wide
response to the novel coronavirus (COVID-19), local health departments
are on the front lines of the response to any public health crisis.
However, years of underfunding have left them without the workforce and
funding to respond most effectively to this and other challenges.
Therefore, NACCHO requests that Congress include in its fiscal year
2021 spending bill at least $200 million to establish a public health
workforce loan repayment program at the Health Resources and Services
Administration (HRSA), as well as $8.3 billion in overall funding for
the Centers for Disease Control and Prevention.
Local health departments prepare and respond to all types of public
health emergencies. In recent weeks and months, public health
professionals in these departments have rapidly mobilized to serve on
the front lines of the COVID-19 crisis. The nation is seeing the
troubling result of years of funding cuts and stagnation. Today, our
system is under intense stress with frontline public health workers
diverting their attention to the COVID-19 response while trying to
continue the ever-important daily work of defending against chronic and
long-term disability and disease, keeping our food and water safe, and
addressing persistent challenges like substance misuse-problems that do
not disappear simply because a greater threat is present. The lack of
investment in the public health workforce and infrastructure is
exacerbated in local health departments that serve smaller populations
with smaller staffs who may not even have the workforce to remove from
regular duties to help coordinate the outbreak response in their
communities. Now is the time to better fund our public health
infrastructure, including our workforce.
public health workforce
NACCHO is requesting a $200 million appropriation to establish a
public health loan repayment program at HRSA. This program--modeled off
the success of the National Health Service Corps in bringing healthcare
providers to communities in need--will help health departments across
the country recruit and retain staff who can tackle 21st Century
challenges and increase health departments' capacity to keep the public
healthy and safe.
Governmental public health was hit hard by the Great Recession, and
while much of the rest of the public sector workforce has recovered or
grown, local and state health departments have not. In fact, local and
state health departments have lost nearly a quarter of their workforce
since 2008, shedding over 50,000 jobs across the country. A first step
to address the public health workforce shortage is enacting and
implementing a loan repayment program for public health professionals
who agree to serve 2 years in a local, state, or tribal health
department, in order to help recruit and retain trained staff. New
staff and volunteers are being brought into the field for the COVID-19
response. This program would provide an incentive to keep them long
term and help ensure that their experience is harnessed and available
before the next crisis hits. The COVID-19 emergency has shown the holes
in the public health infrastructure and the lack of surge capacity for
responding to an emergency at the same time as meeting other public
health needs. Structural investments are needed to be better prepared
before the next outbreak.
centers for disease control and prevention
NACCHO appreciates the increase in funding for the Centers for
Disease Control and Prevention (CDC) in fiscal year 2020 and urges the
subcommittee to support a top line of at least $8.3 billion for CDC in
fiscal year 2021. This is in line with the 22 22 campaign, to raise the
CDC's budget 22 percent by 2022, which was started in 2019 with support
from NACCHO. The need for core support for CDC is much greater than
this; however, this funding request takes into account limitations due
to budget caps.
In addition to rebuilding the workforce, investment in the CDC is
critical for local health departments to successfully implement
programs which keep our communities healthy and prepared to respond to
the ever-growing list of public health emergencies such as the current
COVID-19 outbreak. The CDC plays an important role in support of local
health departments in many ways, including: supporting local health
departments' ability to detect and respond to infectious disease and
outbreaks through national surveillance systems and alerts, providing
important subject matter expertise in the event of an outbreak of an
emerging infectious disease, providing logistics, communication,
analytics and other support functions during an emergency response.
Congress should support CDC as an agency and the individual programs
that it funds.
A few cities and counties receive funding directly from CDC;
however, much of CDC's funding for local health departments goes
through state health departments as the primary grantee. It is
critically important that the necessary amount of Federal funds is
allocated to local health departments who merge public health expertise
with thorough understanding of local conditions to keep all communities
healthy and safe. In addition, we ask the committee to ask CDC for
greater visibility as to how much funding provided to state health
departments reaches local communities through subgrants.
While emergency funds have been authorized to help respond to the
COVID-19 emergency, public health departments need predictable, robust
support to address health needs across the spectrum of infectious
disease, chronic disease and emergency preparedness. Whether the
department is responding to a measles outbreak, trying to solve their
community's substance abuse crisis, or investigating vaping related
illnesses, these funds go towards life-saving planning and response
efforts in each Senator's state.
The response to COVID-19 shows that robust Federal investment in
public health is needed to help people be safe and healthy. Thank you
for your attention to these recommendations to strengthen public
health.
[This statement was submitted by Lori Tremmel Freeman, MBA, Chief
Executive Officer, National Association of County and City Health
Officials.]
______
Prepared Statement of the National Association of
Drug Court Professionals
Chairman Blunt, Ranking Member Murray, and distinguished members of
the subcommittee, I am honored to have the opportunity to submit my
testimony on behalf of this nation's more than 4,000 drug treatment
courts and the 150,000 people they will connect to lifesaving addiction
and mental health treatment this year. Given the unprecedented success
of drug treatment courts and the growing need in communities around the
country for solutions to the addiction epidemic, I am requesting
Congress maintain level funding of $70 million for the fiscal year 2021
Drug Treatment Court Program at the Department of Health and Human
Services, Substance Abuse and Mental Health Services Administration
(SAMHSA).
In 2011, I graduated from the Stone County DWI Court in Stone
County, Missouri. After my eighth DWI arrest, I was looking at 7 years
in prison but was offered DWI court instead. The Stone County DWI court
provided me with the treatment, structure, accountability, and social
skills I needed to find my path to recovery. Today, I am a substance
use disorder counselor and part of the same DWI court team that helped
me achieve recovery. I am also the founder and director of Peeps in
Recovery and the first alumnus on the Missouri Association of Treatment
Court Professionals board of directors.
I have first-hand knowledge of the importance of combining
treatment with accountability. DWI courts and other treatment courts
hold offenders accountable for their actions while connecting them with
evidence-based drug treatment to address the underlying cause of the
crime so it doesn't happen again. Stone County's drug treatment court
program expanded to include models for adults, DWI offenders, and
veterans. The work of all three is ending the cycle of individuals
coming in and out of our justice system and committing crimes in
service to their addiction or mental health disorder.
Stone County receives funding from SAMHSA which allows our drug
treatment court programs to expand capacity, offering more evidence-
based treatment for more people in the justice system. SAMHSA dollars
allow the drug treatment court programs to partner with Drury
University in Springfield, Missouri for ongoing, independent
evaluations of our program, giving us the statistics that show our
Federal, state, and local funding is a positive investment in the
future of our community.
The Government Accountability Office finds drug treatment courts
reduce crime by up to 58 percent. Further, in what is widely regarded
as the most comprehensive study on drug treatment courts to date, the
Department of Justice, National Institute of Justice Multi-Site Adult
Drug Court Evaluation (MADCE) confirmed drug treatment courts
significantly reduce both drug use and crime, and found cost savings
averaging $6,000 for every individual served. The MADCE further found
drug treatment courts improve education, employment, housing, and
financial stability for nearly all participants. They are proven to
promote family reunification, reduce foster care placements, and
increase the rate of addicted mothers delivering babies who are born
drug-free.
But beyond these numbers, drug treatment courts are bringing hope
to so many. I started drinking when I was 11 years old. I told myself
that I would never act like my other family members when I was
drinking. There would be no violence, no turmoil, no trauma, and no
sickness. But learned behaviors have a way of repeating themselves when
you do not know any other way, and I made the same mistakes as my
family. My continuous drinking led to arrests, multiple jail sentences,
and combined two-and-a-half years in prison.
In 2010, I woke up handcuffed in a Stone County jail. I'd been
arrested on my eighth DWI charge, just shy of my 40th birthday. At that
moment, I conceded that, like my other family members before me, I
would die from this disease. When they brought me into the courtroom,
the judge called me by name and said something I'd never heard a judge
say he was going to help me. For the first time, I left a courtroom
with hope, something I'd longed to feel for years. After five days in
medical detox, I spent thirty days in inpatient treatment before
starting the DWI court program because I was that sick. My treatment
also included intensive outpatient services and medication-assisted
treatment.
The Stone County DWI Court not only provided treatment services and
accountability, they taught me the skills I needed to maintain
meaningful, healthy relationships. The court provided family counseling
for my adult son and me, showing us healthy ways to deal with anger and
pain without alcohol. The program broke our cycle of generational
addiction. I am proud my grandchildren have never seen me drink.
I strongly urge this committee to recommend level funding of $70
million to the Drug Treatment Court Program so people like me, and the
1.5 million others served by drug treatment courts in the last 30
years, continue to receive lifesaving treatment and accountability.
______
Prepared Statement of the National Association of RSVP Directors
The National Association of RSVP Directors (NARSVPD) appreciates
the opportunity to submit testimony recommending an fiscal year 2021
funding level of $63 million for the RSVP program, administered by the
Corporation for National and Community Service (CNCS).
This additional $12 million will help programs cope with the
effects of the Coronavirus pandemic, bring successful programs to
scale, enable more seniors live independently, support veterans and
military families, and meet other local needs.
Volunteer Match reports a nationwide need for 624,300 volunteers of
whom 223,700 are specifically to aid communities affected by the
Coronavirus. Many of these activities can be done by RSVP volunteers.
RSVP deploys more than 200,000 volunteers in more than 600 programs
to support the efforts of thousands of community organizations across
the nation. It provides opportunities for people 55 and over to make a
difference in their communities through volunteer service. It offers
maximum flexibility and choice to its volunteers by matching the
personal interests and skills of volunteers with opportunities to help
solve community problems.
The funds that we request will also help compensate for the loss of
non-Federal revenues as sponsors have suffered financially. Programs'
own fundraising events have been cancelled or delayed indefinitely.
The pandemic has changed the landscape for RSVP. NARSVPD conducted
a survey during the week of May 5-May 10. Most respondents report that
no more than about 30 percent of their volunteers are serving at the
present time, although it is clear that more volunteers could serve if
CNCS provided additional funding and administrative relief that gave
programs more flexibility.
Our survey revealed that senior volunteers are playing an important
role in combatting the pandemic and could do even more with increased
support.
Today, RSVP volunteers are doing grocery shopping, serving in food
pantries and Meals on Wheels programs preparing and delivering food to
those in need. They have instigated Pen Pal programs with school
students, nursing home residents, veterans, and others. Volunteers are
virtually tutoring and mentoring for students in need of reading
assistance. They are helping low-income people with income tax
preparation. They are planting community gardens. They are doing state
health insurance counseling by phone. They are conducting telephone/
Virtual Reassurance Programs. They are helping homebound individuals
who have limited access to transportation. Finally, they are
participating in phone banking and other emergency management
activities and providing medical transportation with appropriate
safeguards.
Respondents to our survey believe that getting back to original
numbers of volunteers will take time but is achievable if programs are
able to develop sample plans that insure that volunteer stations are
safe for volunteering; if they are able to put volunteers at ease by
providing hand sanitizer, gloves, and masks; if they can receive funds
for technology like Zoom to expand virtual volunteering; and, if CNCS
allows for budget flexibility for new and different supplies.
Among other ideas, programs would like the flexibility to recruit
volunteers below the age of 55, develop volunteer opportunities during
non-conventional hours, and expand virtual volunteer opportunities.
They also seek funds and training to use social media as a recruitment
tool.
We contemplate a ``hybrid'' volunteer culture that combines
traditional volunteering with new platforms and new technology and
serving both physically and virtually. This new approach to serving
will require funds for technologies that enable virtual volunteering
and for training volunteers. Further, if staff needs to work remotely,
it will need laptops to replace phones.
It will also require flexibility at the program level to meet
evolving local needs including changing outcome and performance
measures to reflect new realities, providing safety measures for
volunteers and offices, encouraging volunteer safety measures to
reassure older volunteers, counseling for volunteers to address their
concerns and fears, and help to integrate older volunteers who are
computer illiterate into virtual volunteering.
Programs could clearly benefit from sharing best practices about
virtual volunteering.
With Congressional support, the Corporation can facilitate the
transition to the post-Corona world. It can lower age of eligibility to
45, administer liability waivers as needed, and develop contingency
plans if there is a winter resurgence of the virus. CNCS should allow
RSVP Directors to provide mileage reimbursement to existing volunteers
unable to volunteer because of a state Stay at Home Order. CNCS could
develop and disseminate strategies to address the specific concerns of
older volunteers, purchase gloves, masks and other PPE equipment to
distribute to programs. It can work with IRS to relax rules on tax
preparation to enable preparers to be more efficient as drop off sites.
It could develop a blanket MOU that would allow programs to operate in
other service areas as long as they are not competing to perform the
same service.
In short, the additional appropriation we seek can bring about a
new era for RSVP in which volunteers perform virtual as well as
traditional forms of volunteering.
The pandemic has exacerbated several trends affecting seniors.
Older Americans are facing higher costs for assisted living and
healthcare and are facing greater social isolation. In many parts of
the country-especially counties in the rural Midwest- older Americans
are ``aging in place'' because disproportionate shares of young people
have moved elsewhere. This leaves seniors dependent on a frayed social
safety net and dependent on volunteers for needed services.
According to the Population Reference Bureau, ``The aging of the
baby boom generation could fuel a 75 percent increase in the number of
Americans ages 65 and older requiring nursing home care, to about 2.3
million in 2030 from 1.3 million in 2010. Demand for elder care will
also be fueled by a steep rise in the number of Americans living with
Alzheimer's disease, which could nearly triple by 2050 to 14 million,
from 5 million in 2013.'' The need for RSVP has never been greater.
Volunteers improve the quality of life for volunteers and those
they help.
According to an article published on April 22, 2018 in the Wall
Street Journal, a study of 2,705 volunteers age 18 and older from found
that 75 percent of those who volunteered in the past 12 months said
volunteering made them feel physically healthier. A much larger study-
one involving more than 64,000 subjects age 60-suggests that
volunteering slows the cognitive decline of aging. The author of that
study reported, ``The effect is significant. It's consistent.''
Further, she said, ``we find that as people volunteer, their cognitive
health scores improve. If they don't volunteer, their cognitive scores
decline faster.'' The reasons behind volunteering's boost to cognitive
health have to do with the unique characteristics of such activity.
Unlike paid work, there is a ``different subjective well-being'' or
``warm glow'' that a volunteer experiences from helping people.
Volunteering is also unique ``because it supplies mental, physical and
social stimulation in one package.'' ``You have to move around, you
interact with people, you think about activities.''
Baby boomers are also particularly susceptible to loneliness, which
undermines health and is linked to early mortality, and has been found
to shorten lives as much as smoking or drinking. Being lonely may be
worse than being obese. A study of recently widowed older adults found
that ``higher intensity volunteering may be a particularly important
pathway for alleviating loneliness among older adults.''
A recent study of more than 64,000 subjects age 60 and older
suggests that volunteering slows the cognitive decline of aging. The
study found that volunteers score on average about 6 percent higher in
cognitive testing than non-volunteers. The author concludes, ``We find
that as people volunteer, their cognitive health scores improve. If
they don't volunteer, their cognitive scores decline faster.''
RSVP is a valuable resource because it is not means tested and
recruits volunteers without regard to income. Usually, most serve
between 10 and 40 hours a week, but there is no set schedule. RSVP is
flexible allowing volunteers improve the lives of their neighbors and
friends every day.
RSVP is cost-effective and an excellent investment. The average
Federal RSVP grant is about $80,000. This is less than the $90,156,
which was national annual median cost of a semi-private room in a
nursing home in 2019. In many states, it costs more to put one senior
in a nursing home for a year than it does to support an entire RSVP
program. Using Independent Sector's estimate of the value of an hour of
volunteer service, RSVP volunteers provide more than $1 billion worth
of service to the nation each year.
RSVP is a ``destination'' for retiring ``baby boomers.'' Before the
Coronavirus hit, some 10,000 ``baby boomers'' retired every day and
will do so every day for the next 20 years. RSVP is the only national
program able to place large numbers senior volunteers in high quality
volunteer positions. CNCS reported that RSVP has increased the number
of baby boomers in the program and provides those volunteers with high
quality activities
RSVP helps other seniors to live independently. RSVP volunteers
help keep seniors in their homes.
RSVP volunteers support veterans and military families.
We believe that restoring funding for RSVP to $63 million will help
RSVP transition into a more flexible and adaptable program that will
result in significant benefits to both the volunteers and the
communities they serve.
For additional information, contact: Betty Ruth, NARSVPD President,
at [email protected] or Gene Sofer at [email protected].
[This statement was submitted by Betty M. Ruth, President, National
Association of RSVP.]
______
Prepared Statement of the National Association of State Head Injury
Administrators
Dear Chairman Blunt and Ranking Member Murray:
On behalf of the National Association of State Head Injury
Administrators (NASHIA), thank you for this opportunity to submit
testimony regarding the fiscal year 2021 appropriations for programs
authorized by the Traumatic Brain Injury (TBI) Program Reauthorization
Act of 2018 administered by the U.S. Department of Health and Human
Services (HHS); and the National Institute on Disability, Independent
Living, and Rehabilitation Research (NIDILRR) program authorized by the
Workforce Innovation and Opportunity Act (WIOA) of 2014. WIOA
transferred NIDILRR from the Department of Education to HHS and is
Administered by the Administration for Community Living (ACL). For
fiscal year 2021 NASHIA is requesting:
--$19 million for HHS' Administration for Community Living's (ACL)
TBI State Partnership Grant Program to provide funding to all
states, territories and District of Columbia;
--$6 million for the ACL Protection & Advocacy (P&A) Grant Program to
increase the amount of the awards to each state P&A program;
--$6.727 million for the Centers for Disease Control and Prevention's
(CDC) TBI program authorized by the TBI Act of 2018 and
administered by the National Center for Injury Prevention and
Control (NCIPC)
--$5 million additional funding for the NCIPC to establish and
oversee a national concussion surveillance system authorized by
the TBI Program Reauthorization Act of 2018.
--$15 million over 5 years to expand NIDILRR research, administered
by ACL, with the additional funding to expand the number of
NIDILRR TBI Model Systems from 16 to 18.
In addition, NASHIA supports funding for CDC's and ACL's older
adult falls prevention program ($2.05 million and $5 million) and the
injury control research centers ($9 million).
In 2013, 2.8 million Americans sought treatment for or died from a
TBI as the result of a car crash, fall, sporting or recreational
injury, an assault or other contributing factor, impacting how a person
is able to return to school, work, home and community due to the
resulting cognitive, emotional, physical problems. It is a complex
disability that challenges states' ability to provide the right
services at the right time. As no two people with brain injury are
alike, no two states are alike in how they provide services, supports
and resources.
The HHS' ACL Federal TBI State Partnership Grant Program is the
only program that assists states in addressing the complex needs of
individuals with TBI. Two years ago, ACL awarded 3-year grants to 24
states at either $300,000 or $150,000 annually to improve and expand
service delivery. Last year, the ACL awarded grants to three more
states in the amount of $150,000 each year for 2 years. Considering the
number of individuals who sustain a TBI each year and the number who
are living with a TBI, this amount is certainly inadequate for states
to address the extensive needs to assist individuals to live as
independently as possible.
Current state grantees have identified and are assisting high risk
populations, which include youth and adults with TBI in juvenile
justice and criminal justice systems; older adults with fall-related
TBIs; returning servicemembers and veterans; and young children in pre-
school programs through screening, training, and linking individuals to
services. Some states are also addressing such issues as TBI and opioid
misuse; improved linkages from hospital to home and community; and
improving and expanding state and Federal funding streams that may be
available for home and community-based services in lieu of nursing
facility level of care. At the end of each grant funding cycle, states
have found it difficult to continue these activities without increased
and sustainable funding to help to continue this important work.
Over the course of recovery, there are many entities involved that
are difficult for those with a TBI and their families to negotiate.
These entities include emergency departments; medical and
rehabilitative facilities and programs, such as trauma designated
hospitals; post-acute rehabilitation programs; education, if school
aged; vocational rehabilitation, if returning to work; therapies to
maintain physical and cognitive functioning; and community services and
supports to enable the individual to return to the community to live as
independently as possible. Payers for these type of services include
private health insurance, Workers' Compensation; Medicaid; Medicare;
state revenue; private pay; and public assistance programs. Navigating
this path to recovery is overwhelming for individuals and their
families. To assist with the coordination of rehabilitative care,
services and supports, many states administer service coordination or
case management systems supported by Medicaid, state funding or
dedicated funding from fines or fees, referred to as trust fund
programs. Not all states, however, have this resource and those states
that do, may not have adequate provider networks throughout the state.
States primarily incur the burden of TBI with regard to individuals
who need on-going, crisis or short-term services and supports that are
not paid for through private healthcare insurance plans. About half of
the states have enacted legislation to establish a trust fund program
for such purposes; a few state legislatures appropriate general revenue
to fund services; about half of the states have implemented brain
injury Medicaid Home and Community-Based Services (HCBS) waiver
programs; and some state programs use a combination of these funding
sources to support the array of needs. These services include post-
acute rehabilitation; personal care; service coordination or case
management; assistance with activities of daily living; in-home
accommodations and modifications; transportation; and therapies,
including behavioral, cognitive, speech-language and physical
therapies. With limited state resources to address these needs, many
individuals, particularly those with behavioral issues, addiction
problems, and poor judgment, will find themselves homeless or in
correctional facilities. The Federal grant program provides additional
resources to address these issues.
The ACL's Administration on Intellectual and Developmental
Disabilities, which administers the TBI State Protection & Advocacy
(PATBI) grant program, awards grants to each state and territory at a
minimum of $50,000. The requested amount will increase the amount
awarded to state and PATBI grantees.
The requested $5 million for the CDC's National Center for Injury
Prevention and Control to establish and oversee a national concussion
surveillance system will greatly assist states as they target their
resources to better meet and understand the needs of individuals who
sustain a concussion. States also benefit from research conducted by
the TBI Model Systems funded by NIDILRR), also housed in the ACL, to
assist with ``best practices'' to ensure good outcomes.
In keeping with our mission, NASHIA, a nonprofit organization,
works on behalf of states to promote partnerships and build systems to
meet the needs of individuals with TBI with the goal of all states
having resources to assist individuals with TBI to return to home,
community, work and school after sustaining a brain injury, as well as
assistance to family members who often serve as primary caregivers.
Federal funding is needed to help states to address injury
prevention, including high risk populations such as older adult falls,
and to help states to better determine and address needs through ACL
TBI grants. Should you wish additional information, please do not
hesitate to contact Becky Corby, NASHIA Government Relations, at
([email protected]) or Susan L. Vaughn, Director of Public
Policy, at ([email protected]). Thank you for your continued
support.
[This statement was submitted by Susan L. Vaughn, Director of
Public Policy,
National Association of State Head Injury Administrators.]
______
Prepared Statement of the National Association of State Long-Term Care
Ombudsman Programs
Chairman Blunt and Ranking Member Murray, I present this testimony
on behalf of the nearly 71,000 residents in Washington State's long-
term care facilities and in collaboration with the National Association
of State Long-Term Care Ombudsman Programs (NASOP). As you know, we are
immersed in our work to serve the residents of long-term care
facilities under the terrible cloud of the COVID-19 pandemic.
Therefore, this testimony has not been updated since last year. Our
requests, however, are still relevant to our current needs. Thank you
for your past support of State Long-Term Care Ombudsman Programs
(SLTCOPs) and the vulnerable citizens that it serves, particularly in
the CARES Act. I submit this statement and the funding recommendations
for the fiscal year 2021 for SLTCOPs administered through the
Administration for Community Living, in the Department of Health and
Human Services to include:
--$20 million for assisted living ombudsman services under Title VII
of the Older Americans Act;
--$35 million for our current core funding under Title VII of the
OAA; and
--$5 million under the Elder Justice Act for training and services to
address increasing abuse, neglect, and exploitation, including
related to staff that are part of the opioid crisis.
Long-term care ombudsmen help older adults and people living with
disabilities have a good quality of life, receive quality care, and be
treated with dignity. LTC Ombudsmen are paid professionals who recruit,
train and oversee teams of local volunteers who want to give back to
their communities. The advocacy we provide is the first line of
protection for thousands of elders living in licensed long-term care
facilities. Last year, volunteers in Washington donated approximately
34,002 hours of their time and skill to resolve complaints made to the
program with a success rate of nearly 90 percent. We save the State
resources by resolving complaints at the lowest level keeping them out
of the expensive regulatory and legal systems. However, like our sister
program's across the nation, we are not able to keep up with consumer
needs and growing costs which is of concern giving the aging of the
baby boomer generation in the U.S.
In Washington and other states, the number of Assisted Living
Facility residents has grown tremendously. By the end of 2019,
Washington will have 2,000 additional assisted living facility beds but
no expansion in ombudsman services. The growing number of long-term
care residents makes it financially and resources to provide the cost
saving advocacy services provided by LTC Ombudsman Programs.
To alleviate the effects of diminished budgets and expanding long-
term care populations, we respectfully request the following funding to
support all SLTCOPs.
First, we request $20,000,000 to support SLTCOP work with residents
of assisted living, board and care, and similar community-based long-
term care settings. While the mandate to serve residents in assisted
living facilities was added to our mission Act, there have been no
appropriations for this function. Assisted living and similar
businesses have boomed, but SLTCOP funding has not increased to meet
the demand and respond to the industry boom.
Washington State has demonstrated leadership by reducing costs in
their Medicaid system, while improving consumer choice in community
based long-term. Assisted living has proven to be a viable option for
those who qualify for more costly nursing home care, but wish to
exercise their choice to live in assisted living. Assisted living
residents have complex medical needs, very much like the nursing home
residents of 20 years ago. Growth in the number of assisted living
facilities, in conjunction with complex needs of consumers and
diminished funding, threatens our nation's Long-Term Care Ombudsman
Programs. These challenges to State Programs hinder our ability to meet
program requirements to provide regular and timely access to all
residents wanting long-term care ombudsman services. Current funding
levels preclude SLTCOPs from quickly responding to complaints and
monitoring facilities. Without our eyes and ears in these buildings,
residents are at risk of abuse, neglect, and serious financial
exploitation, and any number of violations to their rights.
Our second request is for $35,000.000, which is needed to provide
core program funding for the program under Title VII of the Older
Americans Act. These funds must be allocated to all fifty states. In
addition to improving the quality of life and care for millions of
vulnerable long-term care residents, our work saves Medicare and
Medicaid funds by avoiding unnecessary costs associated with poor
quality care, unnecessary hospitalizations and expensive procedures and
treatments. Furthermore, nationally in 2016, nearly 7,331 volunteers
served in the SLTCOP. For every one staff ombudsman, six volunteer
ombudsmen serve residents. Ombudsman staff and volunteers investigated
199,493 complaints made by 129,559 individuals. Ombudsmen were able to
resolve or partially resolve 74 percent--or an ombudsman resolved three
out of every four complaints investigated.
In 2018, Washington State had 3,818 long-term care facilities with
approximately 71,000 residents. Our state program includes myself, and
two other full time staff, which has not changed much since 1989.
Thankfully, we have great partnerships with other not-for-profits to
operate local ombudsman programs, extending our reach into the most
isolated of nursing home residents in our rural communities. These
partners include seven Area Agency on Aging entities and three
Community Action Programs and in total, we employ 17.51 full-time
staff. Two national studies about the effectiveness about the LTC
Ombudsman Program (the Institute of Medicine, and the Bader Report)
have recommended that best practice be to employee one full-time paid
staff ombudsman for every 2,000 long-term care residents or licensed
beds. Washington State falls short of that goal at having only 49
percent of the needed paid staff.
Although we have a great team of paid and volunteer ombudsmen, our
program is still not able to cover every facility in our state. Nearly
half of the licensed facilities in our state never receive routine
visits by an ombudsman, which is the hallmark activity of the Program
and vital to building trusting and effective working relationships. We
are so busy responding to complaints and phone calls that we are not
able to conduct regular outreach, build presence in all facilities, and
make our services known to isolated residents and their family members.
We are overwhelmed with complaints about unwanted and unlawful
discharges, also known as, ``resident dumping'' by residents, their
loved ones and by hospitals, which involves expensive legal issues,
interactions with multiple health and long-term care community systems,
state entities and the courts.
Third, we request $5,000,000 to support the work of SLTCOPs under
the Elder Justice Act (EJC). This appropriation would allow states to
hire and train staff and recruit more volunteers to prevent abuse,
neglect, and exploitation of residents and investigate complaints.
However, the funds have been authorized since 2010, to date no EJC
funds have been appropriated for SLTCOPs. Currently, Federal Older
Americans Act funding comprises about a third of the total funding
required to maintain the Washington Long-Term Care Ombudsman Program,
at its current level, with the majority of funding coming from our
State General Funds. We understand that this subcommittee faces a
strained financial situation, but a continued commitment to SLTCOPs
protects the health and safety of millions of older adults living in
nursing homes and assisted living facilities. I believe their
protection should remain a high priority.
Demand for our services is growing. The number of complex and very
troubling cases that long-term care ombudsmen investigate has been
steadily increasing. In addition, there continues to be a disturbing
increase in the frequency and severity of citations for egregious
regulatory violations by long-term care providers that put residents in
immediate jeopardy of harm, which, unfortunately, is true for nursing
homes in my state. Ombudsmen are needed now more than ever in nursing
homes, assisted living, and similar care facilities where we are
required to serve.
The people who operate long-term care facilities have recognized
the value and benefit of having ombudsmen assist with staff training
and consultation. In order to improve advocacy and services available
to residents, our office and NASOP respectfully request the
aforementioned funding levels. We also appreciate that the testimony of
the Elder Justice Coalition also calls for these increases.
Thank you for your ongoing support.
[This statement was submitted by Patricia L. Hunter, MSW,
Washington State Long-Term Care Ombudsman.]
______
Prepared Statement of the National Coalition of STD Directors
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
I am providing this testimony on behalf of the National Coalition
of STD Directors (NCSD), a national membership organization
representing STD programs at health departments in all 50 states, seven
large cities or counties, and eight U.S. territories, to request
funding for the Division of STD Prevention at Centers for Disease
Control and Prevention (CDC) at no less than $1.6 billion, no less than
$20 million for a special initiative to end congenital (mother to
child) syphilis, and no less than $1.8 billion in COVID-19 supplemental
funding to support STD programs in their response to the novel
coronavirus . This testimony reflects the voices and perspectives of
STD programs across the U.S. who are overwhelmed, underfunded and
fighting a losing battle against sexually transmitted diseases (STDs).
I have a very simple message for you and that is that STD
prevention is core public health work. STD programs have been leaders
in quickly responding to outbreaks for years. Fighting the coronavirus
pandemic has shown how important contact tracing is to prevent the
spread of viruses or infections. The unsung heroes on the front lines
of contact tracing and keeping Americans safe every day are Disease
Intervention Specialists (DIS). After an individual tests positive for
an STD, DIS are responsible for identifying their partners and ensuring
that exposed individuals are connected to testing and treatment. In the
United States today there are 2,000 DIS, 75 percent of whom are trained
in emergency response. We've heard from our membership that DIS are
being reassigned to support with coronavirus response, including
training and supervising the hiring of new contact tracing teams. This
means while DIS are performing vital investigations related to COVID-
19, it comes at the cost of preventing more STD infections. DIS are
often the first to be deployed in assisting with outbreak response, but
for years have been underfunded. Now, in a time of increased need, DIS
are stretched thin. We need to invest in them now, not only to support
any future crisis, but to support them in addressing STDs, which are
currently at the highest levels ever.
STD program staff are highly trained in interviewing, blood draws,
and implementing culturally sensitive care, which are all essential
skills needed for outbreak response. DIS and STD epidemiologists are
first on-the-scene when there is an infectious outbreak, but for more
than 15 years, the STD programs that support them have been flat-
funded. Without resources to hire and train new staff, STD programs
have been hallowed out. Coronavirus response has shown us how crucial
these workers are and will continue to be in the future. U.S. Congress
must invest in STD programs to protect the current and future health of
Americans.
Furthermore, as our woefully unprepared medical and public health
systems respond to COVID-19, STD clinics have also been on the front
lines to combat the outbreak. To respond to COVID-19 STD clinics have
reduced or suspended services and clinics have become de facto COVID-19
testing sites. Patient access to STD services across the country has
been disrupted tremendously, and the barriers to care are
insurmountable indefinitely as we await the trajectory of the virus.
As we work to bring COVID-19 under control, we want to also look
ahead to help states and clinics train and expand STD programs so they
are prepared for other contagious disease outbreaks while still
maintaining their focus on STDs. A supplemental increase of $1.8
billion, $1.3 billion to hire and train DIS and $500 million to support
clinics will help STD programs and providers in their response to
coronavirus while also maintaining their regular workload and public
health operations.
With STDs at epidemic levels, and in a field that is already
woefully underfunded, there must continue to be dedicated resources for
identifying and testing new cases, otherwise rising STD rates will
continue unabated. Data released in October 2019 by the Centers for
Disease Control showed that after 5 years of dramatic increases,
combined cases of syphilis, gonorrhea, and chlamydia reached all-time
highs in the U.S. These historic increases have created a public health
emergency with devastating long-term health consequences including
infertility, cancer, transmission of HIV, and infant and newborn death.
This number is expected to drastically increase due to years of limited
resources, and the much-needed redistribution of STD resources to fight
the novel coronavirus. Supporting an increase of $1.6 billion to STD
prevention at CDC in fiscal year 2021 is an important investment in our
public health infrastructure, and for keeping Americans healthy.
Did you know that last year over 1,000 infants were born with
congenital syphilis in the United States? Congenital syphilis occurs
when syphilis is passed from a mother to her baby during pregnancy or
delivery. Congenital syphilis increased by more than 40 percent between
2017 and 2018, resulting in a 22 percent increase in newborn deaths.
Congenital syphilis is completely preventable with early prenatal care
and STD testing. Unfortunately, during coronavirus response, some DIS
have had to reduce the number of syphilis case investigations to assist
with COVID-19 contact investigations. We cannot let mothers with
potential syphilis infections slip during the cracks in the midst of
another infectious disease outbreak. It is critical that we provide
adequate funding in order to eliminate syphilis in our lifetime. Are
you aware that in 2018 congenital syphilis cases surpassed the number
of perinatal HIV cases? This is largely thanks to the Federal
investment in innovative approaches dedicated to HIV, resulting in the
number of reported perinatal HIV cases to decrease. With your support
we can achieve similar results for congenital syphilis. The Senate must
invest $20 million in direct service funding for congenital syphilis
prevention and treatment.
In summary, supporting STD programs is supporting public health.
For the past 15 years the Federal STD program at CDC has been level
funded resulting in a crumbling infrastructure and inadequate tools for
preventing new cases of STDs. It is times like these that showcase the
importance of our public health workforce. If the Senate does not
invest in STD programs now, not only will there not be enough workers
for future outbreaks, but the United States will continue to see STD
rates skyrocket, and newborns die. In order to ensure that STD programs
have the support they need to fight coronavirus, and bounce back once
the outbreak response is completed, the United States Senate must:
--Support a supplemental increase of $1.8 billion to respond to the
novel coronavirus
--$500 million for STD clinics
--$1.3 billion to hire and train DIS to conduct contract tracing
--Increase STD funding at CDC by $1.6 billion in fiscal year 2021
--Invest $20 million in ending Congenital Syphilis
By taking these small steps, the Senate will show its support for
this crucial public health program, and avert STD consequences
including infertility, newborn death, new HIV cases, and cancer.
If you have any questions or would like additional information,
please contact NCSD's Taryn Couture, associate director of policy
government relations, at [email protected].
Sincerely.
[This statement was submitted by David Harvey, Executive Director,
National
Coalition of STD Directors.]
______
Prepared Statement of the National Congress of American Indians
On behalf of the National Congress of American Indians (NCAI), the
oldest, largest, and most representative national organization
comprised of American Indian and Alaska Native tribal nations, thank
you for the opportunity to provide written testimony regarding fiscal
year 2021 appropriations on funding for tribal and related programs in
the Departments of Education, Health and Human Services, Labor, and
Related Agencies.
u.s. department of education
It is imperative that American Indian/Alaska Native (AI/AN)
students receive a quality education. However, in Indian Country,
daunting challenges are preventing this from becoming a reality for all
AI/AN students, including aging school facilities, limited access to
broadband, ruralness and remoteness impacting school attendance,
difficulty recruiting and retaining teachers, and a lack of culturally
appropriate educational opportunities. These challenges have led to a
graduation rate of 72 percent for AI/AN students compared to an 85
percent graduation rate for the rest of the country.
There are approximately 620,000 (93 percent) Native students
enrolled in public schools in both urban and rural areas, while 45,000
(seven percent) attend schools within the Bureau of Indian Education.
Effectively reaching all Native students requires a concentrated and
sustained effort from multiple partners: tribal nations, the Federal
Government, state and local education agencies, Native parents and
families, and communities. Accordingly, NCAI requests the following
levels of programmatic support.
U.S. DEPARTMENT OF EDUCATION FISCAL YEAR 2021 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year
Department Education Programs 2021 Request
------------------------------------------------------------------------
Title 1, Part A (Local Education Agency Grants)... $20,000,000,000
Student Assessment Systems under the Every Student $35,000,000
Succeeds Act (ESSA)..............................
State-Tribal Education Partnership (STEP) Program. $5,000,000
Title VII funding, ESEA (Impact Aid Funding)...... $2,000,000,000
Title VI funding, Every Student Succeeds Act $198,000,000
(ESSA)...........................................
Native Hawaiian Student Education (Title VI, Part $42,000,000
B)...............................................
Alaska Native Education Equity Assistance Program $42,000,000
(Title VI, Part C)...............................
Indian Education Language Immersion Grants (Title $18,000,000
VI)..............................................
Special Programs for Native Student, Including $68,000,000
Native Youth Community Projects..................
Title III-A Grants under the Higher Education Act $81,696,000
for Tribal Colleges and Universities.............
Tribal Colleges and Universities: Adult/Basic $8,000,000
Education........................................
Tribally Controlled Post-Secondary Career and $12,000,000
Technical Institutions and Technical Institutions
Native American-Serving, Non-Tribal Institutions $10,000,000
(Higher Education Act, Title III-F)..............
Tribal Education Departments (Dept. of Ed)........ $10,000,000
---------------------
Total......................................... $22,529,696,000
------------------------------------------------------------------------
Indian Education: Alaska Native Education Program (Title VI, Part
C) and Native Hawaiian Education Program (Title VI, Part B): NCAI is
concerned that the President's fiscal year 2021 budget eliminates
funding for the Alaska Native Education Program and the Native Hawaiian
Education Program. These programs fund the development of curricula and
education programs that address the unique educational needs of Alaska
Native and Native Hawaiian students, as well as the development and
operation of student enrichment programs. NCAI recommends funding these
two programs, each at $42 million for fiscal year 2021.
u.s. department of health and human services
The health and wellness of tribal communities depends on a network
of healthcare, education, wellness service providers, prevention
coordination, and tribally-driven initiatives. Despite the Federal
government's trust responsibility to provide healthcare, the Indian
Health Service, Tribal Health Programs, and Urban Indian Organizations
(collectively known as the I/T/U) system face significant funding
disparities, notably in per capita spending between the Indian Health
Service (IHS) and other Federal healthcare programs. The I/T/U system
is critical to securing the health and wellness of tribal communities.
To meet the Federal Government's fiduciary responsibility and the
health needs of tribal communities, NCAI requests the following levels
of programmatic support.
DEPARTMENT OF HEALTH AND HUMAN SERVICES FISCAL YEAR 2021 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year
Department of Health and Human Services Programs 2021 Request
------------------------------------------------------------------------
Total Fiscal Year 2021 Indian Health Service $9,145,000,000
Funding..........................................
Services...................................... $6,825,000,000
Contract Support Costs........................ $922,300,000
Facilities.................................... $1,398,000,000
Special Diabetes Program for Indians (SDPI)....... $200,000,000
On the TRAIL (Together Raising Awareness for $1,000,000
Indian Life) to Diabetes Prevention Program......
HRSA Native Hawaiian Healthcare Systems Program... $25,000,000
Ending HIV Epidemic/Hepatitis C Initiative........ $25,000,000
Head Start........................................ $10,810,000,000
TCU Head Start Partnership Program................ $8,000,000
Native Languages Preservation (NLP), with Esther $15,000,000 for NLP,
Martinez Program (EMP)........................... W/$6,000,000 for EMP
Promoting Safe and Stable Families, Title IV-B, $110,000,000
Subpart 2 Discretionary Funds (3 percent tribal
allocation reserved from this amount)............
Tribal Court Improvement Grant Program (authorized $3,000,000
under Title IV-B, Subpart 2).....................
Child Abuse Discretionary Activities, Innovative $38,000,000
Evidence-Based Community Prevention Program......
Community-Based Child Abuse Prevention............ $60,000,000
Maternal Infant and Early Childhood Home Visiting $420,000,000
Program..........................................
Child Welfare Services, Title IV-B, Subpart 1 $280,000,000
(tribal allocation reserved from this amount)....
SAMHSA Programs of Regional and National $8,000,0000
Significance, Child and Family Programs..........
SAMHSA Garrett Lee Smith Grants, State/Tribal $40,000,000
Youth Suicide Prevention and Early Intervention
Grant............................................
SAMHSA Garrett Lee Smith Grants, Campus Suicide $9,000,000+
Prevention Program...............................
SAMHSA American Indian and Alaska Native Suicide $5,000,000
Prevention.......................................
SAMHSA Tribal Behavioral Health Programs (Mental $50,000,000
Health and Substance Abuse Programs).............
Older Americans Act (Title VI-Part A,B)........... $43,000,000
Older Americans Act (Title VI-Part C)............. $12,100,000
Older Americans Act (Title VII-Subtitle B)........ 5 percent tribal
set-aside
Low Income Home Energy Assistance Program (LIHEAP) $4,700,000,000 with
$51,000,000
allocated to tribes
and tribal
organizations
---------------------
Total......................................... $26,085,400,000
------------------------------------------------------------------------
Substance Abuse Mental Health Services Administration: These funds
are critical to supporting mental health services and substance abuse
prevention activities aimed at high-risk American Indian and Alaska
Native youth and their families. NCAI requests $50 million in total for
SAMHSA Tribal Behavioral Health Programs ($25 million for Mental Health
and $25 million for Substance Abuse Programs).
Low-Income Home Energy Assistance Program (LIHEAP): NCAI requests
$4.7 billion for LIHEAP, with $51 million directly allocated to tribal
nations and tribal organizations. LIHEAP helps low-income households
and seniors with their energy bills, providing vital assistance during
both the cold winter and hot summer months.
u.s. department of labor
Workforce development success in Indian Country depends on the
ability of tribal nations, Native organizations, and Tribal Colleges
and Universities (TCUs) to craft innovative, customized solutions
designed for the particular capacity building needs of their tribal
communities. To that end, the appropriate role of the Federal
Government is to support governance freedom, programmatic flexibility,
training and technical assistance, and resources that Indian Country
needs to design and implement bold strategies capable of advancing each
community's workforce development priorities. The Federal Government
must work closely with tribal communities to identify and address
obstacles that currently obstruct tribal innovation and create new
opportunities for tribal ingenuity to flourish. The Federal Government
must endow its systems, programs, and funding protocols with the ease
and adaptability that tribal nations need to effectively build their
human capacity in accordance with their cultural values and in
furtherance of their community and economic development goals. The
following fiscal year 2021 budget requests set forth appropriation
levels that are essential to empowering tribal efforts to advance the
economic security of tribal nations.
DEPARTMENT OF LABOR FISCAL YEAR 2021 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year
Department of Labor Programs 2021 Request
------------------------------------------------------------------------
YouthBuild Program................................ $89,000,000
Division of Indian and Native American Programs $60,500,000
(DINAP)..........................................
Native American Employment and Training Council... $125,000
Older Americans Act (Title V), Senior Community $434,371,000
Service Employment Program.......................
---------------------
Total......................................... $583,996,000
------------------------------------------------------------------------
Senior Community Service Employment Program (SCSEP): NCAI urges
Congress to fund SCSEP at $434 million. This program is the only
Federal job training program focused exclusively on helping older
Americans return to the workforce. Through the program, low-income job-
seekers (55 years of age or older) update their skills and contribute
to their communities through paid, on-the-job training at schools,
hospitals, senior centers, tribal facilities, and other non-profit or
public facilities.
corporation for public broadcasting (cpb)
The ability to communicate keeps communities safe and promotes
trade and commerce. Tribal access to modern communications networks
supports economic development, tribal governance, healthcare,
education, and public safety in tribal and surrounding communities.
NCAI requests the following levels of programmatic support.
CORPORATION FOR PUBLIC BROADCASTING (CPB) FISCAL YEAR 2021 REQUESTS
------------------------------------------------------------------------
NCAI Fiscal Year
Corporation for Public Broadcasting 2021 Request
------------------------------------------------------------------------
American Indian and Alaska Native Radio Station $7,000,000
Grants...........................................
Native Public Media............................... $500,000
Native Public Media and Koahnic Broadcast $500,000
Corporation......................................
---------------------
Total......................................... $8,000,000
------------------------------------------------------------------------
conclusion
NCAI appreciates the opportunity to share these recommendations.
For more information, please contact Fatima Abbas, Director of Policy
and Legislative Counsel, at [email protected] or Nicholas Courtney,
Policy Analyst, at [email protected].
______
Prepared Statement of the National Consumer Law Center \1\
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\1\ Since 1969, the nonprofit National Consumer Law Center(r)
(NCLC(r)) has worked for consumer justice and economic security for
low-income and other disadvantaged people in the U.S. through its
expertise in policy analysis and advocacy, publications, litigation,
expert witness services, and training.
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The Federal Health & Human Services' Low Income Home Energy
Assistance Program (LIHEAP) \2\ is the cornerstone of government
efforts to help low-income seniors and families afford essential home
energy services.\3\ LIHEAP is a particularly important safety net
program for the record number of unemployed and underemployed
households struggling with lost jobs and diminished wages in the wake
of the devastating economic disruption due to the COVID-19 pandemic.\4\
We respectfully request that the subcommittee fund LIHEAP at the full
authorized amount of $5.1 billion and note the need is likely to be
greater.
\2\ 42 U.S.C. Sec. Sec. 8621 et seq.
\3\ Stories about the value of LIHEAP:
``Justine of Missouri: I work for a nonprofit that helps keep low-
income, medically vulnerable St. Louisans safe in their own homes from
extreme temperatures. So many of the people we serve rely on LIHEAP to
keep their utilities on and their homes habitable. We consider
ourselves, in part, a homelessness prevention organization. Without the
ability to heat their homes in winter, our clients will not be able to
age in place but will have to move in with family (if they even have
any). Our donors are incredible and we're able to do so much, but we
can't do it alone. Our community, like many others, needs LIHEAP.'';
and,
``Raylene from California: I am living again in my central
California hometown because of the relatively low cost of living here.
I rent a low cost senior apartment and have minimal insurance for my 13
year old car. I have the lowest cost medicare supplemental insurance I
can find and all my other expenses are as low as I can keep them. I had
to drop my renter's insurance and the newspaper because I just can't
afford them. My $1103 in Social Security has stretched as far as I can
manage. Without the HEAP program I would not be able to run the air
conditioner during the 3 months of summer when temperatures are close
to 100. We have a lot of seniors with the same concerns; please
envision yourself in our shoes and keep this program for us. Thank
you.'' For more stories, see LIHEAP Stories available at https://
neuac.org/advocacy/save-liheap/liheap-stories/.
\4\ See e.g., Sarah Hansen, 2.4 Million Workers Filed For
Unemployment, Bringing Total to More Than 38 Million, Forbes (May 21,
2020), available at: https://www.forbes.com/sites/sarahhansen/2020/05/
21/24-million-workers-filed-for-unemployment-last-week-bringing-total-
to-more-than-38-million/#56c4ada9eb91.
The United States is the midst of unprecedented times as the world
addresses a novel coronavirus pandemic (COVID-19). Public heath
directives in most states led to the closure of non-essential
businesses to slow the spread of COVID-19, hitting lower-wage service
economy workers, low-income families and black and Hispanic workers
particularly hard.\5\ The CBO predicts unemployment in Q3 2020 could
reach15.8 percent.\6\ Economists predict the United States could
experience an economic downturn as severe as, or worse than the Great
Recession caused by the housing market collapse.\7\ Federal Reserve
Chairman Powell warns that an economic recovery could take more than a
year and that a full recovery might not be possible without a
vaccine.\8\ This caution is echoed by the CBO \9\ and the former
director of the Centers for Disease Control and Prevention (CDC).\10\
---------------------------------------------------------------------------
\5\ See e.g., Board of Governors of the Federal Reserve System,
Report on the Economic Well-Being of U.S. Households in 2019, Featuring
Supplemental Data from April 2020 (May 2020) at p.53, available at
https://www.Federalreserve.gov/publications/files/2019-report-economic-
well-being-us-households-202005.pdf (39 percent of workers with
household incomes under $40,000 have lost their jobs); see also, CBO,
Interim Economic Projections for 2020 and 2021 (May 2020) at p.4,
available at https://www.cbo.gov/publication/56368 (employment between
February and April 2020 declined by 16 percent overall, but by 21
percent for Hispanic workers and 18 percent for black workers).
\6\ See CBO, Interim Economic Projections for 2020 and 2021 at p.1
(May 2020) available at https://www.cbo.gov/publication/56368.
\7\ See Peter Cohan, COVID-19's Worst Case? 10.6 percent Jobless
Rate, $1.5 Trillion GDP Drop, Forbes (Mar. 21, 2020), available at:
https://www.forbes.com/sites/petercohan/2020/03/21/covid-19s-worst-
case-106-jobless-rate-15-trillion-gdp-drop/#3ab4a19a10a2.
\8\ See Sarah Hansen, Full Economic Recovery Unlikely Without
Coronavirus Vaccine: Fed Chair Powell, Forbes (May 18, 2020) available
at https://www.forbes.com/sites/sarahhansen/2020/05/18/full-economic-
recovery-unlikely-without-coronavirus-vaccine-fed-chair-powell/
#d7fa3f76f586.
\9\ See CBO, Interim Economic Projections for 2020 and 2021 at p.2
(May 2020) available at https://www.cbo.gov/publication/56368 (``The
persistence of social distancing will keep economic activity and labor
market conditions suppressed for some time.'').
\10\ See Dr. Tom Frieden, Former CDC director: There's a long war
ahead and our Covid-19 response must adapt, CNN Health (Updated 9:33
AM, Mar.21, 2020). Available at: https://www.cnn.com/2020/03/20/health/
coronavirus-response-must-adapt-frieden-analysis/index.html (cautions
the American public that this is going to be a long crisis, and because
COVID-19 is so contagious we may need to maintain social distancing for
an extended period of time).
---------------------------------------------------------------------------
In most states, governors, state public utility commissions and
private utility companies have implemented consumer protections from
utility disconnections during the crisis.\11\ These disconnection
moratoria have been vital to protecting the health and safety of
households, helping to slow the transmission of the virus by
facilitating physical distancing by allowing people to safely stay at
home. However, we estimate that many millions of low-income and newly
low-income households will face the start of the fiscal year 2021
heating season already disconnected or in danger of utility
disconnection. While the shut-off moratoria allow households to
continue to receive utility service, they will also continue to receive
utility bills and we anticipate that, due to the high unemployment
rate, unpaid utility arrearages will climb during the crisis. These
utility arrearages, combined with other financial hardships, will
likely drive a surge in demand for LIHEAP benefits in fiscal year 2021.
---------------------------------------------------------------------------
\11\ See National Assoc. of Regulatory Utility Commissioners, State
Response
Tracker, at https://www.naruc.org/compilation-of-covid-19-news-
resources/state-response-tracker/; Energy and Policy Institute tracker
at https://www.energyandpolicy.org/utilities-disconnect-coronavirus/.
---------------------------------------------------------------------------
The longer the shut-off moratoria are in place, the larger the
arrearages for these households, for multiple essential utility
services and other debt obligations. Conservative estimates of
residential electricity customers in arrears during the COVID-19
disconnection moratoria range from $6 billion to $14 billion.\12\
---------------------------------------------------------------------------
\12\ See John Howat, Skyrocketing Utility Arrears during COVID-19
Crisis: The Need for Substantial Federal Support, NCLC (April 2020)
available at https://www.nclc.org/images/pdf/special_projects/covid-19/
IB_Electric_Service_Arrearage_Narrative.pdf (very optimistic scenario
of 20 percent of residential customers with a 60-day arrearage balance
versus realistic scenario of 40 percent of residential customers with a
90-day arrearage balance).
---------------------------------------------------------------------------
For decades, LIHEAP has been a reliable safety net program
specifically tailored to help low-income households stay warm and avoid
hypothermia in the winter, as well as stay cool and avoid heat stress
(even death) in the summer. The program is currently funded at $4.64
billion ($3.74 billion through the fiscal year 2020 appropriation \13\
along with an additional $900 million through the CARES Act).\14\
---------------------------------------------------------------------------
\13\ Further Consolidated Appropriations Act, 2020 (Public Law 116-
94).
\14\ Coronavirus Aid, Relief, and Economic Security (CARES) Act
(Public Law 116-136).
---------------------------------------------------------------------------
Fiscal year 2019 funding for LIHEAP at $3.74 billion was estimated
to help 6 million households maintain essential home energy
service.\15\ Yet, at a time when the U.S. economy was far more robust,
only an estimated one in five eligible households was served by LIHEAP
in fiscal year 2019.\16\ Before COVID-19, there was already a large
percentage of the population living on the edge of financial hardship.
According to the U.S. Department of Energy's data, about one-third of
U.S. households report struggling with energy affordability.\17\ In
2019, the Federal Reserve reported that 4 in 10 households would have
difficulty with an unexpected expense of $400 and that 3 in 10
households would be unable to pay their bills.\18\ A growing body of
research has documented the rise in household income volatility (the
dramatic fluctuation of income over time) and the impacts on household
well-being.\19\ Pre-COVID-19, approximately one-third of households
experienced income volatility \20\ with irregular work schedules as the
leading cause of volatility.\21\ Analysis of material hardship for low
and moderate income consumers experiencing income volatility found much
higher rates of inability to afford bills, medical care, housing
payments and food,\22\ and a higher likelihood to resort to expensive
payday loans to pay for basic living expenses.\23\ Thus, pre-COVID, too
many households experienced economic fragility and energy insecurity.
Now, with the economic devastation of COVID-19, a bold governmental
response is necessary to keep struggling families connected to
essential home energy service.
---------------------------------------------------------------------------
\15\ Testimony of the National Energy Assistance Directors'
Association, House Subcommittee on Labor, Health and Human Services and
Education and Related Agencies (April 8, 2019).
\16\ See Katrina Metzler, National Energy and Utility Affordability
Coalition's House Subcommittee on Labor, Health and Human Services and
Education and Related Agencies fiscal year 2021 LIHEAP testimony
(Mar.23, 2020).
\17\ See U.S. Energy Information Administrations, Residential
Energy Survey, ``One in three U.S. households faced challenges in
paying energy bills in 2015'' (Sept. 2018), at https://www.eia.gov/
consumption/residential/reports/2015/energybills/.
\18\ See Board of Governors of the Federal Reserve, ``Report on the
Economic Well-Being of U.S. Households in 2018 (May 2019) at p.21,
available at https://www.Federalreserve.gov/consumerscommunities/files/
2018-report-economic-well-being-us-households-201905.pdf.
\19\ See e.g., Federal Reserve Survey of Household Economics and
Decisionmaking reports available at https://www.Federalreserve.gov/
consumerscommunities/shed.htm; The Aspen Institute Expanding Prosperity
Impact Collaborative (EPIC) series on the issue of income volatility
available at http://www.aspenepic.org/epic-issues/income-volatility/;
see also, Pew Charitable Trusts, How Income Volatility Interacts with
American Families; Financial Security (Mar 2017) available at https://
www.pewtrusts.org/en/research-and-analysis/issue-briefs/2017/03/how-
income-volatility-interacts-with-american-families-financial-security.
\20\ See Daniel Schneider and Kristen Harknett, Income Volatility
in the Service Sector: Contours, Causes and Consequences (July 2017) at
p.3, available at http://www.aspenepic.org/epic-issues/income-
volatility/issue-briefs-what-we-know/issue-brief-income-volatility-
service-sector/; see also, Board of Governors of the Federal Reserve,
Report on the Economic Well-Being of U.S. Households in 2018 (May 2019)
at p.2, available at https://www.Federalreserve.gov/
consumerscommunities/files/2018-report-economic-well-being-us-
households-201905.pdf.
\21\ See Income Volatility: A Primer(May 2016) The Aspin Institute
Financial Security Program and EPIC at p.5, available at https://
www.aspeninstitute.org/publications/income-volatility-a-primer/; see
also, Daniel Schneider and Kristen Harknett, Income Volatility in the
Service Sector: Contours, Causes and Consequences (July 2017) at p.3,
available at http://www.aspenepic.org/epic-issues/income-volatility/
issue-briefs-what-we-know/issue-brief-income-volatility-service-sector/
; see also Asset Funders Network, Income Volatility: Why it
Destabilizes Working Families and How Philanthropy Can Make a
Difference at p.6m available at https://assetfunders.org/resource/afn-
income-volatility-2017/.
\22\ See Stephen Roll, David S. Mitchell, Krista Holub et al.,
Responses to and Repercussions from Income Volatility in Low- and
Moderate-Income Households: Results from a National Survey, Aspen
Institute EPIC, Center for Social Development, Intuit Tax & Financial
Center (Dec. 2-17) at pp 6-7, available at https://
www.aspeninstitute.org/publications/responses-repercussions-income-
volatility-low-moderate-income-households-results-national-survey/.
\23\ See Daniel Schneider and Kristen Harknett, Income Volatility
in the Service Sector: Contours, Causes and Consequences (July 2017) at
p. 9, available at http://www.aspenepic.org/epic-issues/income-
volatility/issue-briefs-what-we-know/issue-brief-income-volatility-
service-sector/(almost a quarter of consumers reporting week-to-week
volatility report using payday lenders).
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LIHEAP protects the health and safety of the frail elderly, the
very young, and those with chronic health conditions that increase
susceptibility to temperature extremes. LIHEAP is an administratively
efficient and effective targeted health and safety program that works
to bring fuel costs within a manageable range for vulnerable
households.
For the reasons discussed in this testimony, we anticipate an
unprecedented need for fiscal year 2021 LIHEAP funding. We respectfully
request that the subcommittee fund LIHEAP at $5.1 billion for fiscal
year 2021 and note that the need is likely to be even greater.
[This statement was submitted by Olivia Wein, Staff Attorney,
National
Consumer Law Center.]
______
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 2021 Appropriation. NCSSMA respectfully requests that Congress
provide at least $13.904 billion in fiscal year 2021 for SSA's
Limitation on Administrative Expenses (LAE) account. SSA's LAE account
provides resources for general operations, continued support for much-
needed Information Technology (IT) modernization and reducing the
disability hearings backlog. While previous funding has certainly
helped improve service to the American public, SSA must still replace
frontline staff to address field office backlogs, answer telephones,
and assist those who request our help. This level of funding will help
ensure the agency can continue to build on the improvements currently
underway.
We recognize the current fiscal constraints facing legislators, but
we are concerned that the enacted level of $12.871 billion for SSA for
fiscal year 2020 was slightly below the fiscal year 2019 enacted level
of $12.877 billion. In contrast, for fiscal year 2020, NCSSMA had
recommended an increase of at least $640 million over the fiscal year
2019 funding level to ensure progress continues in the areas listed
below. This included an additional $300 million to improve frontline
services and increase hiring in SSA field offices, $240 million to
address hearing office and program service center backlogs, and $100
million to continue the agency's efforts in modernizing its systems
infrastructure and software.
The President's fiscal year 2021 budget request includes $13.351
billion for SSA's administrative expenses. As part of the fiscal year
2021 Budget Appendix, the Commissioner of Social Security expressed the
following resource needs in fiscal year 2021:
``... The Commissioner's budget includes $14,004 million for total
administrative discretionary resources in 2021. This represents
$13,804 million for SSA administrative expenses, $79 million in
research, and $121 million for the Office of the Inspector
General.''
We are gravely concerned that the current coronavirus crisis and
its accelerating threat to the health, economic security and well-being
of our nation will have an untold negative impact on not only those
seeking assistance from our agency, but on our own staff and their
loved ones as well. NCSSMA appreciates that the CARES Act included $300
million for SSA's LAE account to prevent, prepare for and respond to
the coronavirus. This funding will help ensure our agency can continue
its mission during these unprecedented times. Because of the many
unknowns associated with COVID-19, our request includes an additional
$100 million above the Commissioner's budget request to support field
office and teleservice telework and the processing of critical work
during a crisis that is estimated to affect the American public and SSA
well into fiscal year 2021.
community-based service
Adequate resources for SSA positively affect the agency's ability
to deliver vital services to the American public and fulfill the
agency's stewardship responsibilities. The following are examples of
why it is vital SSA receives adequate resources, in a timely manner, to
provide excellent service in its field offices:
Earlier this year, our office had two Supplemental Security Income
(SSI) recipients walk into our office looking for assistance.
Both individuals were homeless and from outside our service
area. They had no idea where to go for help and, in both cases,
had no money, and did not know where they were going to spend
the night. It was too late in the day to get them on a bus to
our local Department of Social Services (DSS). Our staff made
phone calls to various community agencies, found both
individuals a place to sleep for the night, and arranged for
transportation to the DSS office the next morning. These two
individuals would have spent the night in the cold and on the
street if we had not been here to assist.--Ogdensburg, NY
A transient man arrived in the office near closing during a severe
rainstorm. He came into the office requesting to file for
disability benefits. Upon further development, it was
discovered that the man had terminal colon cancer. The man was
then referred to a CS where his claim was taken and completed
after we closed to the public. During the interview, the man
mentioned to the CS that he did not have any place to stay for
the night. In addition to getting the claim off to DDS, the CS
contacted the local Adult Protective Services and we were able
to find him suitable shelter during the storm.--Ada, OK
We had a customer who, according to our records, had filed for
retirement in 2013. She received a letter that her Direct
Express card was being canceled and became alarmed. She
recalled signing up neither for benefits or receiving a check,
nor was she in possession of a Direct Express card. Our
employee reviewed the record, contacted Direct Express, and
found out 6 years of benefits, approximately $50,000, was
sitting untouched on her Direct Express card. The employee was
able to retrieve the funds for our customer. The customer truly
appreciated our help and said that we ``made her Christmas''.
Having adequate staff allows employees to serve the public and
take the time to investigate this unusual situation and resolve
it without sacrificing service to the other 200 people, on
average, that our office serves in person daily.--Spokane, WA
While we understand the budget constraints facing legislators, when
SSA's administrative resource needs are unmet, it results in
deterioration in key service areas and stewardship workloads. SSA
continues to experience a large number of customers requesting
assistance from field offices as members of the baby boom generation
retire or become disabled. In fiscal year 2019, the national 800 number
call center and field offices handled over 48 million calls from the
public. Meanwhile, over 14 percent of callers received a busy signal in
our teleservice centers and over 6 million calls went unanswered in the
field. In fiscal year 2019, the national 800 number call wait time was
20 minutes. In addition to the almost 90 million face-to-face and
telephone contacts made last year, the agency continues to have over 5
million actions pending in the program service centers. As of May 1,
2020, there were 455,304 hearings pending, down from 575,421 at the end
of fiscal year 2019. Disabled individuals are waiting an average of 404
days for a hearing, down from 506 just 8 months ago. The additional
resources provided in fiscal year 2018 and fiscal year 2019 have cut
the number of pending hearings by more than half since fiscal year 2016
and reduced the average processing time by 201 days. These are positive
steps, but progress must continue to be made. We must not lose sight of
the fact that those filing for disability have conditions that worsen
over time, without adequate treatment, and many experience financial
hardship as they wait more than a year to have their case heard in
front of an Administrative Law Judge. If SSA's administrative funding
is not adequate, these backlogs will remain, and public service levels
will continue to be compromised.
fiscal year 2021 funding
Resource allocations in fiscal year 2021 must be sufficient to
address deficit-reducing program integrity work, as well as the massive
hearings backlog, increases in other workloads, visitors, and telephone
calls in field offices and to the national 800 number. In addition,
resources are also necessary to advance SSA's ongoing Information
Technology (IT) Modernization project that will significantly enhance
the agency's systems and improve productivity.
To ensure a long-term solution, NCSSMA strongly believes that we
must explore mechanisms for creating a more robust and predictable
funding stream for SSA's administrative expenses. NCSSMA recommends
and/or endorses the following: exclude SSA's administrative funding
from any cap that sets an arbitrary ceiling on discretionary spending;
remove SSA's administrative funding from the discretionary budget caps
and provide a separate limit in the Budget Resolution; establish multi-
year funding for critical systems investments and expenditures; and
expand the definition of program integrity funding to include critical
systems investments and expenditures that facilitate completion of
program integrity initiatives.
conclusion
NCSSMA respectfully requests that Congress provide adequate funding
for the Social Security Administration's (SSA) fiscal year 2021
administrative funding needs. We respectfully request that Congress
consider funding of at least $13.904 billion for SSA's administrative
expenses to ensure progress continues to be made in addressing the
disability hearings backlog, the agency's IT modernization efforts and
additional resources for frontline services in SSA's field offices and
teleservice centers. Our request includes the Commissioner's budget
request of $13.804 billion and at least $100.0 million towards
continued efforts related to the coronavirus crisis and its
accelerating threat to the health, economic security and well-being of
our nation. In addition, NCSSMA respectfully requests that Congress
explore mechanisms for creating a more robust and predictable funding
stream for SSA's administrative expenses. SSA must have the necessary
resources and front-line staffing to provide quality service to the
American public. This includes addressing program integrity workloads
that reduce improper payments and save taxpayer dollars. SSA must
continue investments in IT modernization that will improve quality and
efficiency and help address the high volumes of initial claims and
post-entitlement work.
[This statement was submitted by Peggy Murphy, President, National
Council of Social Security Management Associations.]
______
Prepared Statement of the National Family Planning & Reproductive
Health Association
Chairman Blunt, Ranking Member Murray, and Subcommittee Members:
As the chief executive officer of the National Family Planning &
Reproductive Health Association (NFPRHA), I thank you for this
opportunity to provide testimony in support of increased Title X
funding and critical program language in the fiscal year 2021
appropriations bill. I am deeply concerned by the administration's
continued attacks on the integrity of the Title X program, as
demonstrated by the devastating rule that the Department of Health and
Human Services finalized in 2019.\1\ Today, more than one million
people no longer have access to Title X-supported services at the
health center they used in 2018 due to the rule. I urge Congress to use
the fiscal year 2021 Labor, Health and Human Services, Education, and
Related Agencies appropriations bill to make a strong statement in
support of high-quality, evidence-based, and patient-centered family
planning care and against the Title X rule by including language to
block the rule and reverse the damage done in communities across the
country. With that language in place, we urge Congress to appropriate
$400 million for the program, the funding level the House proposed in
fiscal year 2020.
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\1\ Department of Health and Human Services. Final Rule.
``Compliance with Statutory Program Integrity Requirements.'' Federal
Register 84 (March 4, 2019): 7714-7791.
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NFPRHA is a non-partisan 501(c)3 membership association that
advances and elevates the importance of family planning in the nation's
healthcare system and promotes and supports the work of family planning
providers and administrators, especially in the safety net.
Representing close to 1,000 members that operate or fund more than
3,500 health centers in the United States, NFPRHA conducts and
participates in research; provides educational subject matter expertise
to policy makers, healthcare providers, and the public; and offers its
members capacity-building support aimed at maximizing their
effectiveness and financial sustainability as providers of essential
healthcare. Prior to the grantee shifts caused by the 2019 Title X
rule, NFPRHA represented more than 70 percent of Title X grantees and
more than 90 percent of Title X service sites.
Title X has served as the nation's sole Federal program dedicated
to family planning since its inception in 1970, 50 years ago. In 2018,
Title X helped close to 4 million people access family planning and
related health services at nearly 4,000 health centers around the
country.\2\ Title X-funded health centers include a diverse array of
providers, such as freestanding family planning centers, federally
qualified health centers, hospitals, school- and university-based
health centers, and other entities.\3\ For many individuals,
particularly those who have low incomes, are under- or un-insured, or
are adolescents, Title X has been their main access point to affordably
and confidentially obtain contraception, cancer screenings, sexually
transmitted disease testing and treatment, complete and medically
accurate information about their sexual health and family planning
options, and other basic care. In fact, a study found that in 2016, six
in ten women seeking contraceptive services at a Title X-funded health
center saw no other healthcare providers that year,\4\ and in 2016
Title X-supported contraceptive services helped patients prevent an
estimated 755,000 pregnancies.\5\ In addition to that direct clinical
care, Title X supports important health center efforts that are not
reimbursable under Medicaid or private insurance, including staff
training and community-based sexual and reproductive health education
programs.
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\2\ Christina Fowler et al, ``Family Planning Annual Report: 2018
National Summary,'' RTI International (August 2019). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
summary.pdf.
\3\ Prior to implementation of the 2019, many Planned Parenthood
affiliates participated in the program. Planned Parenthood withdrew
from the program in August 2019.
\4\ Megan Kavanaugh, Mia Zolna, and Kristen Burke, ``Use of Health
Insurance Among Clients Seeking Contraceptive Services at Title X-
Funded Facilities in 2016,'' Perspectives on Sexual and Reproductive
Health 50.3 (September 2018). https://onlinelibrary.wiley.com/doi/full/
10.1363/psrh.12061.
\5\ Jennifer Frost et al, ``Publicly Supported Family Planning in
the United States: Likely Need, Availability and Impact, 2016,''
Guttmacher Institute (October 2019). https://www.guttmacher.org/report/
publicly-funded-contraceptive-services-us-clinics-2015.
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Despite this compelling data, and in spite of the critical
importance of equitable access to family planning services for all
people, the Trump administration pushed forward a rule that has
decimated the Title X network and made it harder for providers to offer
high quality, comprehensive preventive services to patients. I urge you
to include both a prohibition on the rule's implementation and a new
pathway to allow providers that left the program rather than comply
with the rule a way to reenter the program and serve the millions of
patients who rely on them for care. This language is also critical for
the providers that have remained in the program in order to ensure that
patients are left with some access to family planning services.
Furthermore, I urge you to fund the program at $400 million, as the
House proposed in fiscal year 2020. These funds will allow Title X
providers to maintain existing services and provide a down payment on
the resources needed to restore Title X's capacity to serve the
millions of people who could benefit from its services. As you know,
Title X has been funded at just over $286 million for the past 7 years.
In 2016, researchers from the Centers for Disease Control and
Prevention, the Office of Population Affairs, and George Washington
University estimated that Title X would need $737 million annually to
deliver family planning care to all uninsured, low-income women in the
United States.\6\ This estimate understates the true need for Title X,
as it does not include an estimate of costs for men (who made up 13
percent of patients in the network in 20180,\7\ does not address Title
X's trans and nonbinary patients, and does not include an estimate for
the insured patients who rely on Title X's confidentiality protections.
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\6\ Euna August, et al, ``Projecting the Unmet Need and Costs for
Contraception Services After the Affordable Care Act,'' American
Journal of Public Health (February 2016): 334-341.
\7\ Christina Fowler et al, ``Family Planning Annual Report: 2018
National Summary,'' RTI International (August 2019). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
summary.pdf.
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The gap between the funds appropriated and the funds needed has
only grown in recent years. From 2010 to 2016 the number of women who
needed publicly funded family planning services increased by 1.5
million,\8\ but Congress cut Title X's funding by $31 million over that
period. That decrease unfortunately corresponds to dramatic decreases
in the number of patients served at Title X-funded sites; the numbers
dropped from 5.22 million in 2010 \9\ to just under four million in
2018.\10\ NFPRHA and its members are deeply concerned about diminishing
access to high-quality family planning care and urge Congress to take
an initial step to reverse this devastating trend by appropriating $400
million for Title X in fiscal year 2021.
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\8\ Jennifer Frost, Lori Frohwirth and Mia Zolna, ``Publicly
Supported Family Planning Services in the United States: Likely Need,
Availability, and Impact, 2016,'' Guttmacher Institute (October 2019).
https://www.guttmacher.org/report/publicly-supported-FP-services-US-
2016.
\9\ Christina Fowler et al, ``Family Planning Annual Report: 2010
National Summary,'' RTI International (August 2019). https://
www.hhs.gov/opa/sites/default/files/title-x-fpar-2018-national-
summary.pdf.
\10\ Fowler et al, ``Family Planning Annual Report: 2018 National
Summary.''
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The need for the Title X program and its network of providers is
even more critical as the coronavirus affects communities across the
country. Family planning and sexual health services are often time-
sensitive, and the need for these services does not stop during a
pandemic. In fact, recent public opinion polling shows that a majority
of US adults (65 percent) think now is a bad time for individuals and
couples to try to get pregnant, and only 5 percent of adults would
consider it ``less essential'' for individuals to have that access to
birth control during the coronavirus pandemic.\11\ Now more than ever,
the Title X provider network, already struggling in the wake of years
of attacks and chronic underfunding, needs the robust support of
Congress to continue to provide high-quality family planning and sexual
health services.
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\11\ Morning Consult, on behalf of the National Family Planning &
Reproductive Health Association (NFPRHA), conducted a poll using a
national sample of 2,200 U.S. adults, between April 30--May 2, 2020.
The interviews were conducted online, and the data were weighted to
approximate a target sample of U.S. adults based on age, educational
attainment, gender, race, and region. Results from the full survey have
a margin of error of +/-2 percent.
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Furthermore, family planning staffing has been impacted at health
centers due in some instances to employees being redeployed to COVID
response and because of the individual toll the pandemic has taken on
staff, including short-term and long-term absences as employees deal
with health and family issues. Staffing issues coupled with decreased
patient visits and the likelihood that states will need to cut family
planning funding in future budgets due to fiscal crisis means that
current Federal funding for safety-net health centers is simply not
enough. Access to essential services depends on health centers
receiving sufficient funds to remain open and programmatic rules that
allow expert providers to offer the best possible care.
Thousands of providers and millions of patients are counting on
Congress to stand strong against attacks on family planning and support
the Title X program. NFPRHA looks forward to working with committee
members in those efforts.
Sincerely.
[This statement was submitted by Clare M. Coleman, President & CEO,
National Family Planning & Reproductive Health Association.]
______
Prepared Statement of the National Hispanic Medical Association
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, I appreciate the opportunity to submit a written
testimony for the record for the fiscal year 2021 Appropriations for
Labor, Health and Human Services, Education and Related Agencies. My
name is Elena Rios, MD, MSPH, FACP and I have served as the President
and CEO of the National Hispanic Medical Association (NHMA) since 1994.
NHMA requests assistance, resources, and relations that promote
improved health outcomes for Hispanics.
As of July 2016, there are about 57.5 million (17.8 percent) of
Hispanics in the United States and it is projected to reach 119 million
by 2060.\1\ However, Hispanics continue to remain underrepresented in
all disciplines of healthcare professionals. According to the AAMC,
Hispanic physicians only account to 5.8 percent of the population as
compared to their White counterpart (56.2 percent).\2\
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\1\ https://www.census.gov/newsroom/facts-for-features/2017/
hispanic-heritage.html.
\2\ https://www.aamc.org/data-reports/workforce/interactive-data/
figure-18-percentage-all-active-physicians-race/ethnicity-2018.
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In a 2016 report published by the Office of Personnel Management
(OPM), Hispanic representation in the Senior Executive Service (SES)
rose from 4.4 percent to 4.6 percent between 2015 and 2016.\3\ This
modest increase falls short when compared to Hispanic representation in
the civilian workforce, which is 15 percent. In addition to the OPM
findings, the Equal Employment Opportunity Commission (EEOC) found that
Hispanics are underrepresented in senior positions across the Federal
Government employment and leave at a faster rate than they are being
recruited. EEOC also concluded that intentional efforts with national
stakeholder groups are needed to increase the leadership pipeline in
areas of critical need such as STEM and healthcare rather than
internships, which have not resulted in much Federal employment.\4\
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\3\ https://www.opm.gov/policy-data-oversight/diversity-and-
inclusion/reports/feorp-2016.pdf.
\4\ https://www.eeoc.gov/Federal/reports/hwg.html#--Toc471524086c.
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NHMA recommends providing at least $1 million for the Office of
Minority Health (OMH) or the Health Resources & Services Administration
(HRSA) to create a Hispanic Health Leadership Fellowship Program and at
least $1.5 million for the National Institute on Minority Health and
Health Disparities (NIMHD) to create a Hispanic Junior Faculty Research
Accelerator. These two special initiatives will (1) allow the U.S. to
produce an increased number of qualified health professionals from
underrepresented communities; (2) increase the sustainable engagement
of Hispanic health professionals in Federal-funded research programs;
and (3) provide greater access to healthcare and improve health
outcomes for members of the Hispanic community. NHMA has submitted
these special initiative funding requests to Members of the Senate
Appropriations Committee Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies and Members of Congress.
The Hispanic Leadership Fellowship Program's goal is to create a 1
year training program to engage mid-career Hispanic physicians across
the nation who are interested in decisionmaking positions the Federal
Government. The curriculum will include didactic lectures, panels, case
studies, leadership-skill building, healthcare policy, cultural
competence, and exchanges with national leaders who direct Federal
health policy and programs that directly and indirectly affect the
health and wellness of the Hispanic population. The requested funding
and report language for this program will address national findings
related to the underrepresentation and shortage of Hispanic leaders
within the Federal and state healthcare sectors.
The Hispanic Junior Faculty Research Accelerator Initiative will
support NIH and its national efforts to improve health outcomes for
Hispanics in areas marked by persistent health disparities by
supporting the training of junior Hispanic researchers and researchers
who are interested in the Hispanic population. Funding will allow top
junior faculty candidates from across the United States to participate
more robustly in NIH-sponsored programs and receive instruction,
mentoring, and other assistance to develop research competencies.
Junior researchers will be recruited from medicine and public health
from across the nation and be matched with senior researchers who have
experiences with Hispanic health research. This request aligns with the
work of the Office of the Secretary, NIMHD. Additionally, the
leadership of the Chief Officer of Scientific Workforce Diversity
(OSWD) is leading NIH's effort to diversity the national scientific
workforce and expand recruitment and retention of diverse professionals
in fields relevant to NIH's mission. OSWD is purposeful in its efforts
to capture and include diverse talent into biomedical research through
research innovations and data-driven interventions in diversity
including policies, processes, and programs. This funding request
aligns with the work and mission of OSWD and is consisted with the
recommendations include in the NIH-Wide Strategic Plan for fiscal years
2016-2020.\5\
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\5\ https://www.nih.gov/about-nih/nih-wide-strategic-plan.
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Below are proposed report language for both initiatives:
Requested Report Language for Hispanic Leadership Fellowship Program:
Of the funds appropriated, $1 million is provided to support a
Hispanic Leadership Fellowship Program initiative to support increasing
the number and advancement of underrepresented persons to senior
positions at the Federal level and other areas. The Committee
encourages collaboration with a reputable national nonprofit
stakeholder organization with a demonstrable history in developing
Hispanic healthcare leaders.
Requested Report Language for Hispanic Junior Faculty Research
Accelerator:
Of the funds appropriated, $1.5 million is provided to support a
Hispanic Junior Faculty Research Accelerator initiative to support NIH
efforts related to scientific workforce diversity and help ensure
better health outcomes and reduce health disparities affecting the
Hispanic community, as well as the various subgroups classified as
Hispanic. NIH is encouraged to work with national Hispanic stakeholder
groups.
NHMA believes that these modest requests will help increase
diversity across Federal and state governments to help address the low
number of Hispanics in the Federal healthcare workforce and ensure
better health outcomes and reduce healthcare disparities affecting the
Hispanic community. The growing number of Hispanics in the country
shows the further need of more Hispanics in more senior positions who
are familiar with the Hispanic population and can be culturally-
sensitive when putting together policies who will affects millions.
Strong Federal investments in a Hispanic Leadership Fellowship Program
and a Hispanic Junior Faculty Research Accelerator Program are crucial
to increase the representative of Hispanic physicians, caregivers,
clinicians and researchers in health services research. These programs
will provide to our nation's healthcare workforce the foundation
necessary to tackle the challenges we are currently facing.
We look forward to working with you to improve the health of all
Hispanics in the country.
[This statement was submitted by Elena Rios, MD, MSPH, FACP,
President & CEO, National Hispanic Medical Association.]
______
Prepared Statement of the National Indian Child Welfare Association
The National Indian Child Welfare Association (NICWA), located in
Portland, Oregon, has over 35 years of policy experience advocating on
behalf of American Indian and Alaska Native (AI/AN) children in child
welfare and children's mental health systems. Thank you for the
opportunity to provide fiscal year 2021 budget recommendations for
child welfare and children's mental health programs administered by the
Department of Health and Human Services (DHHS). Our full
recommendations appear in the charts below with our priority
recommendations described in more detail underneath the charts.
priority recommendations
Promoting Safe and Stable Families recommendation (Title IV-B,
Subpart 2-Discretionary Portion): Increase mandatory funding to $450
million and $120 million for discretionary funding under this program
to provide additional access to tribes who are currently not eligible
to apply for these funds based upon the current eligibility criteria
that are tied to the funding formula, and increase tribal court
improvement funding to $5 million.
The Promoting Safe and Stable Families Program provides funds to
tribes for coordinated child welfare services that include family
preservation, family support, family reunification, and adoption
support services. This program has a mandatory capped entitlement
appropriation as well as a discretionary appropriation. There is a 3
percent set-aside for tribes under each program. All tribes with
approved plans are eligible for a portion of the set-aside that is
equal to the proportion of their member children compared to the total
number of member children for all tribes with approved plans. Based on
this formula, tribes who would qualify for less than $10,000 are not
eligible to receive any funding. This means that many tribes, typically
those tribes that are most in need, cannot access it because the
overall appropriation is currently too low. Out of the 573 federally
recognized tribes, over 100 tribes have no access to these funds.
Tribal systems endeavor to reduce out-of-home placements whenever
possible, saving children and their families additional trauma and
helping states with services to Native families under their
jurisdiction. Native children in state child welfare systems are three
times more likely to be removed from their homes-as opposed to
receiving family preservation services-than their non-Native
counterparts.\1\ Tribes are providing intensive family preservation and
family reunification services in spite of inadequate funding and
insufficient staffing, which is putting incredible strain on individual
workers and programs.\2\ New prevention services funding under Title
IV-E will help a small portion of tribes, typically those that already
receive Promoting Safe and Stable Funding, but many smaller tribes do
not have access to Title IV-E and rely on these kinds of funds to
reduce out of home placements and stabilize families.
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\1\ Hill, R. B. (2008). An analysis of racial/ethnic
disproportionality and disparity at the national, state, and county
levels (p. 9). Seattle, WA: Casey Family Programs, Casey-CSSP Alliance
for Racial Equity in Child Welfare, Race Matters Consortium Westat.
\2\ National Child Welfare Resource Center for Tribes. (2011).
Findings from the national needs assessment of American Indian/Alaska
Native child welfare programs (p. 23). Retrieved from nrc4tribes.org/
files/NRCT%20Needs%20Assessment%20Findings_APPROVED.pdf.
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The Promoting Safe and Stable Families Program offers support for
culturally based services that tribes already have experience with,
such as parenting classes, home visiting services, and respite care for
caregivers of children. This program is vital to the tribes that depend
on it to support efforts to prevent the unnecessary removal of AI/AN
children from their homes.
Tribes are also eligible to apply for the Tribal Court Improvement
Program, a competitive grant program authorized under Promoting Safe
and Stable Families for states and tribes. A $1 million tribal set-
aside was created in the 2011 Child and Family Services Improvement and
Innovation Act, Public Law No. 112-34 (2011). Seven tribal court
improvement project grantees are currently funded under this program.
They are using these funds to strengthen their family courts and better
integrate the work of their courts with their child welfare systems and
with their state court partners who serve Native children and families
under their jurisdiction.
Title IV-E Prevention Services Program: Extend DHHS cultural
evidence-based guidance related to directly funded tribes under Title
IV-E Prevention Services Program to tribes operating the Title IV-E
Prevention Services Program through an agreement with a state.
The President's fiscal year 2021 budget proposal (DHHS fiscal year
2021, Administration for Children and Families, Justification of
Estimates for Appropriation Committees, page 311) proposes to extend
earlier issued guidance that provided tribes in Title IV-E agreements
with states the same level of flexibility to utilize culturally-based
services under the Title IV-E Prevention Services Program. This
proposal does not require additional expenditure of Federal funds and
is a reasonable extension of the previously issued guidance for tribes
(see ACYF-CB-PI-18-10). Currently only 10 tribes are operating the
Title IV-E program directly from the Federal Government while over 130
tribes are operating the Title IV-E program in an agreement with a
state. The current guidance only provides authority to the small number
of tribes operating the Title IV-E program directly through the Federal
Government to establish and utilized cultural services. Not only have
many tribes asked for this application to tribes in agreements with
states, but also several states that have Title IV-E agreements with
tribes. Extending the guidance to a larger number of Title IV-E tribes
will have the benefit of supporting more effective services and assist
states that are working to improve outcomes for Native children and
families in partnership with tribes.
priority recommendations
Programs of Regional and National Significance, Children and Family
Programs (includes Circles of Care): Ensure that $8 million under this
line item continues to be reserved specifically for the tribal and
urban Indian community Circles of Care program in fiscal year 2021.
The Children and Family Programs under Programs of Regional and
National represents funds allocated to support the tribal Circles of
Care program. Circles of Care is a competitive grant program
exclusively for tribal communities. It is the cornerstone of tribal
children's mental health programming.
Circles of Care is a three-year planning grant that helps
communities design programs to specifically serve AI/AN children with
serious behavioral health issues. Specifically, Circles of Care funds
the development of the tribal capacity and infrastructure necessary to
support a coordinated network of holistic, community-based, mental and
behavioral health interventions in tribal communities.
Circles of Care is one of only two SAMHSA programs that allow
tribes and tribal organizations to apply for funding without competing
with other governmental entities (states, counties, or cities). There
are currently 14 communities receiving Circles of Care funding.
AI/AN children and youth face a ``disproportionate burden'' of
mental health issues while simultaneously facing more barriers to
quality mental healthcare.\3\ Since its inception in 1998, the Circles
of Care program has affected 49 different tribal and urban Indian
communities. These programs have been incredibly successful. The
majority of tribes who have received these grants have created long-
term, sustainable systems of care for their children.
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\3\ American Psychiatric Association. (2010). Mental health
disparities factsheet: American Indians and Alaska Natives (p. 4).
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Children's Mental Health Initiative (Systems of Care): Increase
funding to $135 million to allow for continued support of the current
four-year grantees and funding of new grantees in fiscal year 2021.
The children's mental health initiative supports the development of
comprehensive, community-based ``systems of care'' for children and
youth with serious emotional disorders. This includes funding for 1
year System of Care Expansion Planning Grants, four-year System of Care
Expansion Implementation Grants, and six-year Children's Mental Health
Initiative System of Care Grants. AI/AN communities are eligible for,
and recipients of, each of these grants, but must compete with non-
tribal applicants to receive these funds.
Children's Mental Health Initiative System of Care Grants support a
community's efforts to further plan and implement strategic approaches
to mental health services. These approaches are based on important
principles: they must be family-driven; youth-guided; and meet the
intellectual, emotional, cultural, and social needs of children and
youth. Since 1993, 180 total projects have been funded, dozens of which
have been in tribal communities. Currently, 12 tribal communities are
funded.
Evaluation studies of System of Care have indicated return on
investment from cost-savings in reduced use of in-patient psychiatric
care, emergency room care, and residential treatment even when other
community- or home-based care is provided. There are also cost savings
from decreased involvement in juvenile justice systems, fewer school
failures, and improved family stability.\4\
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\4\ Stroul, B. (2015). Return on investment on System of Care for
children with behavioral health challenges: A look at wraparound. The
TA Telescope, 1(2), pp. 1-2.
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Programs of Regional and National Significance, Tribal Behavioral
Health Program: Increase funding for the Tribal Behavioral Health
program (mental health and substance abuse prevention programs) to $60
million in fiscal year 2021.
In the fiscal year 2020, the Tribal Behavioral Health Grants were
funded at $40 million ($20 million in the Mental Health appropriation
and $20 million in the Substance Abuse Prevention appropriation). NICWA
recommends $60 million in fiscal year 2021 to continue to address the
expansion of suicide prevention, mental health, and substance abuse
activities for Native communities.
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 promote mental
health among AI/AN young people.
AI/AN young people are more likely than other youth to have an
alcohol use disorder. In 2007, 8.5 percent of all AI/AN youth struggled
with alcohol use disorders compared to 5.8 percent of the general youth
population.\5\ Although these statistics are troubling, with adequate
resources tribes are best able to serve these young people and help
them heal before they reach adulthood.
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\5\ U.S. Department of Justice, Office of Justice Programs, Office
of Juvenile Justice and Delinquency Prevention. (2014). Attorney
General's Advisory Committee on American Indian/Alaska Native Children
Exposed to Violence: Ending violence so children can thrive (p. 81).
Retrieved from www.justice.gov/sites/default/files/defendingchildhood/
pages/attachments/2014/11/18/finalaianreport.pdf.
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There is growing evidence that Native youth who are culturally and
spiritually engaged are more resilient than their peers. Research has
revealed that 34 percent of Native adolescents preferred to seek mental
or substance abuse services from a cultural- or religious-oriented
service provider. In other research, American Indian caregivers
preferred cultural treatments (e.g., sweat lodge, prayer) for their
children and found the traditionally based ceremonies more effective
than standard or typical behavioral health treatment.
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\6\
\6\ Novins, D. K., & Bess, G. (2011). 10. Systems of mental
healthcare for American Indian and Alaska Native children and
adolescents. In P. Spicer, P. Farrell, M. C. Sarche, & H. E. Fitzgerald
(Eds.), American Indian and Alaska Native children and mental health:
Development, context, prevention, and treatment. Santa Barbara, CA:
SABC-CLIO, LLC.
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______
Prepared Statement of the National Indian Health Board
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, thank you for the opportunity to offer this testimony. On
behalf of the National Indian Health Board (NIHB) and the 574 Tribal
Nations we serve, I submit this testimony for the record on the fiscal
year 2021 budget for the Department of Health and Human Services (HHS).
NIHB thanks the Committee for maintaining funding levels for Tribal
programs within the fiscal year 2020 Labor-HHS Appropriations Act.
These included a $50 million set aside for Tribal Opioid Response (TOR)
grants; $21 million for Good Health and Wellness in Indian Country
(GHWIC); and $40 million for Tribal Behavioral Health Grants. NIHB also
greatly appreciates the Tribal set-aside in relief packages addressing
COVID-19, including a baseline $125 million set aside in Centers for
Disease Control and Prevention (CDC) funds through the CARES Act.
Since the earliest days of the Republic, all branches of the
Federal Government have acknowledged the nation's constitutional
obligations to Tribal Nations and the special trust obligation of the
United States government to Tribal governments. Congress affirmed this
special relationship with Tribes in the fiscal year 2019 Labor, Health
and Human Services, Education, and Related Agencies (Labor-HHS)
Committee report when it stated ``...Indian Tribes are political,
sovereign entities to which the Federal Government owes a trust
responsibility. Congress has routinely codified this relationship, most
notably in the provision of healthcare by establishing a health system
for Tribal populations exclusively.'' \1\
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\1\ Fiscal Year 2019 House Labor-HHS Committee Report.
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Unfortunately, the COVID-19 pandemic has exacerbated the existing
structural challenges facing the Indian health system. Unlike state and
local governments, Tribes do not have a local tax base to supplement
public health funding. In addition, Tribes are routinely left out of
larger public health funding streams, partly because it is erroneously
assumed that Tribes will receive adequate state funding. Not only is
this factually inaccurate, it runs afoul of the Federal obligation to
fully fund health services in Indian Country, and the government to
government relationship that exists in perpetuity between Tribal
Nations and the United States.
Indeed, many Tribes lack critical public health infrastructure
entirely--including for emergency preparedness and response, disease
surveillance, preventive health services, and so forth. It is important
to note that Tribes receive hardly any public health funding from the
Indian Health Service (IHS), because IHS is primarily a healthcare
delivery system. This means that the small pools of Federal public
health funds Tribes receive represent the vast majority of available
Tribal public health funds.
All Federal public health programs should not only include Tribes
as eligible entities, but also include direct Tribal funding set-
asides. Tribal set-asides further the fulfillment of the Federal trust
obligation for health; but also, without a set-aside, Tribes will more
than likely not receive meaningful public health funding. Many Tribal
public health departments do not have the capacity to compete with
state and local governments for competitive public health grants. The
consequence is that Tribes are routinely left behind in development of
public health infrastructure.
For instance, a 2019 U.S. Department of Health and Human Services
report found that, from fiscal year 2014 to fiscal year 2018, Tribes
received 0.06 percent of funds under the Preventive Health and Health
Services Block Grant ($0.5 million out of $729.2 million). During that
same time period, Tribes received only 0.03 percent of all Substance
Abuse Prevention and Treatment Block Grant dollars ($3 million out of
$8.8 billion). These are just two examples of how Tribes are largely
left behind when direct Tribal set-asides do not exist in statute.
Thus, we strongly urge that the Committee work to increase the number
of direct Tribal set asides for public and behavioral health programs.
centers for disease control and prevention (cdc)
Preventive Health and Health Services Block Grant (PHHSBG): Tribal
public health infrastructure and capacity is significantly lower than
that of states and counties, because Tribes were left behind during the
nation's development of its public health infrastructure. As a result,
Tribal health systems generally lack the capacity to conduct robust
disease surveillance and tracking, engage in preparedness and disaster
relief efforts, and provide comprehensive preventive health services.
While only two Tribes receive a small portion of these funds, it is
vital that this program be maintained and its reach in Indian Country
expanded. NIHB requests that, in fiscal year 2021, Congress maintain
PHHSBG funding at its currently enacted level and provide a direct,
annual set aside of 5 percent for Tribes and Tribal organizations.
Good Health and Wellness in Indian Country (GHWIC): The GHWIC
program is CDC's single largest investment in Indian Country. The
program funds a total of 35 Tribes and Tribal organizations to improve
chronic disease prevention efforts, expand physical activity, and
reduce commercial tobacco use. NIHB is thankful to the Committee for
including a $5 million increase to GHWIC for fiscal year 2019. However,
the fiscal year 2021 President's Budget proposes elimination of this
program for the third year in a row. NIHB requests that the Committee
reject elimination of GHWIC and increase funding to $32 million for
fiscal year 2021.
Funding for HIV, Viral Hepatitis, and Sexually Transmitted
Infections: Tribal communities are disproportionately impacted by HIV,
viral hepatitis, and sexually transmitted infections (STIs). According
to the CDC, rates of new HIV infections increased by 81 percent among
gay and bisexual AI/AN men from 2010 to 2016,\2\ while AI/ANs continue
to have the highest Hepatitis C mortality rates nationwide at 10.8
deaths per 100,000 in 2016.\3\ Furthermore, gonorrhea rates among AI/
ANs are 4.5 times higher than for Whites, while rates of chlamydia and
syphilis are 2.7 and 2.1 times higher respectively.\4\ Nevertheless, in
fiscal year 2018, no Tribe or Tribal organization received STI or viral
hepatitis prevention grants from CDC, and only two community-based
organizations serving AI/ANs received HIV dollars. The fiscal year 2021
Budget Request includes a new $1.5 billion investment in CDC to further
the President's announcement of ending the HIV epidemic by 2030. NIHB
requests that the Committee provide direct 5 percent set asides in HIV,
viral hepatitis, and STI funding for Tribes and Tribal organizations.
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\2\ CDC. (2019). HIV and American Indians and Alaska Natives.
Retrieved from https://www.cdc.gov/hiv/pdf/group/racialethnic/aian/cdc-
hiv-aian-fact-sheet.pdf.
\3\ CDC. Surveillance for Viral Hepatitis: United States, 2016.
Retrieved from https://www.cdc.gov/hepatitis/statistics/
2016surveillance/commentary.htm.
\4\ CDC. Sexually Transmitted Disease Surveillance, 2017. Retrieved
from https://www.cdc.gov/std/stats17/natoverview.htm.
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substance abuse and mental health services administration (samhsa)
Substance Abuse Prevention and Treatment Block Grant (SABG): The
SABG is one of two major block grants administered by SAMHSA, the other
being the Community Mental Health Services Block Grant (MHBG). Tribes
are not eligible to receive MHBG grants, which contributes to the
dearth of mental health services available within Tribal communities.
While all 50 states, the District of Columbia, and eight U.S.
territories receive SABG funding, only 1 Tribe is included. Increasing
Tribal access to SABG is critical towards building Tribal behavioral
health capacity and reducing Tribal behavioral and mental health
disparities. NIHB requests that the Committee set aside SABG funding
for Tribes and Tribal organizations and work with authorizing
committees to extend eligibility for MHBG funding to Tribes.
Tribal Behavioral Health Grants: NIHB was pleased to see both the
mental health and substance abuse TBHGs increased to $20 million each
for fiscal year 2019 ($40 million total). These two Tribally-focused
programs have created over 140 unique projects in Indian Country
addressing a wide variety of mental and behavioral health needs, and
have helped many Tribes address chronic shortages in mental and
behavioral health services. NIHB requests that the Committee double
funding for the TBHG program to $80 million total, and that SAMHSA
engage in Tribal consultation on restructuring the program to be
formula-based with the option for Tribes to apply for funding under 638
self-governance authority.
Opioid Funding: NIHB was pleased to see that the $50 million set
aside for TOR grants and a $10 million set aside for medication-
assisted treatment was maintained in fiscal year 2020. With the COVID-
19 pandemic triggering increases to substance use and overdose death
rates, and with AI/ANs experiencing the second highest overall opioid
overdose death rates, dedicated funding to Tribes for prevention and
treatment is essential. NIHB requests that the Committee double the
Tribal opioid funding set aside to 10 percent for fiscal year 2021 so
that more Tribes can participate and existing grantees can expand the
scope and delivery of services.
health resources and services administration
Health Workforce: As reported by IHS in its fiscal year 2021
Congressional Justification, the Indian health system currently has
1,330 vacancies for healthcare professionals including physicians,
nurse practitioners, dentists, pharmacists, and physician
assistants.\5\ In fact, in a 2018 report released by the Government
Accountability Office (GAO), provider vacancy rates across eight IHS
Areas with substantial direct care responsibilities reached as high as
31 percent (GAO-18-580).\6\ Without sufficient access to providers, the
quality and accessibility of care in the Indian health system will not
improve, and the health status of AI/ANs will remain lower than the
general population. NIHB urges that the Committee maintain its $15
million set aside in NHSC funding for placements within the Indian
health system and reject language in the fiscal year 2021 President's
Budget declaring the set-aside unnecessary.
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\5\ Fiscal Year 2021 Justification of Estimates for Appropriations
Committees: Indian Health Service.
\6\ Government Accountability Office. (2018). Indian Health
Service: Agency Faces Ongoing Challenges Filling Provider Vacancies.
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Health Centers: In addition to chronic provider shortages, the
average age of I/T/U facilities is roughly 40 years, compared to an
average age of roughly 10 years for health facilities nationwide.\7\ In
fact, research shows that an IHS facility built today would not be
replaced for 400 years in the current budget environment.\8\ IHS and
Tribal health systems generally lack access to specialty care
facilities, preventive health centers, behavioral and mental health
clinics, and so forth. Despite the need, only 1.1 percent of patients
served by HRSA's health center program were AI/AN in 2017. Out of 1,375
health center nationwide, only about 22 are Tribally operated. Direct
access to health center funding can help improve Tribal health
infrastructure by expanding funding for health services. As such, NIHB
requests that the Committee enact a 3-4 percent set aside in Health
Center funding for the I/T/U system.
---------------------------------------------------------------------------
\7\ The 2016 Indian Health Service and Tribal Health Facilities'
Needs Assessment Report to Congress. Retrieved from https://
www.ihs.gov/newsroom/includes/themes/responsive2017/display_objects/
documents/RepCong_2016/IHSRTC_on_FacilitiesNeedsAssessmentReport.pdf.
\8\ Ibid.
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Action for Dental Health Program: Nationwide, Tribal communities
struggle with dental afflictions and disparities, as well as a severe
oral health provider shortage. On average, Indian Country has just 1
dentist for every 2,800 people, which is half the number of dentists
per capita nationwide. This shortage contributes to poorer oral health
outcomes across all age groups in Tribal communities. In fact, 41
percent of AI/AN 2-5 year olds and 46 percent of AI/AN adults over the
age of 65 have untreated tooth decay, compared to 10 percent and 19
percent of non-Natives in the same age groups.\9\ As one of the many
policy solutions to restore Indian Country's oral health, NIHB supports
funding for the Action for Dental Health Program (42 U.S.C. 280k(c)),
which includes direct funding to Tribes. NIHB recommends the Committee
appropriate such sums as may be necessary--including a designated
funding set aside for Tribes--for the implementation of the Action for
Dental Health Program in fiscal year 2021.
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\9\ Phipps and Ricks, April 2015; Bruce A. Dye, Gina Thornton-
Evans, Xianfen Li, and Timothy J. Iafolla, NCHS Data Brief No. 191,
``Dental Caries Sealant Prevalence in Children and Adolescents in the
United States, 2011-2012,'' March 2015, http://www.cdc. gov/nchs/data/
databriefs/db191.pdf.
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Centers for Medicare and Medicaid Services: The Medicaid system is
a critical lifeline in Tribal communities, accounting for roughly 13
percent of the overall IHS budget. Moving Medicaid to a block grant
system, as proposed in the fiscal year 2021 President's Budget, would
have major fiscal impacts on Tribal health reimbursements. We also urge
Congress to ensure that AI/ANs are exempt from any mandatory work
requirements under Medicaid, as they would impose additional and
unmanageable burdens on an IHS budget that heavily relies on Medicaid
resources to make up for funding shortfalls. NIHB urges the Committee
to maintain the Medicaid program as is, and expand its reach and
availability for AI/ANs.
Expansion of Self-Governance at HHS: For over a decade, Tribes have
been advocating for expansion of self-governance authority to HHS
programs outside of IHS. Self-governance represents efficiency,
accountability and best practices in managing and operating Tribal
programs and administering Federal funds at the local level. This
proposal was deemed feasible by a Tribal/Federal HHS workgroup in 2011.
Therefore, NIHB requests the Committee direct HHS to enter into pilot
projects for self-governance in fiscal year 2021.
Thank you for the opportunity to submit testimony on the fiscal
year 2021 HHS budget. We thank the Committee for its efforts towards
prioritizing funding to Indian Country. Please do not hesitate to
contact our offices directly if you have any questions or if you
require additional information.
[This statement was submitted by Victoria Kitcheyan, National
Indian Health Board.]
______
Prepared Statement of the National Institute of Mental Health
I appreciate the opportunity to provide written testimony on the
National Institute of Health fiscal year 2021 budget appropriations.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
Unfortunately, the NIMH has a recent history of ignoring those with
the most severe mental illnesses. As Treatment Advocacy Center Founder
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of
Health budget resolution in December 2019, which brings the
NIMH budget to just under $2 billion and represents a 35
percent increase since 2015, one of the largest increases in
the history of the NIMH. Yet, during the 5 years from 2015
through 2019, NIMH funded a total of 2 new drug treatment
trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from
2006 through 2010 when NIMH funded 48 such trials. NIMH has
thus almost entirely given up its role of evaluating drugs for
the treatment of 2 disorders (emphasis added).''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses over the winter holidays, including from our
organization identifying concrete examples of research initiatives the
NIMH could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans. Those with the most severe
forms of mental illness deserve to be prioritized.
There is such a great need for new medications that have reduced
side effects that deter mental health patients from sustaining
treatment adherence. We have no medications that improve cognition for
patients with schizophrenia; a resource that would help my own son a
great deal. His life has been severely compromised by his serious
mental illness and we want our government to lead the way in
researching new medications to help some of our most challenged
citizens. This is not the time to reduce research, but rather to expand
the size and scope of the effort.
Thank you for your consideration of this request.
Sincerely.
______
Prepared Statement of the National Kidney Foundation
summary
The National Kidney Foundation (NKF) is pleased to submit testimony
regarding the significant burden that Chronic Kidney Disease (CKD)
places on our nation's healthcare system and urges the subcommittee to
increase Federal funding for activities that support the
Administration's July 2019 Advancing American Kidney Health (AAKH)
initiative to improve kidney care and outcomes.
While there has always been a compelling need to increase funding
for kidney disease, the need is more urgent than ever given the COVID-
19 crisis, which has taken a disproportionate toll on patients with
chronic kidney disease (CKD), end-stage renal disease (ESRD), and
transplant recipients. Early analysis indicates that patients with CKD
and ESRD are at enhanced risk of developing severe complications as a
result of COVID-19 infection and a recent study from the New England
Journal of Medicine found that kidney transplant recipients diagnosed
with COVID-19 had a 30 percent mortality rate.
Not only is COVID-19 taking its toll on existing kidney patients,
it is actively growing their ranks. In New York City, early estimates
indicate that 20 to 40 percent of COVID-19 ICU patients develop Acute
Kidney Injury (AKI), a condition that damages the kidneys and can
require immediate dialysis. A whole group of people with no previous
history of kidney disease now face acute kidney injury, which brings
with it an increased risk for developing chronic kidney disease and
kidney failure.
Given kidney patients' unique vulnerability to COVID-19, the long-
term costs associated with kidney disease, and the significant burden
this condition places on more than 37 million American adults, we urge
Congress to provide $10 million for CDC to create a Kidney Disease
Public Awareness Initiative; $5 million to expand the CDC CKD
Initiative; $2.25 billion for the National Institute of Diabetes,
Digestive and Kidney Diseases; $10 million for the National Living
Donor Assistance Center; and $25 million to the KidneyX public-private
partnership. We also request the subcommittee to consider the needs of
kidney patients, particularly those with irreversible kidney failure,
as you address the COVID-19 crisis for fiscal year 2021.
about ckd
CKD impacts 37 million American adults and is the nation's 9th
leading cause of death. Kidney disease can be detected through simple
blood and urine tests, yet 90 percent of CKD patients are undiagnosed,
many until advanced stages when it is too late for interventions to
slow disease progression. Nearly 750,000 Americans have irreversible
kidney failure, also known as end-stage renal disease (ESRD), requiring
either kidney dialysis at least 3 times per week or requiring a kidney
transplant. African Americans develop ESRD at a rate of 3:1 compared to
Whites and Hispanic Americans develop it at a rate of 1.3:1 compared to
Whites. Medicare spends nearly $120 billion annually on the care of
people with CKD, including $71 billion for individuals with CKD who
have not progressed to kidney failure.
CKD is a disease multiplier, with many patients also experiencing
cardiovascular disease, bone disease and other chronic conditions. CKD
also is an independent risk predictor for heart attack and stroke.
Early stage intervention can improve outcomes and lower healthcare
costs, yet only 6 percent of patients with high blood pressure and 40
percent with diabetes (which are responsible for two-thirds of all
cases of ESRD) receive testing for CKD. To improve awareness, early
identification, and early stage intervention, NKF calls on Congress to
invest in kidney health programs throughout HHS.
kidney public awareness initiative
A key aspect of the Advancing American Kidney Health (AAKH)
initiative is increased awareness of CKD among the public and
healthcare practitioners to improve early detection, provide early
intervention and improve outcomes. Early intervention can slow the
progression of CKD and in some instances prevent kidney failure, reduce
the impact of comorbidities and reduce hospitalizations and
readmissions. Unfortunately, there is very little funding dedicated to
increasing consumers' awareness of their risk for kidney disease. A
sustained Kidney Public Awareness Initiative will educate at-risk
individuals to enhance awareness of the causes and consequences of
kidney disease and educate clinical professionals on the importance of
early detection and opportunities for intervention. We urge the
subcommittee to provide $10 million for this important effort.
A Kidney Public Awareness Initiative also can help reduce severe
outcomes associated with COVID-19. Hospitalized COVID-19 patients, many
of whom who had no history with kidney disease, are experiencing acute
kidney injury (AKI). These patients as well as those with chronic
kidney disease who are not on dialysis are at increased risk of severe
outcomes from the virus, including the possibility of permanent kidney
failure. Increased public awareness might reduce the incidence of
kidney failure.
cdc chronic kidney disease initiative
The CDC Chronic Kidney Disease Initiative is a comprehensive public
health strategy to address CKD. Primarily, current activities in this
program are devoted to a surveillance, epidemiology, and assistance to
the National Center for Health Statistics for CKD data collection. To
enhance the fight against CKD, the National Kidney Foundation requests
$5 million for the CKD program to establish and implement activities
between national, state, and local public health networks and national
partners to (1) develop strategies to identify and address gaps in CKD
early detection and monitor progress; (2) support strategies to improve
CKD early detection and treatment by primary care providers and; (3)
facilitate the dissemination of information through state and local
public health networks.
national living donor assistance center (nldac)
With 95,000 Americans on a wait list for a kidney transplant and
fewer than 24,000 kidney transplants in 2019, removing barriers to
living donation is widely viewed as a key opportunity to expand the
number of transplants to improve patients' quality of life. The
National Living Donor Assistance Program helps offset living donors'
expenses that are not reimbursed by insurance or other programs, out of
pocket expenses that often are a barrier to donation. For many people,
living organ donation would not have been possible without this
financial assistance.
We are increasingly concerned that our nation's economic downturn,
severe job loss and job insecurity will prevent many individuals to
consider being a living donor. Further, many kidney patients will be
reluctant to seek a living donor for these same reasons. NKF requests
the Committee to provide $10 million in fiscal year 2021. Addressing
financial barriers so that individuals are not burdened with out of
pocket expenses related to their donation is the right thing to do for
organ donors and kidney patients.
nih niddk
Despite the high prevalence of CKD and its impact on patients and
on Medicare (the ESRD program represents 7 percent of Medicare spending
but is only 1 percent of Medicare beneficiaries), NIH funding for
kidney disease research is only about $700 million annually. A key goal
of the AAKH is providing new opportunities for research. America's
scientists are at the cusp of many potential breakthroughs in improving
our understanding of CKD, including genetic kidney disease. Further
advances can lead to new therapies to delay and treat kidney diseases,
which has the potential to provide cost savings to the government like
that of no other chronic disease.
COVID-19 presents additional needs and opportunities for research
on the short and long-term impacts of the pandemic on individuals with
acute kidney injury, chronic kidney disease, dialysis patients and
kidney transplant recipients. Funding is needed for epidemiological
studies and clinical trials to better understand and treat their kidney
challenges and other complications that result from the virus. We
request $2.25 billion for NIDDK.
kidneyx
The National Kidney Foundation is an enthusiastic partner in the
Kidney Innovation Accelerator (KidneyX), an HHS and American Society of
Nephrology initiative to support and drive innovation in the
prevention, diagnosis and treatment of CKD. KidneyX consists of prize
competitions to attract entrepreneurs, including those who are trying
to develop an artificial kidney. KidneyX has attracted interest from a
large and talented sphere of innovators. We urge the subcommittee to
provide $25 million in fiscal year 20201 to enable this promising
research and innovation to move forward.
Thank you for your past support and consideration of the National
Kidney
Foundation's requests for fiscal year 2021.
______
Prepared Statement of the National Marrow Donor Program/Be The Match
Chairman Blunt, Ranking Member Murray and members of the
Subcommittee, my name is Kristin Akin from Chesterfield, Missouri. On
behalf of the patients, family members, donors, couriers, volunteers,
and staff of the National Marrow Donor Program (NMDP)/Be The Match, I
want to express my most sincere gratitude to the members of the
Committee for your work last year, to fully fund for the first time the
C.W. Bill Young Cell Transplantation Program (Program) within the
Health Resources and Services Administration (HRSA), Health Care
Systems account. In fiscal year 2021, we respectfully request that the
subcommittee maintain full funding for the program at the President's
requested and authorized amount of $30,009,000.
By establishing a national bone marrow donor registry in the mid-
1980s, Congress promised patients with blood cancers, like leukemia and
lymphoma, that they would have a way to find a life-saving donor match.
While bone marrow transplant started as a cure for a single disease, we
now provide cures for over 70 diseases, everything from cancers, blood
disorders, immune deficiencies and Sickle Cell. Just last December, the
Program completed its milestone 100,000th transplant between a matched,
unrelated donor and a patient. This has been a true public/private
partnership for more than 30 years and it is obvious that the funding
is saving lives.
My son, Andrew Preston Akin, was born on June 5, 2007. At ten weeks
old, what initially started as severe jaundice quickly landed us in the
Pediatric Intensive Care Unit (PICU) at our local hospital. After
months of tests, on September 7, 2007, our world was officially turned
upside down when we were informed that Andrew actually had a rare
immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH), and
the only cure was a bone marrow transplant.
Our then six-month-old son underwent his first bone marrow
transplant in an effort to save his life. He was started on the
standard protocol for HLH (HLH 2004) and initially responded very
positively. But, suddenly, his HLH came roaring back and not only did
we have to move up his transplant, we used umbilical cord cells, as
there was not a suitable bone marrow match on the registry at the time.
Grateful and optimistic that this was the end of HLH and the beginning
of a new and healthy Andrew, we were devastated to learn that 2 months
after his transplant, it did not work, and he would need another one.
In the meantime, we continued with steroids, chemotherapy and a
host of other drugs, all the while keeping him in a bubble away from
any and all germs. The search began again to find Andrew the best
possible unrelated, matched bone marrow donor. Excited that marrow was
going to be the answer to our prayers, Andrew underwent his second bone
marrow transplant right before his first birthday. Sadly, almost a year
to the day of his diagnosis, we learned that again, for various
reasons, his transplant was not a success.
Through this process we learned several things about Andrew's
disease: the cause of his HLH was among the newest genetic mutations--
X-Linked Lymphoproliferative Disorder #2 (XLP-2). Because it is X-
linked, the doctors immediately tested me and our other son Matthew. On
my 34th birthday, I received among the worst news in my life: not only
was I the carrier, but my healthy 4-year old son also carried the
mutation, meaning it was only a matter of time before he, too, would
get HLH.
After countless discussions with the team of experts, we weighed
the pros and cons of taking Matthew into transplant while he was
healthy or waiting until the disease struck.
We did another preliminary search on the bone marrow registry and
found one perfect match. Not knowing if that match would be there down
the road, we made the extremely difficult decision to transplant
Matthew prophylactically.
At the same time, we prepared Andrew for his third bone marrow
transplant in less than 2 years.
We were fighting for the lives of our two sons.
Andrew, only 27 months old, developed severe pulmonary
complications that ultimately took his life on September 5, 2009 in the
PICU.
Matthew was just two weeks post-transplant, we thought life could
not get any worse, but somehow, eight short months later, it did. Our
first-born son, Matthew Austin Akin passed away in the same PICU on May
1, 2010. He was only 5 and a half years old.
My husband and I have experienced every parent's worst nightmare,
twice, but we both agreed we would not allow our son's deaths to be the
last thing people remembered about them. Its why my husband and I
started the Matthew and Andrew Akin Foundation in their memory: to
raise awareness and critical funds for HLH, NMDP, and the American Red
Cross, and also to advocate for other parents and children. However, I
would be remiss if I did not share that a very large part of what
drives us to continue to help others is the fact that we were blessed
with the opportunity to be parents again, twice, through adoption.
William and Christopher are the reason we have love in our hearts and
can fight for the memory of their brothers Matthew and Andrew.
While Matthew and Andrew ultimately lost their lives due to disease
complications, NMDP was our line of hope that we held onto from day one
when learned that a successful bone marrow transplant was the only
cure. With each transplant my boys received, we were reminded of the
kindness of strangers, the feeling of indebtedness to NMDP and Congress
for establishing the registry and the power of a worldwide network. It
has been and will continue to be my honor to volunteer my time with
NMDP.
The C.W. Bill Young Cell Transplantation Program, authorized by
Congress, has been funded by the Committee and fulfills three important
missions. The first is the nation's registry, which includes more than
22 million selfless volunteers, like my sons' donors, who stand ready
to be a life-saving bone marrow donor. It also includes more than
300,000 cord blood units, 106,000 of which are in the National Cord
Blood Inventory, which is also funded by your Committee. When we
couldn't find a matching donor for Andrew right away, a cord blood
transplant was our only hope for his first transplant. Through
international relationships, NMDP has access to more than 35 million
potential donors and 783,000 cord blood units worldwide.
While Matthew and Andrew were able to proceed to transplant thanks
to their selfless matching donors, there are still many patients who
cannot find a match on the registry. This is why the full funding you
provided in fiscal year 2020, and which we are asking for in fiscal
year 2021, is so critically important. From the moment doctors search
the registry for a donor, to the safe delivery of the life-saving cells
to the bedsides of patients for transplant--NMDP is there every step of
the way. NMDP ensures that the global network, technology, and
logistical support are in place to facilitate a transplant.
The Program's second mission is to support patients and families
through its Office of Patient Advocacy. NMDP works tirelessly to
improve the lives of patients and provide one-on-one support to these
individuals and their families. They offer the resources and guidance
patients need throughout the transplant process--from deciding if
transplant is right for them to adjusting to life after transplant.
Finally, the Stem Cell Therapeutic Outcomes Database is a third
program component that helps doctors significantly impact/improve
survival for blood cancer and other diseases while also improving the
quality of life for thousands of transplant patients. NMDP is
relentless in its search to find answers that will lead to better donor
matching, more timely transplants, and treatment of even more blood
diseases through transplant.
Thank you for the opportunity to share my story and most
importantly thank you for learning a little bit about my beautiful sons
Matthew and Andrew. Your longstanding support for this Program is the
hope that people hold onto after receiving their life-threatening
diagnosis. On behalf of those who are alive today, those who are
currently searching the national registry for their potential life-
saving donor and for those who will need to look to the Program for
help in the future, I urge you to once again provide full funding for
the C.W. Bill Young Cell Transplantation Program at the authorized
amount of $30,009,000 as you did for the current year and as is
recommended in the President's budget. In this unprecedented time that
is full of uncertainty, full funding for NMDP will certainly help save
lives and there is no better work than that.
[This statement was submitted by Kristin Akin, Staff, National
Marrow Donor Program/Be The Match.]
______
Prepared Statement of the National Multicultural Alliance
The National Multicultural Alliance (NMCA), formerly National
Minority Consortia (NMC), submits this statement regarding the fiscal
year 2021 request for fiscal year 2023 advance appropriation for the
Corporation for Public Broadcasting (CPB). We are an alliance of five
separate and distinct national organizations, who, with modest support
from CPB, bring authentic voices and unique stories of diversity to all
of America's communities via public broadcasting and its digital
platforms. Our requests are the following: (1) To provide a much needed
increase in funding to $515 million in fiscal year 2023 advance
appropriation for CPB; and (2) that Congress direct CPB to meaningfully
increase its commitment to diverse programming and serving underserved
communities.
Provide fiscal year 2023 advance appropriation for CPB of $515
million. Public broadcasting enhances the lives of millions of
Americans, including those in rural areas with free, unique local and
national education resources that would otherwise not be available.
Public television stations provide the only preschool education for
more than half of America's children.
Public broadcasting upholds strong ethics of responsible journalism
and thoughtful examination of American history, life and culture. In
America, where more than half of all children born today are racial and
ethnic minorities, it is essential that our public media system can
continue to deliver well-researched and authentic stories that reflect
our nation's unique and rapidly diversifying populace.
From children's educational content to public safety awareness,
America's public broadcasting system is a necessary tool to ensure a
well-educated, well-informed, and cultured civil society capable of
meeting the responsibilities of self-government in the world's most
important democracy. The Federal investment in public media is
essential to making these services available to everyone, everywhere,
every day for free.
Direct CPB to increase its efforts for diversity to meet the
demands of a growing and diverse public. We applaud the leadership of
Representative Lucille Roybal-Allard and the House Appropriations
Committee which last year included in its House Report 116-62, page
227, the following statement:
``According to the Public Broadcasting Act, one of the greatest
priorities of public broadcasting is to address the 'needs of
unserved and underserved audiences, particularly children and
minorities.' Programming that reflects the histories and
perspectives of diverse racial and ethnic communities is a core
value and responsibility of public broadcasting, therefore the
Committee supports continued investment in the National
Minority Consortia to help accomplish this goal.''
We urge Congress in bill and/or report language to continue to
include language that recognizes the importance of the work of the five
members of the National Multicultural Alliance (NMCA) and the need to
rapidly increase and expand efforts across programming, content
creation, and training, to meet the demands of an increasingly diverse
public.
The National Multicultural Alliance develops, funds, acquires and
distributes diverse content to public media entities to serve
underrepresented communities. These stories reflect the current social
issues and the rich culture and history and of our rapidly changing
multicultural landscape, transcending statistics and bringing universal
American stories to all U.S. citizens.
The five members of the National Multicultural Alliance each
receive an appropriation of $1.3 million per year from CPB. Combined,
this amount totals to just under $6.8 million in discretionary funds
from CPB per year which is only 1.5 percent of the current CPB budget.
A modest 10 percent increase by CPB to the NMCA appropriation for a
combined total of $7.5 million would go a long way in supporting the
continued development of diverse content for public media and the
support of filmmakers of color. Through its work, the NMCA helps to
ensure the future strength and relevance of public media with content
from and about diverse communities.
about the national multicultural alliance (nmca) organizations
Black Public Media (BPM), formerly known as National Black
Programming Consortium, develops produces, funds, and distributes media
content about the African American and global Black experience. BPM
supports diverse voices through training, education, and investment in
visionary content makers. Some award-winning programs include The Black
Press: Soldiers without Swords (Stanley Nelson), I Am Not Your Negro
(Raoul Peck), Maya Angelou: Still I Rise (Rita Coburn-Whack), and
Shirley Chisholm: Unbought & Unbossed (Shola Lynch).
The Center for Asian American Media (CAAM) presents stories that
convey the richness and diversity of Asian American experiences to the
broadest audience possible. CAAM funds, produces, and exhibits works in
film, television and digital media. Recent films include The Chinese
Exclusion Act, by Ric Burns and Li-Shin Yu; Norman Mineta and His
Legacy: An American Story, by Dianne Fukami; and the upcoming May 2020
PBS broadcast of Asian Americans, a co-production of CAAM and WETA.
CAAM also presents CAAMFest, the world's largest film festival for
Asian and Asian American film.
Latino Public Broadcasting (LPB) is public media's largest Latino-
focused content developer and funder providing programming to public
television's nearly 360 stations and media platforms. Supporting the
work of Latino filmmakers, LPB has awarded more than 13 million dollars
in production funding and provided approximately 248 hours of national
programming and digital content to PBS. LPB's VOCES on PBS reached 3.7
million viewers with content on the rich diversity of the Latino
experience. Some productions include Latino Americans, DOLORES, Raul
Julia The World's a Stage, The Longoria Affair, among others.
Pacific Islanders in Communications (PIC) develops media content
that results in a deeper understanding of Pacific Island history,
culture, and contemporary challenges. PIC provides funding support for
productions, talent development, broadcast services, and community
engagement. PIC's Emmy award winning series Family Ingredients is
gearing up for its third season on PBS and its signature series Pacific
Heartbeat, which reached over 24 million households last year, will
begin its ninth season in April. Eating Up Easter will air on
Independent Lens later this year.
Vision Maker Media (VMM) serves Native producers and Indian country
by developing, producing and distributing educational content for
broadcast and digital media. This year, VMM will deliver 20
documentaries to Public Broadcasting stations. Also, Vision Maker Media
supports production training for American Indians and Alaska Native
communities. A key strategy of VMM's work is the development of strong
partnerships with tribal nations, Indian organizations and Native
communities. Recent productions include American Masters Words from a
Bear, Dawnland, Blackfeet Flood, Attla and a second season of
Skindigenous. Vision Maker Media strives to share Native perspectives
by Native independent filmmakers nationally.
Leslie Fields-Cruz, Black Public Media, 8 W. 126th St., New York,
NY 10027 [email protected]; www.blackpublicmedia.org 212-234-
8200.
Stephen Gong, Center for Asian American Media, 145 9th St., Suite
350, San Francisco, CA 94103 [email protected]; www.caamedia.org 415-
863-0814.
Sandie Viquez Pedlow, Latino Public Broadcasting, 2550 N. Hollywood
Way, Suite 301, Burbank, CA 91505 [email protected]; www.lpbp.org
202-499-0840.
Leanne Ka`iulani Ferrer, Pacific Islanders in Communications, 615
Pi'ikoi St., Suite 1504, Honolulu, HI 96814 [email protected];
www.piccom.org 808-591-0059.
Rebekka Schlichting, Vision Maker Media, 1800 N. 33rd St., Lincoln,
NE 68503 [email protected]; www.visionmakermedia.org 402-472-
3522.
______
Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and Members of the Subcommittee, the National Multiple
Sclerosis Society (Society) thanks you for this opportunity to provide
testimony regarding funding of critically important Federal programs
that impact over one million Americans who live with or are affected by
multiple sclerosis (MS). We would be remiss not to acknowledge the
COVID-19 pandemic that is impacting the entire world. The Federal
agencies and programs under the jurisdiction of this Committee are
critically important to all Americans but will be even more so now and
as the country recovers from the pandemic's impact on the nation's
health and its economy.
Therefore, the Society urges the Subcommittee to provide the
following in fiscal year 2021:
--$471 million for the Agency for Healthcare Research and Quality
(AHRQ)
--$8.45 billion for the Centers for Disease Control and Prevention
(CDC) inclusive of $5 million for the National Neurological
Conditions Surveillance Program authorized in the 21st Century
Cures Act;
--$10 million for the Lifespan Respite Care Program;
--Robust support for Medicare and Medicaid and protection of
Medicaid's current financing structure; and
--At least $44.7 billion for the National Institute of Health (NIH),
including funds provided to the agency through the 21st Century
Cures Act (Public Law 114-255) for targeted initiative;
--At least $150 million for the Patient Centered Outcomes Research
Institute (PCORI); and
--At least $13.5 billion for the Social Security Administration's
administrative budget.
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. A
2019 study confirmed that nearly one million Americans live with MS,
more than double previous estimates and Federal Agencies and programs
underneath the LHHS jurisdiction ensure that these people have what
they need to live their bets lives.
The Society is a fundamental partner with the Federal Government to
address the challenges of each person affected by MS. We believe that
the President's fiscal year 2021 proposed budget request would hinder
MS research and hamper the ability of people with MS from receiving the
coverage and services they need and rely on. The Society urges the
Committee to reject these proposed cuts and instead, adequately fund
research and programs and health coverage and services important to
people with MS.
agency for healthcare research and quality (ahrq)
AHRQ is a small agency that is revolutionizing the healthcare
system based on healthcare costs and quality. It provides evidence for
healthcare providers to use to make healthcare safer, higher quality,
more accessible, equitable, and affordable. Reports like these are
vital in ensuring that the healthcare community has science and
evidence-based information to aid in consultations on treatment
decisions. Now more than ever, the healthcare community needs high
quality, evidence-based guidelines on which they can rely. The Society
recommends Congress provide $471 million for AHRQ in fiscal year 2021.
centers for disease control and prevention (cdc)
As the nation is currently in the middle of the COVID-19 pandemic,
the importance of the CDC cannot be overstated. The CDC is tasked with
protecting public health and safety through the control and prevention
of disease, injury, and disability. Unfortunately, consistent
underfunding has limited the Agency's ability to collect data and
fulfill its mission, including tracing the incidence and prevalence of
neurological diseases like MS. The 21st Century Cures Act authorized
the creation of the National Neurological Conditions Surveillance
System (NNCSS) within the Agency, and Congress has provided funding for
it since 2018. CDC has set up pilot projects in MS and Parkinson's
disease in order to determine what information to collect and the best
methods that can be expanded to use in other neurologic areas. Having
strong and reliable prevalence data is critical to protecting the
public health and funding new and novel research to treat neurologic
conditions. The Society urges Congress to increase funding for the CDC
in fiscal year 2021 by providing $8.45 billion to the Agency, inclusive
of the $5 million for the NNCSS.
centers for medicare & medicaid services
Medicare.--It is estimated that between 25-30 percent of the MS
population relies on Medicare as its primary insurer. Many of these
individuals are under the age of 65 and receive the Medicare benefit
because of their disability. The Society urges Congress to ensure
appropriate reimbursement levels for Medicare providers; maintaining
access to diagnostics and durable medical equipment including power and
manual complex rehabilitation technology and related accessories;
protecting access to needed speech, physical and occupational therapy
services; updating local coverage determinations to keep pace with
advances in care; and affordable access to prescription drugs.
Medicaid.--Medicaid provides comprehensive health coverage to over
10 million persons living with disabilities, plus six million persons
with disabilities who rely on Medicaid to fill Medicare's gaps. Between
5-10 percent of people with MS have Medicaid coverage and people with
MS also rely on Medicaid for access to long-term services and supports.
The Society urges Congress to maintain robust funding for Medicaid and
reject proposals to cap or block grant the program. Especially in the
midst of the COVID-19 pandemic, ensuing that individuals have health
coverage is vital and we oppose any policy shift that would limit or
cut services for people with MS.
lifespan respite care program
The Lifespan Respite Care Program provides competitive grants to
states to establish or enhance statewide lifespan respite programs that
better coordinate and increase access to quality respite care.
Approximately one quarter of individuals living with MS require long-
term care services at some point during their lifetime. Often, a family
member steps into the role of primary caregiver. 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.
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. Much existing respite care has age
eligibility requirements and importantly, the Lifespan Respite Care
Program serves families regardless of special need or age. MS is
typically diagnosed between the ages of 20 and 50, and Lifespan Respite
programs are often the only open door to needed respite services. For
these reasons, the Society asks that Congress provide $10 million for
the Lifespan Respite Care Program in fiscal year 2021.
national institutes of health
The NIH is the nation's premiere biomedical research institution
and directly supports jobs in all 50 states. The NIH is a fundamental
partner in the Society's mission to stop MS in its tracks, restore what
has been lost, and end MS forever. To date, the Society has invested
over $1 billion to MS research to date; but we rely on Congress to
provide consistent and sustained investments to the agency to cultivate
an environment that is optimal for scientific discovery. NIH continues
to provide the basic research necessary to facilitate the development
of novel therapies. In fact, the NIH has provided the basic research
that has led to every MS treatment that is available today. Though much
progress has been made in MS, there is still a great deal of unmet
need, particularly those who live with progressive forms of the
disease- now is not the time to decrease much needed Federal investment
in NIH. The Society urges Congress to provide at least $44.7 billion
for the NIH, including funds provided to the agency through the 21st
Century Cures Act for targeted initiatives.
patient-centered outcomes research institute
PCORI serves a vital role in ensuring that the public and private
healthcare sectors have valid and trustworthy data on health outcomes,
clinical effectiveness, and appropriateness of different medical
treatments by both conducting research and evaluating existing studies.
Its research addresses the need for real-world evidence and patient-
focused outcomes data that will improve healthcare quality and help
shift healthcare payment models toward value-based care. To date, PCORI
has invested over $69 million in comparative effectiveness studies in
MS. These studies will provide important evidence for the best ways to
address questions surrounding what care approaches work best for whom,
in what care settings. We recommend that Congress reauthorize PCORI to
continue its important mission and fully fund PCORI in fiscal year
2021.
social security administration (ssa)
Due to 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 robust funding of at least $13.5
billion for the Social Security Administration's administrative budget.
We thank the Committee for the opportunity to provide written
testimony on our recommendations for the base funding for Agencies and
programs under the jurisdiction of the fiscal year 2021 LHHS
appropriations bill. The agencies and programs we have outlined above
are of vital importance to people living with MS and all Americans.
Please do not hesitate to contact the Society with any questions that
you may have, and we look forward to continuing to work with the
Committee to help move us closer to a world free of MS.
[This statement was submitted by Leslie Ritter, Associate Vice
President, Federal Government Relations, National Multiple Sclerosis
Society.]
______
Prepared Statement of the National Pancreas Foundation
summary of fiscal year 2021 appropriations recommendations
_______________________________________________________________________
--The Foundation joins the broader research community in requesting
that the National Institutes of Health (NIH) receive a funding
increase of at least $3 billion for fiscal year 2021 to bring
total agency funding up to a minimum of $44.7 billion annually.
--Please provide proportional increases for the various NIH
Institutes and Centers, including the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Cancer Institute (NCI).
--The Foundation joins the broader public health community in
requesting that the Centers for Disease Control and Prevention
(CDC) receive a funding increase of at least $600 million in
discretionary resources to bring total agency funding up to a
minimum of $8.3 billion annually.
--Please provide $5 million in dedicated, line-item funding for a
``Chronic Disease Education and Awareness Program'' within
the National Center for Chronic Disease Prevention and
Health Promotion to facilitate support for meritorious and
timely public health campaigns (as outlined in the fiscal
year 2020 House L-HHS Appropriations Bill).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the subcommittee, thank you for the opportunity to submit testimony on
behalf of the National Pancreas Foundation (NPF) and the patient
community that we serve. We deeply appreciate the investments in the
National Institutes of Health (NIH) that have occurred over the past
five fiscal years and the research advancements that additional
resources have facilitated, most notably in treatment progress for
pancreatitis. For fiscal year 2021, we urge you to maintain this
commitment to medical research and to similarly increase support for
emerging public health programs, most notably at the Centers for
Disease Control and Prevention (CDC). Thank you again.
about the foundation
The National Pancreas Foundation is a patient-driven, non-profit
organization that provides hope for those suffering from pancreatitis
and pancreatic cancer by funding cutting edge research, advocating for
new and better therapies, and providing support and education for
patients, caregivers, and healthcare professionals.
conditions of the pancreas
Pancreatitis can be acute of chronic. It is characterized by
inflammation of the pancreas, and chronic pancreatitis does not heal or
improve-it gets worse over time and leads to permanent damage. Chronic
pancreatitis eventually impairs a patient's ability to digest food and
make pancreatic hormones. Chronic pancreatitis can strike at any age,
but often develops in patients between the ages of 30 and 40, and is
more common in men than women. The annual incidence rate is 5 -12 per
100,000 and the prevalence is 50 per 100,000. Pancreatitis can be
managed with proper information and healthy practices.
Pancreatic cancer is currently the third leading cause of cancer
deaths in the United States. One of the major challenges associated
with pancreatic cancer is that the condition often goes undetected for
a long period of time because signs and symptoms seldom occur until
advanced stages. By the time symptoms occur, cancer cells are likely to
have spread (metastasized) to other parts of the body, often preventing
surgical removal of tumors. Research indicates an emerging link between
pancreatitis and the onset of pancreatic cancer.
nih research: progress and opportunities
NIDDK has been a leader on pancreatitis research while NCI has
facilitated key breakthroughs for pancreatic cancer. More work needs to
be done though as translation and clinical research are necessary to
ensure innovative treatment options and diagnostic tools can be
deployed to the benefit of affected patients.
In this regard, NIDDK recently hosted an effort with the community
to capitalize on progress for pancreatitis and ensure promising ideas
move into the FDA pipeline for review. The need remains great as
pancreatitis patients currently have extremely limited treatment
options despite the severity of the illness.
Moreover, the Cancer Moonshot has been extremely meaningful for
scientific efforts focused on pancreatic cancer. Similar to
pancreatitis though, treatment options remain extremely limited despite
the severity of the disease. In fact, due to improvements in other
areas and an overall lack of progress in outcomes, pancreatic cancer is
now the third leading cause of cancer deaths in America.
Over recent years, key Committee Recommendations have been included
that have moved key pancreas research projects forward and it is our
hope that the Subcommittee will continue to demonstrate an interest in
this area during the fiscal year 2021 process as treatment development
activities reach a critical phase.
cdc public health opportunities
The National Center for Chronic Disease Prevention and Health
Promotion coordinates line-item public health programs on a variety of
conditions. Recently, CDC has limited their public health activities
almost exclusively to these named efforts. While these programs have
been highly successful for the conditions they represent, there is a
tremendous public health need to launch a similar program for
pancreatitis.
A lack of adequate professional and public information about
pancreatitis leads to a suboptimal situation where patients are not
effectively managing the condition and as it progresses inappropriate
interventions occur, most notably unnecessary surgery to remove the
pancreas. The CDC can fill key knowledge gap with a pancreatitis
program to disseminate best practices to the professional community and
make sure public health messages reach at-risk individuals.
Pancreatitis can often be managed if the proper information is
available, which can prevent the progression of disease, including the
onset of pancreatic cancer.
A modest $5 million program will provide CDC with the resources and
flexibility it needs to fund collaborative public health efforts that
can have tremendous impact.
Diane Tonelli's Story
I am a resident of Massachusetts and I have chronic pancreatitis. I
was first diagnosed in 2002 w acute pancreatitis-idiopathic just shy of
2 years after my dad had died from pancreatic cancer. I was
hospitalized 2 times, managed for pain and treated with TPN.
I struggled intensely the first few years. I lost 28 pounds, down
to 92 pounds by mid-summer of 2002.
During the first few years I had genetic testing which was positive
for genetic mutation CFTR R117H- cystic fibrosis and negative for BRCA1
and 2, SPINK1 and PRSS1.
Over the years since initial diagnosis I have had yearly screening.
The disease had progressed to chronic pancreatitis with imaging
revealing moderate to severe disease. I've had a sweat test which
revealed probable Cystic fibrosis and bone density testing has revealed
osteoporosis (density of an 80 year old) due to decrease nutrition
related to pancreas insufficiency.
Currently I take pancreatic enzymes and continue to follow with GI
for pancreas severity and have screening for pancreatic cancer.
[This statment was submitted by David Bakelman, Chief Executive
Officer,
National Pancreas Foundation.]
______
Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair, National Respite Coalition
(NRC), a network of state respite coalitions, providers, caregivers,
and national, state and local organizations. We are requesting $10
million for the Lifespan Respite Care Program administered by the
Administration on Aging, Administration for Community Living,
Department of Health and Human Services, in the fiscal year 2021 Labor,
HHS, and Education Appropriations bill. The increase will enable: (1)
State replication of Lifespan Respite best practices to allow family
caregivers, regardless of the care recipient's age or disability, to
access affordable respite; (2) improved respite quality and expanded
respite provider capacity; and (3) person and family-centered respite
services and information for family caregivers on how to find, use and
pay for respite services.
Respite Care Saves Money and Benefits Families. Delaying a nursing
home placement for individuals with Alzheimer's or avoiding
hospitalization for children with autism can save Medicaid billions of
dollars. Researchers at the University of Pennsylvania studied the
records of 28,000 children with autism enrolled in Medicaid in 2004 and
concluded that for every $1,000 states spent on respite, there was an 8
percent drop in the odds of hospitalization (Mandell, et al., 2012).
Respite may help delay or avoid facility-based placements (Gresham,
2018; Avison, et al., 2018), improve maternal employment (Caldwell,
2007), strengthen marriages (Harper, 2013), and significantly reduce
caregiver depression, stress and burden levels linked to caregiver
health (Broady and Aggar, 2017; Lopez-Hartmann, et al., 2012; Zarit, et
al., 2014).
With at least two-thirds (66 percent) of family caregivers in the
workforce (Mantos, 2015), U.S. businesses lose from $17.1 to $33.6
billion per year in lost productivity of employed caregivers (MetLife
Mature Market Institute, 2006). Higher absenteeism among working
caregivers costs the U.S. economy an estimated $25.2 billion annually
(Witters, 2011). The University of NE Medical Center conducted a survey
of caregivers receiving respite through the NE Lifespan Respite Program
and found that 36 percent of family caregivers reported not having
enough money at the end of the month to make ends meet, but families
overall reported a better financial situation when receiving respite
(Johnson, J., et al., 2018).
Who Needs Respite? About 41 million unpaid family caregivers of
adults provided an estimated 34 billion hours of care--worth $470
billion--to loved ones and friends in 2017 (Reinhard, SC, et al. 2019).
Eighty percent of those needing long-term services and supports (LTSS)
are living at home. Two-thirds of older people with disabilities
receiving LTSS at home receive care exclusively from family caregivers
(Congressional Budget Office, 2013).
Concerns about providing care for a growing aging population are
paramount. However, caregiving is a lifespan issue. The majority (54
percent) of family caregivers care for someone between the ages of 18
and 75 (NAC and AARP, 2020). The National Children's Health Survey
found the number of children with special healthcare needs to be close
to 14 million (Child and Adolescent Health Measurement Initiative,
2020). Families caring for children with special healthcare needs
provide nearly $36 billion worth of care annually (Romley, et al.,
2016).
National, State and local surveys have shown respite to be among
the most frequently requested services by family caregivers (Anderson,
L, et al., 2018; Maryland Caregivers Support Coordinating Council,
2015). Yet, 86 percent of family caregivers of adults did not receive
respite services at all in 2019 (NAC and AARP, 2020). Nearly half of
family caregivers of adults (44 percent) identified in the National
Study of Caregiving were providing substantial help with healthcare
tasks, yet, fewer than 17 percent used respite (Wolff, 2016). The
Elizabeth Dole Foundation has recommended that respite should be more
widely available to military caregivers (Ramchand, et al., 2014).
Respite Barriers and the Effect on Family Caregivers. While most
families want to care for family members at home, research shows that
family caregivers are at risk for emotional, mental, and physical
health problems (Family Caregiver Alliance, 2006; American
Psychological Association, 2012; Spillman, J., et al., 2014). When
caregivers lack effective coping styles or are depressed, care
recipients may be at risk for falling, developing preventable secondary
health conditions or limitations in functional abilities. The risk of
care recipient abuse increases when caregivers are depressed or in poor
health (American Psychological Association, nd). Parents of children
with special healthcare needs report poorer general health, more
physical health problems, worse sleep, and increased depressive
symptoms compared to parents of typically developing children (McBean,
A, et al., 2013).
Respite, that has been shown to ease family caregiver stress, is
too often out of reach or completely unavailable. In a survey of more
than 3000 caregivers of individuals with intellectual and developmental
disabilities (ID/DD), nine in ten reported that they were stressed.
Nearly half (49 percent) reported that finding time to meet their
personal needs was a major problem. Yet, more than half of the
caregivers of individuals with ID (52 percent), Autism Spectrum
Disorder (ASD) (56 percent) or ID and ASD (60 percent) reported that it
was difficult or very difficult to find respite care (Anderson, L., et
al., 2018). Respite may not exist at all for those with Alzheimer's,
ALS, MS, spinal cord or traumatic brain injuries, or children with
serious emotional conditions.
Barriers to accessing respite include fragmented and narrowly
targeted services, cost, and the lack of information about respite or
how to find or choose a provider. Moreover, a critically short supply
of well-trained respite providers may prohibit a family from making use
of a service they so desperately need.
Lifespan Respite Care Program Helps. The Lifespan Respite Care
Program, designed to address these barriers to respite quality,
affordability and accessibility, is a competitive grant program to
states administered by ACL in the Administration on Aging. The premise
behind the program is both care relief and cost effectiveness. Lifespan
Respite provides funding to states to expand and enhance local respite
services across the country, coordinate community-based respite
services to reduce duplication and fragmentation, improve coordination
with other community resources, and improve respite access and quality.
Since 2009, 37 states and DC have received Lifespan Respite grants.
Congress appropriated $2.5 million each year from fiscal year 2009-
fiscal year 2012 and slightly less in fiscal year 2013-fiscal year 2015
due to sequestration. In fiscal year 2016 and fiscal year 2017, the
program received $3.3 million, and $4.1 million in fiscal year 2018 and
fiscal year 2019. We are grateful for the increase to $6.1 million in
fiscal year 2020. With these funds, States are required to establish
statewide coordinated Lifespan Respite care systems to serve families
regardless of age or special need, provide planned and emergency
respite care, train and recruit respite workers and volunteers and
assist caregivers in accessing respite. Lifespan Respite helps states
maximize use of limited resources and deliver services more efficiently
to those most in need. Increasing funding could allow funding of
several new states and help current grantees complete their ground-
breaking work, serve the unserved, and integrate services and grant
activities into statewide long-term services and support systems.
During the current pandemic, when family caregiver social isolation
is escalating, grantees and their primary partners continue to provide
respite safely in states where they are permitted to do so. They are
the frontline workers who may be the only outside contact and support
these families are receiving. If they cannot provide in-person respite,
the network has expanded support services to include regular phone call
and email check ins, delivery of care packages, online support groups,
and virtual training and other educational services via Facebook and
other social media outlets.
Last year, the House passed the Lifespan Respite Care
Reauthorization Act of 2019, introduced by Reps. Jim Langevin (D-RI)
and Rep. Cathy McMorris Rodgers (R-WA) With continued bipartisan
support, the bill authorizes $200 million over 5 years. The Senate
bill, introduced by Senators Susan Collins (R-ME) and Tammy Baldwin (D-
WI), passed the Senate in February. The Senate bill authorizes $10
annually ($50 million over 5 years).
How is Lifespan Respite Program Making a Difference? In describing
the Lifespan Respite Care Program, a distinguished National Academies
of Sciences, Engineering, and Medicine panel concluded in the report
Families Caring for an Aging America, ``Although the program is
relatively small, respite is one of the most important caregiver
supports.'' State Lifespan Respite programs are engaged in innovative
activities:
--AL, AR, AZ, CO, DE, MD, MT, ND, NE, NV, NC, OK, RI, SC, TN, VA, WA,
and WI, administer successful self-directed respite vouchers
for underserved populations, such as individuals with
Alzheimer's disease, traumatic brain injury, MS or ALS, adults
with intellectual or developmental disabilities (I/DD), rural
caregivers, or those on waiting lists for services. When
families are willing and states permit it, these programs
continue to operate during the pandemic.
--AL's respite voucher program found a substantial decrease in the
percentage of caregivers reporting how often they felt
overwhelmed with daily routines after receiving respite.
Caregivers in NE's Lifespan Respite program reported
significant decreases in stress levels, fewer physical and
emotional health issues, and reductions in anger and anxiety.
--Innovative and sustainable respite services, funded in AL, CO, MA,
NC, and NY through mini-grants to community-based agencies,
also have documented benefits to family caregivers.
--AL, IA, MD and NE offer emergency respite and AL, AR, CO, NE, NY,
PA, RI, SC and TN implemented new volunteer or faith-based
respite services.
--Respite provider recruitment and training are priorities in AR, NE,
NY, SC, VA, and WI.
State agency partnerships are changing the landscape. Lifespan
Respite WA, housed in Aging & Long-Term Support Administration,
partnered with WA's Children with Special Health Care Needs Program,
Tribal entities and the state's Traumatic Brain Injury program to
provide respite vouchers to families across ages and disabilities. The
OK Lifespan Respite program partnered with the state's Transit
Administration to develop mobile respite in isolated rural areas.
States, including NY and NV, are building ``no wrong door systems'' in
partnership with Aging and Disability Resource Centers to improve
respite access. States are developing long-term sustainability plans,
but without continued Federal support, many grantees will be cut off
before these initiatives achieve their full impact.
No other Federal program has respite as its sole focus, helps
ensure respite quality or choice, and supports respite start-up,
training or coordination. We urge you to include $10 million in the
fiscal year 2021 Labor, HHS, and Education appropriations bill.
Families will be able to keep loved ones at home, saving Medicaid and
other Federal programs billions of dollars.
For more information, please contact Jill Kagan, National Respite
Coalition at [email protected]. Complete references available on
request.
[This statement was submitted by Jill Kagan, Chair, National
Respite Coalition.]
______
Prepared Statement of the National Rural Health Association
On behalf of the National Rural Health Association (NRHA), we ask
that you continue to support critically important rural health programs
as you move forward with fiscal year 2021 funding measures. We thank
you for your leadership and support for rural health programs and hope
you will continue these important efforts.
NRHA is a national nonprofit membership organization with more than
21,000 members whose mission is to improve the health and healthcare of
rural Americans and to provide leadership on rural issues through
advocacy, communications, education, and research. NRHA's membership is
a diverse collection of individuals and organizations that share a
common interest in ensuring all rural communities have access to
quality, affordable healthcare.
We appreciate the efforts of the Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies immensely and applaud
your leadership in supporting rural health programs. This letter
outlines recommendations that will strengthen the rural healthcare
safety net and ensure that rural Americans maintain access to critical
healthcare services.
Now, more than ever before, it is crucial that the Committee
support programs that seek to address the severe healthcare crises that
are escalating in rural America. Rural healthcare providers, who were
struggling to keep their doors open prior to the COVID-19 virus
pandemic, are having to decrease operations, furlough and lay off
staff, and even close their doors during this pandemic. Relief is
needed for rural healthcare providers before it is too late.
The rural hospital closure crisis continues to intensify. In 2019,
the United States experienced the greatest number of rural hospital
closures in a single year since the beginning of the century, and 2020
is on pace to surpass that record. So far, four rural hospital, have
closed during the COVID-19 virus pandemic, and at least 130 rural
hospitals have closed since 2010. The pandemic has also exacerbated
healthcare workforce shortages that have plagued rural communities for
decades; over 75 percent of rural counties are classified as Health
Professional Shortage Areas (HPSAs).
COVID-19 is now rapidly spreading to areas in rural America.
According to a recent Kaiser Family Foundation report, ``In the two-
week period between April 13 and April 27, non-metro counties saw a 125
percent increase in coronavirus cases (from 51 cases per 100,000 people
to 115), on average, and a 169 percent increase in deaths (from 1.6
deaths per 100,000 people to 4.4).'' All of this is happening at a time
when nearly half of rural hospitals are operating a financial loss.
Compared to their urban counterparts, rural Americans are older,
more likely to have underlying health conditions, and less likely to
have health insurance or financial resources to weather this storm.
Additionally, the latest research indicates that COVID-19 cases are
disproportionately more common among low wage workers, people without
health insurance, people with underlying health conditions, people of
color, and Indigenous people: rural Americans. We must ensure that the
health disparities that have plagued rural communities for decades are
not exacerbated by this pandemic.''
To keep rural providers doors' open as the fight against this
pandemic continues, NRHA asks for robust funding of the fragile rural
healthcare safety net. We encourage the Committee to recognize that
rural America is facing crises now and desperately needs immediate
solutions
Several indispensable discretionary programs help ensure the
efficient and equitable delivery of healthcare services in rural areas.
To better meet these needs, while simultaneously understanding the
fiscal constraints demanded by Congress, the NRHA requests a modest,
across-the-board funding increase of 20 percent (unless another amount
has specifically been authorized by law). These programs include:
--The Rural Health Care Services Outreach, Network and Quality
Improvement Grants (Outreach programs) improve rural community
health by focusing on quality improvement, increasing
healthcare access, coordination of care, and integration of
services. The Outreach Grant Program funds critical community-
based projects for the purpose of increasing access to care in
rural communities, and Network Development Grants address the
financial challenges of working with underserved rural
communities. These grants can be targeted for specific pandemic
needs, such as tracking rural PPE and testing availability.
Additionally, these programs have the flexibility to focus on
community-specific outreach and have an excellent track record
of improving population health. Great successes have been
achieved through these grants in establishing community-based
diabetes control, heart disease and stroke prevention programs.
Utilization of these grants for pandemic preparedness and
control is the most cost-effect and rapid way to implement
community-based rural programs.
--Rural Hospital Flexibility Grants are used by each state to
implement specific rural strategies to ensure access to primary
care in rural communities. Utilization of these grants is the
most effective way to provide relief and resources to rural
areas that have been severely impacted by COVID-19. These
grants allow flexibility, targeted funding, and rapid
distribution. This extraordinarily successful grant program can
be used by hospitals to procure needed equipment, expand
telehealth, and establish rural-specific pandemic plans.
Critical Access Hospitals (CAHs) provide essential services to
their communities, and their continued viability supports
access to care and the health of the rural economy.
Additionally, funding for these grants support partnerships
between states and CAHs to work on quality and performance
improvement activities, as well as help eligible rural
hospitals convert to CAH status and enhance CAH-related
emergency medical services, which is desperately needed during
this crisis. Additionally, it provides support to rural
hospitals with fewer than 50 beds through awards to 46 states
with eligible hospitals and increases the delivery of mental
health services or other healthcare services to meet the needs
of veterans living in rural areas.
--Funding for the Rural Health Policy Development program is used to
support the Federal Office of Rural Health Policy (FORHP) as
they advise the Secretary on rural health issues, conduct and
oversee research on rural health, and provide support for
grants that enhance healthcare delivery in rural communities.
--State Offices of Rural Health, located in all 50 states, help their
individual rural communities build healthcare delivery systems.
They accomplish this mission by collecting and disseminating
information, providing technical assistance, helping to
coordinate rural health interests state-wide, and by supporting
efforts to improve recruitment and retention of health
professionals.
--Telehealth funding is for the Office for the Advancement of
Telehealth, including the Telehealth Network Grant Program,
which promotes the effective use of technologies to improve
access to health services and to provide distance education for
health professionals.
--The Rural Residency Planning and Development Program seeks to
expand the number of rural residency training programs and
subsequently increase the number of physicians choosing to
practice in rural areas. For the purpose of this program, rural
residencies are allopathic and osteopathic physician residency
training programs that primarily train in rural communities.
--The Rural Communities Opioid Response Program (RCORP) initiative
aims to reduce the morbidity and mortality associated with
substance use disorder (SUD), including opioid use disorder
(OUD), in high risk rural communities by providing funding and
technical assistance to multi-sector consortia to enable them
to identify and address OUD prevention, treatment, and recovery
needs at the community, county, state, and/or regional levels.
--National Health Service Corps supports qualified healthcare
providers that are dedicated to working in underserved areas by
providing scholarship and loan-repayment programs for those
serving medically underserved communities and populations with
health professional shortages and/or high unmet needs for
health services.
--The Area Health Education Centers (AHEC) Program develops and
enhances education and training networks within communities,
academic institutions, and community-based organizations. AHECs
develop and maintain a diverse healthcare workforce and broaden
the distribution of the health workforce. The redesigned AHEC
Program invests in interprofessional networks that address
social determinants of health and incorporate field placement
programs for rural and medically underserved populations.
--The Geriatrics Workforce Enhancement Program (GWEP) improves
healthcare for older adults by developing a healthcare
workforce to provide value-based care that improves health
outcomes for older adults by integrating geriatrics and primary
care delivery sites/systems.
--The Teaching Health Center Graduate Medical Education (THCGME)
Program increases the number of primary care physician and
dental residents, increasing the overall number of these
primary care providers. Teaching Health Centers (THCs)
specifically have been shown to attract residents from rural
and/or disadvantaged backgrounds who are more inclined to
practice in underserved areas than those from urban and
economically advantaged backgrounds.
NRHA is grateful for your support in recognizing the need for
providing a sound future for the delivery of rural healthcare. We hope
you will continue to support the millions of Americans in rural and
underserved areas by acknowledging and considering these funding
priorities.
[Contact: Maggie Elehwany, Vice President, Government Affairs and
Policy,
National Rural Health Association [email protected].]
______
Prepared Statement of the National Technical Institute for the Deaf and
Rochester Institute of Technology
Mr. Chairman and Members of the Committee:
I respectfully submit the fiscal year 2021 budget request for NTID
(National Technical Institute for the Deaf), one of nine colleges of
RIT (Rochester Institute of Technology), in Rochester, New York.
Created by Congress by Public Law 89-36 in 1965, NTID provides a
university-level technical and professional education for students who
are deaf and hard of hearing, leading to successful careers in high-
demand fields for a sub-population of individuals historically facing
high rates of unemployment and under-employment. NTID students study at
the associate, baccalaureate, master's and doctoral levels as part of a
university (RIT) that includes more than 17,000 hearing students. NTID
also provides baccalaureate and graduate-level education for hearing
students in professions serving deaf and hard-of-hearing individuals.
budget request
On behalf of NTID, for fiscal year 2021 I would like to request
$84,932,000 for Operations. NTID has worked hard to manage its
resources carefully and responsibly. NTID actively seeks alternative
sources of public and private support, with approximately 26 percent of
NTID's Operations budget coming from non-Federal funds, up from 9
percent in 1970. Since fiscal year 2006, NTID raised almost $24 million
in support from individuals and organizations.
NTID's fiscal year 2021 request of $84,932,000 includes almost
$3,500,000 for establishing a national hub of innovation for deaf
scientists in Rochester, New York. The ``Hub'' will be a collaborative
partnership with the University of Rochester and other area
organizations that will enhance the access of deaf and hard-of-hearing
persons to career opportunities as scientists, biomedical researchers
and health professionals. Hub programs will include a summer research
institute, a pre-career training pipeline for deaf and hard-of-hearing
scientists, mentoring programs, a postdoc-to-faculty program, and
guidance for biomedical research institutions and medical schools on
best practices for training deaf and hard-of-hearing scientists and
health professionals.
NTID's fiscal year 2021 request also includes an additional
$1,000,000 to expand the NTID Regional STEM Center (NRSC) partnership,
which serves deaf and hard-of-hearing students in 12 southeastern
states by promoting training and postsecondary participation in STEM
fields, providing professional development for teachers, and developing
partnerships with business and industry to promote employment
opportunities. Via the NRSC, deaf and hard-of-hearing middle school
students are introduced to STEM programs and careers that will help
inform their academic and career decisions. Deaf and hard-of-hearing
high school students can take NTID STEM dual-credit courses and
participate in career exploration and college preparation programs that
will help them transition from high school to college. In fiscal year
2019, up to 3,404 students, 2,850 educators, 644 parents, 290
employers, 323 interpreters and 174 vocational rehabilitation staff
enrolled in NRSC programs (some may have enrolled in multiple
programs).
Though the total impact and costs of the coronavirus are not yet
known, many NTID students rely on Pell Grants and have limited
financial resources, many NTID students do not have computer/WiFi
access at home and cannot readily adapt to online learning, the demand
for making online resources ASL-accessible has already generated
unanticipated expense, and co-op opportunities for students have been
diminished as industry grapples with the virus. NTID will rally to
support the persistence and graduation of students whose college
careers have been disrupted by this virus, but it will take extra
resources. The coronavirus has also demonstrated the national need for
timely, accurate and official information in ASL about pandemics and
healthcare concerns--a service the Hub could provide.
Currently, NTID is focused on creating a safe environment for
students to return to campus in the fall. Strategies under
consideration are size limits on lectures, online and face-to-face
instruction, virus and antibody testing, contact tracing, social
distancing measures, daily monitoring, quarantine housing, enhanced
disinfection, new food service models, touchless technologies,
sanitized air handling, and upgrading of all residence halls and
academic facilities to support new safety guidelines.
enrollment
Truly a national program, NTID has enrolled students from all 50
states. In Fall 2019 (fiscal year 2020), NTID's enrollment was 1,129
students. NTID also serves students nationwide through Project Fast
Forward, a project that builds a pathway for deaf and hard-of-hearing
students to transition from high school to college in selected STEM
disciplines by allowing deaf and hard-of-hearing high school students
to take dual-credit courses, earning RIT/NTID college credit while they
are still in high school. In fiscal year 2020, 363 deaf and hard-of-
hearing high school students enrolled in dual-credit courses at partner
high schools.
ntid academic programs
NTID offers high quality, career-focused associate degree programs
preparing students for specific well-paying technical careers. NTID
also provides transfer associate degree programs to better serve our
student population seeking bachelor's, master's, and doctoral degrees.
These transfer programs provide seamless transition to baccalaureate
and graduate studies in the other colleges of RIT.
A cooperative education (co-op) component is an integral part of
academic programming at NTID and prepares students for success in the
job market. A co-op assignment gives students the opportunity to
experience a real-life job situation and focus their career choice.
Students develop technical skills and enhance vital personal skills
such as teamwork and communication, which will make them better
candidates for full-time employment after graduation. Last year, 232
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
rates higher than or on par with national persistence and graduation
rates for all students at two-year and four-year colleges. For NTID
deaf and hard-of-hearing graduates, over the past 5 years, an average
of 95 percent have found jobs commensurate with their education level.
Of our
Fiscal year 2018 graduates (the most recent class for which numbers
are available), 95 percent were employed 1 year later, with 65 percent
employed in business and industry, 15 percent in education and non-
profits, and 20 percent in government.
Graduation from NTID has a demonstrably positive effect on
students' earnings over a lifetime, and results in a notable reduction
in dependence on Supplemental Security Income (SSI) and Social Security
Disability Insurance (SSDI). In fiscal year 2012, NTID, the Social
Security Administration (SSA), and Cornell University examined earnings
and Federal program participation data for more than 16,000 deaf and
hard-of-hearing individuals who applied to NTID over our entire
history. The study showed that NTID graduates, over their lifetimes,
are employed at a higher rate and earn more (therefore paying more in
taxes) than students who withdraw from NTID or attend other
universities. NTID graduates also participate at a lower rate in SSI
programs than students who withdrew from NTID.
Using SSA data, at age 50, 78 percent of NTID deaf and hard-of-
hearing graduates with bachelor degrees and 73 percent with associate
degrees report earnings, compared to 58 percent of NTID deaf and hard-
of-hearing students who withdrew from NTID and 69 percent of deaf and
hard-of-hearing graduates from other universities. Equally important is
the demonstrated impact of an NTID education on graduates' earnings. At
age 50, $58,000 is the median salary for NTID deaf and hard-of-hearing
graduates with bachelor degrees and $41,000 for those with associate
degrees, compared to $34,000 for deaf and hard-of-hearing students who
withdrew from NTID and $21,000 for deaf and hard-of-hearing graduates
from other universities.
An NTID education also translates into reduced dependency on
Federal transfer programs, such as SSI and SSDI. At age 40, less than 2
percent of NTID deaf and hard-of-hearing associate and bachelor degree
graduates participated in the SSI program compared to 8 percent of deaf
and hard-of-hearing students who withdrew from NTID. Similarly, at age
50, only 18 percent of NTID deaf and hard-of-hearing bachelor degree
graduates and 28 percent of associate degree graduates participated in
the SSDI program, compared to 35 percent of deaf and hard-of-hearing
students who withdrew from NTID.
access services
Access services include sign language interpreting, real-time
captioning, classroom notetaking services, captioned classroom video
materials, and assistive listening services. NTID provides an access
services system to meet the needs of a large number of deaf and hard-
of-hearing students enrolled in baccalaureate and graduate degree
programs in RIT's other colleges as well as students enrolled in NTID
programs who take courses in the other colleges of RIT. Access services
also are provided for events and activities throughout the RIT
community. Historically, NTID has followed a direct instruction model
for its associate-level classes, with limited need for sign language
interpreters, captionists, or other access services. However, the
demand for access services has grown recently as associate-level
students request communication based on their preferences.
During fiscal year 2019, 145,284 hours of interpreting were
provided--an increase of 24 percent compared to fiscal year 2010.
During fiscal year 2019, 25,978 hours of real-time captioning were
provided to students--a 33 percent increase over fiscal year 2010.
summary
NTID's fiscal year 2021 funding request ensures that we continue
our mission to prepare deaf and hard-of-hearing people to excel in the
workplace and expand our outreach to better prepare deaf and hard-of-
hearing students to excel in college. NTID students persist and
graduate at rates higher than or on par with national rates for all
students. NTID graduates have higher salaries, pay more taxes, and are
less reliant on Federal SSI programs. NTID's employment rate is 95
percent over the past 5 years. Therefore, I ask that you please
consider funding our fiscal year 2021 request of $84,932,000 for
Operations.
We are hopeful that the members of the Committee will agree that
NTID, with its long history of successful stewardship of Federal funds
and an outstanding educational record of service to people who are deaf
and hard of hearing, remains deserving of your support and confidence.
Likewise, we will continue to demonstrate to Congress and the American
people that NTID is a proven economic investment in the future of young
deaf and hard-of-hearing citizens. Quite simply, NTID is a Federal
program that works.
[This statement was submitted by Dr. Gerard J. Buckley, President,
National Technical Institute, Vice President and Dean, Rochester
Institute of Technology.]
______
Prepared Statement of the National Violent Death Reporting System
Thank you for this opportunity to submit testimony in support of
funding for the National Violent Death Reporting System (NVDRS), which
is administered by the National Center for Injury Prevention and
Control at the Centers for Disease Control and Prevention (CDC). The
National Violence Prevention Network (NVPN), a broad and diverse
alliance of health and welfare, suicide and violence prevention, and
law enforcement supports a funding level for fiscal year 2021 of $25.5
million to allow for the continuation nationwide expansion of the NVDRS
program, which now includes all 50 states, the District of Columbia and
Puerto Rico. NVPN also advocate for increased funding to the Centers
for Disease Control and Prevention to support gun violence research at
a level of $50 million for fiscal year 2020.
background
In 2016 alone, more than 64,000 Americans were victims of violent
deaths. These deaths include homicide, suicide, domestic violence,
abuse and neglect, gang violence, and other causes.\1\ In addition, an
average of 123 people \2\ (20 of which are military veterans \3\) take
their own lives each day. Violence-related death and injuries cost the
United States $107 billion in medical care and loss in
productivity.\4,5\ Nearly 1.5 million years of potential life before
age 65 were lost just in 2017 in homicides and suicides.
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\1\ Centers for Disease Control and Prevention . (2015). Injury
Prevention & Control : Division of Violence Prevention. Retrieved April
26, 2018, from http://www.cdc.gov/violenceprevention/nvdrs/.
\2\ Americans for Suicide Prevention. (n.d.). Suicide Statistics.
Retrieved April 26, 2018, from Americans for Suicide Prevention: http:/
/afsp.org/about-suicide/suicide-statistics/.
\3\ Office of Suicide Prevention, Department of Veterans Affairs
(2016, August). Suicide Among Veterans and Other Americans, 2001-2014.
Retrieved April 26, 2018, from Department of Veterans Affairs : https:/
/www.mentalhealth.va.gov/docs/2016suicidedatareport.pdf.
\4\ Centers for Disease Control and Prevention . (2016, June 18).
National Violent Death Reporting System--An Overview . Retrieved 26
April, 2018, from National Violent Death Reporting System: http://
www.cdc.gov/violenceprevention/pdf/nvdrs_overview-a.pdf.
\5\ Centers for Disease Control and Prevention. (2015, December
15). National Violent Death Reporting System--State Profiles. Retrieved
March 7, 2017, from A CDC website: https://www.cdc.gov/
violenceprevention/nvdrs/stateprofiles.html.
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The NVDRS program makes better use of data that are already being
collected by health, law enforcement, and social service agencies. The
NVDRS program, in fact, does not require collection of any new data.
Instead it links together information that, when kept in separate
compartments, is much less valuable as a tool to characterize and
monitor violent deaths. With a clearer picture of why violent deaths
occurs, law enforcement, public health officials, and others can work
together to identify those at risk and target effective preventive
services.
In 2018, NVDRS was finally able to expand to all 50 states,
Washington DC, and Puerto Rico thanks to the $23.5 million
appropriation level. As states begin to enter data into the system, the
U.S. will finally have a truly nationwide program with which to study
circumstances surrounding violent deaths.
nvdrs in action
Opioid deaths are a serious public health issue. Drug overdose
deaths are the leading cause of injury deaths in America.\6\ It is
important to invest in surveillance of opioid addiction to determine
the extent of the problem and implement treatment options and
community-based prevention strategies. NVDRS has already proven to be
an invaluable tool in many states like Alaska, Indiana and Utah that
collect information, through toxicology reports, about prescription-
opioid overdose associated with violent deaths. Combined 2010 NVDRS
data showed that 24 percent of violent deaths tested were positive for
opiates.\7,8\
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\6\ U.S. Department of Health and Human Services . (2016, April 8).
The U.S. Opioid Epidemic. Retrieved April 14, 2016, from U.S.
Department of Health and Human Services: http://www.hhs.gov/opioids/
about-the-epidemic/.
\7\ Centers for Disease Control and Prevention. (2014, January 17).
Surveillance for Violent Deaths--National Violent Death Reporting
System, 16 States, 2010. Retrieved April 14, 2016, from Morbidity and
Mortality Weekly Report--Surveillance Summaries/Volume 63/No.1: http://
www.cdc.gov/mmwr/pdf/ss/ss6301.pdf.
\8\ Alexander GC, F. S. (2015). The Prescription Opioid Epidemic:
An Evidence-Based Approach. Baltimore: Johns Hopkins Bloomberg School
of Public Health. http://www.jhsph.edu/research/centers-and-institutes/
center-for-drug-safety-and-effectiveness/opioid-epidemic-town-hall-
2015/2015-prescription-opioid-epidemic-report.pdf.
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Children are often the most vulnerable as they are dependent on
their caregivers during infancy and early childhood. Sadly, NVDRS data
has shown that young children are at the greatest risk of homicide in
their own homes. Combined NVDRS data from 18 of the states that
currently participate in NVDRS, showed that African American children
aged 4 years and under are more than three times as likely to be
victims of homicide than Caucasian children,\9\ and that homicides of
children aged four and under are most often committed by a parent or
caregiver in the home. The data further notes that household items, or
``weapons of opportunity,'' were most commonly used, suggesting that
poor stress responses may be factors in these deaths. Knowing the
demographics and methods of child homicides can lead to more effective,
targeted prevention programs.
---------------------------------------------------------------------------
\9\ Center for Disease Control and Prevention. (2013). National
Violent Death Reporting System . Retrieved April 14, 2014, from A Web-
based Injury Statistics Query and Reporting System (WISQARS) Database:
https://wisqars.cdc.gov:8443/nvdrs/nvdrsDisplay.jsp.
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Intimate partner violence (IPV) is another issue where NVDRS is
proving its value. While IPV has declined along with other trends in
crime over the past decade, thousands of Americans still fall victim to
it every year. An analysis of intimate partner homicide based on NVDRS
data from 18 states shows that intimate partners represented 87 percent
of intimate partner violence-related homicides victims and corollary
victims (family members, police officers, friends etc.) represented the
remaining 13 percent of victims.\10\
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\10\ Smith, S. G., Fowler, K. A., & and Niolon, P. H. (March 2014).
Intimate Partner Homicide and Corollary Victims in 16 States--NVDRS
2003-2009. American Journal of Public Health, 461-466.
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Despite being in its early stages in several states, NVDRS is
already providing critical information that is helping law enforcement
and public health officials target their resources to those most at
risk of intimate partner violence. For example, NVDRS data shows that
while occurrences are rare, most murder-suicide victims are current or
former intimate partners of the suspect or members of the suspect's
family. In addition, NVDRS data indicate that women are about seven
times more likely than men to be killed by a spouse, ex-spouse, lover,
or former lover, and most of these incidents occurred in the women's
homes.\7\
nvdrs & va suicides
Although it is preventable, every year more than 44,193 Americans
die by suicide and another one million Americans attempt it, costing
more than $44 billion in lost wages and work productivity.\2\ Because
NVDRS includes information on all violent deaths--including deaths by
suicide--the program can be used to develop effective suicide
prevention plans at the community, state, and national levels.
A 2015 study showed that 19.9 percent of all veteran deaths between
2001 and 2007 were suicide, with male veterans three times as likely as
female veterans to commit suicide.\11\ The central collection of such
data can be of tremendous value for organizations such as the
Department of Veterans Affairs that are working to improve their
surveillance of suicides. The types of data collected by NVDRS
including gender, blood alcohol content, mental health issues and
physical health issues can help prevention programs better identify and
treat at-risk individuals.
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\11\ Kang, H., Bullman, T. A., & Smolenski, D. J. (2015). Suicide
risk among 1.3 million veterans who were on active duty during the Iraq
and Afghanistan wars. Annals of Epidemiology, 96-100.
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In addition to veteran suicides, NVDRS data has been crucial in
many states like Oregon, Utah, New Jersey and North Carolina in
understanding the circumstances surrounding elder suicide. This has
allowed the states to collaborate locally and implement programs that
target those populations at greatest risk.
federal role needed
NVDRS is a relatively low-cost program that yields high-quality
results. While state-specific information provides enormous value to
local public health and law enforcement officials, data from all 50
states, the U.S. territories and the District of Columbia must be
obtained to complete the national picture. Aggregating this additional
data will allow us to analyze national trends and also more quickly and
accurately determine what factors can lead to violent death so that we
can devise and disseminate strategies to address those factors.
strengthening and expanding nvdrs in fiscal year 2019
We cannot reduce funding for a program that just reached its
capacity to start operations in all 50 states. Congress needs to fund
NVDRS at the level of $25.5 million.
We thank you for the opportunity to submit this statement for the
record. The investment in NVDRS has already begun to pay off, as NVDRS-
funded states are adopting effective violence prevention programs. We
believe that national implementation of NVDRS is a wise public health
investment that will assist state and national efforts to prevent
deaths from domestic violence, veteran suicide, teen suicide, gang
violence and other violence that affect communities around the country.
We look forward to working with you to complete the nationwide
expansion of NVDRS by securing an fiscal year 2021 appropriation of
$25.5 million. In addition, we hope that the subcommittee delegates $50
million to the CDC for gun violence research to make use of the data
collected by this important program.
[This statement was submitted Kate McFadyen, Chair, National
Violence
Prevention Network.]
______
Prepared Statement of the NEC Society
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, as you work to develop the fiscal year 2021 Labor-
Health and Human Services Appropriations bill, thank you for
considering the views of the community of physicians, researchers,
patients, and caregivers affected by necrotizing enterocolitis (NEC).
about the nec society
The NEC Society is 501(c)(3) non-profit, patient-led organization
that collaborates with the world's leading scientists and clinicians in
the NEC community. Necrotizing enterocolitis (NEC) is a devastating
intestinal disease that affects vulnerable infants in their first weeks
and months of life. NEC causes an inflammatory process that can lead to
intestinal tissue damage and death. Despite significant advances in
neonatal care, the morbidity and mortality rates associated with this
disease have not significantly improved in decades. In the U.S. alone,
thousands of babies develop NEC each year and hundreds of babies die
from this complex intestinal condition. Once diagnosed, many babies
only live for a few hours or days, and survivors can have lifelong
neurological and nutritional complications. In addition to the stagnant
morbidity and mortality rates, the prevention and treatment options for
NEC are inadequate. The NEC Society is dedicated to building a world
without necrotizing enterocolitis by accelerating research, raising
awareness, and uniting diverse stakeholders. The NEC Society
intentionally elevates the voices of women, underrepresented
communities, and individuals with unique experiences, as they bring
critical insight and exponentially advance the NEC Society's vision of
a world without NEC.
fiscal year 2021 appropriations recommendations
The NEC Society joins the broader medical research community in
thanking Congress for continuing to support the National Institutes of
Health with sustainable growth. Please continue to advance scientific
progress through proportional funding increases by providing at least a
$3 billion funding increase for fiscal year 2021 to bring NIH's budget
up to $44.7 billion.
In this regard, please provide proportional funding increases for
all NIH Institutes and Centers, including, but not limited to the
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD) and the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK).
The NEC Society also joins the public health community in asking
Congress to provide the Centers for Disease Control and Prevention
(CDC) with $8.3 billion through fiscal year 2021 and to establish
funding to increase awareness, education of chronic diseases such as
necrotizing enterocolitis. The CDC's National Center for Chronic
Disease Prevention and Public Health Promotion has programs dedicated
to improving surveillance, physician education, and public awareness
for several chronic diseases. We encourage the Subcommittee to
establish a $5,000,000 merit-based programmatic activity in this area
that will allow CDC to work with stakeholder organizations to expand
important initiatives on chronic diseases such as necrotizing
enterocolitis. This program seeks to provide collaborative
opportunities for chronic disease communities that lack dedicated
funding from ongoing CDC activities. Such a mechanism allows public
health experts at the CDC to review project proposals on an annual
basis and direct resources to high impact efforts in a flexible
fashion.
patient perspective
Thank you for the opportunity to submit this testimony before you
today. The NEC Society looks forward to working with you all to advance
medical research and public health activities that will improve patient
outcomes for the members of our community suffering from necrotizing
enterocolitis.
I founded the NEC Society a year after my 11-month-old son, Micah,
died from complications of NEC. Over the last 5 years, the NEC Society
has become the world's leading organization working on this devastating
neonatal disease. Through this work, I have met remarkable families,
clinicians, and scientists from around the globe who share my belief
that we can prevent necrotizing enterocolitis. NEC is not an inevitable
complication of premature birth; we can and must do more for our most
vulnerable infants. There is an urgent need for prioritized research
funding so we can identify the most effective path forward as we work
to save babies just like my son Micah.
[This statement was submitted by Jennifer Canvasser, MSW, Founder &
Director, NEC Society.]
______
Prepared Statement of the NephCure Kidney International
summary of recommendations for fiscal year 2021
_______________________________________________________________________
--Provide $44.7 billion for the National Institutes of Health (NIH)
--Provide a proportional increase for the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute on Minority Health and Health Disparities
(NIMHD) and support the expansion of the FSGS/NS research
portfolio at NIDDK and NIMHD by funding more research into
primary glomerular disease.
_______________________________________________________________________
Chairman Blunt and Ranking Member Murray, thank you for the
opportunity to present the views of NephCure Kidney International
regarding research on idiopathic focal segmental glomerulosclerosis
(FSGS) and primary nephrotic syndrome (NS). NephCure is the only non-
profit organization exclusively devoted to fighting FSGS and the NS
disease group. Driven by a panel of respected medical experts and a
dedicated band of patients and families, NephCure works tirelessly to
support kidney disease research and awareness.
NS is a collection of signs and symptoms caused by diseases that
attack the kidney's filtering system. These diseases include FSGS,
Minimal Change Disease and Membranous Nephropathy. When affected, the
kidney filters leak protein from the blood into the urine and often
cause kidney failure, which requires dialysis or kidney
transplantation. According to a Harvard University report, 73,000
people in the United States have lost their kidneys as a result of
FSGS. Unfortunately, the causes of FSGS and other filter diseases are
poorly understood.
FSGS is the second leading cause of NS and is especially difficult
to treat. There is no known cure for FSGS and current treatments are
difficult for patients to endure. These treatments include the use of
steroids and other dangerous substances which lower the immune system
and contribute to severe bacterial infections, high blood pressure and
other problems in patients, particularly child patients. In addition,
children with NS often experience growth retardation and heart disease.
Finally, NS that is caused by FSGS, MCD or MN is idiopathic and can
often reoccur, even after a kidney transplant.
FSGS disproportionately affects minority populations and is five
times more prevalent in the African American community. In a
groundbreaking study funded by NIH, researchers found that FSGS is
associated with two APOL1 gene variants. These variants developed as an
evolutionary response to African sleeping sickness and are common in
the African American patient population with FSGS/NS. Researchers
continue to study the pathogenesis of these variants.
FSGS has a large social impact in the United States. FSGS leads to
end-stage renal disease (ESRD) which is one of the most costly chronic
diseases to manage. In 2008, the Medicare program alone spent $26.8
billion, 7.9 percent of its entire budget, on ESRD. In 2005, FSGS
accounted for 12 percent of ESRD cases in the U.S., at an annual cost
of $3 billion. It is estimated that there are currently approximately
20,000 Americans living with ESRD due to FSGS.
Research on FSGS could achieve tremendous savings in Federal
healthcare costs and reduce health status disparities.
encourage fsgs/ns research at nih
There is no known cause or cure for FSGS and scientists tell us
that much more research needs to be done on the basic science behind
FSGS/NS. More research could lead to fewer patients undergoing ESRD and
tremendous savings in healthcare costs in the United States. NephCure
works closely with NIH and has partnered with NIH on two large studies
that will advance the pace of clinical research and support precision
medicine. These studies are the Nephrotic Syndrome Study Network and
the Cure Glomerulonephropathy Network.
With collaboration from other Institutes and Centers, ORDR
established the Rare Disease Clinical Research Network. This network
provided an opportunity for NephCure Kidney International, the
University of Michigan, and other university research health centers to
come together to form the Nephrotic Syndrome Study Network (NEPTUNE).
Now in its second 5-year funding cycle, NEPTUNE has recruited over 450
NS research participants, and has supported pilot and ancillary studies
utilizing the NEPTUNE data resources. NephCure urges the subcommittee
to continue its support for RDCRN and NEPTUNE, which has tremendous
potential to facilitate advancements in NS and FSGS research.
NIDDK houses the Cure Glomerulonephropathy Network (Cure GN), a
multicenter 5-year cohort study of glomerular disease patients.
Participants will be followed longitudinally to better understand the
causes of disease, response to therapy, and disease progression, with
the ultimate objective to cure glomerulonephropathy. NephCure
recommends that the subcommittee continues to support the work that the
Cure Glomeruloneuropathy [CureGN] initiative has accomplished towards
further understanding rare forms of kidney diseases. It is estimated
that annually there are 20 new cases of ESRD per million African
Americans due to FSGS, and 5 new cases per million Caucasians. This
disparity is largely due to variants of the APOL1 gene. Unfortunately,
the incidence of FSGS is rising and there are no known strategies to
prevent or treat kidney disease in individuals with the APOL1 genotype.
NIMHD began supporting research on the APOL1 gene in fiscal year 2013.
Due to the disproportionate burden of FSGS on minority populations, it
remains appropriate for NIMHD to continue to advance this research.
NephCure asks the subcommittee to recognize the work that NIMHD and
NIDDK are doing to address the connection between the APOL1 gene and
the onset of FSGS and encourage NIMHD to work with community
stakeholders to identify areas of collaboration.
As a result of the important research done through NIH we have been
able to work with FDA to establish new endpoints for clinical trial
leading to more trials than ever before. This has led to the creation
of the Kidney Health Gateway Clinical that will connect patients with
breakthrough clinical trials and access top Nephrotic Syndrome doctors
all in one place. These crucial trials will hopefully lead to more
treatment options for our patients.
Patient Perspective
Meet 13-year-old Macy! She was diagnosed with Nephrotic Syndrome
and later FSGS when she was three. Her 10-year journey with kidney
disease has been long and hard. Macy did not respond to treatments for
her kidney disease and within 2 years of diagnosis, her native kidneys
were damaged beyond repair and she was in kidney failure and on
dialysis. At the age of five, she received a living donor kidney
transplant, but her disease, FSGS came back and attacked her new to her
kidney. It took a full year of aggressive treatments to get Macy's FSGS
into remission post-transplant. For the past 10 years, Macy has taken
18 to 26 medications a day. Those medications and her kidney disease
have led to multiple co-morbidities. She is currently followed by 7
specialties, has endured 30+ surgeries & been hospitalized over 100
times. Macy participates in the Beads of Courage program in which she
earns different beads for each procedure, appointment etc. The strand
of beads you see in this photo are just the beads she earned in 2018!
Those black beads are for pokes (lab draws, IV's, Shots) and Macy
earned over 400 last year. As you can see kidney disease is tough!
Although Macy continues to struggle with kidney disease and will need
another transplant sooner than later, she doesn't let that stop her
from living life! Macy loves dancing and musical theater, art, and
hanging out with her dog Bentley!
[This statement was submitted by Irving Smokler, PH.D., President
and Founder, NephCure Kidney International.]
______
Prepared Statement of the Neurofibromatosis Network
Thank you for the opportunity to submit testimony to the
Subcommittee on the importance of funding for the National Institutes
of Health (NIH), and specifically for continued research on
Neurofibromatosis (NF), a genetic disorder closely linked to many
common diseases widespread among the American population. My name is
Kim Bischoff and I am the Executive Director of the Neurofibromatosis
(NF) Network, a national organization of NF advocacy groups. We
respectfully request that you include the following report language on
NF research at the National Institutes of Health within the Office of
the Director account in the fiscal year 2021 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
Institutes, including NCI, NINDS, NIDCD, NHLBI, NICHD, NIMH, NCATS, and
NEI. Children and adults with NF are at elevated risk for the
development of many forms of cancer, as well as deafness, blindness,
developmental delays and autism; the Committee encourages NCI to
increase its NF research portfolio in fundamental laboratory science,
patient-directed research, and clinical trials focused on NF-associated
benign and malignant cancers. The Committee also encourages NCI to
support clinical and preclinical trials consortia. Because NF can cause
blindness, pain, and hearing loss, the Committee urges NINDS to
continue to aggressively fund fundamental basic science research on NF
relevant to restoring normal nerve function. Based on emerging findings
from numerous researchers worldwide demonstrating that children with NF
are at significant risk for autism, learning disabilities, motor
delays, and attention deficits, the Committee encourages NINDS, NIMH,
and NICHD to increase their investments in laboratory-based and
patient-directed research investigations in these areas. Since NF2
accounts for approximately 5 percent of genetic forms of deafness, the
Committee encourages NIDCD to expand its investment in NF2-related
research. NFl can cause vision loss due to optic gliomas. The Committee
encourages NEI to expand its investment in NF1-focused research on
optic gliomas and vision restoration.
On behalf of the Neurofibromatosis (NF) Network, I speak on behalf
of the over 100,000 Americans who suffer from NF as well as the
millions of Americans who suffer from diseases and conditions linked to
NF such as cancer, brain tumors, heart disease, memory loss, and
learning disabilities. Thanks in large part to this Subcommittee's
strong support, scientists have made enormous progress since the
discovery of the NF1 gene in 1990 resulting in clinical trials now
being undertaken at NIH with broad implications for the general
population.
NF is a genetic disorder involving the uncontrolled growth of
tumors along the nervous system which can result in terrible
disfigurement, deformity, deafness, pain, blindness, brain tumors,
cancer, and even death. In addition, approximately one-half of children
with NF suffer from learning disabilities. NF is the most common
neurological disorder caused by a single gene and is more common than
Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's disease
and Tay Sachs combined. There are three types of NF: NF1, which is more
common, NF2, which initially involves tumors causing deafness and
balance problems, and Schwannomatosis, the hallmark of which is severe
pain. While not all NF patients suffer from the most severe symptoms,
all NF patients and their families live with the uncertainty of not
knowing whether they will be seriously affected because NF is a highly
variable and progressive disease.
Researchers have determined that NF is closely linked to heart
disease, learning disabilities, memory loss, cancer, brain tumors, and
other disorders including deafness, blindness and orthopedic disorders,
primarily because NF regulates important pathways common to these
disorders such as the RAS, cAMP and PAK pathways. Research on NF
therefore stands to benefit millions of Americans.
Learning Disabilities/Behavioral and Brain Function
Learning disabilities affect one-half of people with NF1. They
range from mild to severe and can impact the quality of life for those
with NF1. In recent years, research has revealed common threads between
NF1 learning disabilities, autism, and other related disabilities. New
drug interventions for learning disabilities are being developed and
will be beneficial to the general population. Research being done in
this area includes working to identify drugs that target Cyclic AMP, so
they can be paired with existing drugs targeting RAS. Identification of
new drug combinations may benefit people with multiple types of
learning disabilities.
Bone Repair
At least a quarter of children with NF1 have abnormal bone growth
in any part of the skeleton. In the legs, the long bones are weak,
prone to fracture and unable to heal properly; this can require
amputation at a young age. Adults with NF1 also have low bone mineral
density, placing them at risk of skeletal weakness and injury. Research
currently being done to understand bone biology and repair will pave
the way for new strategies to enhancing bone health and facilitating
repair.
Pain Management
Severe pain is a central feature of Schwannomatosis, and
significantly impacts quality of life. Understanding what causes pain,
and how it could be treated, has been a fast-moving area of NF research
over the past few years. Pain management is a challenging area of
research and new approaches are highly sought after.
Nerve Regeneration
NF often requires surgical removal of nerve tumors, which can lead
to nerve paralysis and loss of function. Understanding the changes that
occur in a nerve after surgery, and how it might be regenerated and
functionally restored, will have significant quality of life value for
affected individuals. Light-based therapy is being tested to dissect
nerves in surgery of tumor removal. If successful it could have
applications for treating nerve damage and scarring after injury,
thereby aiding repair and functional restoration.
Cancer
NF can cause a variety of tumors to grow, which includes tumors in
the brain, spinal cord and nerves. NF affects the RAS pathway which is
implicated in 70 percent of all human cancers. Some of these tumor
types are benign and some are malignant, hard to treat and often fatal.
Previous studies have found a high incidence of intracranial
glioblastomas and malignant peripheral nerve sheath tumors (MPNSTs), as
well as a six-fold incidents of breast cancer compared to the general
population. One of these tumor types, malignant peripheral nerve sheath
tumor (MPNST), is a very aggressive, hard to treat and often fatal
cancer. MPNSTs are fast growing, and because the cells change as the
tumor grows, they often become resistant to individual drugs. Clinical
trials are underway to identify a drug treatment that can be widely
used in MPNSTs and other hard-to-treat tumors.
The enormous promise of NF research, and its potential to benefit
over 175 million Americans who suffer from diseases and conditions
linked to NF, has gained increased recognition from Congress and the
NIH. This is evidenced by the fact that numerous institutes are
currently supporting NF research, and NIH's total NF research portfolio
has increased from $3 million in fiscal year 1990 to an estimated $32
million in fiscal year 2019. Given the potential offered by NF research
for progress against a range of diseases, we are hopeful that the NIH
will continue to build on the successes of this program by funding this
promising research and thereby continuing the enormous return on the
taxpayers' investment.
We appreciate the Subcommittee's strong support for the National
Institutes of Health and will continue to work with you to ensure that
opportunities for major advances in NF research at the NIH are
aggressively pursued. Thank you.
[This statement was submitted by Kim Bischoff, Executive Director,
Neurofibromatosis Network.]
______
Prepared Statement of the New Mexico Southern Colorado Community Health
Representative Association
I write this testimony for the third year in a row on behalf of the
New Mexico Southern Colorado Community Health Representatives
Association (NMSCCHRA). The CHRs have been the original tribally
contracted and administered local tribal health program for 50 years.
The CHRs are the 'Boots on the Ground' tribal health providers when no
other health services are available in Native American communities. The
funding for this valuable community-based health program is funded from
the Indian Health Service under the budget cited above. The Association
had been advocating and informing the U.S. Congressional committees on
the need to maintain and continue the CHR program as well as the Health
Education line items for the past 3 years. It is a service staffed by
local tribal community members providing tribal specific and customized
services. The elimination of such a service will leave some tribes with
No health providers in rural areas. We encourage your support of the
overall IHS budget and 2-3 percent yearly increases since 2008,
however, we realize there is still a huge need for public health
infrastructure in Native lands.
The President's budget request proposes to combine funding for CHR
($ 62.8 million in fiscal year 2020), Health Education ($20.56 million
in fiscal year 2020) and nationalization of the Community Health Aide
Program ($5 million in 2020) into a new 'Community Health' line item
funded at $44.1 million. By combining all three-line items to one would
reduce the yearly funding by $44 million for all three combined. All
three-line items should remain as stated in the Indian Health Care
Improvement Act which authorizes the IHS budget and has been
institutionalized as line items. All 3-line items should be increased
as has been recommended by the Tribal Leaders IHS budget formulation
workgroup for the past few years. The workgroup put the CHR program as
priority in Native lands and the IHS budget should be funded based on
need to $9.1 billion. The Association has gone on record stating the
three-line items are Public Health in concept and service
administration, have historical clinical significance in purpose and
evidence practice in their respective communities. Education and CHRs
are the first steps in public health practice and protocol in Indian
Country. You are now seeing the confusion and poor public health
practice occurring if such programs are not funded adequately in the
coronavirus pandemic.
Congress has a constitutional obligation to mandatory fund the
Indian Health Service budget and for IHS not remain as a discretionary
budget. There is nothing discretionary about healthcare when lives are
at stake. The CHR Association is aware of the many Federal service
providers supporting the CHR program. As Federal employees they took an
oath to abide by the orders of the President and fear of consequences
is evident by this Administration of any contraposing professional
opinions. We have testified on CHR patient information not being
accepted by in the RPMS system and denying pertinent patient
information not being put in the patients EHR. We continue to support
the $25 million EHR line item request in the hopes of mandating CHR
workload inclusion in the $8 million in the 2020 spending package. The
IT systems should not compromise patient care and billing requirements.
The Association supports an indefinite appropriation and separate
line item for the section 105(l) facility leases. This has forced IHS
to take from services program accounts to pay for these leases. This
also forces the budget to take from CHR, Health Ed and other line items
from direct service tribes to pay other contracting/compacting tribes
on leases at the expense of locally controlled public health services.
The CHRs have been the translators, advocates, educators in the
Coronavirus public health efforts especially at the local community
levels. We have CHRs who can translate in our native languages,
understand the cultural impacts of health practices and maintain trust
and understanding by community members. The CHRs will represent tribes
and serve as liaisons with other Federal and state partners especially
in rural and reservation areas with Coronavirus as well as other health
service systems administered in our communities.
We appreciate your continued support for Advance Appropriations to
keep our healthcare facilities and programs open during government
shutdowns. The IHS funded programs are direct service providers like
the VA and should be funded with no regard to political grandstanding.
Thank you very much for recognizing the CHR program and your efforts in
protecting and promoting Native American healthcare.
Respectfully,
New Mexico and Southern Colorado Community Health Representative
Association Executive Board.
______
Prepared Statement of the Nez Perce Tribe
Honorable Chairman and members of the Committee, the Nez Perce
Tribe (Tribe) would like to thank you for the opportunity to provide
recommendations to the Committee as it evaluates and prioritizes fiscal
year 2021 appropriations for programs within the Department of Labor,
Department of Health and Human Services, and the Department of
Education.
As with any government, the Tribe performs a wide array of work and
provides a multitude of services to its tribal membership as well as
the community at large. The Tribe has been a leader in education,
workforce development, and social services in this area and places a
high priority on these programs and the services they provide to
residents on the Nez Perce Reservation (Reservation). The Tribe relies
on specific Federal programs and grants to fund this important work
and, therefore, provides the following fiscal year 2021 appropriations
recommendations for these agencies.
The Tribe recommends $20 billion be provided for Title I, Part A of
the Every Student Succeeds Act Local Education Agency Grants. Rural
public schools on the Reservation use this funding to address the
obstacles low-income students face meeting academic standards.
The Tribe recommends $6.9 million be allocated for the State-Tribal
Education Partnership Program (STEP) authorized in Title VI, Part A,
Subpart 3 of the Every Student Succeeds Act. The Tribe is one of the
participants in the STEP which provides an avenue for states and tribes
to work together to improve and enhance education delivery and parent
involvement in areas with high populations of tribal students. The STEP
has been a success for the Tribe and continued funding is needed to
keep the program active. The Tribe supports the Administration's
proposed new bill language that would allow the Secretary of Education
to make State-Tribal Education Partnership and Native language
immersion grants for up to 5 years, instead of the current 3 years.
The Tribe recommends that at least the same amount be appropriated
in fiscal year 2021 as was allocated in fiscal year 2020 for Impact
Aid, $1.486 billion. Impact Aid compensates school districts for
Federal ownership of lands within a district's tax base. Over 14,000
students and 12 school districts rely heavily on Impact Aid dollars to
provide education services. For example, Impact Aid accounts for 31
percent of the budget for the Lapwai School District, an Idaho public
school here on the Reservation. Without Impact Aid dollars, the school
will be forced to make significant reductions in staffing and resources
for students.
The Tribe recommends that Congress appropriate $10 million in
fiscal year 2021 for Tribal Education Departments in the Department of
Education, which would complement the $2.5 million appropriated in
fiscal year 2020 to the Bureau of Indian Affairs for these programs.
This funding provides for the development and implementation of
education programs operated by tribes to assist in the delivery of
education services within a reservation.
The Tribe recommends the $11.36 billion be provided for Head Start
in fiscal year 2021. Indian Head Start needs to be fully funded as
these programs play a vital role in school readiness, child
development, and early education for over 24,000 Native children. The
Nez Perce Tribe Early Childhood Program provides services to 190
children. The majority of our funding goes to salaries and benefits
while infrastructure needs are not addressed. We need our facility in
Lapwai and our facility in Kamiah to be renovated or we need new
construction so an increase in this funding is essential. The Indian
Head Start programs address the whole child from a health, cultural,
and education perspective. These programs operate on slim budgets but
provide extraordinary returns in ensuring children are as prepared as
possible to begin their education journey.
The Tribe recommends the fiscal year 2020 funding levels be
maintained in fiscal year 2021 for all Tribal Behavioral Health Grants
under the Substance Abuse and Mental Health Services Administration.
The grants address a wide range of mental health and substance abuse
issues such as youth suicide, opioid addiction, and methamphetamine
addiction that are prevalent on the Reservation and threaten to
overwhelm the Tribe's Social Services Department and health clinic. In
addition, the competitive grants and tribal set-asides provided for
promoting safe and stable families, child welfare services, and child
abuse prevention should be maintained at fiscal year 2020 levels for
fiscal year 2021 as well.
The Tribe appreciates the fiscal year 2020 funding of $50 million
to address the opioid crisis in Indian Country. However, this funding
pales in comparison to the funding that has been provided to states on
this issue. The Tribe recommends funding to address opioid use and its
effects on communities be increased and also made available in forms
other than grants. Indian Country suffers from opioid addiction at a
higher rate than most communities and all communities need access to
monies to help address this problem. Funding in the form of grants
places a high administrative burden on tribes and forces tribes to
compete against each other unnecessarily. Congresswoman McCollum has
also voiced concern over such methodologies for tribal funding.
The Tribe opposes the Administration's proposed elimination of
fiscal year 2021 funding for the Department of Labor's Division of
Indian and Native American Programs, and recommends $60.5 million be
appropriated, an increase of $5.5 million over fiscal year 2020 enacted
level funding. The Workforce Innovation and Opportunity Act, Section
166 Indian and Native American Programs serve the training and
employment needs of tribes through programs such as the Indian
Employment, Training, and Related Services Demonstration Act of 1992.
The Tribe has used this funding to provide important programs that have
helped develop the workforce and economy on the Reservation. This
program has been very successful but will not continue without funding.
Within the Temporary Assistance for Needy Families program,
administered by the Administration for Children and Families, the Tribe
supports the Administration's fiscal year 2021 budget request that
would increase funding for the Healthy Marriage Promotion and
Responsible Fatherhood Grants program from $148.8 million to $150
million. The Tribe strongly supports the Administration's proposed 5-
year reauthorization of the Healthy Marriage and Responsible Fatherhood
program. Over the last several years, the Tribe has been able to use
program funding to strengthen parenting, work and relationship skills
amongst the youth on the Reservation which is vital to for the growth
and preservation of Nez Perce culture.
Thank you for your consideration of the Tribe's requests with
respect to these fiscal year 2021 appropriations.
______
Prepared Statement of the Northwest Portland Area Indian Health Board
Chairman Blunt and Ranking Member Murray, and Members of the
Subcommittee: My name is Nickolaus Lewis, and I serve as a council
member of the Lummi Indian Business Council, Chair of the Northwest
Portland Area Indian Health Board (NPAIHB or Board), Representative on
the Substance Abuse Mental Health Services Administration (SAMHSA)
Technical Tribal Advisory Committee, and Portland Area Representative
on the Centers for Medicare and Medicaid Services (CMS) Tribal
Technical Advisory Group. I thank the Subcommittee for the opportunity
to provide testimony on behalf of NPAIHB on the fiscal year 2021
Department of Health and Human Services (HHS) budget.
NPAIHB is a tribal organization, established in 1972, under the
Indian Self-Determination and Education Assistance Act (ISDEAA), Public
Law 93-638 that advocates on behalf of the 43 federally-recognized
Indian Tribes in Idaho, Oregon, and Washington on specific healthcare
issues. The Board's mission is to eliminate health disparities and
improve the quality of life of American Indians and Alaska Natives (AI/
AN) by supporting Northwest Tribes (also known as Portland Area Tribes)
in the delivery of culturally appropriate, high quality healthcare.
For fiscal year 2021, NPAIHB makes these specific requests to the
Subcommittee for the HHS budget:
hhs and its agencies
COVID-19.--Although coronavirus (COVID-19) is not the same as the
influenza virus, it is transmitted in a very similar way. The last
pandemic of influenza lasted around 2 years and we can expect a similar
course of disease for COVID-19 unless we are able to deliver an
effective vaccine and or antiviral treatment sooner. This Subcommittee
must consider the importance of fiscal year 2021 funding for tribes to
mitigate the effects of and eradicate COVID-19 in their communities for
at least a 2-year period. Without this support, tribes will be forced
to make impossible decisions. The economic crisis in tribal
communities, due to the closure of tribal businesses for 2 months, has
resulted in some tribes carefully opening their businesses at limited
capacity with much of the nation doing the same. The difference between
tribal businesses and other for profit businesses is that tribal
business revenues are reallocated to fund critical health and social
service programs. We anticipate that the reopening of economies
nationwide will result in another wave of COVID-19 infections, with
more AI/AN people being impacted. The AI/AN population faces increased
risk for COVID-19 infections, and the infection is impacting a younger
subset of the AI/AN population, which is different than the general
population. For fiscal year 2021, we respectfully request that this
Subcommittee honor treaty and trust obligations to tribes by providing
comprehensive funding to address COVID-19 medical and behavioral health
needs of AI/AN people in addition to annual core funding needs. NPAIHB
specifically recommends COVID-19 tribal set-asides across all HHS
agencies that are equitable to funding distributions to states. In
addition, funding should be made available directly to IHS, tribes or
tribal organizations (not through states) or transferred entirely to
IHS through interagency transfer agreements for distribution to tribes
through IHS funding distribution methodologies. Any grants should be
streamlined as to application and reporting processes.
In addition, NPAIHB recommends that this Subcommittee fund a Tribal
Public Health Clearinghouse with public health emergency supplies.
Tribes as sovereign nations should not have to go through states to
access the Strategic National Stockpile. The Clearinghouse should be
accessible to tribes and tribal organizations/entities and be stocked
with medical supplies, testing kits and supplies, including a full
range of personal protective equipment (PPE) (N95 masks, surgical
masks, gowns, gloves, etc.). In a NPAIHB survey conducted over the past
6 weeks with Portland Area Tribes, at least one tribe still does not
have testing kits and 17 percent report low supplies of PPE- this is
unacceptable. NPAIHB also recommends that any treatment or vaccinations
that may become available in fiscal year 2021 be provided directly to
all IHS and tribal facilities directly for administration at their
clinics and also be made available through the Tribal Public Health
Clearinghouse.
substance abuse and mental health services administration
COVID-19 Funding.--The impact of COVID-19 on our people as to their
mental health is of great concern and the long-term impacts are still
unknown. As a result of COVID-19, in just 2 months, there have been
increased impacts on mental health, suicidal ideation, depression, and
substance use. We anticipate there will be many unexpected losses
within our tribal communities from COVID-19 so NPAIHB generally
requests increases to all SAMHSA tribal-specific programs and the
development of new funding sources to address the aftermath of COVID-
19.
Tribal-Specific Programs.--For fiscal year 2021, we request
increases to SAMHSA tribal programs as follows: fund Tribal Behavioral
Health Grant program at $50 million for fiscal year 2021 with $25
million for mental health and $25 million for substance abuse (funded
in fiscal year 2020 at $40 million--$20 for mental health and $20
million for substance abuse); fund Garrett Lee Smith Suicide Prevention
Tribal Set Aside at $3.5 million (funded in fiscal year 2020 at $2.9
million); fund Zero Prevention Initiative at $3 million (funded in
fiscal year 2020 at $2.2 million); and fund Tribes under the National
Child Traumatic Stress Initiative (NCTSI) at $1.5 million ($1 million
set aside in fiscal year 2020).
Youth Behavioral Health Programs.--There are not enough youth-
specific funding opportunities to prevent or comprehensively address
youth services needed for mental health and substance use issues.
Specifically, our tribes have prioritized the need for Youth
Residential Treatment Centers that provide aftercare and transitional
living for both substance use and mental health. While there are two
facilities in the Portland Area, the Healing Lodge of the Seven Nations
in Spokane and NARA Northwest in Portland, more are needed with
expanded services. For fiscal year 2022, we request that SAMHSA consult
with tribes on developing youth specific programs and constructing new
facilities and funding sources that comprehensively address the needs
of our youth.
Opioid Crisis and Funding..--While NPAIHB appreciates the $50
million set-aside for tribes and tribal organizations for Tribal Opioid
Response (TOR) funding, it is not enough funding. Tribes are innovative
and have developed opioid treatment models that could be replicated
with flexible funding. For example, in our area, the Swinomish Tribal
Community has established Didgwalic Wellness Center (http://
www.didgwalic.com/). The clinic includes wrap around services and a
full continuum of care for patients- MAT, counseling, primary care and
oral health services. Other tribes in the Northwest are interested in
establishing similar programs but are in need of funding to replicate
this model.
We recommend that TOR funding be increased to $100 million in
fiscal year 2021 (funded at $50 million in fiscal year 2020), and that
funding continue to be non-competitive, provided directly to tribes,
and that the funding term be increased from 2 years to 5 years. We
further recommend an increased tribal set-aside for MAT funding at $15
million (funded at $10 million in fiscal year 2020).
Tribal Epidemiology Centers. The NPAIHB Northwest Tribal
Epidemiology Center (NWTEC) has played a critical role in ensuring that
Portland Area Tribes receive their share of the TOR funding. For the
funding cycle of fiscal year 2018-fiscal year 2019, the NWTEC applied
for and received funding for 28 tribes in our area for fiscal year 2018
and fiscal year 2019 and just applied for another 2-year cycle of
funding. TECs are not allowed to directly apply for TOR funding for
staffing, trainings or to provide technical assistance to subgrantees.
In fiscal year 2021, NPAIHB requests a $2.5 million set-aside for
Tribal Epidemiology Centers to administer TOR consortium grants and to
conduct trainings (e.g., data waiver trainings and skills building
sessions for SUD-providers) and to provide technical assistance to
subgrantees.
Behavioral Health Workforce Development. The Community Health Aide
Program (CHAP) has been a successful program in Alaska and includes
training and certification for behavioral health aides (BHAs). BHAs are
selected by and for the community they serve which ensures culturally
appropriate services. Lack of behavioral health providers is a
significant issue and need in the Portland Area. Our area has been at
the forefront of CHAP expansion in the lower 48. In partnership with
Northwest Indian College and area tribes, NPAIHB has begun the process
of creating and implementing education programs for Behavioral Health
Aides (BHAs) in the Portland Area. We recommend that SAMHSA partner
with IHS and tribes to develop the BHA work force and allocate $15
million for the development of BHA programs in fiscal year 2022.
office of the secretary
National HIV Elimination Strategy and Minority AIDS Initiative
(MAI). On February 5, 2019, President Trump in his State of the Union
announced his initiative on Ending the HIV Epidemic in the United
States within 10 years. However, no funding was provided to IHS or
tribes under the Consolidated Appropriations Act of 2020 for Ending the
HIV Epidemic--despite the fact that other programs were funded. Since
IHS is under the Interior, Environment and Related Agencies
Subcommittee, not LHE, IHS was left out of funding. This must change in
fiscal year 2021. We recommend $27 million in Ending the HIV Epidemic
funding be transferred to IHS via the Office of Infectious Disease and
HIV/AIDS Policy, who has worked with IHS for over 10 years to award
Minority HIV/AIDS Funds via interdepartmental delegations of authority
(IDDA). Similarly, the MAI allocates resources to CDC, HRSA, NIH,
SAMHSA, and OMH. IHS does not receive direct MAI dollars. Excluding IHS
from MAI dollars has far reaching and harmful impacts on IHS's ability
to provide HIV/AIDS and HCV prevention, treatment, and outreach
efforts. NPAIHB recommends that this Subcommittee create a fund
mechanism for IHS to receive MAI dollars in the amount of $10 million
for distribution via the Office of Infectious Disease and HIV/AIDS
Policy.
Minority HIV/AIDS Fund. The Minority HIV/AIDS Fund is the only HHS
funding source that includes funding to IHS for HIV and hepatitis C
(HCV) prevention, treatment, outreach and education. For fiscal year
2021, we recommend at least $60 million for Minority HIV/AIDS Fund with
at least $10 million to IHS.
centers for disease control and prevention (cdc)
COVID-19 Funding.--Surveillance, contact tracing and public health
nurses, will be key to preventing the spread of COVID-19 in tribal
communities. For fiscal year 2021, we recommend that $250 million be
allocated to tribes for these important activities/roles during the
pandemic.
Fund Good Health and Wellness in Indian Country. The Good Health
and Wellness in Indian Country (GHWIC) initiative supports efforts by
American Indian and Alaska Native communities to implement holistic and
culturally adapted approaches to reduce tobacco use, improve physical
activity and nutrition, and increase health literacy. With COVID-19,
tribal communities are more focused than ever on the importance of
traditional foods and the nutritional and healing qualities of these
food in a time of crisis. Additional funding is needed for GHWIC to
address food access issues, food insecurity, and support traditional
food and local food system initiatives during COVID-19. NPAIHB
recommends that Good Health and Wellness in Indian Country program be
funded at $32 million in fiscal year 2021.
Public Health Infrastructure & Environmental Impacts. While many
tribal health programs have some public health infrastructure, it is
often underfunded and may lack the capacity to respond effectively to
health, natural, and manmade disasters. The COVID-19 pandemic provides
an example of how many tribes across Indian country were lacking the
basic public health infrastructure to respond to this unexpected event
and public health emergency. In fiscal year 2021, we request that CDC
provide direct funding for tribal public health infrastructure in the
amount of $1 billion by authorizing a Tribal Public Health Emergency
Fund established through the Secretary of HHS that tribes can access
directly for tribally-declared public health emergencies (analogous to
tribal disaster declarations to access FEMA).
Include Tribes in HIV/HCV Funding Opportunities. CDC HIV/HCV
prevention and education generally flows to states via block grants.
This system leaves many tribes with limited or no resources, and forces
tribes to compete with states for funding. As an example, in fiscal
year 2020, the CDC received $341 million in fiscal year 2020 for HCV
grants but tribes were ineligible to apply (CDC-RFA-PS20-2009). For
fiscal year 2021, we recommend a tribal set-aside of $25 million for
HIV and HCV prevention.
centers for medicare and medicaid services (cms)
Medicaid and Medicare Telehealth Services.--Telehealth is a key
component to ensuring AI/AN Medicaid and Medicare beneficiaries, have
access to healthcare when they do not have transportation to get to a
provider or, as with COVID-19, someone is in a high-risk group for
serious illness and should not visit a medical facility. IHS and tribal
facilities have demonstrated that telehealth visits are a safe and
effective way to provide services to AI/AN Medicaid and Medicare
beneficiaries during COVID-19. CMS' expansion of telehealth services on
a temporary and emergency basis related to COVID-19 has benefited AI/AN
Medicaid and Medicare beneficiaries and these telehealth policies
should be made permanent under legislation. In addition, because of the
lack of broadband in some rural tribal communities, it is important
that all telehealth services be reimbursable with a phone visit, when
no video is available. Finally, we recommend an increased tribal
Medicare encounter rate for telehealth, including phone only visits,
for Indian Health Care Providers equal to an in-person visit.
For more information, please contact Laura Platero, NPAIHB, at
[email protected].
[This statement was submitted by Nickolaus Lewis, Chairman,
Northwest
Portland Area Indian Health Board.]
______
Prepared Statement of the Nursing Community Coalition
During these unique times, we recognize how crucial Federal
investments for the nursing workforce and the nursing pipeline are to
our patients and the health of our nation. Given these realities, and
as we combat the COVID-19 pandemic, the Nursing Community Coalition
respectfully requests that Congress continues robust investment in
nursing workforce, education, and research in fiscal year 2021 by
supporting at least $278 million 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 HRSA), and at least $182
million for the National Institute of Nursing Research (NINR), one of
the 27 Institutes and Centers within NIH.
The Nursing Community Coalition is comprised of 63 national nursing
organizations who work together to advance healthcare issues that
impact education, research, practice, and regulation. Collectively, the
Nursing Community Coalition represents Registered Nurses (RNs),
Advanced Practice Registered Nurses (APRNs, including Certified Nurse-
Midwives, Nurse Practitioners, Clinical Nurse Specialists, and
Certified Registered Nurse Anesthetists), nurse leaders, nursing
students, faculty, and researchers, as well as other nurses with
advanced degrees. Together, we reiterate the request for increased
funding for Title VIII Nursing Workforce Development programs and NINR,
especially as we address the current, and future, health challenges.
providing care to all americans through the nursing lens
Nurses make up the largest group of health professionals in the
United States and are indispensable to the health and well-being of all
Americans. With more than four million licensed practitioners across
the country, nurses are responding to healthcare challenges, including
COVID-19, in all communities, especially in rural and underserved
areas, and consistently provide high-quality patient-centered care.\1\
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\1\ National Council of State Boards of Nursing. (2020). Active RN
Licenses: A profile of nursing licensure in the U.S. as of March 21,
2020. Retrieved from: https://www.ncsbn.org/6161.htm.
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The main source of Federal funding for the nursing workforce are
the Title VIII Nursing Workforce Development programs, which bolster
nursing education at all levels, strengthen the nursing workforce, and
are essential to ensuring the demand for nursing care is met throughout
this nation. Funding for Title VIII is essential, but especially
crucial during public health emergencies as these programs connect
patients with high-quality nursing care in community health centers,
hospitals, long-term care facilities, local and state health
departments, schools, workplaces, and patients' homes.
A prime example of this is the Title VIII Advanced Nursing
Education (ANE) programs. ANE programs support APRN students and nurses
to practice on the front lines and in rural and underserved areas
throughout the country. In Academic Year 2018-2019, ANE programs
supported more than 9,100 students.\2\ Of these students, 73 percent of
Advanced Nursing Education Workforce (ANEW) and 62 percent of Advance
Nursing Education program had clinical training sites in primary care
settings, while 78 percent of Nurse Anesthetist Trainee (NAT)
recipients were trained in medically-underserved areas.\3\
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\2\ Department of Health and Human Services fiscal year 2021 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Pages 141-145.
Retrieved from: https://www.hrsa.gov/sites/default/files/hrsa/about/
budget/budget-justification-fy2021.pdf.
\3\ Department of Health and Human Services fiscal year 2021 Health
Resources and Services Administration Justification of Estimates for
Appropriations Committees. Pages 142-143.
Retrieved from: https://www.hrsa.gov/sites/default/files/hrsa/about/
budget/budget-justification-fy2021.pdf.
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Together, Title VIII Nursing Workforce Development programs serve a
vital need and help to ensure that we have a robust nursing workforce
that is prepared to respond to public health threats and ensure the
health and safety of all Americans. The Nursing Community Coalition
respectfully requests at least $278 million for the Title VIII Nursing
Workforce Development programs in fiscal year 2021.
improving patient care through scientific research and innovation
For more than thirty years, scientific endeavors funded at the
National Institute of Nursing Research (NINR) have been essential to
advancing the health of individuals, families, and communities.
Rigorous inquiry and research are indispensable when responding to the
ever-changing healthcare landscape and healthcare emergencies such as
COVID-19. From precision genomics to palliative care and wellness
research to patient self-management, NINR has been at the forefront of
evidence driven research to improve care.\4\
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\4\ National Institutes of Health, National Institute of Nursing
Research. The NINR Strategic Plan: Advancing Science, Improving Lives.
Pages 4, 10 Retrieved from https://www.ninr.nih.gov/sites/
www.ninr.nih.gov/files/NINR_StratPlan2016_reduced.pdf.
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It is imperative that we continue to support this necessary
scientific research, which is why the Nursing Community Coalition
respectfully requests at least $182 million for the NINR in fiscal year
2021.
Now, more than ever, it is vital that we have the resources to meet
today's public health challenges, such as COVID-19. Investing in Title
VIII Nursing Workforce Development programs and NINR are essential to
meeting that need. By funding Title VIII and NINR, Congress can
continue to reinforce and strengthen the foundational care nurses
provide daily in communities across the country. Thank you for your
support of these crucial programs.
60 Members of the Nursing Community Coalition Submitting this Testimony
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
American Academy of Emergency Nurse Practitioners
Academy of Neonatal Nursing
American Academy of Nursing
American Association of Colleges of Nursing
American Association of Critical-Care Nurses
American Association of Neuroscience Nurses
American Association of Nurse Anesthetists
American Association of Nurse Practitioners
American Association of Post-Acute Care Nursing
American College of Nurse-Midwives
American Nephrology Nurses Association
American Nurses Association
American Organization for Nursing Leadership
American Pediatric Surgical Nurses Association, Inc.
American Public Health Association, Public Health Nursing Section
American Psychiatric Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
Association for Radiologic and Imaging Nursing
Association of Community Health Nursing Educators
Association of Nurses in AIDS Care
Association of Pediatric Hematology/Oncology Nurses
Association of periOperative Registered Nurses
Association of Public Health Nurses
Association of Rehabilitation Nurses
Association of Veterans Affairs Nurse Anesthetists
Association of Women's Health, Obstetric and Neonatal Nurses
Chi Eta Phi Sorority, Incorporated
Commissioned Officers Association of the U.S. Public Health Service
Dermatology Nurses' Association
Emergency Nurses Association
Friends of the National Institute of Nursing Research
Gerontological Advanced Practice Nurses Association
Hospice and Palliative Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Society of Psychiatric-Mental Health Nurses
National Association of Clinical Nurse Specialists
National Association of Hispanic Nurses
National Association of Neonatal Nurse Practitioners
National Association of Neonatal Nurses
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Association of School Nurses
National Black Nurses Association
National Council of State Boards of Nursing
National Forum of State Nursing Workforce Centers
National League for Nursing
National Nurse-Led Care Consortium
National Organization of Nurse Practitioner Faculties
Nurses Organization of Veterans Affairs
Oncology Nursing Society
Organization for Associate Degree Nursing
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
Society of Pediatric Nurses
Society of Urologic Nurses and Associates
Wound, Ostomy and Continence Nurses Society
[This statement was submitted by Rachel Stevenson, Executive
Director, Nursing Community Coalition.]
______
Prepared Statement of One Voice Against Cancer
One Voice Against Cancer (OVAC) is a broad coalition of public
interest groups representing millions of cancer patients, researchers,
providers, survivors and their families, delivering a unified message
to Congress and the White House on the need for increased funding for
cancer research and prevention priorities. For fiscal year 2021, we are
asking that Congress fund the National Institutes of Health at $44.684
including $6.928 billion for the National Cancer Institute (NCI). We
are also asking that the Centers for Disease Control and Prevention's
(CDC) Division of Cancer Prevention and Control (DCPC) receive $559
million including $70 million for the National Program of Cancer
Registries (NPCR).
Cancer is a major public health problem worldwide and is the second
leading cause of death in the United States. It is estimated that more
than 1.8 million people in the U.S. will be diagnosed with cancer this
year. Additionally, approximately 606,520 Americans will die from the
disease in 2020, which translates to more than 1,660 people a day.
Recent estimates show that cancer costs the U.S. economy more than $216
billion annually in direct treatment costs and lost productivity, a
number that will increase dramatically as incidence rates climb.
For the last 50 years, every major medical breakthrough in cancer
can be traced back to the National Institutes of Health (NIH) and the
National Cancer Institute (NCI). We know that investment in research at
the NIH and NCI leads to lives saved.
The cancer death rate rose during most of the 20th century but
Federal investments in cancer research and prevention have resulted in
a continuous decline in the cancer death rate since its peak in 1991.
The U.S. cancer death rate declined by 29 percent from 1991 to 2017,
including a 2.2 percent drop from 2016 to 2017, the largest single-year
drop in cancer mortality ever reported. This translates into almost 3
million fewer cancer deaths. Today, there are more than 16.9 million
American cancer survivors.
Additionally, more than 80 percent of Federal funding for the NIH
and NCI is spent on biomedical research projects at research facilities
across the country. In fiscal year 2019, the NIH provided over $30
billion in extramural research to scientists in all 50 states and the
District of Columbia. NIH research funding also supported more than
475,000 jobs and more than $81 billion in economic activity last year.
Thanks to your bipartisan, bicameral leadership, Congress has
increased funding for NIH by $11.6 billion over the past 5 years. We
are especially grateful that Congress dedicated new funding in fiscal
year 2020 to address a precipitous decline in the success rate for
research project grant (RPG) applications at NCI.
The NCI is experiencing a demand for research funding that is far
beyond that of any other Institute or Center (IC). Between fiscal year
2013 and fiscal year 2018, the number of R01 (investigator-initiated)
grant applications to NCI rose by 45.9 percent. For all other ICs
during that time, the number of R01 applications rose by just 4.9
percent.
As a result of this extraordinary demand from the scientific
community, the RPG success rate at NCI dropped from 13.7 percent in
fiscal year 2013 to 11.3 percent in fiscal year 2018. This is a
situation unique to NCI, at a time when cancer researchers are making
historic advances in new treatments and therapies. The success rate for
NIH overall during that same period rose from 16.8 percent to 20.2
percent.
We thank Congress for addressing this issue in the fiscal year 2020
Labor, Health and Human Services, and Education (Labor-HHS)
Appropriations bill, but sustained investments will be required to
improve the success rate at NCI and maintain the current pace of
progress in cancer research. Therefore, OVAC recommends at least $44.7
billion for NIH in fiscal year 2021, a $3 billion increase over the
fiscal year 2020 level. For NCI, we recommend $6.9 billion, which is
both the amount proposed by NCI in its fiscal year 2021 professional
judgment budget and the level needed to provide an increase for NCI
which is proportional to that of NIH overall.
Preventing cancer is also critically important. About half of the
over 600,000 cancer deaths that will occur this year could be averted
through the application of existing cancer control interventions. The
Centers for Disease Control and Prevention's (CDC's) Division of Cancer
Prevention and Control (DCPC) provides key resources to states and
communities to prevent cancer. Although we have seen declines in the
cancer death rate overall, progress is slowing for cancers that are
amenable to early detection through screening (e.g., breast cancer,
prostate cancer, and colorectal cancer), and substantial racial and
geographic disparities persist for highly preventable cancers, such as
those of the cervix and lung. Increased investment in the equitable
application of existing cancer control interventions as spearheaded by
CDC's DCPC will accelerate progress in the fight against cancer. For
this reason, we request $559 million overall for DCPC, an increase of
$178 million over the fiscal year 2020 level.
Within DCPC, cancer registries are vital in identifying emerging
trends, investigating disparities, understanding patterns of care, and
evaluating the impact of early detection and treatment advances on
cancer incidence and outcomes. The National Program of Cancer
Registries (NPCR) provides technical, operational, and financial
support for states to manage their own cancer registries. We are
grateful that Congress prioritized cancer registries in CDC's new data
initiative, created in the fiscal year 2020 Labor-HHS appropriations
bill. However, there is currently a data lag of 24 months within the
system. With new resources, the CDC could create a cloud-based system
that would record data in real time, greatly enhancing the ability of
states to develop targeted approaches to preventing and treating
cancer. We therefore request a dedicated increase in funding for NPCR
of $19 million to ensure that DCPC can move forward with the necessary
improvements.
Additionally, oncology nurses are on the front lines when it comes
to providing quality cancer care and contribute significantly to cancer
research. More funding for the Health Resources and Services
Administration's nurse training programs is necessary to support more
nursing scholarships and loan repayment applications and to address the
current and future nursing workforce shortage.
Below please find an overview of OVAC's program level requests in
the Labor-HHS bill:
National Institutes of Health (NIH)--$44.684 billion, including:
--National Cancer Institute (NCI): $6.928 billion
--National Institute on Minority Health and Health Disparities
(NIMHD): $360 million
--National Institute on Nursing Research (NINR): $181 million
Centers for Disease Control and Prevention (CDC) Cancer Programs--$559
million, including:
--National Comprehensive Cancer Control Program: $50 million
--National Program of Cancer Registries: $70 million
--National Breast and Cervical Cancer Early Detection Program: $275
million
--Colorectal Cancer Control Program: $70 million
--National Skin Cancer Prevention Education Program: $5 million
--Prostate Cancer Awareness Campaign: $35 million
--Ovarian Cancer Control Initiative: $12 million
--Gynecologic Cancer and Education and Awareness (Johanna's Law): $15
million
--Cancer Survivorship Resource Center: $900,000
Health Resources and Services Administration (HRSA)
--Title VIII Nursing Programs: $270.5 million
Once again, thank you for your continued leadership on funding
issues important in the fight against cancer. Obviously, the COVID-19
pandemic has upended our entire society including cancer research,
treatment and prevention but cancer continues to impact millions of
people and their families and it does not take a break because of the
pandemic. Funding for cancer research, prevention, survivorship, and
nursing must continue to be top budget priorities in order to increase
the pace of progress in the fight against cancer. OVAC once again calls
on Congress to sustain our nation's commitment to cancer research and
prevention by increasing support for these efforts.
[This statement was submitted by Caroline Powers, Chair, One Voice
Against Cancer, Director, Federal Relations, American Cancer Society
Cancer Action
Network.]
______
Prepared Statement of Parker Teresa deg.
Prepared Statement of Teresa Parker
Chairman Blunt, Ranking Member Murray and Subcommittee Members,
Thank you for your public service and for the opportunity to submit
testimony.
interest and background
I have recently retired after working over 40 years at MARVA
Workshop where I served as the Executive Director for the last 21
years. MARVA is a 501(c)3 non-profit organization with a mission to
provide meaningful work and employment services for individuals with
Intellectual and Developmental Disabilities (IDD).
MARVA Workshop, like many other Community Rehab Programs (CRP)
across the nation, has a focus on assisting individuals to achieve
goals that are important to them. Our job is to facilitate a successful
outcome for each individual in the way that they define success.
Sometimes this is accomplished in the workshop setting, other times
through competitive integrated employment, but it is a choice made by
the individual. Unfortunately, center based work has come under attack
from multiple entities that bluntly and emphatically state workshops
isolate, segregate and exploit. These offensive adjectives used by
organizations like the National Disability Rights Network (NDRN) to
express their disapproval of center based opportunities, do not match
the sentiments conveyed by the individuals and families of the people
we serve, and thousands and thousands of others across the United
States. We understand and fully agree that center based work is not the
appropriate option for everyone, but I humbly suggest that neither is
competitive integrated employment.
For example ``Ron'' has worked at MARVA for over 20 years. Prior to
MARVA, he experienced failure over and over, and had been fired at
least 10 times from various jobs. He was broke, discouraged, homeless,
and desperate. Turning to his mother, she directed him to MARVA. Today,
Ron will quickly tell you, ``Since working at MARVA my life has never
been the same! MARVA...helped me be independent and encouraged me to
feel a sense of worth. I plan to work at MARVA for many years to come.
I don't ever want to get fired again!"
Ron found what worked for him. He lives in his own house, drives
his own vehicle, pays his bills and taxes, and has a social life, but
sadly many Subject Matter Experts (SME) would say this is not
successful employment because it is at a ``sheltered workshop.'' They
would suggest that he is not experiencing the quality of life available
to him through competitive integrated employment. They have a right to
their opinion, but you will NOT convince Ron or his family that he
should consider ``other options.'' We believe the opinion of Ron and
those in similar situations should carry more value than the opinions
of SMEs.
The ideology that ``workshops are inherently bad and all
individuals with disabilities can work in competitive integrated
employment'' has unfortunately permeated into many Federal agencies to
the point that providing services to those with the most significant
disabilities has become a nightmare. I see us all on the same side,
with differing views of how to accomplish a noble goal, but regrettably
the current funding allocations gives the other side an unfair
advantage.
examples of concerns
Operating under the Department of Health and Human Services, the
Administration on Intellectual and Developmental Disabilities and the
Administration for Community Living include grantees that are outspoken
in their dislike of center based work programs. The list includes:
--Protection and Advocacy Systems (P&A)
--Developmental Disabilities Councils (DD Councils)
--University Center for Excellence in Developmental Disabilities
(UCEDD)
--President's Committee for People with Intellectual Disabilities
(PCPID)
These groups adamantly oppose our existence, but offer no viable
solutions to increase employment for individuals with severe IDD. Their
goal to remove all workshop employment as an option would reduce the
number of employed individuals with disabilities. It would also create
a problematic void in the lives of some of our most vulnerable citizens
and the lives of their families. Without work centers, a large
percentage of this group would end up sitting at home wasting away.
Another area of concern is the significant number of dollars
awarded to some non-profit organizations who openly advocate for the
removal of workshop settings. This list is not exhaustive, but
includes:
--National Disability Rights Network (NDRN)--www.ndrn.org
--Association of University Centers on Disabilities (AUCD)--
www.aucd.org
--National Disability Institute (NDI)--www.realeconomicimpact.org
--National Association of Councils on Developmental Disabilities
(NACDD)--www.nacdd.org
--Disability Rights Education and Defense Fund (DREDF)--www.dredf.org
--Autistic Self-Advocacy Network (ASAN)--www.autisticadvocacy.org
These groups are quick to talk about capacity building, employer
engagement, job carving, etc., but rarely, if ever, offer realistic
tangible alternatives for the most vulnerable individuals with
disabilities. The ones that are a challenge to create meaningful work
for even in our controlled environments. The ones that cannot follow
instructions, ones that need assistance in the restroom, the ones that
do not understand the need to control their outbursts, the ones that
wander and get lost, the ones that know no stranger, the ones that
smile warmly, but do not have a clue what is being said, these, these
are the ones that will sadly be impacted the most by the current
mindset that workshops are outdated and completely ineffective.
examples of grassroots efforts to support choice
The following is a list of grassroots efforts that have sprung up
across the nation to bring awareness the negative impact the current
trends and philosophies are having on individuals with severe
intellectual and developmental disabilities and their families. Please
take the time to review their efforts.
A-TEAM USA--www.ateamusa.net
Dignity Has A Voice--www.dignityhasavoice.com
Together for Choice--www.togetherforchoice.org
National Council on Severe Autism--www.ncsautism.org
These groups represent themselves or their loved ones impacted by
disability policy and programs. Please consider their heartfelt
unbiased positions.
request
I respectfully request that language be incorporated into all
funding allocations associated with DHHS that requires recognition of
center based employment services (workshops) as viable options for
those whom elect those services.
Respectfully submitted,
Teresa Parker
______
Prepared Statement of PATH
This testimony is submitted by Heather Ignatius on behalf of PATH,
an international nonprofit organization that drives transformative
innovation to save lives and improve health in low- and middle-income
countries. PATH is appreciative of the opportunity afforded by Chairman
Blunt, Ranking Member Murray, and members of the Subcommittee on Labor,
Health and Human Services, Education and Related Agencies to submit
written testimony regarding fiscal year 2021 funding for global health
programs within the U.S. Department of Health and Human Services (HHS).
PATH acknowledges and appreciates the strong leadership the Committee
has shown in supporting HHS' work in this area--especially given the
current pandemic--and we recommend that support continue. Therefore, we
respectfully request that this Subcommittee provide no less than the
fiscal year 2020 enacted level of $570.8 million to the CDC's Center
for Global Heath (CGH) to sustain programming for global immunization,
malaria, global health security, and research and development. Within
CGH, we specifically support increases for CDC's Division of Global
Health Protection, which should be increased from $183.2 million to
$225 million to bolster capacity to prevent, detect, and rapidly
respond to emerging diseases--such as COVID-19--in low- and middle-
income countries. We also support an additional $50 million for the
Infectious Disease Rapid Response Fund, $30 million for CGH's Division
of Parasitic Diseases and Malaria, and $226 million for the Global
Immunization Division. This funding allows CDC to save lives, reduce
disease, and improve health around the world.
The Vital Role of HHS in Global Health and Security
We are grateful for the global health funding that has already been
provided in supplementals over the last few months. In that time,
COVID-19 has reached almost every country in the world--crippling
economies, overwhelming healthcare systems, filling hospitals,
dwindling supplies, and emptying public spaces. As the disease burden
grows both within the U.S. and around the globe, so does the need for
additional funding. As we learned from past outbreaks such as Ebola,
investments that help countries contain diseases at the source are some
of the most effective and important the U.S. can make. These
investments have been used to train epidemiologists, engage affected
communities, improve disease detection and tracking systems, build
Emergency Operations Centers (EOCs), and upgrade labs. Such efforts
have allowed partner countries to greatly shorten their response times
to outbreaks and epidemics--for example, Cameroon was able to shorten
their response timeline from 8 weeks to 24 hours.
As a result of U.S. investments in the wake of Ebola, many
countries are starting from a much stronger place as they face the
COVID-19 pandemic. Countries have also drawn key lessons from the Ebola
outbreak; for instance, the Democratic Republic of the Congo (DRC) has
established two new coordination mechanisms to unite the country's top
epidemiologists and virologists. In addition, their Emergency
Operations Center (EOC), funded by the U.S. Centers for Disease Control
and Prevention (CDC) through the agency's global health security
investments and launched during the Ebola outbreak, will help the DRC
continue to build capacity and reputation as a leader in outbreak
management in Africa. Because of this investment, the Democratic
Republic of the Congo is better prepared today than it was 5 years ago.
However, despite the progress made by past investments, some
populations will face COVID-related interruptions to essential services
and will suffer from poor nutrition, outbreaks of vaccine-preventable
diseases, and other health issues like HIV/AIDS and malaria. We must
sustain support for these critical programs.
Two other entities within HHS, the National Institutes of Health
(NIH) and the Biomedical Advanced Research and Development Authority
(BARDA), are also playing critical roles in protecting Americans from
COVID-19 and other health security threats. NIH and BARDA are currently
taking steps to speed the development and manufacturing of vaccines to
prevent COVID-19, working with New Jersey-based Janssen Research &
Development, part of Johnson & Johnson, as well as Moderna of
Cambridge, Massachusetts. The NIH and BARDA also support the CDC's
global work by building critical overseas capacity to stop the spread
of deadly diseases and developing new tools and technologies to
prevent, detect, and treat future outbreaks.
The ongoing threat that COVID-19 and other infectious diseases pose
to the health, economic security, and national security of the United
States demands dedicated and steady funding for global health security.
Just as we invest in a strong military in preparation for other
security risks, Congress must ensure a continued robust investment in
global health security preparedness, research and development, and
response capability.
Protecting the U.S. Through Leadership in Global Health Research and
Development
The ongoing COVID-19 pandemic is a clear call for investment in
America's capacity to rapidly develop and deploy new technologies that
can prevent, detect, and treat emerging global health threats. The U.S.
leads the world in research and development (R&D) for tools that solve
some of humanity's most pressing health problems. The annual G-Finder
report from Policy Cures Research estimates that in 2018, the U.S.
contributed $1.598 billion through NIH and $27 million through CDC to
the development of global health products. Incredible progress is
possible when the U.S. puts the full power of its resources to work.
For example, in response to the 2014 Ebola outbreak, U.S. funding for
Ebola R&D increased from negligible levels in 2013, to $101 million in
2014, to $298 million in 2015--resulting in the registration of four
new products for Ebola and select viral hemorrhagic fevers, as well as
the advancement of 11 new U.S.-supported Ebola products. These efforts
were supported by the CDC as well as NIH, BARDA, and agencies outside
HHS, which all played unique and critical roles in the product
development process.
However, as a nation we have failed to sustain investment in a
suite of technologies that will help us respond to the disease threats
most likely to impact Americans and populations around the globe. For
example, development of a promising SARS vaccine was halted in 2016 due
to lack of funding--only to be re-started after the spread of COVID-19.
Congress must ensure that the U.S. is making smarter and sustained
investments for just-in-case development and just-in-time delivery of
the tools we will need for the most likely threats to human health.
The National Biodefense Strategy rightly recognizes the importance
of investments in R&D to prepare for future outbreaks, calling for
funding and leadership in emerging technologies as R&D is integrated
into Federal planning. Today more than ever, the U.S. is at the
forefront of global health innovation because of long-term investment
in NIH, CDC, and BARDA. To accelerate progress toward lifesaving tools
for a range of health threats, we call for maintaining robust funding
for NIH and particularly for the NIAID and the Fogarty International
Center; providing funding to match CDC's increased responsibilities in
global health and security for the Center for Global Health and the
National Center for Emerging Zoonotic and Infectious Diseases; and
supporting funding for BARDA's critical work in emerging infectious
diseases. As a complement to continued investment in BARDA and NIH, the
U.S. should invest in the Coalition for Epidemic Preparedness
Innovations (CEPI) which is working to advance at least nine COVID-19
vaccine candidates. Investment in CEPI would allow the U.S. to leverage
funding from other global donors and ensure the U.S. can influence the
impact and outcome of CEPI's efforts.
Successful implementation of these components requires urgent
coordination across agencies and strategic investments. Congress should
monitor progress on investments in emerging technologies and medical
countermeasures, as well as the integration of R&D into Federal
planning, including facilitating policies and incentives across
interagency response R&D efforts.
Immunization Programs During COVID-19 and Beyond
HHS is also achieving complementary global health and security
goals through investment in immunization, with most vaccine delivery
activities overseen by CDC's Global Immunization Division. Vaccines are
among the most high-impact and cost-effective tools available today to
combat infectious disease threats-many vaccine-preventable diseases
were once global pandemics much like COVID-19. This pandemic is a stark
reminder of how fast an outbreak can spread without a vaccine to
protect us. Thanks to immunization, outbreaks of childhood diseases
such as polio, measles, diphtheria, and pertussis are preventable, and
communities are protected from some of the most infectious and lethal
pathogens. Immunization programs prevent an estimated 2.5 million
deaths each year among children under the age of five; these programs
also bolster local health systems and enable better disease detection.
Even before the COVID-19 pandemic, vaccines for measles, polio, and
other diseases were out of reach for 20 million children under the age
of one every year. In 2018, more than 13 million children below the age
of one globally did not receive any vaccines at all, many of whom live
in countries with weak health systems. Given these difficulties, the
disruption to immunization programs caused by COVID-19 could create
pathways to disastrous outbreaks in 2020 and well beyond. As healthcare
is disrupted globally, maintaining global vaccination efforts is
critical to preventing needless deaths.
Fighting to Eliminate Malaria
The CDC plays a critical role in the fight against malaria, as co-
implementer of the President's Malaria Initiative (PMI)--alongside the
U.S. Agency for International Development--as well as through its
Parasitic Diseases and Malaria program. These programs provide crucial
technical assistance, with a focus on monitoring, evaluation, and
surveillance, as well as operational and implementation research.
Malaria prevention and treatment programs have prevented more than
seven million deaths globally since 2000; as the world responds to
COVID-19, we must safeguard these incredible gains. This progress could
not have been accomplished without sustained U.S. commitment. Into the
future, eliminating malaria by 2040 could save 11 million additional
lives and unlock an estimated $2 trillion in economic benefits from
gains in productivity and health savings.
According to the World Health Organization's World Malaria Report,
nearly half the world's population lives in areas at risk of malaria--
there were an estimated 228 million cases and 405,000 deaths from the
disease in 2018 alone. It is also important to note that malaria deaths
increase during pandemics, when sick people are unable to access
healthcare in overburdened health systems. The COVID-19 pandemic is
having a catastrophic impact on the most vulnerable communities
worldwide, threatening our progress against malaria. This year, the
Global Fund celebrated the distribution of the 2 billionth bed net to
prevent malaria infections--but if COVID-19 leads to severe disruption
of malaria services such as insecticide-treated net campaigns and
access to antimalarial medicines, malaria deaths in sub-Saharan Africa
could double in coming years. To reduce the pressure that COVID-19 is
exerting on health systems, it is critical that we continue to deliver
malaria interventions at the community level. As PMI has expanded,
CDC's mandate has grown, but its budget for malaria has remained
stagnant. In fiscal year 2021, Congress should fully fund PMI and
increase funding for the CDC Division of Parasitic Diseases and Malaria
(DPDM) program from $26 million to $30 million, to better track, treat,
and test for malaria, and to ensure these services continue in the
midst of a global health crisis.
An investment in Health, at Home and Around the World
With strong funding for global health programs within HHS, the
department will be able to improve access to proven health
interventions in the communities where they are needed most, as well as
respond to the emerging challenge of COVID-19. By fully funding global
health and BARDA accounts, the U.S. can prevent the further spread of
disease, protect the health of Americans, and minimize the impact on
vulnerable populations worldwide.
[This statement was submitted by Heather Ignatius, Director, US and
Global
Advocacy, PATH.]
______
Prepared Statement of the Personalized Medicine Coalition
Chairman Blunt, Ranking Member Murray and distinguished members of
the subcommittee, the Personalized Medicine Coalition (PMC) appreciates
the opportunity to submit testimony on the National Institutes of
Health (NIH) fiscal year 2021 appropriations. PMC is a nonprofit
education and advocacy organization comprised of more than 230
institutions from across the healthcare spectrum. As the subcommittee
begins work on the fiscal year 2021 Labor, Health and Human Services,
Education and Related Agencies appropriations bill, we ask that the NIH
receive an appropriation of at least $44.7 billion in fiscal year 2021,
a $3 billion increase over the NIH's program level funding in fiscal
year 2020.
At this historic moment for medicine and humanity, biomedical
research has perhaps never been more important. We sincerely appreciate
the additional funding provided for NIH to respond to COVID-19 across
the recent supplemental appropriations bills. PMC commends the NIH's
leadership during the current COVID-19 pandemic and recognizes that
these emergency resources are playing an important role in identifying
therapies and vaccines, as well as improving testing and diagnostic
methods. We also believe NIH-funded basic research is critical to our
understanding of how the virus expresses itself across populations and
individuals to eventually develop personalized treatment plans for
patients. Increasing funding for the agency's efforts to lead
scientific discovery across other disease areas, however, is not any
less important because of COVID-19. Therefore, we encourage the
Committee to consider a $3 billion increase in program level funding in
addition to any emergency appropriations related to COVID-19 research
and relief and in addition to funding for the Innovation Account
established in the 21st Century Cures Act. This funding level would
allow for meaningful growth above inflation in the NIH's base budget
and expand the agency's capacity to support promising science in all
disciplines, including personalized medicine.
Personalized medicine, also called precision or individualized
medicine, is an evolving field in which physicians use diagnostic tests
to identify specific biological markers, often genetic, that help
determine which medical treatments will work best for each patient. By
combining this information with an individual's medical records,
circumstances, and values, personalized medicine allows doctors and
patients to develop targeted treatment and prevention plans.
Personalized healthcare promises to detect the onset of disease and
pre-empt its progression, as well as improve the quality,
accessibility, and affordability of healthcare.\1\
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\1\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
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i. the role of nih in personalized medicine
For each of the past 5 years, personalized medicines have accounted
for a quarter or more of the new drugs approved by the U.S. Food and
Drug Administration (FDA), with a record of 42 percent in 2018.\2\ In
2005, personalized medicines accounted for only 5 percent of new drug
approvals.\3\ The most recent approvals address the root causes of rare
diseases in many patients for whom there were no options before; expand
treatment options for cancer patients; and target therapies to
responder populations.
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\2\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PM_at_FDA_
The_Scope_and_Significance_of_Progress_in_2019.pdf.
\3\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/PM_at_FDA_
The_Scope _and_Significance_of_Progress_in_2019.pdf.
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As the primary Federal agency conducting and supporting basic and
translational research investigating the causes, treatments and cures
for both common and rare diseases, NIH is leading scientific discovery
for personalized medicines. Many institutes and centers at the NIH are
supporting research that is informing the development of personalized
medicines, including the National Human Genome Research Institute
(NHGRI), the National Cancer Institute (NCI), the National Institute on
Aging (NIA), and the National Heart, Lung and Blood Institute (NHIBI).
An increase for NIH in fiscal year 2021 would protect its foundational
role in the identification and development of personalized medicines.
ii. sustaining basic and translational research
Increased investments in the work of the NIH in fiscal year 2021
are justified in part by emerging scientific insights that present new
opportunities in personalized medicine. By increasing NIH's budget for
fiscal year 2021, Congress can accelerate the pace at which these
insights are translated into improved care for American patients.
Scientific discovery in personalized medicine begins with basic
research that gathers fundamental knowledge about the molecular basis
of a disease and with translational research aimed at applying that
knowledge to develop a treatment or cure. Basic research has
contributed to the development of more than 180 personalized medicines
that are on the market and available for patients as of 2020.\4,5\
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\4\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The-Personalized-Medicine-Report1.pdf.
\5\ http://www.personalizedmedicinecoalition.org/Resources/
Personalized_Medicine_at_FDA _An_Annual_Research_Report.
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The future of cancer care, for example, is expected to be
profoundly influenced by the use of biomarkers that will guide
researchers and physicians at every stage from drug development to
disease management. In 2018, 55 percent of all oncology trials involved
the use of biomarkers, compared to 15 percent in 2000.\6\ According to
the NIH's latest Annual Report to the Nation on the Status of Cancer,
cancer death rates continued to decline 1.5 percent on average per year
from 2001 to 2017 across all ages, genders, and racial and ethnic
groups.\7\ This success can be attributed to significant progress in
cancer prevention, early detection, and treatment as a result of
investments in basic research.
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\6\ http://www.personalizedmedicinecoalition.org/Userfiles/PMC-
Corporate/file/The_Evolution
_of_Biomarker_Use_in_Clinical_Trials_for_Cancer_Treatments.pdf.
\7\ https://www.nih.gov/news-events/news-releases/annual-report-
nation-cancer-death-rates-continue-decline-
2020?utm_source=sfmc&utm_medium=email&utm_campaign=adhoc&utm_
content=newsletter.
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Basic genomics research also offers opportunities beyond oncology,
especially for rare diseases. Rare diseases affect an estimated 25 to
30 million Americans, and with advances in genomics, the molecular
causes of 6,500 rare diseases have been identified--but only about 5
percent have an FDA-approved treatment. In 2019, NIH awarded
approximately $38 million in grants to 20 teams and a data management
center to study a wide range of rare diseases.\8\ Research groups,
which include scientists, clinicians, patients, families, and
advocates, are collaborating on natural history studies, measuring
treatment outcomes, and studying biomarkers that provide indicators of
how a drug is working in patients. Pooling patients, data, experiences,
and resources promises to lead to more successful clinical trials
sooner for rare disease patients who presently have few or no treatment
options.
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\8\ https://ncats.nih.gov/news/releases/2019/rdcrn-funding.
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There are other people living with highly prevalent diseases that
are still in need of better treatments and a cure. The Alzheimer's
Association estimates that 5.8 million Americans are living with
Alzheimer's disease, for example.\9\ Despite increasing numbers of
Alzheimer's diagnoses, there are no treatments that can prevent or
alter the course of the disease. Researchers are studying the genetic
underpinnings of Alzheimer's disease to more fully understand its
complexity. The Accelerating Medicines Partnership for Alzheimer's
disease led by the NIH has identified over 500 drug targets. To build
upon this progress, in 2019 the NIH launched two new research centers
focused on accelerating the discovery and development of treatments and
cures for people living with Alzheimer's.\10\
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\9\ https://www.alz.org/media/Documents/alzheimers-facts-and-
figures_1.pdf.
\10\ https://www.nih.gov/news-events/news-releases/new-nih-funded-
translational-research-centers-speed-diversify-alzheimers-drug-
discovery.
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The NIH is also leading efforts to develop tools and resources in
gene therapy and artificial intelligence that will facilitate the
identification and development of new personalized medicines for common
and rare diseases. Wait times to produce vectors--or the ``delivery
vehicles''--in gene therapy and gene editing studies currently run one
to 2 years due to their resource intensity.\11\ Funding in fiscal year
2021 would enable the NIH to create a consortium addressing this
bottleneck to bringing new gene therapies to clinical trials for
patients.
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\11\ https://docs.house.gov/meetings/AP/AP07/20200304/110616/HHRG-
116-AP07-Wstate-CollinsF-20200304.pdf.
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iii. accelerating personalized medicine research
Increasing the NIH's base budget will also ensure that the agency
has the resources necessary to advance the longstanding aspects of its
mission without de-prioritizing supplemental initiatives in
personalized medicine recently supported by Congress.
The 21st Century Cures Act (Cures Act) provided support for
important initiatives that will benefit personalized medicine. The
first initiative, the All of Us\TM\ Research Program, launched in May
of 2018. All of Us is collecting genetic and health information from
one million volunteers for a decades-long research project. By mid-
December 2019, over 305,000 individuals consented to participate and
over 235,000 have fully enrolled. More than 80 percent of those
individuals were from groups historically underrepresented in research,
such as seniors, women, Hispanics and Latinos, African Americans, Asian
Americans and members of the LGBTQ community.\12\ This program is
creating an invaluable biomedical data set that is inclusive of all
Americans and will inform the development of new personalized
medicines. Program officials plan to begin returning individual genetic
results to participants this year.\13\
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\12\ https://officeofbudget.od.nih.gov/pdfs/fiscal year 21/br/1-
OverviewVolumeSingleFile-toPrint.
pdf.
\13\ https://officeofbudget.od.nih.gov/pdfs/fiscal year 21/br/1-
OverviewVolumeSingleFile-toPrint.
pdf.
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All of Us will continue to refine and streamline participant
enrollment while focusing on retaining current participants. The
program also plans to give researchers access to additional data that
include participants' genomic information, genetic propensity for
disease or differential medication response, and visualization of basic
electronic health record data for use in their research to improve the
diagnosis, treatment, and prevention of disease. To facilitate the use
of data from All of Us and other cohort studies, the NHGRI plans to
establish a new research program developing cutting-edge data and
informatics tools for genomic research.\14\
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\14\ https://www.genome.gov/news/news-release/NHGRI-establishes-
new-intramural-precision-health-research-program.
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The Cancer Moonshot is a second initiative supported by the Cures
Act. It aims to transform the way cancer research is conducted by
supporting immunotherapy networks, such as the Partnership for
Accelerating Cancer Therapies (PACT). Through PACT, the NIH is
collaborating with 11 pharmaceutical companies and the Foundation for
NIH to identify, develop, and validate biomarkers to advance new cancer
immunotherapy treatments. Improvements in immunotherapy over the past
decade have driven declines in mortality from lung cancer and melanoma;
however, progress in reducing rates for other cancers, including
colorectal, breast, and prostate cancers, has slowed.\15\ These
collaborations promise to discover new cancer treatments and harness
the ability of the body's immune system to fight cancer.
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\15\ https://www.cancer.org/latest-news/facts-and-figures-
2020.html.
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The Cures Act authorizes funding for these initiatives through the
Innovation Fund. The $3 billion increase requested by PMC in fiscal
year 2021 would ensure that the $404 million authorized by the Cures
Act this year would supplement the NIH's base budget, as Congress
intended, and thereby allow these important initiatives to continue.
iv. conclusion
PMC appreciates the opportunity to highlight the NIH's importance
to the continued success of personalized medicine. The subcommittee's
support for a $3 billion increase over the NIH's program level funding
in fiscal year 2020, in addition to supplemental funding received from
the Cures Act and COVID-19 emergency appropriations, will bring us
closer to a future in which every patient benefits from an
individualized approach to healthcare. PMC will gladly provide
additional information on the programs described in our testimony upon
request.
[This statement was submitted by Cynthia A. Bens, Senior Vice
President, Public Policy, Personalized Medicine Coalition.]
______
Prepared Statement of the Physical Science Education Policy Coalition
Dear Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee:
The Physical Science Education Policy Coalition (PSEPC) is a
diverse group of scientific non-profit organizations that works to
promote issues regarding all aspects of physical science education to
benefit both students and teachers.
We urge you to reject the White House's budget proposal for the
Department of Education to eliminate and replace the following
programs:
--Supporting Effective Instruction State Grants
--Student Support and Academic Enhancement Grants
--21st Century Community Learning Centers
Congress has authorized these programs to receive funding under
Title II and Title IV of Public Law No: 114-95, the Every Student
Succeeds Act (ESSA). ESSA helps bolster this country's domestic STEM
talent pipeline--and therefore our global competitiveness--by assisting
States in seizing the greatest opportunity to strengthen their own
physical science and STEM education programs. Therefore, we urge you to
fund these programs at current fiscal year 2020 authorized levels in
fiscal year 2021 appropriations.
Congress has shown that it appreciates the importance of high-
quality high school physical science teachers and informal STEM
learning programs by previously rejecting the White House's proposed
abolition of these programs for fiscal year 2019 and fiscal year 2020.
Instead, Congress funded them as part of the fiscal year 2019 Defense,
Labor-HHS-ED Consolidated Appropriations Act, and the fiscal year 2020
Further Consolidated Appropriations Act (Public Laws 115-245 and 116-94
respectively).
The White House's proposal for fiscal year 2021 would consolidate
29 existing programs,\1\ including the three listed above, into ``a new
$19.4 billion block grant to States.'' But according to the Department
of Education,\2\ only $6.8 billion would be appropriated for fiscal
year 2021, while the remaining funds would serve as an advance for
fiscal year 2022. Given that the Grants to Local Educational Agencies
under Title 1 of the Elementary and Secondary Education Act of 1965
(Education for the Disadvantaged) alone is currently funded at $15.9
billion, it is clear that it will be impossible to maintain current
funding levels for these programs in fiscal year 2021 should the White
House's proposal be accepted. Furthermore, even in subsequent years
when previously appropriated advances contribute to the Department of
Education's total Budget authority, a $19.4 billion grant will still
reduce the amount of money which States receive by $4.7 billion. Put
simply, this proposed consolidation is ultimately a budget cut.
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\1\ The White House Budget Request https://www.whitehouse.gov/wp-
content/uploads/2020/02/budget_fy21.pdf.
\2\ Department of Education fiscal year 2021 President's Budget
https://www2.ed.gov/about/overview/budget/budget21/21pbapt.pdf.
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The Supporting Effective Instruction State Grants, Student Support
and Academic Enhancement Grants, 21st Century Community Learning
Centers programs exist to solve persistent and troublesome problems in
education. In Missouri, the ESSA Consolidated State Plan published by
the Missouri Department of Elementary and Secondary Education (MO-DESE)
in 2019 \3\ states, ``MO-DESE has a single area of critical need for
state-level activities under Title IV, Part A, Subpart 1. A recent
statewide analysis of advanced course offerings in mathematics and
science indicated that a significant number of high schools do not
offer, and consequently a significant number of students do not have
access to, advanced coursework.'' Table 1 (below) presents data from
the report that provides examples of courses that have limited
availability to students. During 2016, 2017, and 2018, 3 years analyzed
in a recent statewide study, 451 high schools in Missouri--or 86
percent of all high schools in the state--have failed to offer a single
physics course. This equated to more than 26,000 junior and senior
students lacking access to a physics course during the 2016-17 school
year.
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\3\ Every Student Succeeds Act, Missouri's Consolidated State Plan
2019, p. 62 https://dese.mo.gov/sites/default/files/qs-ESSA-Plan-
2019.pdf.
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table 1
In Oklahoma, the 2018 Oklahoma Educator Supply & Demand Report \4\
found that the overall number of educators employed in Oklahoma's
public schools who have certificates in math and science has
consistently declined between 2012-13 and 2017-18. Certificates in math
and sciences declined by 10 percent and 21 percent, respectively.
Instead of loosening requirements for entry into the profession to
solve this problem, the Oklahoma State Department of Education (OSDE)
assembled a Teacher Shortage Task Force to implement changes that would
strengthen the teacher pipeline, thereby bolstering recruitment and
retention efforts in the state. The Oklahoma ESSA Consolidated State
Plan \5\ says, ``The complete elimination of Title II, Part A funding
would severely hamper the state's ability to achieve its goal of
reducing its need for emergency certified teachers. Title II, Part A
dollars are critical to Oklahoma's efforts to enhance meaningful
professional development offerings, provide support to teachers in
implementing rigorous academic standards and equip instructional
leaders who can support teachers and ultimately increase academic
achievement for all students.'' Unfortunately, the issues described are
components of a larger, nationwide, problem. Across the United States,
there is a significant shortage of highly qualified middle and high
school physics teachers. In a nationwide survey of teachers in US high
schools who taught at least one physics class, only 40 percent have a
major or minor in physics or physics education.\6\
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\4\ 2018 Oklahoma Educator Supply & Demand Report, p. 52-63 https:/
/sde.ok.gov/sites/default/files/documents/files/
Oklahoma%20Teacher%20Supply%20and%20Dema
nd%20Report%202018%20February%20Update.pdf.
\5\ Oklahoma ESSA Consolidated State Plan, p. 146 https://
www2.ed.gov/admins/lead/account/stateplan17/
okconsolidatedstateplan.pdf.
\6\ Who Teaches High School Physics? https://www.aip.org/sites/
default/files/statistics/highschool/hs-whoteaches-13.pdf.
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The solutions to the problems in Missouri, Oklahoma, and the
country at large depend on Federal funding. The Supporting Effective
Instruction State Grants (Title II-A) program helps by allowing States
to fund grants for teacher preparation programs. Title II-A funded
teacher preparation programs train teachers to deliver robust, high-
quality STEM education. The Student Support and Academic Enhancement
Grants (Title IV-A) and the 21st Century Community Learning Centers
(Title IV-B) gives States funding for out of school STEM programs to
enhance learning. Alongside organizations specifically dedicated to
enhancing the training of educators, such as PhysTec for the physical
sciences,\7\ these programs can solve the teacher shortage issue and
give American students world class educations in physical science and
other STEM fields.
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\7\ About PhysTec https://www.phystec.org/webdocs/AboutPhysTEC.cfm.
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A strong physical science background prepares students for success
in their university courses and careers, but this success is impossible
without highly qualified teachers who have deep knowledge of physical
science. We should all strive to ensure that our children receive the
best education possible.
Endorsed by the following member organizations:
American Association of Physicists in Medicine
American Association of Physics Teachers
American Astronomical Society
American Institute of Physics
American Physical Society
OSA-The Optical Society
[This statement was submitted by Mr. Elborz D. Mazanderan, American
Institute of Physics, Physical Science Education Policy Coalition.]
______
Prepared Statement of the Physician Assistant Education Association
On behalf of the 254 accredited physician assistant (PA) education
programs in the United States, the Physician Assistant Education
Association (PAEA) welcomes the opportunity to submit the following
testimony regarding the critical need for continued investment in
health professions education in fiscal year 2021. As illustrated
starkly by the COVID-19 pandemic and other emerging health crises,
ensuring that patients have access to timely, high-quality care is
dependent upon a strong Federal commitment to improving the supply,
distribution, and diversity of the national health workforce. As such,
PAEA joins with our colleagues to request a total of $790 million in
fiscal year 2021 for both the Title VII health professions and Title
VIII nursing programs. As the health professions education community
works to prepare the future health workforce, this level of support
will represent the investment necessary for programs to address key
challenges, pursue innovation, and promote quality patient care.
background on pa practice/current issues in pa education
Since the creation of the profession in the mid-1960s in response
to growing physician shortages, PAs have played a critical role in the
practice of medicine by ensuring timely access to quality care,
particularly in rural and underserved areas. Following the completion
of a rigorous, seven semester, curriculum consisting of both classroom-
based and clinical education, PAs have broad flexibility to fill
workforce gaps based upon their generalist training. During their
clinical education, PA students are required to complete one calendar
year of core rotations in family medicine, emergency medicine, internal
medicine, surgery, pediatrics, women's health, and behavioral health--
in addition to electives--providing them with the skill set necessary
for flexible practice throughout their careers. Currently, a plurality
of PAs practice in primary care, with over 25,000 primary care PAs
practicing in communities throughout the United States.\1\
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\1\ National Commission on Certification of Physician Assistants
(2019). 2018 Statistical Profile of Certified Physician Assistants by
Specialty. Retrieved from: https://
prodcmsstoragesa.blob.core.windows.net/uploads/files/
2018StatisticalProfileofCertifiedPAsbySpecialty1.pdf.
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To meet the projected 31 percent growth in PA practice openings
from 2018-2028, the number of accredited PA programs nationwide has
grown significantly in recent years, rising from 149 in 2010 to 250 in
2020, with more than 50 additional programs in development.\2\ While
this remarkable expansion appropriately reflects demand for PA
services, the rapid rate of growth has presented formidable challenges
as PA educators work to provide high-quality education to students. The
most acute concern is increased competition for clinical training sites
and clinician preceptors--a supply that has significantly contracted as
a result of COVID-19. Shortages of clinical training sites prior to the
pandemic have resulted in a growing number of programs being forced to
pay for training sites. According to PAEA's most recent survey of
members, 52 percent of programs nationwide, up from 27.9 percent as of
2015, are now paying for some or all of their clinical rotations at an
average cost of $245 per week, per student.\3\ Given the current lack
of dedicated Federal funding to support PA clinical training comparable
to Graduate Medical Education for physicians, this cost has ultimately
been borne by students in the form of higher tuition.
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\2\ Bureau of Labor Statistics. (2019). Physician Assistants.
Retrieved from https://www.bls.gov/ooh/healthcare/physician-
assistants.htm.
\3\ Unpublished data. Physician Assistant Education Association.
(anticipated publication 2020). By the Numbers: Program Report 35: Data
from the 2019 Program Survey.
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In the absence of a direct funding stream for PA clinical training,
a small number of PA programs have traditionally relied upon existing
Title VII programs to facilitate limited training opportunities. For
example, Primary Care Training and Enhancement (PCTE) grants have long
served as a critical resource for PA programs seeking to direct
graduates to practice in primary care through curriculum development
and clinical training experiences. In fiscal year 18, 577 PA students
graduated from a PCTE-funded program, well in excess of the 200 student
target set by HRSA.\4\ In addition to PCTE grants, Area Health
Education Centers (AHECs) partner with PA programs, along with other
health professions programs, to facilitate clinical rotations in rural
and underserved settings. In fiscal year 2018, AHECs throughout the
country supported clinical rotations for 12,385 health professions
students, including PA students.\4\ In fiscal year 2020, Congress also
appropriated more than $26 million to establish a Mental and Substance
Use Disorders Workforce Training Demonstration to support, among other
priorities, clinical rotations in behavioral health. Given the severity
of clinical training site shortages for PA programs, PAEA specifically
urges the Subcommittee to prioritize increased appropriations for PCTE
grants, AHECs, and the Mental and Substance Use Disorders Workforce
Training Demonstration in fiscal year 2021.
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\4\ Health Resources and Services Administration. (2020).
Justification of Estimates for Appropriations Committees. Retrieved
from: https://www.hrsa.gov/sites/default/files/hrsa/about/budget/
budget-justification-fy2021.pdf.
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covid-19 and maternal mortality
In addition to addressing the broader clinical training site
crisis, PAEA is also committed to preparing the future PA workforce to
respond to emerging public health issues, such as the COVID-19 pandemic
and maternal mortality. As an organization, PAEA's vision is Health for
All. The achievement of this vision requires the elimination of
persistent health disparities, and PAEA is particularly concerned with
both the elimination of clinical training opportunities for students as
a result of COVID-19 and rising rates of maternal morbidity and
mortality disproportionately impacting African American, Native
American, and Alaska Native women. According to a 2019 report issued by
the CDC, these women die from largely preventable pregnancy-related
causes at a rate three times higher than white women.\5\ PAs have a
critical role in addressing maternal health disparities once they enter
practice, however, competition for clinical training experiences in
women's health has been a particular barrier to ensuring students are
best-equipped to meet this challenge. According to a recent survey
report of PAEA member programs, 83.5 percent of programs that pay for
clinical sites currently pay for women's health rotations--the highest
rate of any required PA specialty rotation.\6\ Another report revealed
that 83.9 percent of programs characterized women's rotations to be
very difficult or difficult to obtain.\7\ To begin addressing this
issue, PAEA has endorsed H.R. 4995--the Maternal Health Quality
Improvement Act--which would authorize the Rural Maternal and Obstetric
Care Training Demonstration, a program which would support women's
health clinical training experiences in rural areas for PA and other
health professions students as a means of increasing access to care. In
fiscal year 2021, PAEA urges the Subcommittee to provide appropriations
at the proposed authorization level of $5 million.
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\5\ Centers for Disease Control and Prevention. (2019). Vital
Signs: Pregnancy-Related Deaths, United States, 2011-2015, and
Strategies for Prevention, 13 States, 2013-2017. Retrieved from:
https://www.cdc.gov/mmwr/volumes/68/wr/mm6818e1.htm?s_cid=mm6818e1_w.
\6\ Physician Assistant Education Association. (2018). By the
Numbers: Curriculum Report 3: Data from the 2017 Clinical Curriculum
Survey. Retrieved from: https://paeaonline.org/wp-content/uploads/2018/
10/paea-curriculum-report-33-20181015.pdf.
\7\ Physician Assistant Education Association, By the Numbers: 30th
Report on Physician Assistant Educational Programs in the United
States, 2015, Washington, DC: PAEA, 2015. doi: 10.17538/btn2015.001.
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promoting diversity
PAEA strongly concurs with the body of evidence supporting the
value of a diverse health workforce to address broader disparities
through the provision of culturally competent care.\8\ Traditionally,
underrepresented minority students have faced daunting financial and
other barriers in entering health professions education. According to
PAEA's most recent Student Report, these barriers have resulted in only
4 percent of matriculating PA students being African American and 7.8
percent being Hispanic compared to 13.4 percent and 18.3 percent of the
general population, respectively.\9\ PAEA is grateful for existing
Federal investments to promote diversity, such as Scholarships for
Disadvantaged Students (SDS), which provides PA programs and other
disciplines with the resources necessary to promote access to health
professions education for disadvantaged students who are more likely to
practice in underserved areas following graduation. In fiscal year
2018, SDS awards supported the training of 3,155 health professions
students, exceeding HRSA's target of 2,930 students.\4\ Prior to
matriculation, the Health Careers Opportunity Program (HCOP) plays a
complementary role by investing in K-16 health education programs that
help recruit diverse and disadvantaged students into the health
professions pipeline. In fiscal year 2018, 4,082 disadvantaged students
participated in structured HCOP programs, double HRSA's target of 2,000
students.\4\ PAEA strongly supports continued and increased investments
in the SDS and HCOP programs in fiscal year 2021.
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\8\ Cohen, J.J., Gabriel, B.A., & Terrell C. (2002). The Case for
Diversity in the Health Care Workforce. Health Affairs, 21(5). 90-102.
https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.21.5.90.
\9\ Physician Assistant Education Association. (2019). By the
Numbers: Student Report 3: Data from the 2018 Matriculating Student and
End of Program Surveys. Retrieved from: https://paeaonline.org/wp-
content/uploads/2019/08/sr3-program-report-20190814.pdf.
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fiscal year 2021 recommendation
As PA education programs across the nation work to prepare the
future PA workforce to address emerging health crises, continued
Federal commitment to address challenges such as clinical training site
shortages and workforce diversity is critical. To improve the supply,
distribution, and diversity of the national health workforce, PAEA
joins in the request of the health professions education community for
$790 million to support the Title VII health professions and Title VIII
nursing programs in fiscal year 2021. PAEA thanks the Subcommittee for
the opportunity to submit testimony and looks forward to continuing to
serve as a resource to members and staff.
[This statement was submitted by Howard Straker, EdD, MPH, PA-C,
President, Physician Assistant Education Association.]
______
Prepared Statement of the Planned Parenthood Federation of America
Dear Chairman Blunt and Ranking Member Murray,
Planned Parenthood is the nation's leading women's healthcare
provider and advocate and a trusted, nonprofit source of primary and
preventive care for women, men, and young people in communities across
the U.S as well as the nation's largest provider of sex education. As
experts in sexual and reproductive healthcare, we reach 2.4 million
people in our health centers, 1.2 million people through educational
programs, and see 177 million visits to our website every year. Backed
by more than 13 million supporters, Planned Parenthood Action Fund
works every day to defend access to healthcare and advance reproductive
rights at home and abroad. Through our international arm, Planned
Parenthood Global, we provide financial and technical support to over
100 innovative partners in nine countries in Africa and Latin America.
In the past decades, there has been considerable progress made
related to sexual and reproductive healthcare. For example, a 2016
Guttmacher documented that the U.S. was currently experiencing the
lowest level of unintended pregnancy in 30 years \1\ and the lowest
rate of abortion since Roe v. Wade was decided in 1973.\2\ Much of this
progress is due in part to increased access to healthcare services,
driven by strategic investments in family planning, access to birth
control, and other healthcare programs, and increased access to high-
quality, comprehensive sex education.
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\1\ Guttmacher Institute. U.S. Unintended Pregnancy Rate Falls to
30-Year Low; Declines Seen in Almost All Groups, but Disparities
Remain. March 2, 2016. https://www.guttmacher.org/news-release/2016/us-
unintended-pregnancy-rate-falls-30-year-low-declines-seen-almost-all-
groups. Accessed March 10, 2020.
\2\ New York Times. America's Abortion Rate Has Dropped to Its
Lowest Ever. September 18, 2019. https://www.nytimes.com/2019/09/18/
health/abortion-rate-dropped.html. Accessed March 11, 2020.
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However, there remain significant and unacceptable inequities in
health outcomes that are the result of longstanding systems of
oppression that deeply impact traditionally marginalized communities,
including persons of color, those with low-incomes, those who identify
as LGBTQ, and those who live at the intersection of structural racism,
inequality, sexism, classism, xenophobia, and other systemic barriers
to healthcare and other resources are among those most severely
impacted. The recent outbreak of the novel coronavirus and subsequent
COVID-19 pandemic is underscoring the inequities in access to
healthcare worldwide and is very likely to further exacerbate the
financial barriers to seeking care that is needed, including sexual and
reproductive health services.
On behalf of Planned Parenthood Federation of America (PPFA), I
respectfully request that while assembling legislation to provide
appropriations for fiscal year 2021 that you protect critical domestic
health and family planning programs while also increasing funding for
key programmatic priorities, including by:
1. Protecting and increasing funding for Title X--America's Family
Planning Program
Prior to 2019, the Title X program served more than four million
low-income individuals annually at nearly 4,000 health centers located
in every state plus the District of Columbia.\3\ The program provided
those with low-income with access to affordable basic primary and
preventive healthcare and family planning services, including
contraception services and counseling, cancer screenings, and STI
testing and treatment. Title X had a proven track record as being
highly effective, for example helping to prevent nearly one million
unintended pregnancies each year.\4\
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\3\ Fowler, C. I., Gable, J., Wang, J., & Lasater, B. (2017,
August). Family Planning Annual Report: 2016 national summary. Research
Triangle Park, NC: RTI International.
\4\ Frost JJ et al., Contraceptive Needs and Services, 2014 Update,
New York: Guttmacher Institute, 2016, https://www.guttmacher.org/
report/contraceptive-needs-and-services-2014-update.
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Over the objection of more than 110 public health and medical
organizations \5\ and, most importantly, the American people, the Trump
administration proposed and is now enforcing a gag rule that makes
significant changes to the program. The gag rule prohibits Title X
providers from giving their patients full and accurate information,
eliminates a longstanding requirement that Title X providers offer a
broad range of medically-approved contraception, and imposes onerous
and unreasonable physical and financial separation requirements for
abortion-related activities. It also contains a whole host of
additional provisions designed to reduce access to quality family
planning services in communities across the country, which effectively
dismantle the program as it has been run for nearly 50 years. Since
enforcement began in August 2019, the Guttmacher Institute recently
estimated that 981 clinics have since been forced out of the program
because of the gag rule which provided Title X-funded services to 1.6
million patients nationwide. Many states have seen drastic reductions
in both the number of Title X provider sites and capacity to provide
Title X services and today there are no longer Title X-funded services
being provided in six states--Hawaii, Maine, Oregon, Utah, Vermont and
Washington.
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\5\ Planned Parenthood Federation of America. More than 110 Family
Planning and Public Health Organizations Urge HHS Not to Undermine
Title X Family Planning Program Through ``Domestic Gag Rule.'' May 16,
2018. https://www.plannedparenthood.org/about-us/newsroom/press-
releases/more-than-110-family-planning-and-public-health-organizations-
urge-hhs-not-to-undermine-title-x-family-planning-program-through-
domestic-gag-rule?--ga=2.224895454.598872
098.1553546518-807812785.1551206749 Accessed March 11, 2019
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Now that Planned Parenthood health centers have been forced out of
the program, Title X and its underserved patients remain at risk unless
Congress acts to ensure the gag rule is blocked and Planned Parenthood
and other family planning providers have a pathway back into the
program. We strongly recommend that any increase in funding be paired
with protective language blocking the gag rule. We urge you to adopt
protective language similar to the fiscal year 2020 House language that
blocks implementation of the harmful gag rule and permits existing and
former Title X networks to rebuild and begin to reverse the damage
caused by this rule. With that language in place, we recommend you
appropriate $400 million for the program.
2. Providing Funding for STI and HIV Prevention at the Centers for
Disease Control and Prevention (CDC)
Sexually-transmitted infections (STIs) are a serious and growing
public health problem. In 2018, an annual CDC surveillance report
identified nearly 2.5 million cases of syphilis, chlamydia, and
gonorrhea diagnoses in the United States.\6\ This marked the fifth
consecutive year of increases in the rates of these STIs. Of particular
concern were cases of congenital syphilis--syphilis passed from a
mother to her baby during pregnancy--which increased 40 percent over
the previous year. The overall rate has nearly tripled over the past 5
years. Similarly, while progress has been made in recent years to
prevent new HIV infections, new data suggest that efforts have
plateaued at 39,000 new cases per year since 2013, driven by
disparities in progress amongst persons of color.
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\6\ Centers for Disease Control and Prevention (CDC). 2018 STD
Surveillance Report.
October 8, 2019. https://www.cdc.gov/nchhstp/newsroom/2019/2018-STD-
surveillance-report.html. Accessed March 11, 2020.
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Despite the CDC recommendation that all pregnant women be tested
for STIs, many women and other sexually active adults are not being
adequately tested, in part because of limited resources for screening.
The CDC's National Center for HIV/AIDS, Hepatitis, STIs and TB
Prevention (NCHHSTP) conducts critical public health surveillance, but
also funds screenings and other important activities. We ask that you
fund CDC/NCHHSTP at $1.921 billion for fiscal year 2021, including
$240.8 million for the Division of STD Prevention.
3. Protecting and Funding the Teen Pregnancy Prevention Program and the
CDC's Division of Adolescent School Health, Eliminating Harmful
and Ineffective Abstinence-Only-Until-Marriage Programs
As the nation's leading provider of sex education, Planned
Parenthood works in and with communities across the country to provide
outstanding sex education programs. Our educators see daily how vital
it is for young people to have access to sex education programs that
give them knowledge and skills they need to lead fulfilling, safe, and
healthy lives. However, today less than 43 percent of all high schools
and only 18 percent of middle schools provide education on all of the
CDC's identified topics that are critical to ensuring sexual health.
Since fiscal year 2010, the Teen Pregnancy Prevention Program
(TPPP) has supported projects and programs that deliver community-
driven, evidence-based or informed, medically accurate, and age-
appropriate approaches that incorporate involvement from parents,
educators, and health providers. Currently, 84 organizations in 33
states, the District of Columbia, and the Marshall Islands receive TPPP
funding. The positive outcomes of the program have been well-
documented. In September 2017, the bipartisan Commission on Evidence-
Based Policymaking, established by then-House Speaker Paul Ryan and
Senator Patty Murray, highlighted TPPP as an model example of a Federal
program that has developed evidence in support of good policy.
Despite this progress, the Trump-Pence administration proposes to
eliminate the program and has diluted its impact by awarding funding to
organizations and programs using abstinence-only-until-marriage (AOUM),
or so-called ``sexual risk avoidance'' frameworks. This is despite an
overwhelming body of evidence that has found that AOUM programs not
only fail to deliver results, but are ineffective at their primary goal
of young people delaying sex until marriage.
Planned Parenthood urges you to continue to provide $101 million
for TPPP, in addition to $6.8 million for dedicated evaluation transfer
authority. We also request additional bill and report language that
protects the integrity of the program, which has been subject to
unlawful attacks by the administration. Furthermore, urge you to
eliminate funding for the abstinence-only-until-marriage ``sexual risk
avoidance'' competitive grant program.
The CDC's Division of Adolescent and School Health (DASH) provides
funding to local education agencies across the country to implement
school-based programs and practices designed to prevent HIV and other
STIs among young people, and also integrates approaches aimed at
substance use and violence prevention. In addition, the program expands
the research and evidence base of how to best meet the respective needs
of young people, including LGBTQ youth and other adolescents.
Currently, DASH provides funding to 28 school districts across the
country. Providing a significant increase ($67 million over the fiscal
year 2020 enacted level) to DASH funding would considerably expand the
number served through this important program. We ask that you provide
CDC/DASH with $100 million in fiscal year 2021.
4. Eliminating Harmful and Discriminatory Legacy Riders That Undermine
Access to Abortion and Rejecting Any New Anti-Women's Health
Provisions
Opponents of sexual and reproductive health and rights have long
used the appropriations process to undermine women's access to
comprehensive reproductive care, including access to abortion. Through
policy riders in bills under the jurisdiction of multiple
subcommittees, including the original Hyde amendment in the Labor/HHS
bill, opponents have limited access for women on Medicaid. When elected
officials deny certain categories of women insurance coverage for
abortion, they either are forced to carry the pregnancy to term or pay
for care out of their own pockets. The result is unfair and
discriminatory policy that further exacerbates poor public health
outcomes for those who already face significant barriers to care. We
urge the Committee to eliminate all such coverage bans on women's
access to abortion. In addition, the Committee should reject the
multiple harmful new policy riders we have seen proposed in years past
that would roll back progress for women, including proposals to
``defund'' Planned Parenthood.
********
We welcome the opportunity to discuss these requests with you or
your staff. If you have questions about any of the above requests,
please don't hesitate to contact me [email protected]). For
more information about domestic priorities, please contact Jack
Rayburn, Director, Legislative Affairs ([email protected]).
Sincerely.
[This statement was submitted by Jacqueline Ayers, Vice President,
Government Relations and Public Policy, Planned Parenthood Federation
of America.]
______
Prepared Statement of the Population Association of America and the
Association of Population Centers
Thank you, Chairman Blunt and Ranking Member Murray for this
opportunity to express support for the National Institutes of Health
(NIH), National Center for Health Statistics (NCHS), Institute of
Education Sciences (IES), 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
2021, we urge the Subcommittee to adopt the following funding
recommendations: $44.7 billion, NIH; $189 million, NCHS; $670 million,
IES; and $658.3 million, BLS. Given the uncertainty of the ongoing
COVID-19 pandemic, PAA and APC also urge the subcommittee to consider
opportunities to provide necessary, additional funding for these
agencies in fiscal year 2021.
national institutes of health
Demography is the study of populations and how or why they change.
The health of our population is fundamentally intertwined with the
demography of our population. Recognizing the connection between health
and demography, NIH supports population research programs primarily
through the National Institute on Aging (NIA) and the National
Institute of Child Health and Human Development (NICHD). PAA and APC
thank Chairman Blunt and Ranking Member Murray for their bipartisan
leadership and for working together in recent years to provide the NIH
with robust, sustained funding increases. As members of the Ad Hoc
Group for Medical Research, PAA and APC recommend the Subcommittee
continue to prioritize NIH funding by endorsing an appropriation of at
least $44.7 billion for the NIH, a $3 billion increase over the NIH's
program level funding in fiscal year 2020. We urge that NIA and NICHD,
as components of the NIH, receive commensurate funding increases in
fiscal year 2021.
national institute on aging
The NIA Division of Behavioral and Social Research (BSR) is the
primary source of Federal support for basic population aging research.
In January 2020, the NIA National Advisory Council on Aging (NACA)
released a comprehensive review of the BSR Division The report
reinforced the value of the Institute's investment in an array of
population aging research activities, including large-scale,
longitudinal studies, such as the Health and Retirement Study, and
center programs, such as the Centers on the Demography and Economics of
Aging, which are conducting research on the demographic, economic,
social, and health consequences of U.S. and global aging at 11
universities nationwide. With additional funding in fiscal year 2021,
the BSR Division could continue to support these activities as well as
pursue recommendations that the NACA review identified, including
expanding research opportunities to advance our understanding of the
poor overall health of older people in America and the growing
disparities in some parts of the country.
eunice kennedy shriver national institute on child health and human
development
Since the Institute's inception in 1962, NICHD has had a clear
mandate to support a robust research portfolio focusing on maternal and
child health, the social determinants of health, and human development
across the lifespan. The NICHD Population Dynamics Branch meets this
mandate by supporting innovative and influential population science
initiatives, including: (1) large-scale longitudinal surveys, with
population representative samples, such as the National Longitudinal
Survey of Adolescent Health and Fragile Families and Child Well Being
Study; (2) a nationwide network of population science research and
training centers; and, (3) numerous scientific research initiatives
that have advanced our understanding of specific diseases and
conditions, including obesity, autism, and maternal mortality, and,
further, how socioeconomic and biological factors jointly determine
human health. With additional support in fiscal year 2021, the
Institute could continue supporting its large-scale data collection
activities and its Population Dynamics Centers Research Infrastructure
Program. Finally, with additional support to NIH overall, NICHD could
help achieve the goals of the agency's proposed research initiative to
reduce maternal mortality.
national center for health statistics
NCHS is the nation's principal health statistics agency, providing
data on the health of the U.S. population. Population scientists rely
on large NCHS-supported health surveys, especially the National Health
Interview Survey and National Health and Nutrition Examination Survey,
to study demographic, socioeconomic, and behavioral differences in
health and mortality outcomes. They also rely on the vital statistics
data that NCHS releases to track trends in fertility, mortality, and
disability. NCHS health data are an essential part of the nation's
statistical and public health infrastructure. In order to support
NCHS's continued work to monitor the health of the American people and
to allow the agency to make much-needed investments in the next
generation of its surveys and products, PAA, as a member of the Friends
of NCHS, recommends NCHS receive at $189 million in fiscal year 2021.
Our recommendation reflects an increase to NCHS's base budget of $14.6
million from its fiscal year 2020 appropriation, as well as the
formalization of an ongoing $14 million transfer from Surveillance,
Epidemiology, and Informatics as proposed in the President's fiscal
year 2021 Budget Request. We urge the Subcommittee to reject the
Administration's proposed $5.4 million cut to the agency, which would
have a devastating impact on NCHS's ability to continue to provide
timely, unbiased, and accurate data on Americans' health and could
result in the elimination of one of its primary health surveys.
bureau of labor statistics
Population scientists who study and evaluate labor and related
economic policies use BLS data extensively. The field also relies on
unique BLS-supported surveys, such as the American Time Use Survey and
National Longitudinal Surveys, to understand how work, unemployment,
and retirement influence health and well-being outcomes across the
lifespan. As members of the Friends of Labor Statistics, PAA and APC
are very grateful for $40 million programmatic increase that BLS
received in fiscal year 2020. It was the first meaningful increase that
the agency had received since 2009. We are also pleased that BLS
received $10 million in fiscal year 2020 to plan for a new youth cohort
for the National Longitudinal Survey of Youth (NLSY). As the
Subcommittee knows, the current NLSY 1979 and 1997 cohorts cannot
provide adequate information about teens and young adults entering the
labor market. PAA and APC hope that this planning process will provoke
a new, necessary NLSY cohort in fiscal year 2021. We urge the
Subcommittee to continue sustained support for the agency in fiscal
year 2021 by supporting the Administration's request, $658.3 million,
in fiscal year 2021.
institute of education sciences
PAA relies on the Institute of Education Sciences (IES),
particularly the National Center for Education Statistics (NCES) within
IES, for objective information on the condition of education in the
United States, including topics ranging from K-12 to post-secondary
education, teacher development, and school violence. PAA joins other
social science organizations in expressing concerns about inadequate
staffing at NCES and its adverse effect on the agency's ability to
manage its broad array of surveys and assure data quality and program
rigor. We urge the Subcommittee to exert careful oversight of this
situation and consider whether legislative language could be adopted in
the fiscal year 2021 bill to address it. Further, as members of the
Friends of IES, we ask that agency receive $670 million in fiscal year
2021.
Thank you for considering our support for these agencies as the
Subcommittee drafts the fiscal year 2021 Labor, Health and Human
Services and Education Appropriations bill.
[This statement was submitted by Mary Jo Hoeksema, Director,
Government and Public Affairs, Population Association of America and
the Association of Population Centers.]
______
Prepared Statement of Power to Decide
Dear Chairwoman Lowey, Ranking Member Granger, Chairwoman DeLauro
and Ranking Member Cole:
Power to Decide respectfully requests the following funding levels
within the fiscal year 2021 Labor, Health and Human Services,
Education, and Related Agencies (LHHS) appropriations bill, as well as
language protecting and restoring the integrity of key programs. Power
to Decide is a non-profit, non-partisan organization that works to
ensure that all young people-no matter who they are, where they live,
or what their economic status might be-have the power to decide if,
when, and under what circumstances to get pregnant and have a child. We
do this by increasing information, access, and opportunity.
Specifically, we request:
--$400 million for the Title X Family Planning Program accompanied by
language that blocks the domestic gag rule and begins to undo
its damage by allowing those entities that left the program a
way to rejoin it.
--$101 million for the Teen Pregnancy Prevention (TPP) Program
accompanied by language that ensures the program adheres to
rigorous standards of evidence and avoids biased or incomplete
information.
--$6.8 million under the Public Health Services Act for the
evaluation of teenage pregnancy prevention approaches,
including sufficient funding to support the Teen Pregnancy
Prevention Evidence Review administered by the Assistant
Secretary for Planning and Evaluation (ASPE).
title x family planning program
We request $400 million in funding for the Title X program for
fiscal year 2021. For five decades, Title X has played a critical role
in preventing unplanned pregnancy by offering low-income and uninsured
individuals' access to high-quality contraceptive services, preventive
screenings, and health education and information. Title X patients are
some of the most marginalized in the country. Two-thirds have incomes
at or below the Federal poverty level and forty percent are
uninsured.\1\ The services Title X supports save taxpayers $7 for every
$1 invested.\2\ Despite the significant return on investment, the
current $286.5 million funding level in fiscal year 2020 is $31 million
lower than the fiscal year 2010 level, which was already inadequate to
meet the need. Even prior to the devastating implementation of the
domestic gag rule, reduced funding over the last several years has
resulted in fewer patients served and more clinic closings. For
example, in 2018, Title X clinics served nearly 4 million women and
men, down 25 percent or 1.3 million patients from the 5.2 million
patients served in 2010. The current funding level is already
insufficient to meet the needs of those depending on Title X clinics,
but the implementation of the domestic gag rule has made things
dramatically worse. In addition to increased funding, we request
language that blocks the domestic gag rule and that provides a pathway
for entities forced out of the Title X program to rejoin. Nationwide,
more than 19 million women in need of publicly funded family planning
(with incomes at or below 250 percent of the Federal Poverty Level)
live in contraceptive deserts, where they lack reasonable access to a
clinic offering the full range of contraceptive methods.\3\ The
upheaval caused by the gag rule is only exacerbating these access gaps.
The gag rule has forced clinics to make an impossible choice--reject
funds that support their patients who might not otherwise be able to
afford family planning care or withhold information from patients about
abortion services. To date, 15 states have lost some or all of their
Title X funding, and an additional 15 states have lost funding to
individual clinics that are not replaceable in those communities
leading to more than 900 clinics losing Title X funding. Nationwide,
8.8 million women in need of publicly funded contraception across 390
counties have lost Title X resources in their communities.\4\ And it is
not only those who receive services directly paid for by Title X who
are losing access to birth control. Title X funds are critical to
keeping clinic doors open for thousands of clinics that also serve
patients who have insurance, such as Medicaid and Affordable Care Act
plans. Insufficient funding and forcing high quality providers out of
Title X both exacerbate disparities in access to family planning care,
falling hardest on people of color, people living in rural areas, and
people struggling to make ends meet. We urge you to help change this by
funding Title X at $400 million, blocking the domestic gag rule, and
beginning to reverse the damage done.
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\1\ Fowler, C. I., Gable, J., Wang, J., Lasater, B., & Wilson, E.
(2019, August). Family Planning Annual Report: 2018 national summary.
Research Triangle Park, NC: RTI International.
\2\ Frost J.J., Sonfield A., Zolna M.R., & Finer L.B. (2014).
Return on investment: A fuller assessment of the benefits and cost
savings of the US publicly funded family planning program. Milbank
Quarterly, 92(4): 667-720.
\3\ Power to Decide (February 2020). Contraceptive Deserts
Research, Retrieved on February 19, 2020 from https://
powertodecide.org/what-we-do/access/birth-control-access.
\4\ Power to Decide (November 2019). Impacts of the Domestic Gag
Rule, Retrieved on February 19, 2020 from https://powertodecide.org/
what-we-do/information/resource-library/impacts-domestic-gag-rule.
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teen pregnancy prevention (tpp) program
We request funding for the TPP Program at $101 million for fiscal
year 2021, the same as its current fiscal year 2020 funding level. We
also request that language be included that protects the program from
ongoing Administration efforts to subvert congressional intent.
Specifically, we request language that ensures the program adheres to
rigorous standards of evidence, avoids biased or incomplete
information, and provides accountability for the funding appropriated
by Congress.
The first two five-year cycles of grants have already made vital
contributions to the growing body of knowledge of what works for whom
and under what circumstance to prevent teen pregnancy. This has
included high quality implementation, rigorous evaluation (primarily
randomized control trials), innovation, and learning from results. The
September 2017 unanimously-agreed-to-report from the bipartisan
Commission on Evidence-Based Policymaking established by House Speaker
Paul Ryan and Senator Patty Murray highlighted the TPP Program as an
example of a Federal program developing increasingly rigorous
portfolios of evidence.\5\ Yet since 2017 the U.S. Department of Health
and Human Services (HHS) has repeatedly sought to eliminate or
undermine the TPP Program. This includes shortening the second cohort
of five-year grants (fiscal year 2015--fiscal year 2019) to only 3
years, until grantees prevailed in 11 lawsuits filed against the grant
shortening. Despite numerous and repeated inquiries from Congress,
attempts to remake the program continue, including a move away from
implementation of evidence-based interventions and rigorous evaluation.
We strongly urge appropriators to include language for fiscal year 2021
appropriations that both fully funds the TPP Program and includes
language that protects the program from ongoing efforts to subvert
congressional intent.
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\5\ Nick Hart and Meron Yohannes (eds.) Evidence Works: Cases Where
Evidence Meaningfully Informed Policy. (Washington, D.C.: Bipartisan
Policy Center, 2019). Retrieved on February 19, 2020 from https://
bipartisanpolicy.org/wp-content/uploads/2019/06/Evidence-Works-Cases-
Where-Evidence-Meaningfully-Informed-Policy.pdf.
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evaluation of teenage pregnancy prevention approaches
As part of the growing bipartisan commitment to evidence-based
policymaking, there's a recognition of supporting high quality
evaluation within Federal agencies. Congress has historically provided
a modest amount of dedicated funding to evaluate teen pregnancy
prevention approaches, including longitudinal evaluations. This
funding, in conjunction with the TPP Program, has contributed to
deepening our knowledge of what works to reduce teen pregnancy.
However, HHS has not in recent years used this funding for high quality
evaluations. That should be corrected in fiscal year 2021.
Appropriators should also specifically include sufficient funding to
continue the Teen Pregnancy Prevention Evidence Review administered by
ASPE, as they did through report language for fiscal year 2020. This is
an objective, systematic review using high quality evidence standards.
Such evidence reviews are recognized as a hallmark of evidence-based
policymaking and are an essential tool to compile and share a growing
body of evidence.
additional programs
In addition to funding for the aforementioned programs, we urge you
to provide adequate funding levels for other important programs that
contribute to improved reproductive well-being as part of broader
efforts. These programs include the Maternal and Child Health Block
Grant, the Centers for Disease Control and Prevention, and Community
Health Centers.
The TPP Program and the Title X Family Planning Program enjoy broad
bipartisan support.
In conclusion, 85 percent of adults support continued funding for
the TPP Program, and 75 percent favor continuing the Title X program.
These programs make sense. Helping to ensure that everyone has the
power to decide if, when, and under what circumstances to get pregnant
and have a child will improve opportunities for them and for the
country. We appreciate the budget constraints appropriators face and
respectfully urge you to support this request. If you have questions or
need additional information, please contact Rachel Fey, Senior Director
of Public Policy at [email protected].
______
Prepared Statement of Prevent Blindness
As the nation's leading nonprofit, voluntary organization committed
to preventing blindness and preserving sight, Prevent Blindness
appreciates the opportunity to submit testimony to the Subcommittee. We
are pleased that the year 2020 represents a unique opportunity to draw
attention to vision and eye health. As such, we respectfully request
the following allocations in fiscal year 2021 to the Department of
Health and Human Services Centers for Disease Control and Prevention
(CDC), National Center for Chronic Disease Prevention and Health
Promotion, to promote eye health and prevent eye disease and vision
loss:
--$5,000,000 for the CDC's Vision and Eye Health program to update
national prevalence estimates on vision impairment and eye
disease using the National Health Nutrition Examination Survey
(NHANES) and improve state and community-level interventions to
help prevent avoidable vision loss; and
--$4,000,000 to allow the CDC's Glaucoma program to continue to
improve glaucoma screening, referral, and treatment by reaching
populations that experience the greatest disparity in access to
glaucoma care.
vision and eye health and covid-19
As our nation continues to respond to the current novel coronavirus
pandemic, there is an increasing understanding of the need for
sustained investments in public health surveillance to stay ahead of
major disease outbreaks or crises. As we start to understand the long-
term impacts of COVID-19, we are concerned our national vision and eye
health problem will only become worse if patients cannot access eye
care treatments due to a loss or lack of comprehensive healthcare
coverage or if patients do not feel safe to seek treatment.
Additionally, as the majority of the United States is working from
home or learning in a virtual environment, Americans face increased
demands on their vision and eye health from prolonged, close exposure
to electronic devices such as smart phones, laptop computers, and
tablets. Additional research is needed to understand the long-term
impacts that these devices may have on our eyes-such as increasing
rates of myopia, dry eye, and eye strain-particularly as we may need to
extend these virtual work and learning circumstances into the fall and
winter.
We are still learning about this serious disease; however, we do
know there is an intersection between those at high risk for
complications of COVID-19 and those who live with eye disease or vision
loss-including the elderly and people with underlying conditions like
diabetes. Until we have assurance that a safe and affordable
vaccination for COVID-19 is readily available and can safeguard our
personal and public health, our only available proactive response to
this disease is preparation.
With updated data that illustrates who currently lives with vision
loss and eye disease, and who is most at risk for potentially blinding
conditions, we can develop strategies to ensure that patients can
safely seek eye care treatment without potentially exposing themselves,
their loved ones, their caregivers, and front-line providers to this
disease. We can ensure patients understand how to manage their eye care
treatment should social distancing guidelines continue in the future.
We can work with state and community leaders to develop cross-sector,
multilevel collaborations and interventions on vision and eye health
that ensure individuals living with vision loss can continue to safely
function in their own communities while taking necessary precautions.
We can also address the consequences of vision loss that overlap with
COVID-19, including social isolation, inability to self-care and manage
disease, improve telehealth and accessibility, improve access to COVID-
19 services including screening, testing, and treatment, and ensure
access to support services necessary for those with disability for
which social distancing requirements effectively cuts off critical
transportation.
Ultimately, we can develop guidelines based on evidence,
experience, and foresight to ensure that patients do not have to make
the choice between interruptions in their care (which, in some cases,
could lead to irreversible vision loss) or exposing themselves and
others to the serious risks of COVID-19.
our national vision and eye health problem
Vision and eye health enables many aspects of daily living no
matter your age, racial and ethnic background, or socio-economic
circumstances. With healthy vision, we can engage with the world around
us, learn in school, earn a living, and age independently with a high
quality of life. Public opinion polls conducted over the last 40 years
indicate that Americans consistently fear losing their vision second
only to fear of cancer. Yet, vision and eye health is often an
afterthought until changes to eyesight become noticeable and lost
vision is gone forever. Vision impairments and eye disease are chronic
conditions: they require ongoing treatment and management over the
course of one's lifetime. According to the Robert Wood Johnson
Foundation, eye disorders are the fifth leading chronic condition among
those aged 65 years and older and seventh across all age groups.\1\
Recent estimates from the CDC indicate that, in 2017, 93 million
Americans over the age of 18 (roughly 4 in 10) are at high risk for
vision loss. Of this population, 37.2 million (40 percent) did not see
an eye doctor or receive an eye exam in the last year. The CDC also
found that 8 million adults (roughly 1 in 11) needed eyeglasses but
could not afford them.\2\ The reality is that 75 percent of vision loss
is preventable with early detection and treatment; yet, patients
continue to face significant barriers such as costs of treatment,
coverage, lack of awareness of the importance of prevention, and gaps
in the healthcare system. The programs we are here to discuss today are
a critical first step in addressing these very preventable problems.
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\1\ 1 ``Chronic Care: Making the Case for Ongoing Care'' Robert
Woods Johnson Foundation, 2010. https://www.rwjf.org/content/dam/farm/
reports/reports/2010/rwjf54583.
\2\ Four in 10 US Adults Are At High Risk for Vision Loss, CDC
Vision Health Initiative, March 2020. https://www.cdc.gov/visionhealth/
resources/publications/high-risk-vision-loss.html.
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the costs of vision loss and eye disease
Vision problems are also incredibly costly, not just to the
individual but to our national healthcare system. Accounting for
private and public payments for medical care, long-term care, patients'
out-of-pocket costs, direct and indirect costs, lost productivity and
consequential lost tax revenue, our national costs on vision and eye
health amounted to $167 billion in 2019. According to national
forecasts, total expenditures on vision problems, due to an aging
population and changes in demographics, will reach $385 billion by 2032
and $717 billion by 2050. With this, the proportion of these costs paid
by government programs will increase from 32.6 percent to 41.14 percent
by 2050.
Vision impairment and eye disease often contributes to several
costly and chronic conditions, including: diabetes, injuries and death
related to falling, stroke, depression and social isolation, cognitive
decline, lack of mobility, and need for long-term care. Barriers in
access to care resulting from high costs, lack of transportation,
inability to prioritize eye care with other conditions, and poor health
outcomes exacerbate vision problems. Patients with vision loss
experienced longer hospital stays and high readmission rates, resulting
in $500 million in excess costs.\3\ With an aging population and a
working adult population who faces a rise in chronic diseases that
affect their vision and ability to maintain their own economic
independence through sustained employment, now is the time to invest in
our collective eye health.
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\3\ Morse AR, et al. JAMA Ophthalmology. 2019;doi:10.1001/
jamaophthalmol.2019.0446. Accessed 20/01/23 from: https://
www.ncbi.nlm.nih.gov/pubmed/30946451.
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vision and eye health at the cdc: saving sight and dollars
The CDC addresses our national vision impairment and eye disease
burden by conducting public health surveillance, research, and
evidence-based public health interventions designed to complement state
and community health efforts. From 1999--2008, NHANES included visual
examinations and from 2005--2008, it included ophthalmology
examinations to measure rates of eye disease that led to vision loss.
However, the 2005--2008 data set is the last collection of reliable
prevalence estimates of vision impairment and eye disease \4\ due to a
consistent lack of resources allocated to the CDC's vision and eye
health programs from fiscal year 2011 through fiscal year 2020. This
means that our best available data on our national vision loss and eye
disease burden is over a decade old with current state and community
interventions based on 12-15 year-old data. Without updated and
reliable data, we cannot begin to solve our burgeoning vision and eye
health crisis.
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\4\ Vision Health Initiative, CDC. National Health and Nutrition
Examination Survey https://www.cdc.gov/visionhealth/vehss/data/
national-surveys/national-health-and-nutrition-examination-survey.html.
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With $5 million appropriated to vision and eye health in fiscal
year 2021, the CDC can:
--Resume use of the NHANES to collect data on prevalence of diabetic
retinopathy, glaucoma, and vision loss,
--Determine rates of vision and eye examinations, measure rates of
visual acuity, screening tests, and visual functioning
assessment to determine gaps in access and patient education,
and
--Use this information to bolster state capacity to respond to the
needs of their communities with collaborative interventions and
targeted strategies to improve vision and eye health at the
state, local, or systems level.
We urge the Committee to direct $5 million to the CDC's Vision and
Eye Health program to resume use of this gold standard surveillance
instrument, and help ensure that we are doing everything we can to
protect Americans' eye health and sight.
glaucoma at the cdc
As well, we ask the Committee to maintain the CDC's work in
improving glaucoma screening, referral, and treatment particularly for
populations that face disparity in access to glaucoma care. The CDC
conducts glaucoma detection programs designed to reach populations that
are at highest risk for getting glaucoma. Two particular programs have
proven essential in providing direct glaucoma detection, referral, and
sustained eye care services through innovative service models that can
be spread to other areas with high-risk populations.\1\
University of Alabama (UAB) EQUALITY (Eye care Quality and
Accessibility Improvement in the Community): The UAB coordinated with
local optometrists to provide comprehensive eye exams and send high-
resolution retinal images to glaucoma specialists at the Department of
Ophthalmology for review, diagnosis, and a developed treatment plan.
Educational components included brochures, short consumer-oriented
videos, and posters placed in the vision centers. This program
successfully reached 651 participants with optometrists making 750
diagnoses by eye and 19 percent new detected cases of glaucoma. 88
percent of program participants were older than 40 years and 64 percent
were African-American.
Willis Eye Hospital: Willis Eye Hospital transported eye care
equipment to community sites (such as senior centers, residential
housing for seniors, faith-based organizations, health fairs, and
public health clinics) where a team of 4-7 technicians and a glaucoma
specialist provided free eye examinations and laser treatment. Services
were provided in 43 communities in Philadelphia with 1,649 people were
screened for glaucoma and 1,709 glaucoma diagnoses were made by eye.
This outreach also resulted in diagnosis of eye-related diseases in
1,462 eyes (1,140 of which were cataracts).
By maintaining the CDC's funding at $4 million in fiscal year 2021,
Congress will ensure that this essential work will continue for
Americans who need essential glaucoma care.
conclusion
Earlier this year, over 83 organizations including Prevent
Blindness sent a letter to this Committee with our collective
endorsement of these critical investments to the CDC's vision and eye
health programs. There is strong consensus among providers,
researchers, public health practitioners, community organizations, and
consumer and patient groups in the vision and eye health community that
these investments are important for safeguarding our ability to see
clearly, learn in school, engage with our communities, earn a
productive living, and maintain our independence through the aging
process.
On behalf of Prevent Blindness, our Board of Directors, and the
millions of people whom we represent at risk for vision loss and eye
disease, we stand ready to work with the Subcommittee and other Members
of Congress to advance these and other policies that will prevent
blindness and preserve sight.
[This statement was submitted by Jeff Todd, President & CEO,
Prevent
Blindness.]
______
Prepared Statement of the Pueblo de Cochiti
I write this testimony on behalf of the community members of the
Pueblo de Cochiti. The Pueblo is located in north central New Mexico
and a small Pueblo, rural in nature and an on-reservation population of
less than 1000 members. The Indian Health Service provides a 2-day
clinic per week in our reservation clinic. The Community Health
Representatives (CHRs) are the 'Boots on the Ground' tribal health
providers when no other health services are available in our Pueblo.
The small staff is our medical providers after Indian Health Service
staff leave. They provide prevention, intervention and direct services
such as home visits, health education, EMS, partner with local, state
and Federal health partners. They keep me informed of all health
matters related to our community and serve as liaison with all health
providers. The funding for this valuable community-based health program
is funded from the Indian Health Service under the appropriations cited
above. The elimination of such a service will leave Cochiti Pueblo with
minimal health providers in our rural community. We encourage your
support of the overall IHS budget and 2-3 percent yearly increases
since 2008, however, we realize there is still a huge need for public
health infrastructure in Native lands like the CHRs.
The current Coronavirus pandemic has deployed our CHRs in our
Pueblo. The CHRs along with a Public Health Nurse have made home visits
to each household on educating, communicating and referral contacts on
Coronavirus. The tribal leadership has been informed in our native
language on the Coronavirus public health concerns and possible actions
necessary. At times of confusing information, we need our own tribal
health staff to assure trust and plan of action necessary specific to
our population. On Friday March 13, 2020 I put in place a Public Health
Emergency on the Coronavirus-19 where the CHR's are working with the
different tribal programs to get correct information to the community.
This will be set in place for 30 days expiring
The President's budget request also proposes to combine funding for
CHR ($ 62.8 million in fiscal year 2020), Health Education ($20.56
million in fiscal year 2020) and nationalization of the Community
Health Aide Program ($5 million in 2020) into a new 'Community Health'
line item funded at $44.1 million. By combining all three-line items to
one would reduce the yearly funding by $44 million for all three
combined. All three-line items should remain as stated in the Indian
Health Care Improvement Act which authorizes the IHS budget and has
been institutionalized as line items. All 3-line items should be
increased as has been recommended by the Tribal Leaders IHS budget
formulation workgroup for the past few years. The workgroup put the CHR
program as priority in Native lands and the IHS budget should be funded
$9.1 billion. As demonstrated by the Coronavirus pandemic, the public
health infrastructure and services in our Pueblo communities need to be
staff and developed with additional CHR and public health funding. In
rural reservations, the CHRs and Community Health providers are the
first to respond in public health practice and protocol. You are now
seeing the confusion and misunderstandings of public health practices
as this will continue to occur if such programs are not funded
adequately.
Congress has a constitutional obligation to mandatory fund the
Indian Health Service budget and not remain as discretionary funding.
There is nothing discretionary about healthcare when lives are at
stake. The Pueblo de Cochiti has submitted testimonies on funding
healthcare in Native communities. As such, the Pueblo supports an
indefinite appropriation and separate line item for the section 105(l)
facility leases. This has forced IHS to take from services program
accounts to pay for these leases. This also forces the budget to take
from CHR, Health Ed and other line items from direct service tribes to
pay other contracting/compacting tribes on leases at the expense of
locally controlled public health services.
Although, not in the IHS budget, the Pueblo urge your immediate
support of a five-year reauthorization of the Special Diabetes Program
for Indians (SDPI). We have over 60 diabetics in our small community.
The SDPI funding has had a major impact in keeping our diabetic numbers
from increasing. SDPI has saved a lot of Medicaid and Medicare funding
but more importantly bought awareness and lifestyle changes to our
healthy residents.
We appreciate your continued support for Advance Appropriations to
keep our healthcare facilities and programs open during government
shutdowns. The IHS funded programs are direct service providers similar
to the VA and should be funded with no regard to political
grandstanding. My testimony highlights our Public Law 93-638 programs
contracted by the Pueblo as we can we provide culturally sensitive
services, but it also supports our tribal administration in
administering these programs. Thank you very much for your efforts in
protecting and promoting Native American healthcare.
Respectfully.
[This statement was submitted by Charles D. Naranjo, Governor,
Pueblo de Cochiti.]
______
Prepared Statement of the Puerto Rico Federal Affairs Administration
Dear Chairman Blunt and Ranking Member Murray:
Thank you for your essential support of Puerto Rico in the fiscal
year 2020 appropriations process. The Committee's support of the island
is invaluable as we continue our efforts to rebuild following the
devastation of Hurricanes Irma and Maria in September 2017, as well as
the earthquakes that impacted the southwest part of the island earlier
this year. With the support of Congress, we have made great progress,
but as you are aware, much remains to be done in order to rebuild
Puerto Rico and set the island on a path to full recovery and
reconstruction. With the shared goal of continuing the recovery and
prosperity of Puerto Rico, I, on behalf of Governor Wanda Vazquez
Garced, respectfully submit the following proposals for fiscal year
2021 Labor, Health and Human Services, Education, and Related Agencies
appropriations.
Funding of Puerto Rico's Medicaid Program:
The Government of Puerto Rico urges the Subcommittee to continue to
adequately fund Puerto Rico's Medicaid program by appropriating two
additional fiscal years of increased statutory cap funding at $3
billion respectively for fiscal year 2022 and fiscal year 2023, and
permanently establishing Puerto Rico's Federal Medical Assistance
Percentage (FMAP) at 76 percent. As you are aware, Puerto Rico and the
other U.S. territories are limited by statute for the FMAP at 55
percent and are subject to a capped block-grant funding from the
Federal Government mandated as by Section 1108(g) of the Social
Security Act (SSA). Unlike the states and Washington DC, which have
open ended Federal Medicaid funding, Puerto Rico has its Federal
Medicaid funding based on the annual rate of the Consumer Price index
for all Urban Consumers (CPI-U).
However, following the enactment of the Further Consolidated
Appropriations Act, 2020 (Public Law 116-94), Puerto Rico was allocated
a temporary increase in its FMAP to 76 percent, and is eligible to
receive up to $5.7 billion in capped funding for fiscal year 2020 and
fiscal year 2021 combined. To retain this amount in Federal funding,
Puerto Rico is required to meet certain program integrity benchmarks.
If Puerto Rico fails to meet the benchmarks, the FMAP shall be reduced
2.5 percent for every fiscal quarter but such reduction shall not
exceed 2.5 percent.
Puerto Rico's Department of Health (PRDOH) is working diligently to
ensure that the integrity measures are punctual and Federal funds are
properly spent for the Medicaid needs of the island. To ensure the
continuity and longevity of program integrity measures and goals of the
PRDOH, 2 years of additional funding would be required. Thus, Puerto
Rico's Medicaid program would require an estimated $3 billion for
fiscal year 2022 and fiscal year 2023 respectively, under a permanent
76 percent FMAP, to ensure the continuity of efforts and measures to
safeguard Puerto Rico's Medicaid program.
Transition of Puerto Rico's Medicaid Program:
The Government of Puerto Rico urges the Subcommittee to direct the
Secretary of the U.S. Department of Health and Human Services (HHS) to
commission a study on the health, medical, and economic benefits of
transitioning Puerto Rico's Medicaid program from a statutorily capped
block-grant at a 55 percent FMAP, to a state-like Medicaid program for
Federal funding purposes. The study should focus on the impacts of
eliminating the section 1108(g) funding cap for Puerto Rico and
allowing Puerto Rico's FMAP percentage to be based on Puerto Rico's per
capita income relative to that of the United States.
Medicaid is designed to treat our nation's most vulnerable
populations, including low-income families, the elderly, children, and
individuals with disabilities. The U.S. citizens of Puerto Rico suffer
from serious health conditions that require urgent care, including
mental health issues and chronic diseases such as cancer, diabetes,
Hepatitis C, and HIV. In the aftermath from the 2017 hurricanes and the
recent earthquakes, serious disruptions to services at hospitals and
other medical facilities have occurred. The exodus of providers and
infrastructure damage is so dire that in certain circumstances, it has
increased the risk from infectious diseases caused by unsanitary
conditions.
Given all the Federal and local resources invested to alleviate the
medical hardships faced by the U.S. citizens of Puerto Rico, we should
ensure the long-term prosperity of Puerto Rico's Medicaid program. By
examining the health, medical, and economic benefits of transitioning
Puerto Rico's Medicaid program to a state-like program, we will have
the information needed to provide the best healthcare results to
Medicaid beneficiaries on the island with Federal funding.
Improvements to Medicare Advantage in Puerto Rico:
The Government of Puerto Rico urges the Subcommittee to direct the
Centers for Medicare and Medicaid Services (CMS) to make improvements
to Medicare Advantage (MA) in Puerto Rico. MA in Puerto Rico has the
highest participation rate in the entire nation, at an estimated 75
percent, making MA in Puerto Rico the lowest payment rate with highest
number of duals in a MA plan. Seniors on the island have indicated they
appreciate MA's lower cost sharing, coordination of care, and other
benefits that help to meet their special healthcare needs. As more than
40 percent of citizens on the island live below the poverty line, these
factors are integral to beneficiaries.
To improve MA on the island, we urge the Subcommittee to direct CMS
to maintain the zero claims adjustment to use its administrative
authority to average geographic adjustment at .70. This would allow for
a solution to MA funding disparities in Puerto Rico to resolve the
persistent anomalies in the ``Fee-For-Service'' (FFS) program data. The
FFS basis for MA rate setting is rapidly eroding in Puerto Rico and no
longer aligns with the assumptions underlying its use for MA
benchmarks.
Furthermore, we ask that the Subcommittee to direct CMS to expand
MA coverage on the island to classify Part B premium support as a core
A/B benefit or full benefit dual-eligible individuals in Duals--Special
Needs Plans. This would enhance the capacity of MA plans to help dual-
eligibles under 82 percent of the Federal Poverty Level with the
payment of the Part B member premium. Allowing MA beneficiaries on the
island to be covered similarly to situated citizens in the states.
Thus, these improvements to MA will enable our more than 585,000
seniors to continue to get the necessary care they are entitled to
receive.
The National Survey on Drug Use and Health and the Inclusion of Puerto
Rico:
The Government of Puerto Rico urges the Subcommittee to fully fund
the National Survey on Drug Use and Health (NSDUH) and require the
inclusion of Puerto Rico in areas covered by the NSDUH. As you know,
the NSDUH provides up-to-date information on tobacco, alcohol, drug
use, as well as mental health related issues in the United States.
Since its inception in 1971, the NSDUH is conducted every year in all
50 states and in DC. However, Puerto Rico is not included in the areas
covered by the survey and is at a data deficit when developing
treatment and prevention plans to address the health and well-being of
the U.S. citizens on the island.
The collection of this data in Puerto Rico is urgently needed in
the wake of Hurricanes Irma and Maria, as well as the recent
earthquakes. The devastation caused by these natural disasters has
presented historic challenges to the U.S. citizens of Puerto Rico, that
will require a comprehensive approach to confront. Investment is not
only needed in our infrastructure, but the mental health and well-being
of the people of Puerto Rico. Therefore, fully funding the NSDUH and
including Puerto Rico in the survey will allow the island to assess the
actual substance abuse and mental health needs to adequately plan
methods to address these issues.
Additional Federal Funding for the Puerto Rico Mental Health and Anti-
Addiction Services:
The Government of Puerto Rico recommends that the Subcommittee to
fully fund the Substance Abuse and Mental Health Services
Administration (SAMHSA), which provides funding to Puerto Rico's Mental
Health and Anti-Addiction Services (ASSMCA per its Spanish acronym).
Following the 2017 hurricanes and the recent earthquakes, many of
Puerto Rico's U.S. citizens are suffering from post-traumatic stress
disorder (PTSD) and other mental health disorders. The goal of ASSMCA
is to ensure high-quality, cost-effective, evidence-based, and
integrated mental health services throughout the island. The
development and implementation of their innovative strategies are
further offered in an environment of respect and diversity. Thus, in
order to meet the vital mental health services necessary to treat those
affected by recent natural disasters in Puerto Rico, full funding of
SAMHSA and ASSMCA is essential.
Federal Funding for Puerto Rico's Department of Education:
The Government of Puerto Rico asks the Subcommittee to provide
adequate funding of $101,000,000 to Puerto Rico's Department of
Education (PRDE) and allow for the fungibility of disaster funds from
previous disaster supplementals to address the unmet educational needs
throughout Puerto Rico. Following the aftermath of the 2017 hurricanes,
several schools throughout the island remain unopened due to hurricane
damage and lack of adequate funding. Recent earthquakes have further
exacerbated the damage to educational facilities. The additional
funding will allow for remedial education training and for renting of
temporary facilities to begin courses. The fungibility of funding to
meet the educational unmet needs will provide for the expedient use of
already existing disaster funds to repair and alleviate the damage
caused by the recent earthquakes. Allowing the interchangeable use of
funds without limitation will enable the PRDE to continue its goals to
reopen schools, provide alternative facilities, and begin courses.
Individuals with Disabilities Education Act:
The Government of Puerto Rico urges the Subcommittee to provide
robust funding for the Individuals with Disabilities Education Act
(IDEA). IDEA makes available free appropriate public education to
eligible children with disabilities. IDEA allows students with
disabilities such as hearing impairment, language impairment, down
syndrome, cerebral palsy, autism, and other learning disabilities to
receive individual-specific services, programs, and resources. In the
aftermath of Hurricanes Irma and Maria, as well as the recent
earthquakes, several schools lack the adequate facilities or personnel
to meet the special education needs of students with disabilities. To
assess and guarantee the effectiveness of efforts to educate children
with disabilities, we must provide the proper tools to meet the
individual needs of each student. Therefore, to ensure that educators
and parents have the necessary tools to improve educational results for
children with disabilities in Puerto Rico, we request robust funding of
IDEA.
Third Party Fiduciary Agents' Scope on Grants Awarded to the Puerto
Rico Department of Education:
The Government of Puerto Rico urges the Subcommittee to direct the
Secretary of the U.S. Department of Education (ED) to commission an
independent study to identify the scope of stipulations by third-party
fiduciaries agent (TPFA), as well as establish specific timelines and
conclusion of third-party oversight of Federal funds granted through ED
to the PRDE. ED requires third-party fiduciary oversight, management,
and administration of ED grant funds services to PRDE. PRDE's
engagement of a TPFA is a specific condition established by ED for the
receipt of grant funds. However, TPFAs have slowed the progress and
recovery of schools throughout the island due to delay and uncertain
deadlines. Following the displacements of students and teachers
throughout the island as a result of this year's earthquakes, a
thorough and specific scope of authority with established timelines is
required for the expedient educational recovery of Puerto Rico.
The island-wide devastation suffered by Puerto Rico from Hurricanes
Irma and Maria, as well as the recent earthquakes, present historic
challenges to the 3.2 million U.S. citizens of Puerto Rico, the
Caribbean economy, and the United States Government. A full recovery
for Puerto Rico requires a sustained, comprehensive approach with
support from the Federal Government to tackle the numerous issues we
are now facing. On behalf of Puerto Rico, I thank you for your
continued support and leadership in Congress. I have faith that with
your support, Puerto Rico can and will make a full recovery.
If you require additional information or have any questions, please
do not hesitate to contact me at [email protected].
Sincerely.
[This statement was submitted by Jennifer M. Storipan, Esq.,
Executive Director, Puerto Rico Federal Affairs Administration.]
______
Prepared Statement of the Pulmonary Hypertension Association
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
priorities of the pulmonary hypertension (PH) community as you work to
craft the fiscal year 2021 L-HHS Appropriations bill.
about pulmonary hypertension
Pulmonary Hypertension (PH) is high blood pressure that occurs in
the arteries of the lungs. It reflects the pressure the heart must
apply to pump blood from the heart through the arteries of the lungs.
As with a tangled hose, pressure builds up and backs up forcing the
heart to work harder and less oxygen to reach the body. PH symptoms
generally include fatigue, dizziness and shortness of breath with the
severity of the disease correlating with its progression. If left
undiagnosed or untreated it can lead to heart failure and death. In
recent years, innovative treatment options have been developed and
approved for PH. The effectiveness of current treatment options depends
on accurate diagnosis and early intervention.
about pha
Headquartered in Silver Spring, Md., the Pulmonary Hypertension
Association (PHA) is the country's leading PH organization. PHA's
mission is to extend and improve the lives of those affected by PH. PHA
achieves this by connecting and working together with the entire PH
community of patients, families, healthcare professionals and
researchers. The organization supports more than 200 patient support
groups; a robust national continuing medical education program; a PH
clinical program accreditation initiative; and a national observational
patient registry.
health resources and services administration
Due to the serious and life-threatening nature of PH, it is common
for patients to face drastic health interventions, including heart-lung
transplantation. To ensure HRSA can continue to make improvements in
donor lists and donor-matching please provide HRSA with an increase in
discretionary budget authority in fiscal year 2021.
national institutes of health
Please provide NIH with meaningful increases--including at least
$44.7 billion in program funding in fiscal year 2021--to facilitate
expansion of the PH research portfolio so we can continue to improve
diagnosis and treatment. NHLBI and PHA have partnered on a
groundbreaking clinical study, the Redefining Pulmonary Hypertension
through Pulmonary Vascular Disease Phenomics (PVDOMICS) program (RFA-
HL-14-027 and RFA-HL-14-030). By collecting information from one
thousand participants with various types of PH, and 500 participants
without or at risk for PH, PVDOMICS hopes to find new similarities and
differences between the current WHO classifications of PH, which could
be a major step in learning about the disease and advancing patient
care. This research is intended to lead to identification of both
endophenotypes of lung vascular disease and biomarkers of disease that
may be useful for early diagnosis or for assessment of interventions to
prevent or treat PH.
proper health coverage and access
The PH community is concerned that the Centers for Medicare and
Medicaid Services (CMS) is allowing insurance payers to refuse to
accept charitable copay and premium assistance on behalf of patients
with complex, chronic and life-threatening conditions like PH. Because
of breakthroughs in research, PH patients are able to utilize life-
sustaining treatments that allow them to manage this potential fatal
condition and lead relatively normal lives. When patients are denied
access to financial assistance they are forced to choose between
necessities, between dramatically shortening their lives by giving up
medication in order to afford housing and food or continuing medication
while starting their families on the road to bankruptcy. We aware of
the Subcommittee's continued requests for an explanation of this
practice targeting rare disease patients. We ask that this Subcommittee
once again ask CMS to explain this decisions and also encourage them to
fix this problem that is greatly affecting the rare disease community.
PHA also asks the Subcommittee to urge CMS to increase incentives
for the supply of oxygen that affects all oxygen modalities including
both liquid and portable supplies. This increased flexibility will
increase patient's quality of life at home and in their communities.
patient perspectives
Lori was approved for Social Security Disability Assistance 2 years
ago as a result of her pulmonary hypertension. For the past 2 years,
she has been in the ``Medicare waiting period''--unable to work but not
yet eligible for Medicare. Lori purchased coverage through her state's
Health Insurance Marketplace during that time. Her plan fully covered
the costs for her life-saving medication. Now Lori is finally eligible
for Medicare, but she has been told that she will have to pay thousands
of dollars each month for the same life-sustaining medication that was
fully covered on her Marketplace plan. A financial grant from a non-
profit organization may be Lori's only hope of making ends meet.
Diane has a genetic form of pulmonary hypertension. She has a
younger sister with PH and they lost a brother to the disease.
Recently, a generic version of one of the therapies Diane takes to
manage her condition became available. Diane was automatically switched
to the alternate version by her specialty pharmacy. Within a few weeks,
Diane went from being able to comfortably walk more than seven miles a
day to barely being able to walk a mile. She describes her health at
that time as ``just as bad as before I was diagnosed.'' Declines like
the one Diane experienced are not always reversible. Fortunately,
however, Diane appears to be regaining her normal level of functioning
after returning to the original version of her therapy.
Before developing pulmonary hypertension, Doug was an architect
specializing in historic preservation. Being an architect was the only
thing he had ever wanted to do ``when he grew up.'' Doug spent 2 years
seeking an accurate diagnosis for his shortness of breath. During that
time, he was misdiagnosed with depression, sleep apnea, altitude
sickness and asthma. Ultimately Doug was diagnosed and treated, however
he had to give up his career due to his PH.
Thank you again for your consideration of the PH community's
priorities as you develop the fiscal year 2021 L-HHS Appropriations
bill.
[This statement was submitted by Mr. Brad A. Wong, President and
CEO,
Pulmonary Hypertension Association.]
______
Prepared Statement of Refugee Council USA
Chairman Shelby, Ranking Member Leahy, and members of the
subcommittee, thank you for this opportunity to submit these funding
and oversight recommendations for fiscal year 2021 on behalf of the 26-
member organizations of Refugee Council USA (RCUSA) \1\ dedicated to
refugee protection, welcome, and integration, and representing the
interests of refugees, refugee families, and volunteers and community
members across the country who support refugees and resettlement. RCUSA
recommends fiscal year 2021 funding levels of $4,692,446,000 for the
Department of Health and Human Services' Refugee and Entrant Assistance
(REA) account.
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\1\ A list of RCUSA member organizations can be viewed at
RCUSA.org.
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The REA account funds the Office of Refugee Resettlement (ORR)
within the Administration of Children and Families. ORR funding
provides critical Federal investments in the states and local
communities that welcome refugees, and is a crucial component of
fostering refugee integration and economic contributions. In addition
to new refugee arrivals, ORR funding provides essential services to
refugees who arrived in recent years, unaccompanied refugee minors,
asylees, Cuban and Haitian entrants, Special Immigrants Visa (SIV)
holders from Afghanistan and Iraq who served the U.S. mission in those
countries, survivors of human trafficking, survivors of torture, and
unaccompanied children. Through ORR programs and associated public-
private partnerships, in fiscal year 2020 the account is projected to
serve 171,420,\2\ and in fiscal year 2021, 159,520.\3\
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\2\ The FY20 figure includes: 18,000 refugees, 14,900 SIVs, 46,000
asylees, 22,520 Cubans/Haitians, 1,000 trafficking victims, and 69,000
unaccompanied children. We are on pace to assist 50,000 UCs, but trends
indicate that the numbers could spike up to 69,000.
\3\ The FY21 CBJ's figure includes: 90,520 new arrivals (incl.
18,000 refugees and 45,600 asylees). In addition, we estimate up to
69,000 UCs in FY21.
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RCUSA recommends an increase for the Transitional Medical
Assistance (TAMS) program; domestic and foreign-born trafficking
survivor services; and, torture survivor assistance. TAMS funds
critical initial assistance to refugees and other new arrivals;
programs for vulnerable unaccompanied refugee children; and the highly
effective Matching-Grant program, which leverages public funds with
private donations, empowering refugees to secure employment within 6
months. RCUSA appreciates the small increase in funding from fiscal
year 2020 to fiscal year 2021 for trafficking victims, to help serve
trafficking survivors, given the 962 percent increase in identified
victims in need of trauma-informed case management services since
2002.\4\ RCUSA commends as a step in the right direction the increase
in fiscal year 2019 and fiscal year 2020 to aid victims of torture, and
yet the services gap remains extraordinary. Approximately 44 percent of
the program's beneficiaries--refugees, asylees and asylum seekers--are
torture survivors. Even with the increased appropriation many programs
have wait lists and torture survivor populations across the country
have no access to services at all. We urge continued increases for
these urgent needs.
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\4\ This is based on the 2002 ORR report to Congress and the 2016
TIP report.
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The U.S. is one of roughly 27 resettlement countries. The U.S.
Refugee Admissions Program (USRAP) process begins with rigorous
screening to determine that applicants qualify for refugee status and
are not a security risk. The U.S. admits a small percentage of the
world's refugees, often the most vulnerable, for resettlement
(including unaccompanied refugee minors) through the USRAP. Refugees
arriving through the USRAP, along with Iraqi and Afghan SIV recipients,
are placed with one of nine voluntary nonprofit resettlement agencies
that have signed a Cooperative Agreement with the State Department and
have local affiliates in over 200 sites in communities around the
country. Six of the nine voluntary agency networks are faith-based, and
harness the energy of many faith communities to help welcome newcomers
to their new communities. These community organizations ensure that a
core group of services are provided during the first 30-90 days after a
refugee's arrival, including the provision of food, housing, clothing,
employment services, follow-up medical care, and other necessary
services. After this initial period, ORR funds integration services
through both the states and community partners around the country.
Once refugees arrive in the U.S., they are supported to become
oriented to the community, learn English, enroll their children in
school, and find employment. With this crucial support, they often are
not only able to support themselves and their families but also become
contributors to their new communities, integrating with and bringing
innovation to our neighborhoods. The following highlights critical
programs within the REA account, but does not include all program
activities:
Transitional & Medical Services (TAMS)
Matching Grant Program: The Matching Grant Program, a public-
private partnership, is ORR's most successful program to help refugees
achieve early self-sufficiency. It empowers refugees and other eligible
individuals to become self-sufficient within 6 months without needing
to access Federal or state assistance programs. The program leverages
public funds with private donations at a 2:1 ratio, with
nongovernmental agencies working hand-in-hand with local communities to
match Federal government contributions with private resources.
Unaccompanied Refugee Minors: Unaccompanied refugee minors (URM)
are among the most vulnerable of refugees, and the U.S. is the only
country that permanently resettles them. URM have been lost or
separated from their parents and families and have often suffered
greatly not only in their home country but also in countries near their
homelands where they have sought refuge. This is a small but crucial
U.S. program to protect the most vulnerable of these at-risk children
and provide them a new life in the U.S.
Refugee Support Services (RSS)
In fiscal year 2018, the Administration merged the administration
of Refugee Social Services and Targeted Assistance into one new
program, Refugee Support Services; Congress also continues to require
funding for the Refugee Health Promotion program and ORR is providing
it as an RSS set aside. Congress has not allocated less than $200
million cumulatively for these three programs in at least 15 years, not
even taking inflation into account. RCUSA recommends a small increase
in TAMS and RSS funding to account for cost of living, ongoing
integration needs of ORR populations of concern, and to assure gap
filling caused by reduced numbers of Reception and Placement sites.
RSS supports initial employability services and other integration
services that address initial barriers to employment. It is provided to
states and non-profit organizations based on formula pertaining to
anticipated refugee and other arrivals and competitive grants.
Additionally, school Impact funding, provided through a formula in the
RSS program, supports impacted school districts with the funds
necessary for activities, like English as a Second Language
instruction, that will lead to the effective integration and education
of vulnerable children.
RSS additionally, provides support to states with particularly high
refugee arrivals, including via secondary migration, and services to
refugees requiring longer term employment support. It also provides
specialized services to meeting the unique needs of certain groups,
such as youth programming and career development for higher skilled
refugees looking to recertify in their field.
Finally, RSS supports critical healthcare investments by offering
grants which helps refugees navigate the U.S. healthcare system. It is
awarded competitively and helps fund State Refugee Health Coordinators,
provide language access at Federal healthcare centers, and supports
mental health screening of refugees, among other things. RCUSA strongly
opposes the proposed elimination of RHP.
Survivors of Trafficking
Since the passage of the Trafficking Victims Protection Act in
2000, victims of human trafficking have received case management
services through HHS's partnership with NGO providers, including
assistance obtaining and referrals to medical and psychological
treatment, housing, educational programs, life skills development,
legal services, and other assistance. Funding is also utilized to
promote public awareness, training, and coalition building to raise
awareness about human trafficking among law enforcement, social
services, medical staff, and other potential first responders, in
addition to other to other faith-based and community groups. These
grants are crucial to providing victims, including children,
integrative aid and services once they have been identified as a victim
of trafficking. Increased funding to $20 million for each domestic and
foreign-born victim is requested to adequately serve trafficking
survivors. This funding is critical due to the increases in victim
identification efforts. In fact, there has been a 843 percent increase
in the number of foreign-born individuals served by the program from
2003 to fiscal year 2016.
Survivors of Torture
The Services to Survivors of Torture grant program, which was first
authorized with strong bi-partisan support in 1998 by the Torture
Victims Relief Act (PL 105-320-OCT. 30, 1998), funds non-profit
organizations to provide healing, legal, and social services to
refugees, asylees and asylum seekers who endured torture abroad and now
reside in the U.S. These holistic, trauma-informed services play a key
role in helping survivors restore their dignity and health, rebuild
their lives, and integrate into communities and economies. In
particular, torture rehabilitation has proven to have significant
positive impacts on employment and healthcare cost savings. RCUSA's
proposed $28 million for torture survivor assistance reflects that many
programs have wait lists and large survivor populations across the
country have no access to services at all.
Unaccompanied Children (UCs)
In fiscal year 2017, 40,894 children were referred to the custody
and care of the Office of Refugee Resettlement (ORR). ORR provides
children in its care with food, shelter, and clothing as well as
educational, medical, mental health, and case management services. For
a limited number of children, ORR provides family reunification
services by social services providers; specifically, ``home studies''
to help ensure children are released into safe placements and ``post-
release services'' to facilitate family and community integration after
reunification. Post-release social services by providers are an
important means of assuring the continued well-being and adjustment of
the children and preventing such dangers as human trafficking. Post-
release services also help families to understand the child's legal
obligations as well as provide critical protection and support to the
families themselves as the children are integrated into their new
communities. These practices not only promote child safety, but they
can help reduce the need for involvement with the public child welfare
system post-release. RCUSA recommends an increase to at least $1.983
billion in base UC funds for these programs that promote successful
family reunification and stability, which serve the best interest of
the children. RCUSA does not support an expansion of detention,
including through use of large-scale institutional facilities, or
efforts to support forced family separation.
Our nation's historic commitment to refugees through domestic
resettlement provides lifesaving support and protection to the world's
most vulnerable. Our nation's historic commitment to displaced
populations helps us build strategic alliances and stabilize those
regions most affected by the largest displacement crisis in global
history. This helps keep America safe. Thank you for considering our
funding recommendations for fiscal year 2021.
ORR Contingency Fund
Numerous times in the last decade, ORR has had to reprogram funds
from within or outside the agency to maintain vital services for
refugees, unaccompanied children and other populations of concern. This
occurred for example in 2012 ($115 million), in 2014 ($94 million), in
2018 ($446 million), and in 2019 ($385 million). These major shortfalls
in the last decade demonstrate that ORR and the vulnerable populations
that it serves need stronger financial footing. To avoid future
destabilizing reprogramming, RCUSA supports the Administration's
request for a $2 billion contingency fund for UCs so that ORR can
flexibly meet urgent and unanticipated needs of the vulnerable
populations that it serves. However, RCUSA requests that the $2 billion
be available for ORR to utilize in a single year and that $100 million
of the contingency fund go toward replenishing the TAMS and RSS
programs. To the extent Congress does not appropriate an ORR
contingency fund, Congress should ensure that the $2 billion is added
to base funding for UCs.
RCUSA Urges Congress to Support Stabilization of Resettlement
Infrastructure
Finally, RCUSA urges Congress to encourage the Office of Refugee
Resettlement (ORR) to ensure that resettlement agencies are able to
maintain their infrastructure and capacity to continue to serve
refugees and other populations of concern. RCUSA also expresses concern
that the administration failed to conduct appropriate consultation with
Congress regarding the fiscal year 2020 Presidential Determination and
direct a report to assess the impact that the extended moratorium on
refugee arrivals had on refugees in the pipeline. RUCSA urges Congress
to hold the administration accountable in meeting the fiscal year 2020
Presidential Determination of 18,000, and returning the refugee
admissions ceiling to the historic average of 95,000 in fiscal year
2021.
______
Prepared Statement of the Regional Centers of Excellence
in Vector-Borne Diseases
Dear Chairman Blunt and Ranking Member Murray:
On behalf of the Regional Centers of Excellence in Vector-Borne
Diseases, we the undersigned write to express our strong support for
efforts related to vector-borne diseases (VBDs) at the Centers for
Disease Control and Prevention (CDC). We urge you to provide at least
$8.3 billion for CDC in the fiscal year 2021 Labor, Health and Human
Services, Education, and Related Agencies appropriations bills, with
full funding for VBD efforts authorized by the Kay Hagan TICK Act and
the Pandemic and All Hazards Preparedness and Advancing Innovation Act.
Many notorious public health threats, such as the pathogens which
cause Lyme disease, Zika, West Nile, and malaria, are transmitted by
tick and mosquito arthropod vectors. Between 2004 and 2016, reported
human cases of diseases transmitted through the bites of arthropod
vectors tripled in the United States. Disease vectors also pose
significant threats to both livestock and companion animals. These
issues stem from not only native ticks and mosquitoes, but also the
introduction of new species to our communities, as evidenced by the
recent identification of the invasive Asian longhorned tick in the
eastern US.
The five Regional Centers of Excellence in Vector-Borne Diseases
were established by the CDC in December 2016 to support our public
health infrastructure aimed at combatting these threats. We conduct
applied research to develop and validate effective prevention and
control tools to respond to VBD outbreaks, train current and future
public health entomologists in the skills required to address VBD
threats, and support effective collaborative relationships between
academic and public health communities across our regions. Solutions to
addressing the growing menace of VBDs in the United States are complex
and require robust, dedicated, and sustained funding now more than
ever.
As your subcommittee considers fiscal year 2021 funding levels for
CDC, the Regional Centers of Excellence in Vector-Borne Diseases
encourage you to include at least $66.195 million in funding for the
CDC's Division of Vector-Borne Diseases (DVBD), as was proposed in the
President's Budget Request for fiscal year 2021, to support VBD
prevention, surveillance, testing, and response activities.
Our collaborative networks applaud the recent passage of the Kay
Hagan TICK Act, a provision in the fiscal year 2020 Further Consolidate
Appropriations Act, H.R. 1865, signed into law by the President on
December 20, 2019 (Public Law 116-94); and the Pandemic and All Hazards
Preparedness and Advancing Innovation Act, which in Section 607,
Strengthening Mosquito Abatement for Safety and Health (SMASH), details
support for important mosquito abatement activities. Providing the full
level of funding authorized by these important pieces of legislation
would be highly effective in facilitating the development and
implementation of a national strategy to combat VBDs.
The Kay Hagan TICK Act authorizes $20 million to support the CDC
Epidemiology and Laboratory Capacity (ELC) grant program. The ELC
program is particularly important for efforts related to the
surveillance, detection, response, and prevention of infectious
diseases, including VBD. Last year the CDC's DVBD received requests for
nearly $50 million from the state departments of health for VBD through
the ELC program. However, the DVBD was only able to support $18.2
million, roughly a third of the needed resources to address VBDs across
the nation.
The Kay Hagan TICK Act also authorizes $10 million per year to
support the continuation of our five Regional Centers of Excellence in
Vector-Borne Disease programs. Continued support will allow us to build
on the successes achieved since 2016 in supporting surveillance
efforts, translating research findings and information into public
health action, and promoting outreach and education to empower our
communities.
The CDC is the first line of defense for our nation's health,
safety, and security, and it is crucial that the agency has the
resources it needs to protect Americans from serious threats like VBDs.
On behalf of our collaborative network of stakeholders invested in the
mission to reduce the ongoing as well as emerging threats posed by
ticks, mosquitoes, and other arthropod vectors, we thank you for your
commitment to this critical issue.
Sincerely,
Lyric Bartholomay, PhD, Program Co-Director
Susan Paskewitz, PhD, Program Co-Director
Midwest Center of Excellence for Vector-Borne Diseases
Laura C. Harrington, PhD, Program Director
Northeast Regional Center for Excellence in Vector-Borne Diseases
Christopher M. Barker, PhD, Program Co-Director
William Walton, PhD Program Co-Director
Pacific Southwest Center of Excellence in Vector-Borne Diseases
Rhoel R. Dinglasan, PhD, MPH, Program Director
Southeastern Center of Excellence in Vector-Borne Diseases
Scott C. Weaver, PhD, Program Director
Western Gulf Center of Excellence for Vector-Borne Diseases
______
Prepared Statement of Research!America
On behalf of Research!America and our alliance, which advocates for
science, discovery, and innovation to achieve better health for all,
thank you for this opportunity to submit testimony to the Senate
Appropriations Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies on fiscal year 2021 appropriations. We
are grateful that for fiscal year 2020, the base budgets of the
National Institutes of Health (NIH), the Centers for Disease Control
and Prevention (CDC), and the Agency for Healthcare Research and
Quality (AHRQ) were increased and the Subcommittee additionally
provided dedicated funding for critical research programs. We again ask
that you provide increased funding for NIH (least $44.7 billion), CDC
($8.3 billion), and AHRQ ($471 million) in fiscal year 2021.
the national institutes of health
Each year, more than 125,000 Americans lose their lives by age 45
to physical and mental illness. Because personal loss is a tragedy, not
a statistic, it is impossible to fully capture the devastating impact
of so many lives cut short. However, it is possible to deploy science
to successfully fight back. The research that NIH funds delivers
health, social, and economic benefits that endure and multiply as time
goes on. With the current level of investment, NIH is only able to fund
20 percent of the meritorious grant proposals it receives. The
steadfast commitment of Federal policymakers from both sides of the
aisle to rebuild the NIH budget over the past decade has helped restore
our nation's place at the cutting edge of medical progress. It is
essential that we keep up that mantle and gain the upper hand over
diseases that rob us of time, independence, and loved ones.
The NIH is the world's leading funder of basic biomedical research,
and Americans recognize the value this research delivers. According to
a national survey Research!America commissioned in January 2020, 88
percent of Americans believe it is important for Congress and the
President to assign a high priority to faster medical progress. As it
stands, our nation spends about 5 cents of each health dollar on
research to prevent, cure and treat disease. Some 61 percent of
Americans say that this level of investment is not enough. Americans
want medical progress, and they want the U.S. to do more to drive it.
More than 80 percent of NIH funding is awarded through almost
50,000 competitive grants to more than 300,000 researchers at over
2,500 universities, medical schools, and other research institutions in
every state. Research supported by NIH is typically at the early, non-
commercial stages of the research pipeline; NIH funding works in tandem
with critical private sector investment and development while
delivering significant economic benefits. Basic research funded by the
NIH fuels the entry of new drugs into the market, providing an
estimated return on public investment of $1.43 for every dollar
invested. The Human Genome Project has produced $1 trillion of economic
growth--a 178-fold return on investment. The NIH also plays an integral
role in educating and training America's future scientists and medical
innovators by sponsoring fellowships and training grants.
NIH advances the interests of America and Americans in other
crucial ways. For example, NIH is funding a new genome center for the
All of Us Research Program, which will enable researchers to better
understand the value, including the strengths and limitations, of long-
read sequencing as it relates to exploring more elusive parts of the
genome. The Brain Research through Advancing Innovative
Neurotechnologies (BRAIN) Initiative, of which NIH is a part, is aimed
at revolutionizing our understanding of the human brain. The Initiative
is working to accelerate the development and application of innovative
technologies, through which researchers will be able to draw a new
picture of the brain that, for the first time, shows how individual
cells and complex neural circuits interact in both time and space.
We believe it is in the strategic interests of the U.S. to increase
funding for NIH to at least $44.7 billion in fiscal year 2021, an
increase of $3 billion over fiscal year 2020 enacted. Research!America
believes this funding increase is warranted by the ever-growing
magnitude of our health challenges, including the ongoing COVID-19
pandemic, the tangible and intangible costs of inaction, and the
undeniable return on medical progress.
the centers for disease control and prevention
We urge you to fund the Centers for Disease Control and Prevention
(CDC) at a level of $8.3 billion in fiscal year 2021, a 4.8 percent
increase. As demonstrated by the ongoing COVID-19 pandemic, public
health threats do not respect international borders, and in our
increasingly globalized world, we are more vulnerable than ever to
emerging, deadly infectious diseases.
CDC's work is also crucial to combating the opioid epidemic, which
is claiming approximately 130 American lives each day, and to tackling
antimicrobial resistance. Our public health surveillance infrastructure
is vital to a secure and prosperous future for our nation as are our
roads and highways--we cannot afford to ignore it.
CDC is tasked with protecting and advancing the nation's health,
and over the past 70 years it has worked diligently to thwart deadly
outbreaks, costly pandemics, and debilitating disease. Moreover, CDC
plays a key role in research that leads to life-saving vaccines,
bolsters our nation's defense against and response to bioterrorism, and
improves health tracking and data analytics. CDC's work has benefited
Americans in myriad ways, including investigating an outbreak of acute
lung injury from use of e-cigarette or vaping products, supporting our
national surveillance infrastructure to detect and prevent
antimicrobial resistant infections, providing accurate and accessible
health information, and preventing millions of hospitalizations.
Ebola, Zika, influenza, the opioid epidemic, measles outbreaks,
and, most recently, the ongoing, novel COVID-19 outbreak have shown
just how critical CDC is to the health of our nation and have also
revealed the enormity of the challenge the agency faces as it works to
safeguard American lives. To protect us, CDC scientists must be on the
ground fighting public health threats wherever and whenever they occur.
But there is a growing gap between the funding provided to CDC and the
demands and challenges placed before the agency. We request that CDC
receive at least $8.3 billion in fiscal year 2021, $380 million over
fiscal year 2020 enacted, to carry out its crucially important
responsibilities.
agency for healthcare research and quality
AHRQ is the lead Federal agency that is tasked with making sure our
nation is not just making medical progress but that this progress
translates into more effective, efficient, and affordable healthcare
for Americans across the country. The health services research that
AHRQ conducts and supports has reduced medical errors, ensured that
providers in rural areas have the same access to cutting-edge medicine
as those in urban areas, identified ways to squeeze out costly
duplication and waste from the healthcare system, and benefited
patients and taxpayers in numerous other ways. AHRQ has historically
been grossly underfunded relative to the need and potential for cost-
and life-saving improvements in American healthcare delivery. We urge
you to fund AHRQ at a level of $471 million, a 39 percent increase over
fiscal year 2020 enacted, in fiscal year 2021.
AHRQ is one of the Federal agencies responsible for ensuring
medical progress translates into better patient care. The value of
medical discovery and development hinge on smart healthcare delivery.
Out of the $3.82 trillion in annual spending on healthcare, an
estimated 25 percent could be prevented by addressing errors and
inefficiency.
AHRQ-funded research identifies and addresses this waste of limited
healthcare dollars, empowering patients to receive the right care at
the right time in the right settings. For example, AHRQ-funded research
has helped identify methicillin-resistant Staphylococcus aureus (MRSA),
which causes 80,000 invasive infections each year in the U.S., in long-
term care facilities to address the increase of hospital patients
affected by healthcare-associated infections. This research showed that
MRSA infections and hospitalizations were reduced by 30 percent in
patients using a treatment that cleansed the bacteria from their skin
or noses. AHRQ-funded research has played a pivotal role in reducing
hospital-acquired conditions by nearly 1 million from 2014-2017, saving
lives and $7.7 billion in healthcare costs.
AHRQ is a nimble and critical healthcare investment. If we
underinvest in AHRQ, we are inviting unnecessary healthcare spending
and wasting the opportunity to ensure patients receive the quality care
they need.
We appreciate your consideration of our funding requests and thank
you for your stewardship over these critically important Federal
spending priorities.
Sincerely.
[This statement was submitted by Mary Woolley, President and CEO,
Research!America.]
______
Prepared Statement of the Restless Legs Syndrome Foundation
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, as you work to develop the fiscal year 2021 Labor-
Health and Human Services Appropriations bill, thank you for
considering the views of the community of physicians, researchers,
patients, and caregivers affected by Restless Legs Syndrome (RLS).
Please keep the needs of this community in mind, especially as you
continue to work to address the opioid crisis.
about the rls foundation
The Restless Legs Syndrome Foundation is a nonprofit Sec. 501(c)(3)
organization dedicated to improving the lives of men, women, and
children living with this often-devastating neurological condition. The
Foundation works to increase awareness, improve treatments, and support
research to find a cure. From a few volunteers meeting in a member's
home in 1992, the Foundation has grown steadily; it now has members in
every state, local support groups, and a track record that includes
over $1.8 million provided to support translational research.
about rls
Restless legs syndrome (RLS) is essentially an irregular biological
drive, like hunger or thirst, that forces affected individuals to keep
moving, thus reducing their ability to rest. Patients with this disease
experience a deep, viscerally-irritating sensation in the legs that
continues to increase until they are literally forced to move their
legs or get up and walk; and this sensation only abates so long as the
individual keeps moving. RLS is best characterized as a neurological,
sensory-motor disorder with symptoms that are triggered from within the
brain itself. It is estimated that up to 5 to 7 percent of the U.S.
population may have RLS, of which half will have moderate to severe
stages of the disease. RLS impacts men, women, and children, though it
is 3 to 4 times more common in women and twice as common in older
Americans.
Due to the inability to sleep and work, RLS can cause disability,
depression, and suicidal ideation, as well as increased risk for co-
morbid conditions such as heart attack, stroke, and Alzheimer's. There
is no cure, and the current standards of care features several
medications, which do not provide life-long coverage. One of the
established effective treatment options for this disease is low-total
daily dose opioid medications. These are commonly used when all other
drug classes have failed. Research and clinical experience indicates
that the dose of opioids typically used to manage RLS effectively
without addiction or drug tolerance issues is significantly lower than
dosages used to treat chronic pain.
fiscal year 2021 appropriations recommendations
The RLS Foundation joins the broader medical research community in
thanking Congress for continuing to support the National Institutes of
Health with sustainable growth. Please continue to advance scientific
progress through proportional funding increases by providing at least a
$3 billion funding increase for fiscal year 2021 to bring NIH's budget
up to $44.7 billion.
In this regard, please provide proportional funding increases for
all NIH Institutes and Centers, including, but not limited to the
National Institute of Neurological Disorders and Stroke (NINDS), the
National Heart, Lung, and Blood Institute (NHLBI), the National
Institute on Drug Abuse (NIDA), and the National Institute of Mental
Health (NIMH). Research on RLS and similar neurological movement
disorders is directly related to efforts targeting the opioid epidemic,
as many patients with these disorders utilize very low total daily
doses of opioid therapies to manage their condition. Additionally,
related sleep disorders research activities impact many conditions and
are studied across various Institutes and Centers at NIH.
rls and the opioid crisis
While you consider the Committee's work to address the opioid
epidemic through this fiscal year's appropriations bill, the RLS
Foundation asks that you protect the needs of patient communities who
depend on appropriate access to low total daily doses of opioid
therapies to manage their debilitating condition. RLS is not a chronic
pain condition, and many in our community utilize these medications to
treat underlying neuropathology issues and not sensations of pain.
Studies have shown that appropriate access to these therapies allows
patients to live productive lives without an increased risk of
developing opioid use disorder. As you consider various legislative
proposals and work with Federal agencies, please consider the needs of
patients who rely on the regular use of low total daily doses of
opioids to manage RLS by supporting a diagnosis-appropriate safe harbor
for RLS patients, so they do not face arbitrary barriers.
I would like to share with you the experience of Lewis M. Phelps
from California, a 76 was 76-year old member of the RLS Foundation and
former chairman of the RLS Foundation board of directors.
``I have had RLS for more than 30 years. After many years of
treatment by doctors around the country (as I moved for professional
purposes), I finally got decent control over my symptoms about 10 years
ago with Mirapex, a dopamine-enhancing drug. Unfortunately, that didn't
last. Over time, I began to experience what RLS experts call
``augmentation,'' which means that the symptoms not only return, they
are stronger, they start earlier in the day, and they affect more of my
body. The doctor's response was to increase my dosage and keep adding
additional drugs that he thought might help. That just kept making
things worse. Finally, I consulted with a physician in my area who is
one of the nation's leading experts on RLS. 'Lew,' he said, 'you are
the poster child for augmentation. We need to get you off dopamine
drugs.' He immediately withdrew me from all of the drugs I was taking
and started me on a low daily dose of methadone. It has been amazingly
helpful for me. My RLS symptoms are completely controlled. I have been
on the same dose ever since I started on Methadone 5 years ago. I have
no side effects. Methadone has made it possible for me to live a normal
life again.''
It's worth noting that the cost of my monthly drug treatment has
fallen from $600 per month to less than $40 per month with this
approach. Methadone is not only much more effective for treating my
RLS, it is much more cost-effective.
``The only problem I have right now is that pharmacists are
becoming afraid to fill my prescription, even though it is for only 10
mg of methadone per day--far lower than the maximum safe dose level.
Over-reaction to the opioid crisis by the medical and pharmaceutical
industries, and by some regulators, is very worrisome to me. I know
from personal contacts that many people who suffer from RLS can't get
an opioid prescription, even when they have no other viable
alternatives. If I were to lose access to methadone, my life would
become living hell. There are no other medications available that will
prevent me from suffering very badly with RLS.''
Lew's story is emblematic of the need for increased medical
research, access to treatment, professional education, and public
awareness. Thank you for your time and consideration of our requests.
[This statement was submitted by Karla M. Dzienkowski, RN, BSN,
Executive
Director, Restless Legs Syndrome Foundation.]
______
Prepared Statement of Rose Jennifer D. deg.
Prepared Statement of Jennifer D. Rose
Dear Senators,
I am writing as the sister of a 29-year-old man who is suffering
and disabled by his severe Bipolar 1 illness.
My brother is a deeply good and kind person, and works hard to
collaborate with his psychiatrist and other medical professionals.
He is very consistent with medications, and yet--despite all his
efforts and the support of his family--he continues to suffer
profoundly from his bipolar illness. The medications he is on have
terrible side-effects (diarrhea, nausea, confusion, headaches,
depression, etc. ) and yet he chooses to suffer through them because he
prioritizes his brain's stability.
These past few weeks (despite the fact that he has been in
therapeutic range for his lithium) as the result of another prescribed
medication, he ended up in a severe manic episode that led to him going
missing for 12 hours this past weekend. This was horrific for my
family, as he was without sleep for roughly 96 hours and was
experiencing severe psychosis, lost touch with reality, and vulnerable
to risk-taking behaviors.
Again, this is a person who is trying to be well and stay well, and
has the unwavering support of his family. During his episode, four of
his family members, including myself, ensured he was consistently
taking his meds, which he could not handle on his own due to confusion
and loss of focus.
We are lucky he is still alive and was voluntarily admitted into a
psychiatric hospital.
We should not have to rely on being ``lucky.'' This is a profoundly
painful, horrifying and disabling illness, and individuals and families
like ours are not receiving enough basic support to survive this kind
of illness. Medications are not anywhere near where we need them to be,
and the only medication that works well for my brother (lithium) has
long term implications for his thyroid and kidneys. We need better
options for medications with fewer side effects.
Without question, we need more research for the cure and treatment
of serious mental illness. This is a top priority.
I am urging NIMH's priority to be focused on the cures and
treatment for serious mental illnesses like schizophrenia and bipolar.
Sincerely.
______
Prepared Statement of Rotary International
Chairman Blunt, members of the Subcommittee: Rotary appreciates the
opportunity to encourage continuation of funding for fiscal year 2021
to support the polio eradication activities of the U.S. Centers for
Disease Control and Prevention (CDC). The CDC is a spearheading partner
of the Global Polio Eradication Initiative (GPEI), an unprecedented
model of cooperation among national governments, civil society and UN
agencies which reach the most vulnerable children through the safe,
cost-effective polio immunization. Rotary International requests the
Subcommittee provide $176 million for the polio eradication activities
of the CDC--level funding--to ensure we end polio transmission, protect
polio free areas, and leverage the resources developed through this
global effort for value-added impact.
The 325,000 members of Rotary clubs in the US appreciate the United
States' generous support and longstanding leadership. Rotary, including
matching funds from the Gates Foundation, has contributed more than
US$2.1 billion and thousands of hours of volunteer service to protect
children from polio; and will continue this work until the world is
certified polio free. Continued US leadership remains vital to achieve
the goal of a polio free world and ensure that the investment in polio
eradication infrastructure and resources lives on to benefit other
health efforts.
progress in the global program to eradicate polio
Since the launch of the GPEI in 1988, eradication efforts have led
to more than a 99.9 percent decrease in cases. Over 18 million people
have been spared disability, and over 900,000 polio-related deaths have
been averted. In addition, more than 1.5 million childhood deaths have
been prevented, thanks to the systematic administration of Vitamin A
during polio campaigns.
Type 2 (WPV2) was declared eradicated in September 2015 and the
certification of the eradication of wild poliovirus type 3 (WPV3) was
announced in October 2019. Eradicating strains of the polio virus is
further proof that a polio-free world is achievable.
Only two countries, Afghanistan and Pakistan, confirmed cases of
wild polio in 2019. Wild poliovirus type 1 caused all the wild virus
cases and these are found in high risk areas of
Afghanistan (29 cases) and Pakistan (146 cases). Nigeria, which
experienced an outbreak in 2016, has not confirmed any new cases since
August of 2016 despite humanitarian crises. It has now been more than 3
years since the last case of wild polio in Africa, paving the way for
that region to be the next to be certified free from wild polio virus.
2019 also saw several outbreaks due to genetically-distinct
circulating vaccine-derived poliovirus type 2. These outbreaks are not
a failure of the vaccine, but result from a failure to sustain
sufficiently high levels of routine immunization which causes the live,
but weakened form of the virus used in the vaccine to revert over time
to a more virulent, wild-like form.
The combination of progress in the midst of challenges underscores
the urgency of continued focus to stop polio virus transmission in
these most complex environments while sustaining high levels of
population immunity in polio free areas. Continued support for global
surveillance is also essential to monitor and detect cases and virus
transmission and also provide confidence in the absence of cases.
cdc's vital role in global polio eradication progress
The United States is the leader among donor nations in the drive to
eradicate polio globally.
Congressional support has enabled CDC to provide the following:
--Provide $66.6 million to WHO for surveillance, technical staff and
immunization activities' operational costs, primarily in
Africa; and $3 million to UNICEF to support operational costs
for National Immunization Days (NIDs) in all polio-endemic and
outbreak countries.
--Provide $28.3 million to UNICEF for the expansion of a Community
Based Vaccinator Program in Pakistan that now includes over
24,000 workers (nearly 90 percent of which are women) who reach
4 million children annually with approximately 60 million doses
of oral polio vaccine, and 2.9 million doses of inactivated
polio vaccine.
--Train global virologists in advanced poliovirus research and public
health laboratory support. CDC's Atlanta laboratories serve as
a global reference center and training facility.
--Support the international assignment of 19 technical staff on
direct, 2-year assignments to WHO and UNICEF to assist polio-
endemic and polio-reinfected countries.
--Provide technical leadership through three international polio
consultants in Pakistan and one in Afghanistan; and build
capacity through eight national polio consultants in
Afghanistan.
--Assign 489 public health professionals who completed CDC's Stop
Transmission of Polio (STOP) training program to support
critical national immunization functions in 42 at-risk
countries in 2018. In 2019, the STOP program deployed 254
professionals to 42 countries.
--Train 339 staff at the Local Governing Area level in the highest
risk states of Nigeria in CDC's National STOP program. These
staff play a key role in interrupting transmission of wild
polio. Nigeria's polio legacy planning will transition those
workers to build lasting improvements in Nigeria's immunization
system.
--CDC has also trained 83 NSTOP officers in high risk districts in
Pakistan who support the tracking of high risk and mobile
populations.
The CDC also provides the following global surveillance, virologic
and other technical expertise:
--Provides expertise in virology, diagnostics, and laboratory
procedures, including quality assurance, and genomic sequencing
of samples obtained worldwide.
--Houses the leading specialized polio reference lab in the world
which provides the largest volume of operational (poliovirus
isolation) and sophisticated (genetic sequencing of polio
viruses) lab support to the 146 laboratories of the global
polio laboratory network.
--Provides scientific and technical expertise to WHO on research
issues regarding: (1) laboratory containment of wild poliovirus
stocks following polio eradication, and (2) when and how to
stop or modify polio vaccination worldwide following global
certification of polio eradication.
--Leads the efforts to raise awareness of the importance and urgency
of transition planning amongst donors, country governments and
other stakeholders to begin polio legacy planning to ensure
that key polio functions, including immunization, comprehensive
vaccine-preventable disease surveillance, outbreak response and
biocontainment, will be in place post-eradication.
In 2019, CDC also collaborated with Voice of America (VOA) to
produce programs with scientifically accurate information about polio
and the need for vaccinations to fight against early childhood
diseases. The programs address identified vaccine issues and concerns
through radio and television programming formats, including PSA's,
radio dramas (if feasible), and field news reports to millions of
Pashto-speaking Afghans and Pakistanis. VOA also trains journalists on
``best practices'' in covering polio, tracks stories written and
compiles data for monitoring and evaluation.
Rotary and GPEI partner agencies are working with CDC to assess use
of polio assets, consisting of thousands of polio workers and an
extensive laboratory and surveillance network, while continuing
critical polio eradication activities to the extent possible to avoid
backsliding during the current 2020 COVID-19 pandemic response. Rotary
is confident that CDC's commitment to polio eradication is firm and
knows that CDC's polio eradication program operates in some of the most
vulnerable places in the world, the agency is determined to do its part
in defeating the COVID-19 pandemic.
fiscal year 2021 budget request
We respectfully $176 million in fiscal year 2021 for the polio
eradication activities of CDC, the level appropriated by Congress in
fiscal year 2020. With Congress' continued support for polio
eradication in fiscal year 2021, CDC's priorities are to stop virus
transmission in the remaining polio endemic and outbreak countries;
reaching all children, particularly those in high risk areas with
vaccine, and support rapid case response. CDC will also continue to
work to strengthen surveillance for polioviruses. CDC also continues
planning for a post-polio transition to advance additional global
vaccine-preventable diseases (VPD) control and elimination/eradication
targets as outlined in CDC's Strategic Framework for Global
Immunization 2016-2020.
benefits of polio eradication
Since 1988, tens of thousands of public health workers have been
trained to manage massive immunization programs and investigate cases
of acute flaccid paralysis. Cold chain, transport and communications
systems for immunization have been strengthened. The global network of
146 laboratories and trained personnel established by the GPEI also
tracks measles, rubella, yellow fever, meningitis, and other deadly
infectious diseases and will do so long after polio is eradicated.
Besides the savings of more than $27 billion in health costs that
has resulted from eradication efforts since 1988, a sustained polio
free world will generate $14 billion in expected cumulative cost
savings by 2050, when compared with the cost countries will incur for
controlling the virus indefinitely. 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 $17
billion already invested in eradication. Success will ensure that the
significant investment made by the US, Rotary International, and many
other countries and entities, is protected in perpetuity.
[This statement was submitted by Anne L. Matthews, Chair, Rotary's
Polio
Eradication Advocacy Task Force.]
______
Prepared Statement of the Ryan White Medical Providers Coalition
Chairman Blunt, Ranking Member Murray, and members of the
Subcommittee my name is Dr. Ernie-Paul Barrette, and I serve as Medical
Director of the HIV Clinic for the Washington University School of
Medicine, in St. Louis, Missouri, the largest providers of medical care
for patients with HIV/AIDS in Missouri. I am pleased to submit
testimony on behalf of the Ryan White Medical Providers Coalition
(RWMPC), a national coalition of medical providers and administrators
who work in healthcare clinics supported by the Ryan White HIV/AIDS
Program in the HIV/AIDS Bureau (HAB) at the Health Resources and
Services Administration (HRSA).
I want to thank the Subcommittee for increasing funding in fiscal
year 2020 for both the Ryan White Program and the Bureau of Primary
Health Care at HRSA by funding the bipartisan Ending the HIV Epidemic
(ETE) initiative. Supporting the ETE initiative will help target
jurisdictions scale up their ability to end the HIV epidemic by
increasing access to HIV testing, prevention, care, and treatment
services critical to reducing HIV transmission. However, increasing
support for the Ryan White Program now would help jurisdictions
nationwide continue to address ending the HIV epidemic while also
meeting the new challenges COVID-19 presents. For fiscal year 2021,
RWMPC requests $225.1 million (a 10 percent or $24 million increase)
for Ryan White Part C, which supports approximately 350 HIV medical
clinics nationwide. RWMPC also requests $500 million across the parts
of the Ryan White Program in the next COVID-19 response bill to respond
to a range of urgent patient and provider needs during the COVID-19
pandemic.
Additionally, RWMPC supports the Administration's fiscal year 2021
request for additional resources for the ETE initiative to expand
access to HIV prevention, care, and treatment. RWMPC continues to
supports the fiscal year 2021 ETE proposal that includes $302 million
for HRSA, including $165 million for the Ryan White Program to provide
additional HIV care and treatment, as well as $137 million for the
Bureau of Primary Health Care to support HIV prevention services,
including providing Pre-Exposure Prophylaxis (PrEP), medication to
prevent HIV.
It is especially important now that any fiscal year 2021 increases
for Ryan White Part C or for the ETE initiative be new, additional
funding and not a repurposing of current resources. The additional
pressure that the COVID-19 epidemic is placing on the public health
infrastructure and medical facilities, including Ryan White clinics, is
significant and limited resources cannot be further stretched. As of
May 14, 2020, the Barnes Jewish Children's hospital network (of which
my institution is a member) has completed 21,667 COVID-19 tests with
2,596 positives (12 percent). Almost 30 percent of the COVID-19
positive patients were admitted and discharged home. COVID-19 is a
critical reason to strengthen the public heath infrastructure and
medical clinics serving people living with HIV. Ryan White clinics are
being pulled into wider COVID-19 response as experts in infectious
diseases, while caring for vulnerable patients.
Finally, as successful HIV prevention for individuals at risk for
HIV is available now through education, routine HIV screening, and
ready access to PrEP, post-exposure prophylaxis (PEP), harm reduction
services, and other prevention tools, both known and yet to be
discovered, RWMPC supports HRSA/HAB to allow Ryan White Program
grantees to use their program income to reduce new HIV infections and
for services that improve care and treatment outcomes for people living
with HIV as long as the use of that program income does not reduce
access to current or critical HIV care and treatment services provided
by the grantee.
How the Ryan White Program is Responding to the COVID-19 Pandemic
Ryan White Program providers and community-based organizations
nationwide are on the frontlines of the COVID-19 pandemic, and they
need additional funding both in fiscal year 2021 and in the next COVID-
19 response bill to meet the pressing current needs of their patients
and clients. Ryan White clients are both vulnerable to the dangers of
COVID-19 infection given their HIV status as well as low income--in
2018, more than 61 percent of Ryan White Program clients were living at
or below 100 percent of the Federal Poverty Level. The health and
economic dangers of COVID-19 impact every aspect of patients' lives.
Ryan White clinics nationwide have shifted care to telehealth to
protect patients during the pandemic but providing access to phones
with sufficient minutes for patients and telehealth equipment for
providers and clinics has been an immediate cost that clinics must
support. Additionally, clinics are providing significantly more case
management services to support a growing number of patients who are
experiencing increased or new impoverishment from the dramatic economic
downturn over the last 2-3 months. Ryan White programs are covering new
costs, including medications (prescription as well as over-the-counter
medications to help treat COVID-19), behavioral health services, and
access to basic necessities, such as food and shelter that is
appropriate during COVID-19.
As infectious diseases experts, Ryan White program teams are on the
frontlines of both the HIV and COVID-19 pandemics, often doing multiple
jobs at once now, and they need safety and protection, including PPE
and mental health support, as well as the security that their team will
continue to be employed during this dramatic economic disruption.
Changes in program income based on the move to serve patients via
telehealth, the loss of insurance coverage, and other budget cuts in
the wake of COVID-19 make the need for Federal resources more critical
than ever. Additional funding across the program's parts is needed to
help people living with HIV stay in care and on treatment; maintain
access to care and treatment during the economic downturn; meet the new
needs of people who now are without health insurance; and prevent and
contain the spread of COVID-19. Without this additional support, the
Ryan White Program will fail to meet the immediate needs of its
patients and clients while losing ground on responding effectively to
COVID-19 and HIV.
Washington University in Missouri is Leading the Way
Washington University's Ryan White-funded clinic has served as the
leading source of HIV primary care in Missouri for over 30 years. Each
year our Ryan White clinic serves more patients with more complex
needs. In 2019, the HIV Clinic at Washington University served 2,095
patients, a 3 percent increase over 2018 in its number of patients
living with HIV. Over the past fourteen years the clinic has seen a 109
percent increase in patients living with HIV. Additionally,
approximately 1 in 8 patients were fully uninsured and relied heavily
on the Ryan White Program to fund their care, and a significant portion
experienced housing insecurity. I expect the number of patients relying
on the Ryan White Program for support to increase this year as a result
of the significant economic downturn.
Washington University, like most Ryan White Part C clinics,
receives support from several parts of the Ryan White Program--
including parts A, B, C and D--that provide medications and services,
including additional medical care, dental services, mental health
services, peer health coaches, case management, and transportation--all
key components of the comprehensive Ryan White care model that produces
outstanding outcomes. In 2019, we started a new program called Rapid
Start in which newly diagnosed patients are seen quickly and offered
treatment at their first appointment. This program has significantly
decreased the time it takes for most patients to achieve viral
suppression or HIV treatment success. Additionally, Washington
University provides dedicated services for women who are pregnant and
for patients reentering care after being out of care for over a year.
Both services include nurses and social workers that accompany patients
to appointments and do home visits during these critical times.
Washington University also provides Pre-Exposure Prophylaxis (PrEP)
services. This critical HIV prevention tool is integrated as part of
prevention and primary care delivery. However, more support for the
PrEP program is needed to scale up these services to meet patient and
community needs, since Ryan White Program funding (including program
income) currently is not permitted to support these key prevention
services for individuals who are HIV negative.
Ryan White Part C Clinics are Effective Medical Homes and Public Health
Programs
Ryan White Part C directly funds approximately 350 community health
centers and clinics that provide comprehensive HIV medical care
nationwide, serving more than 300,000 patients each year. These clinics
are the primary method for delivering HIV care to rural jurisdictions--
approximately half of all Part C providers serve rural communities. The
program's comprehensive services engage and keep people in HIV care and
treatment. This is critical, because HIV disease is infectious, so
identifying, engaging, and retaining individuals living with HIV in
effective care and treatment saves lives and benefits public health by
stopping HIV transmission when individuals are virally suppressed.
In 2018, over 87 percent of Ryan White patients were virally
suppressed--a 25 percent increase in the program-wide viral suppression
rate since 2010. Washington University aligns with this national
average--in 2019, 87 percent of Washington University patients were
virally suppressed. Also, 90 percent of HIV patients remain in care at
Washington University--a critical fact since HIV disease is infectious,
so identifying, engaging, and retaining persons living with HIV in
effective care and treatment is an essential public health outcome.
Ryan White Clinics Are Saving Lives and Reducing Costs
Early access to HIV care and treatment helps patients with HIV live
healthy and productive lives and is cost effective. A study from the
University of Alabama at Birmingham's Ryan White clinic found that
patients treated at later stages of HIV disease required 2.6 times more
healthcare dollars than those receiving earlier treatment meeting
Federal HIV treatment guidelines.
Part C Clinics Are on the Frontlines of the Opioid Epidemic and Provide
SUD Treatment
Ryan White clinics serve a significant number of individuals living
with both substance use disorder (SUD) and HIV. Part C clinics are able
to deliver a range of medical and support services needed to prevent
and treat substance use disorder as well as related infectious
diseases, including HIV, HCV, and sexually-transmitted infections. The
Washington University HIV Clinic has been a leader in expanding HIV
testing to identify cases; has improved linkage-to-care services; and
has used social media to improve engagement, retention, and medical
outcomes among youth and young adult patients.
However, the opioid epidemic continues to hit Missouri and other
parts of the U.S. hard. Washington University patients struggle not
only with HIV, but also with SUD and related infectious diseases, such
as hepatitis C, with Missouri experiencing a dramatic increase in
hepatitis C cases.\1\ The Washington University HIV Clinic started a
hepatitis C clinic in order to treat this infection earlier.
Additionally, as a result of the increased need for SUD treatment and
overdose prevention services, the Ryan White clinic now offers
Medication Assisted Treatment (MAT) with buprenorphine and naltrexone
and access to naloxone (which reverses drug overdoses). Finally, the
clinic received a CDC grant to treat opioid use disorder in HIV
negative patients with complicated infections. We work to blend all of
these services in order to keep our high-risk patients HIV free. The
experience and expertise of Ryan White clinics should be supported to
effectively respond to the opioid epidemic and more rapidly expand
access to SUD services. This is especially important now during the
COVID-19 pandemic when we are seeing increased risk for and anecdotal
evidence of rising drug overdoses.
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\1\ Missouri Department of Health and Senior Services. Online at:
https://health.mo.gov/data/hivstdaids/pdf/HepCKnownRisksFactSheets.pdf.
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Increased Funding for Prevention at CDC and Research at NIH Also is
Critical
The ability to effectively respond to the syndemics of HIV,
substance use disorder, and related infectious diseases such as HCV;
sexually transmitted infections; and skin, soft tissue, and
endovascular infections depends on CDC funding to enhance surveillance
and prevention activities, and on NIH to continue to improve the tools
to prevent and treat HIV and SUD and to learn how to effectively
implement them. We support the Administration's fiscal year 2021
request for $371 million for CDC to provide surveillance, response, and
other HIV prevention services as part of the ETE initiative, and the
Administration's fiscal year 2021 request for $58 million for CDC to
address the infectious diseases consequences of the opioid epidemic. We
also request $58 million through CDC's opioid and infectious diseases
program in the next COVID-19 response package to support access to harm
reduction services, including syringe services programs, that prevent
overdose and infectious diseases transmission and connect individuals
to SUD treatment and medical care. Finally, we support continued robust
funding for NIH. This funding supports discoveries that will help end
the HIV, HCV, and opioid epidemics.
conclusion
Thank you for your time and consideration of these requests, and
please don't hesitate to contact me or Jenny Collier, Convener of the
Ryan White Medical Providers Coalition, at
[email protected] if you have any questions or need
additional information.
[This statement was submitted by Ernie-Paul Barrette, MD, Medical
Director, HIV Clinic for the Washington University School of Medicine,
Member, Ryan White Medical Providers Coalition.]
______
Prepared Statement of the Sac and Fox Nation
Chairman Blunt and esteemed members of the Committee, on behalf of
the Sac and Fox Nation I thank you for the opportunity to submit this
testimony for the record of our requests for the fiscal year 2021
budgets and matters for consideration for Health and Human Services and
Education. The Sac and Fox Nation looks forward to building a positive
relationship with your committee and enhancing the future of our Tribal
citizens.
department of education requests
--Child Care Providers, Schools and Institutions of Higher Education
should receive Federal funds due to closures impacting Native
students;
--Provide $5 million for Title VI, Part A, Subpart 3, Every Student
Succeeds Act (ESSA) (Language Immersion Grants)
department of health and human services requests
--Ensure Tribes Have Equal Access to Resources and Programs to
Prevent and Mitigate COVID-19
--Increased Funding for Head Start to Include Indian Head Start
--Increase Funding to Social Services in Indian Country Through
Health and Human Services
--Restore $281 million to Child Welfare Services Program (Pre-
sequestration level)
--Increase to $38 million--Child Abuse Discretionary Activities,
Innovation Evidence-Based Community Prevention Program.
--Increase to $70 million--Promoting Safe and Stable Families.
--Increase funding to the Substance Abuse and Mental Health
Services Administration--Children and Family Programs
(includes Circles of Care)
--Increase to $50 million--Tribal Behavioral Health Program
--Increase Funding for Part A, Grants for Indian Programs and Part B,
Grants for Native Hawaiian Programs. Increase the Level of
Funding for Programs like the Title VI Elders Program Food
Delivery
--Restore the President's Proposed Elimination of the Low-Income Home
Energy Assistance Program, Community Services Block Grants, and
Preschool Development Grants.
The Sac and Fox Nation currently has an enrollment of over 4,000
people, with a jurisdictional area covering all or parts of Payne,
Pottawatomie and Lincoln counties in Oklahoma. We are a Self-Governance
Tribe in both the Department of the Interior and the Department of
Health and Human Services. The Sac and Fox Nation is home of Jim
Thorpe, one of the most versatile athletes of modern sports who earned
Olympic gold medals for the 1912 pentathlon and decathlon.
department of education requests
Child Care Providers, Schools and Institutions of Higher Education
should receive COVID-19 Federal funds due to closures impacting Native
Students: Public schools continue to close across the country,
disproportionately impacting Native students who live in rural and
remote areas, and those who live on or near Tribal lands; 42 states
have closed schools statewide and according to the National Center for
Education Statistics, 37 percent of Native students do not have access
to Internet in the home compared to 12 percent of their white peers and
the 14 percent nationwide average.
Provide $5 million for Title VI, Part A, Subpart 3, ESSA (Language
Immersion Grants): The Ester Martinez Native American Languages
Programs Reauthorization Act was enacted on December 20, 2019 and
Congress must build on its bicameral work and continue to advance
language immersion. The Sac and Fox Nation supports funding for this
critical program above and beyond the 20 percent set aside through
National Activities. The ESSA promotes co-existence of Immersion
Schools through Section 6133, which recognizes the unique educational
and culturally related academic needs of Native children.
department of health and human services requests
Ensure Tribes Have Equal Access to Resources and Programs to
Prevent and Mitigate the COVID-19 Virus: Tribes must be provided
adequate access to the resources and programs described herein and set
forth in Public Law 116-123, the Coronavirus Preparedness and Response
Supplemental Appropriations Act.
Increased Funding for Head Start with Funding Parity for Indian
Head Start: Head Start has been and continues to play an instrumental
role in Native education by providing early education to over 24,000
Native children. This vital program combines education, health, and
family services to model traditional Native education, which accounts
for its success rate. Current funding dollars provide less for Native
populations as inflation and fiscal constraints increase, even though
research shows that there is a return of at least $7 for every single
dollar invested in Head Start. Congress should increase funds to Head
Start and Early Head Start with funding parity to ensure that Indian
Head Start can reach more Tribal communities and help more Native
recipients by activating the Indian special expansion funding
provisions.
Increase Funding to Social Services in Indian Country Through
Health and Human Services: Our children are a critical resource that we
must protect and the great work that is done by the Administration for
Children and Families and all the Indian Child Welfare departments
across the Nation should be fully funded. These programs are in dire
need of funding to ensure that they are running at the best capacity
and efficiency possible. Protecting our Native youth is paramount in
our eyes. We strongly encourage you to consider this increase and to
help us fight to make sure that critical services are reaching those
who are most in need. In fiscal year 2021, we recommend:
--Restore $281 million to Child Welfare Services Program (Pre-
sequestration level). Tribes need to have access to increased
flexible Child Welfare Services Program funds for their child
welfare programs. Studies show that culturally tailored
programs, resources and case management result in better
outcomes for American Indian and Alaska Native (AI/AN) children
and families involved in the child welfare system.
--Increase to $38 million--Child Abuse Discretionary Activities,
Innovation Evidence-Based Community Prevention Program. Tribes
are now eligible for these funds through a competitive grant
process. An accurate understanding of successful child abuse
and neglect interventions for AI/AN families allows child abuse
prevention programs to target the correct issues, provide the
most effective services and allocate resources wisely.
--Increase to $70 million--Promoting Safe and Stable Families. The
Nation requests the discretionary funding portion of the Social
Security Act, Title IV-B, Subpart 2 be increased to $70 million
in order to provide ad currently not eligible to apply based on
the funding formula.
--Increase $8 Million to the Substance Abuse and Mental Health
Services Administration--Children and Family Programs (includes
Circles of Care). Increase the overall budget category funding
to $8 million and ensure that $6.5 million is reserved for the
Tribal community Circles of Care program.
--Increase to $50 million--Tribal Behavioral Health Program. AI/AN
youth are more likely than other youth to have an alcohol or
substance abuse disorder. There is growing evidence that Native
youth who are culturally and spiritually engaged are more
resilient than their peers. These funds must be used for
effective and promising strategies to combat substance abuse
and suicide and promote the mental health of our youth.
Increase Funding for Part A, Grants for Indian Programs and Part B,
Grants for Native Hawaiian Programs: Increase the Level of Funding for
Programs like the Title VI Elders Program Food Delivery. At the Sac and
Fox Nation, just as throughout Indian Country, we are seeing a great
increase in the number of elders who need help getting meals. We
request an increase in funding for this program and implementation with
more flexibility. With an increase in funding, more meal centers could
be opened to provide for the care of our growing population of elders.
This is no small issue to us.
Restore the President's Proposed Elimination of the Low-Income Home
Energy Assistance Program, Community Services Block Grants, and
Preschool Development Grants.
[This statement was submitted by Justin F. Wood, Principal Chief,
Sac and Fox Nation.]
______
Prepared Statement of the Safer Foundation
My name is Victor Dickson and I am submitting testimony on behalf
of the Safer Foundation. For almost 50 years, Safer has provided a
comprehensive continuum of workforce development and reentry services
for individuals with arrest and conviction records seeking employment.
There is dignity in work, and Safer Foundation believes that
individuals who have made mistakes in the past should have the
opportunity to be self-sufficient and contribute to their families and
communities through gainful, living wage employment. Clients come to
Safer because they want and need to work. Safer Foundation helps
clients discover career paths that provide personal fulfillment while
allowing them to earn a living. A critical Federal program that
supports these efforts is the Reintegration of Ex-Offenders (RExO)
program within the Employment & Training Administration of the U.S.
Department of Labor. I thank the Subcommittee for providing RExO with
$98 million in fiscal year 2020. Given the skills gap and need to train
individuals in jobs our economy requires--such as healthcare workers,
technology, and logistics--and to help employers identify the qualified
workers they need, I request $105 million for the RExO program in
fiscal year 2021. Additionally, given the dramatic economic downturn
and the fact that states and localities nationwide are releasing people
from incarceration to address COVID-19, I urge Congress to allocate
$350 million for the RExO program in the next COVID-19 response bill.
This funding would support community-based organizations and nonprofit
providers in addressing the significant increase in need for reentry
and workforce development services. Expanding services now would enable
organizations and providers to serve those who are reentering earlier
than expected or who have records and are facing unexpected job loss,
as well as adjust services and training to better meet the needs of
existent and emerging employers in the evolving economy.
The COVID-19 Pandemic's Impact on the Employment of Individuals with
Criminal Records
1 in 3 adults in the U.S. has a criminal record that interferes
with their ability to find a job.\1\ The unemployment rate for formerly
incarcerated individuals nationwide could be as high as 47 percent
after the COVID-19 pandemic (based on unemployment data for this
population from the last recession and current unemployment data and
trends). The RExO program supports the collaboration of workforce
development providers and businesses in training and credentialing
individuals with criminal records for career path employment that meets
the current needs of local and regional employers. Congress should
proactively improve employment outcomes of individuals with records
during this dramatic economic downturn by strengthening and expanding
the RExO program.
---------------------------------------------------------------------------
\1\ ``Research Supports Fair-Chance Policies'' (March 2016),
National Employment Law Project, footnote 1 on p. 7. Available at
http://www.nelp.org/publication/researchsupports-fair-chance-policies.
---------------------------------------------------------------------------
To immediately meet these needs, Congress should provide
supplemental RExO program funding in the next COVID-19 relief bill.
$350 million for RExO would support reentry, education, and workforce
development services for approximately 25,000-30,000 individuals (10.5-
12.75 percent of formerly incarcerated individuals estimated to be
unemployed after the pandemic), and this funding should support reentry
and workforce development services, including wage replacement funding,
training stipends, and earn and learn strategies and internships.
Additionally, this funding would provide Safer Foundation and other
organizations with critical resources to help train and certify
healthcare providers who are greatly needed as the country grapples
with the pandemic. Safer Foundation created a program called the Safer
Demand Skill Collaborative (SDSC)--an employer-driven initiative of
public and private partners that work together to train and credential
skilled workers across five industries, including healthcare. SDSC
builds on Safer Foundation's successful workforce development
programming by adding vocational training in high-growth sectors that
leads to industry-recognized credentials. SDSC provides career pathways
within the healthcare sector for the jobs of certified nursing
assistant, certified medical assistant, and registered nurses. In
fiscal year 2017-2019, Safer Foundation successfully placed 158
individuals who faced barriers to a healthcare career because of their
criminal record in critical frontline healthcare jobs with an average
employee retention rate of 92 percent. With additional RExO program
resources, organizations such as Safer Foundation would be able to help
train and certify a portion of the healthcare workforce required to
respond to COVID-19 and other pressing industry challenges, such as
long-standing workforce shortages.
A substantial investment in the workforce system now must emphasize
subsidized employment and ``earn-as-you-learn'' models such as
transitional jobs that target those with barriers to employment such as
criminal records. Time-limited, wage-paying jobs that combine real
work, skills development, and supportive services help participants
transition successfully into the labor market. Transitional jobs are an
effective model for individuals impacted by the justice system and
support employers to meet the demands of the workforce. RExO funding
should support this model in this specific economic environment.
Employment Reduces Recidivism and Improve Reentry Outcomes
Research shows that sustained, living wage employment and life
skills are critical components to long-term reentry success. One study
found that individuals who were employed and earning higher wages after
release were less likely to return to prison within the first year.\2\
Unfortunately, finding this type of employment can be prohibitively
difficult for Americans who have any history of justice system
involvement. The RExO program helps individuals overcome employment
barriers by preparing participants for jobs in local high-demand
industries through career pathways and industry-recognized credentials.
---------------------------------------------------------------------------
\2\ Visher, C., Debus, S., & Yahner, J. Employment After Prison: A
Longitudinal Study of Releasees in Three States. Washington, DC: Urban
Institute (2008).
---------------------------------------------------------------------------
Increasing RExO funding would expand access to comprehensive
workforce development and reentry services that assist individuals with
criminal records in navigating obstacles to employment while improving
employment and reentry outcomes. Authorized by section 169 of Workforce
Innovation and Opportunity Act (WIOA), the RExO program provides
workforce preparation services for both adults and young people. RExO
includes a $25 million set-aside to provide services to prepare
formerly incarcerated young adults for employment, including those who
have not completed school or other educational programs. Research has
found that incarceration reduces the average formerly incarcerated
individual's earning potential by more than 27 percent over a
lifetime,\3\ making workforce development services for young people
essential for their long-term employment and reentry success. In light
of the costs of the criminal justice system at the state, local, and
Federal levels, the RExO program is crucial to incubating community-
based models of successful reentry through employment.
---------------------------------------------------------------------------
\3\ Holwell, P., & Gardner, D. (2014). Workforce centers:
Successful labor market reentry for justice involved ex-offenders.
Centennial, CO: Arapahoe/Douglas Works, p. 2: http://www.adworks.org/
pdf/Supporting_Successful_LM_Reentry_for_Justice_Involved.pdf.
---------------------------------------------------------------------------
Safer's RExO Services Increase Employment by Working with Employers and
Employees
Safer Foundation offers a full spectrum of workforce development
and reentry services that train individuals, address their reentry
obstacles and needs, and help them obtain sustained employment. This
holistic approach has rendered outstanding results for participants and
employers. In 2006, decades of experience and success led Safer to
become one of the original RExO grantees.
In addition to working with reentering individuals and their
communities, Safer also works closely with employers to identify what
types of trained employees they need. In November 2019, the National
Federation of Independent Business (NFIB) reported that 53 percent of
businesses overall (and 88 percent of those hiring or trying to hire)
reported few or no ``qualified'' applicants for the positions they were
trying to fill. 67 percent of construction firms reported few or no
qualified applicants. Safer can be responsive to employer needs by
tailoring its programs to develop skilled workers for specific
employment sectors and has partnered with hundreds of employers to meet
their workforce needs.
Safer's Training to Work (T2W) program, that was funded by a RExO
grant, improved long-term employment prospects for clients at Safer's
Adult Transition Centers (ATC). Program participants received case
management, education, and training that lead to industry-recognized
credentials for in-demand employment, such as forklift operation,
foodservice and sanitation, welding, computer numerically control
(CNC), CDL training, and Microsoft technologies. Given the program's
strong employer and credentialing components, RExO is uniquely
positioned to assist local organizations in developing and providing
services that meet the needs of both the local business community and
reentering individuals. Increased RExO funding in the next COVID-19
response bill and in fiscal year 2021 appropriations, including the
funding of earn and learn apprenticeship opportunities for in demand
skills development, would allow these efforts to expand, and could help
match more employers with qualified employees who are trained,
talented, motivated to work.
Safer's RExO Grant Produced Outstanding Employment Outcomes and Reduced
Recidivism
Safer's RExO grant for the Training to Work (T2W) program
significantly outperformed employment targets and dramatically reduced
recidivism. For the first cohort of RExO T2W participants, 69 percent
of participants obtained employment--15 percent higher than the grant's
employment target. Given the success of this first cohort of
participants, T2W was extended to a second cohort who did even better
with an employment rate of 78 percent--30 percent higher than the
grant's target. Safer's RExO T2W grant also reduced recidivism rates
beyond original targets. A 2014 report published by the Bureau of
Justice Statistics, which studied recidivism across 30 states for 5
years, determined that the recidivism rate 1 year after release from
prison was 43.4 percent.\4\ T2W's first participant cohort had an 11
percent recidivism rate, and its second participant cohort had a 9
percent recidivism rate--respectively 75 percent and 80 percent lower
than the national recidivism rate.
---------------------------------------------------------------------------
\4\ Durose, Matthew R., Alexia D. Cooper, and Howard N. Snyder,
Recidivism of Prisoners Released in 30 States in 2005: Patterns from
2005 to 2010 (pdf, 31 pages), Bureau of Justice Statistics Special
Report, April 2014, NCJ 244205.
---------------------------------------------------------------------------
Program evaluation has shown that such successful outcomes are
related to the comprehensive service model that grantees such as Safer
provide. Effective, comprehensive services can include interventions
such as relationship building between staff and participants,
employment verification, trauma informed training, life skills
training, employment preparation, mentoring, intensive case management,
strong training provider relationships and support, family involvement,
and post-release follow-up and support. These comprehensive services
are cost-effective--a 2016 Illinois study found that for every $1
invested in community-based employment and training programs, tax
payers saw a net benefit of $20.26, and found that employment and
training programs had the highest cost-benefit ratio for reducing
recidivism.\5\ Another study found that individuals who were employed
and earning higher wages after release were less likely to return to
prison within the first year.\6\ By increasing and improving employment
outcomes, the RExO program invests in formerly incarcerated individuals
and their families, while improving public safety.
---------------------------------------------------------------------------
\5\ Illinois Sentencing Policy Advisory Council (2016). A Cost-
Benefit Tool for Illinois Criminal Justice Policymakers, pp. 2-3:
http://www.icjia.state.il.us/spac/pdf/Illinois_Results_First_
Consumer_Reports_072016.pdf, pp. 2-3.
\6\ Visher, C., Debus, S., & Yahner, J. (2008). Employment After
Prison: A Longitudinal Study of Releasees in Three States. Washington,
DC: Urban Institute.
---------------------------------------------------------------------------
Conclusion
By making effective workforce development and reentry services a
priority, we fulfill labor market demands, contribute to the economy,
and build strong and safe communities. Given the skills gap and
workforce shortages that persist in industries such as healthcare, the
significant return on investment related to reduced incarceration costs
and reduced crime costs borne by victims, families, and communities, I
urge Congress to allocate $350 million to the RExO program in its next
COVDI-19 response bill as well as $105 million to the RExO program in
fiscal year 2021. Thank you so much for your time and consideration of
this important program. If you have questions or need additional
information, please feel free to contact me at
[email protected] or Jenny Collier at
[email protected].
[This statement was submitted by Victor Dickson, President and CEO,
Safer Foundation.]
______
Prepared Statement of the Schizophrenia and Related Disorders Alliance
of America
The Schizophrenia and Related Disorders Alliance of America
appreciates the opportunity to provide written testimony on the
National Institute of Health fiscal year 2021 budget appropriations.
The Schizophrenia and Related Disorders Alliance of America is a
national nonprofit dedicated exclusively to Improving and saving lives
affected by serious neuropsychiatric brain (mental) illnesses such as
schizophrenia and bipolar disorder. Our organization promotes laws,
policies and practices for the delivery of psychiatric care and
supports the development of treatments for and research into factors of
serious neuropsychiatric brain illnesses that have the potential for
reducing suffering, saving and improving lives of individuals living
with these illnesses.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
Unfortunately, the NIMH has a recent history of diminishing the
work to impact those with the most severe mental illnesses. According
to Dr. E. Fuller Torrey in Psychiatric Times earlier this month:
``Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of
Health budget resolution in December 2019, which brings the
NIMH budget to just under $2 billion and represents a 35
percent increase since 2015, one of the largest increases in
the history of the NIMH. Yet, during the 5 years from 2015
through 2019, NIMH funded a total of 2 new drug treatment
trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from
2006 through 2010 when NIMH funded 48 such trials. NIMH has
thus almost entirely given up its role of evaluating drugs for
the treatment of 2 disorders (emphasis added).''
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses over the winter holidays, including from our
organization identifying concrete examples of research initiatives the
NIMH could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 increase the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
a serious mental illness.
Schizophrenia and Related Disorders Alliance of America recognizes
the profound importance of discovering the etiology of the syndromes to
allow for precise targeted treatments, however, that will not provide
for individuals currently suffering and dying. It is vitally important
for NIMH to study what the pharmaceutical industry will not, that is
what can be developed in the very short term to help individuals
seriously ill now.
The pharmaceutical industry will not compare a ``gold standard''
medication, clozapine, to new medications or study the elements of
clozapine that currently provide the most effective outcomes for people
affected by psychosis thus improving life success and reducing suicide.
Refine even further what is reasonable as well as safe Risk Evaluation
and Mitigation Strategy (REMS) for clozapine to increase the use and
accessibility of the currently most effective medication. NIMH must
prioritize research and discover what will relieve the suffering of
people currently seriously ill.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has distressed
the mental health treatment system and has resulted in an exacerbation
of symptoms in people currently affected and will cause an increase in
serious mental illnesses among Americans. Those with the most severe
forms of neuropsychiatric brain (mental) illness deserve to be
prioritized.
Thank you for your consideration of this request.
Sincerely.
[This statement was submitted by Linda Stalters, Chief Executive
Officer,
Schizophrenia and Related Disorders Alliance of America.]
______
Prepared Statement of the Scleroderma Foundation
the foundation's fiscal year 2021 l-hhs appropriations recommendations
_______________________________________________________________________
--$8.3 billion in program level funding for the Centers for Disease
Control and Prevention (CDC), which includes budget authority,
the Prevention and Public Health Fund, Public Health and Social
Services Emergency Fund, and PHS Evaluation transfers.
--A proportional fiscal year 2019 funding increase for CDC's
National Center for Chronic Disease Prevention and Health
Promotion (NCCDPHP).
--At least $44.7 billion in program funding for the National
Institutes of Health (NIH).
--Proportional funding increases for NIH's National Heart, Lung,
and Blood Institute (NHLBI); National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS);
National Center for Advancing Translational Sciences
(NCATS).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray and distinguished members of
the Subcommittee, thank you for your time and your consideration of the
scleroderma community's priorities while working to craft the fiscal
year 2021 L-HHS Appropriations Bill.
about scleroderma
Scleroderma is a chronic connective tissue disease affecting
approximately 300,000 Americans. The word scleroderma means hardening
of the skin, which is one of the most visible manifestations of the
condition. The cause of this progressive and potentially fatal disease
remains unknown. There is no cure, and treatment options are limited.
Symptoms vary greatly and are dependent on which organ systems are
impacted. Prompt diagnosis and treatment by a qualified physician may
improve health outcomes and lessen the chance for irreversible damage.
Serious complications of the disease can include pain, skin ulcers,
anemia and pulmonary hypertension.
about the foundation
The Scleroderma Foundation is dedicated to the concerns of people
whose lives have been impacted by the autoimmune disease scleroderma,
also known as systemic sclerosis, and related conditions. The
foundation's mission is to 1) support individuals affected, 2) promote
education and public awareness, and 3) advance critical research and
improve scientific understanding to improve treatment options and find
the causes and a cure. The foundation has a research program that funds
basic, translational and clinical research through a peer review
process to find the cause and cure for scleroderma and related
conditions.
centers for disease control and prevention
Early recognition and an accurate diagnosis of scleroderma can
improve health outcomes and save lives. CDC in general and the NCCDPHP
specifically have programs to improve public awareness of scleroderma
and other rare, life-threatening conditions. Please increase funding
for CDC and NCCDPHP so that the agency can invest in additional,
critical education and awareness activities that have the potential to
improve health and save lives. The Foundation supports the
establishment of a Chronic Disease Education and Awareness Program,
this program seeks to provide collaborative opportunities for chronic
disease communities that lack dedicated funding from ongoing CDC
activities. Such a mechanism allows public health experts at the CDC to
review project proposals on an annual basis and direct resources to
high impact efforts in a flexible fashion.
national institutes of health
NIH continues to work with the Foundation to lead the effort to
enhance our scientific understanding of the mechanisms of scleroderma
with the shared-goal of improving diagnosis and treatment, and
ultimately finding a cure. Since scleroderma is a systemic fibrotic
disease it is inexorably linked to other manifestations of fibrosis
such as cirrhosis, pulmonary fibrosis, and the fibrotic damage
resulting from heart attack. Scleroderma is a prototypical
manifestation of fibrosis as it impacts multiple organ systems. In this
way, it is important to promote cross-cutting research across such
Institutes as NIAMS and NHLBI.
Please provide NIH with a significant funding increase to the
scleroderma research portfolio can continue to expand and facilitate
key breakthroughs.
--NIH continues to support the Trans-NIH Working Group on Fibrosis
which is working to promote cross-cutting research across
Institutes.
--NHLBI, which is leading Scleroderma Lung Study II, is comparing the
effectiveness of two drugs in treating pulmonary fibrosis in
scleroderma.
--NIAMS, is leading efforts to discover whether three gene expression
signatures in skin can serve as accurate biomarkers predicting
scleroderma, and investigations into progression and response
to treatment to clarify the complex interactions of T cells and
interleukin-31 (IL-31) in producing inflammation and fibrosis,
or scarring in scleroderma.
Patient Perspective
My constantly aching hands begged for mercy of just one day without
pain. My joints started to feel like they were being torn away from my
body. Anytime I touched something cold, my hands would tingle and burn.
Painful sores started appearing on my knuckles. You stole my skin color
and with that went my confidence. It was like I was turning into a
mummy as my skin tightened with collagen, day by day. I was beginning
to need help performing small tasks. Opening a water bottle or turning
a key in the door started to become difficult. Standing for long
periods of time made my hips radiate with pain. In 2012 I had to stop
working, at 24 years old. The definition of normal as I knew it was
being torn down and built into something completely new. And so was my
soul.
I now need help with everything! Getting dressed, washing my hair,
cleaning, doing laundry; pretty much anything I have to use my hands
for. You stole my independence. I had to learn to swallow my pride and
ask for help. It's a tough thing to do, especially when you're at an
age that's supposed to be your prime. Friends and family around me have
blossomed into caregivers and helping me has become second nature to
them. It's a beautiful thing when those surrounding you automatically
adapt to your disability. Support is the lifeboat that keeps me
afloat.''
--Excerpt from ``My Letter to Scleroderma''
Jessica Messingale
Coconut Creek, Florida
[This statement was submitted by Mr. Robert J. Riggs, Chief
Executive Officer, Scleroderma Foundation.]
______
Prepared Statement of Scott Cynthia deg.
Prepared Statement of Cynthia Scott
Here's how I have lived my life. Standing on a cliff, with my arms
opened wide, trying to keep my loved ones from running off. I was born
into a bipolar family. Bipolar disorder is not listed as the official
cause of death for any of them, but this brain disease is picking off
my family one by one. They drink and drug themselves to death in an
attempt to poison the beast. They end up poisoning themselves and
shattering their own lives in the process. I have spent my life trying
to keep alive brilliant people gripped by madness. It's been an abject
failure. Bodies keep hitting the floor one by one. This is a genetic,
biological condition. They are born with bipolar, and it lives in their
brain like a terrorist cell waiting to activate. It is a complex
condition, and the triggers that activate it are complex and unique to
the individual sufferer.
Why do they suffer? They are trapped in a hell mind. They hate
themselves, because they can't find their way out. They project this
self-loathing onto their safe people. My son, who is in and out of
recovery and now back in, originally began his drug abuse to self-
medicate his bipolar condition. Years after his first taste of a
prescribed opioid, he told me, ``It was the first time in my life that
my brain felt calm.'' With that first taste, he fell down the dark
rabbit hole. He tells me he did the drugs, because, ``I just wanted to
make my brain feel normal.''
Love is not enough in the face of such suffering. I recently
participated in a webinar for family members with addicted loved ones.
The presenter offered this beautiful closing that left me weeping: ``We
don't believe in brokenness. We believe in forgetfulness, and we must
remind them of who they are.'' It caused me to reflect on why we hang
in there. We call them up, and we call them out, because we know they
are still in there, but they are lost. Because we love them, and
because we are brave and have big hearts, we are helping them find
their way back home.
It is really since I sent my son to his first rehab more than 2
years ago that I started to open up about having a family afflicted by
mental illness. Until then, I held that close to my chest, as an ache
in my heart, as my secret sorrow. Mental illness is an
intergenerational trauma for our family. Of all the grandchildren in my
family of origin, only one is mentally healthy. The rest have bipolar
disorder. All are brilliant and talented beyond belief. And all are
cursed.
I feel raw with emotion right now writing this letter, because I
just emerged from a harrowing five days, where I mounted a rescue
operation from 1400 miles away to pull my son back from the edge of
hell again. I would have caught the first plane to Costa Rica to find
him if I could have, but the borders are closed. As I feared, the
quarantine had destabilized him, and he disappeared for several days.
When he resurfaced incoherent, I was able to pull enough details from
him to send people to find him. For now, he is safe in recovery in
Costa Rica. For how long? I don't know. The tragedy of loving someone
with bipolar disorder is knowing your love is not strong enough to
spare them and that their suffering does not truly end until the grave.
Only a warrior can live with it for long.
Why is my son recovering 1400 miles away in Costa Rica? Because we
could not afford long-term care for him in America, and I sent him down
there initially for rehab. He is now on his fifth round of rehab there,
because each time he has ever gone into rehab in America or abroad,
they inadequately target the problem. The why behind his addiction. His
bipolar disorder. Co-existing conditions like bipolar disorder and
other serious mental illnesses are driving our problem with drug
addiction. Before COVID-19 hit, drug addiction was the plague
threatening to take our economy down. Currently, America has the
highest rate of drug overdose deaths in the world. We also lead the
world in having the highest percentage of our citizens incarcerated.
For many of our mentally ill citizens, they do not receive adequate
mental health treatment until they go to prison. Currently, our prison
system is considered the largest mental health provider in the country.
We should hang our heads in shame for this as a nation.
People suffering with substance use disorders end up on an insane
merry-go-round of rehab and relapse. Why do so many relapse as soon as
they leave rehab? For one, in most cases, insurance will only pay for
30 days, and this is laughable. There is no research to support this
arbitrary number. Most rehabs offer inadequate treatment, because under
our current backwards model, they try to cure them with a quasi-
religious philosophy called The Twelve Steps. While this program has
its benefits, it is not a medical cure for a medical problem. What
addicts with co-existing conditions like bipolar disorder need are
medicines that don't make them want to die. They often refuse to stay
on the meds beyond initial stabilization because of their horrid side
effects. My son says the meds numb him emotionally, make him feel like
a zombie. They make him feel like he is living a miserable half-life as
a human. If he cannot live fully and embrace the full range of his
emotions, then why live at all? This is how he feels. For a bipolar
person, their full range of emotions is dangerous and carries them away
into the streets, prison, insanity or an early grave. The loss to our
society is incalculable. The people afflicted with bipolar disorder are
often brilliant. Bipolar disorder is referred to as the ``artist's
disease,'' because the sufferers are often highly creative. Those
afflicted with this condition have made some of the greatest
contributions to humanity. But they did so at the cost of intolerable
psychological pain.
It is difficult to impossible to get many bipolar people to commit
to care. They get stuck in a self-destructive cycle. Of all the brain
illnesses, bipolar is the one that demands medication to survive. There
is no ``natural cure'' for bipolar disorder. Sure, alternative and
integrative therapies can help and be wonderful, but my son, for
example, is not going to talk his way out of it, surf his way out of
it, forest bathe his way out of it, pray his way out of it, think his
way out of it, will his way out of it, or weight lift his way out of
it. All of those things can and do help reduce the suffering but not to
the point to keep the madness in check. Not. Even. Close. My son will
continue to live like a homeless man even when he has a home if he does
not get on proper meds that he can tolerate, and his life will continue
along this wasted, tragic trajectory before it ends too soon.
Nobody hates Big Pharma more than I do. Because of their
irresponsibility and greed, they have killed millions and almost took
my son down, too. They go unpunished. I consider the Sackler family,
who unleashed the opioid epidemic on America, to be mass murderers.
They should all be arrested and carted off to prison where they rot
forever. But no. Not how it works. They're now the world's most
successful living drug dealers enjoying the high life with their blood-
money billions, while my son's in Costa Rica trying not to die. His
drug addiction began with a legal prescription for opioids at a time
when doctors-aligned with Purdue Pharma marketing-claimed addiction to
opioids was rare and prescribed these deadly drugs like Skittles.
Having said that, my son needs pharmaceuticals to live. Bipolar
meds are not pretty. No one takes an anti-psychotic and shouts, ``Good
times!'' Anyone who takes these meds without a dose of wisdom fear is a
fool. This is a pick your poison scenario. On the one hand, they can
choose barely tolerable meds with potentially horrendous side effects
that can keep them alive but will probably destroy their kidneys in the
process OR refuse treatment and live a tragic wasted life only to face
an early death. It's a double-edged sword. This is a brutal choice and
requires courage. Why do our mentally ill citizens, already enduring so
much suffering, have to endure even more as guinea pigs while doctors
spend months and years trying to find the right combination of meds
that will help make their lives worth living? We can do better. We can
be a nation that cares for the mentally ill instead of marginalizing
them.
Bipolar disorder is a bleak condition I would not wish on my worst
enemy if I had one. For untreated bipolar people, their bottom is
death. When my untreated bipolar sister ran her car off the road,
across a field, and crashed it into a building in a suicide attempt,
that was not her bottom. She survived it but persisted in self-
destruction, including her refusal to be properly medicated. She
finally drank herself to death to stop the pain. Her son would do the
same three short years later. He refused medication, too. These were
not stupid people. Both had genius level IQs. High intelligence does
not protect against the bipolar beast unless it is trained to target
the beast. Their tragic fate is the same fate grinning back at my own
son if he does not surrender to proper treatment, however inadequate.
Even when bipolar people accept treatment, for many it is only
temporary. Once they start feeling good, they ditch their meds, because
they think they're cured (which is delusional) or because of the side
effects. This brain disease is one unforgiving hellhound. Only a
warrior will survive it.
We are still in the Dark Ages in our understanding of this brain
disorder. Currently, we only know about 10 percent of what we can know
about it, so we only have a primitive understanding. What leading
experts and researchers do say is that this is not a psychiatric
illness, but a medical one. It is not about character but about
chemicals. This makes sense to me, because when my son is properly
medicated, he is a different person--rational, sane, steady,
thoughtful. Off his meds, he is a tornado impossible to lasso. The
switch is that fast. Before the discovery of insulin, people also
believed diabetes was a mental illness. A person's blood sugar would
crash, and they would act drunk and irrational. People thought they
were insane. Since insulin, we now understand that diabetes is a
medical problem, not a psychiatric one. The problem is that while
insulin can manage diabetes 100 percent, bipolar meds can only manage
bipolar illness about 50 percent. The rest has to come from lifestyle
choices and a continued course of therapeutic treatment. Left
untreated, their pre-frontal lobe, the seat of their executive
functioning, remains impaired, so they continue to make irrational
choices about treatment and their own lives. It's a vicious cycle.
The majority of sufferers will end up with substance abuse
disorders in a desperate attempt to normalize their brains. It is
considered the most dangerous of any psychiatric illness (although it
is still misunderstood as such), because it carries the highest suicide
rate. It also carries the highest addiction rate.
Mental illness can strike any one of us or our loved ones at any
time. No one is immune. There are no antibodies for mental illness.
Like so many other families with mentally ill loved ones, I live on the
ropes, but I don't give up easily. I would be forever grateful for
caring advocates in Congress to join this battle, too.
The NIMH now has $2 billion in taxpayer funds to finance this
fight. Congress can begin by ensuring that NIMH's priority is the
development of cures and treatments for serious mental illnesses like
schizophrenia and bipolar. With proper support, there is hope on the
horizon. According to a recent article in the Psychiatric Times
entitled ``Riches Abound, So Where Are the Trials for Schizophrenia and
Bipolar Disorder?'' there are promising findings from small studies
that show that immune modulatory drugs have potential for the treatment
of schizophrenia and bipolar disorder. These should be followed up with
larger scale studies. Also showing promise and deserving of exploration
are neuro-hormones like estrogen and probiotics and other agents that
regulate the microbiome and gut-brain axis. Clozapine is the last new
psychiatric drug approved for psychosis. It was approved 30 years ago.
Why has progress in the development of psychiatric drugs slowed to such
a snail's pace even as the numbers of the mentally afflicted continue
to rise exponentially in our country? It is time for Congress to
declare a Manhattan Project for the mentally ill.
So many families display a quiet heroism and ``unyielding love''
for the mentally ill members of their tribes. It is an impossible,
Sisyphean ordeal. It is purgatory. The afflicted and their families
need an assist. They need a hand up out of hell.
______
Prepared Statement of Segal Stephen deg.
Prepared Statement of Stephen Segal
My name is Stephen Segal and I am a resident of Philadelphia. I am
writing to encourage you to require NIMH to provide more support for
trials for medications to treat bipolar disorder and schizophrenia.
My son has bipolar disorder. He was diagnosed at the age of 19 in
the 1999 and continues to live with it to this day. At times, his
journey has been heartbreaking. At other times, he manages well.
He has had numerous treatments, including ECT, TMS and ketamine
infusions, and has tried different drugs over the years. He had to
discontinue lithium, a foundation drug for him, because it was
endangering his kidneys. For him and the millions who also suffer from
these severe mental illnesses, the options are not sufficient when a
medication either doesn't work or stops working or the side effects are
too onerous to bear.
I am shocked that NIMH has actually reduced its support of drug
treatment trials for bipolar disorder and schizophrenia by 96 percent
since 2006! This is a disgrace. There is way too much suffering by the
millions of Americans with these illnesses and their families to
justify such diminished support. In addition, a person who is ill and
not successfully treated is both a threat to society and a drain on
society. People with untreated severe mental illness fill our jails and
emergency rooms. They comprise a large number of the homeless
population and they are more likely to be both victims of violent crime
and perpetuators of violent crime. They also account for many of our
nation's suicides. We all lose when someone is untreated or not treated
successfully.
However, when treated successfully as many are, they can be
productive and positive member of society. For those with bipolar
illness who are treated well, they are indistinct from anyone else.
Please use your influence to require more spending on drug trials
for bipolar disorder and schizophrenia. You will be saving lives and
families. Thank you.
______
Prepared Statement of the Sleep Research Society
fiscal year 2021 appropriations recommendations
_______________________________________________________________________
--SRS joins the broader medical research community in thanking
Congress for providing a $2.6 billion funding increase for the
National Institute of Health (NIH) for fiscal year 2020 and in
requesting a subsequent increase of at least $3 billion for
fiscal year 2021 to bring total agency funding up to a minimum
of $44.7 billion annually.
--Please provide proportional funding increases for all NIH
Institutes and Centers, including in particular the
National Heart, Lung, and Blood Institute (NHLBI), which
houses the National Center on Sleep Disorders Research
(NCSDR), and the National Institute of Neurological
Disorders and Stroke (NINDS). Sleep impacts nearly every
body system and the progress of many illnesses. As a
result, nearly every NIH Institute and Center conducts
sleep research, and NCSDR helps coordinate sleep research
activities across (and not just across NIH, but across the
Federal Government, including the Department of Defense and
the Veterans Administration).
--SRS joins the broader public health community in thanking Congress
for providing the Centers for Disease Control and Prevention
(CDC) with a modest funding increase for fiscal year 2020 and
in requesting a subsequent increase of at least $600 million in
discretionary resources for fiscal year 2021 to bring total
agency funding up to a minimum of $8.3 billion annually.
--Please also provide a dedicated, line-item appropriation of at
least $5 million to for a ``Chronic Disease Education and
Awareness Program'' at CDC (as proposed in the fiscal year
2020 House LHHS Appropriations Bill).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the Subcommittee, thank you for considering the views of the sleep,
circadian, and sleep disorders advocacy community as you work on fiscal
year 2021 appropriations for relevant medical research and public
health programs. We would like to take this opportunity to thank you
for providing meaningful investment in fiscal year 2020 for NIH and CDC
and to request that this investment continue in fiscal year 2021
considering recent progress and emerging opportunities.
about the sleep research society
The 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, circadian rhythmicity, and
sleep disorders. Since that time, SRS has grown into a professional
society comprising over 1,300 researchers nationwide. From promising
trainees to accomplished senior level investigators, sleep and
circadian 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, circadian
rhythmicity, and health outcomes. SRS promotes training and education
in sleep and circadian research, public awareness, and evidence-based
policy, in addition to hosting forums for the exchange of scientific
knowledge pertaining to sleep and circadian rhythms.
about project sleep
Project Sleep is a 501(c)(3) non-profit organization raising
awareness about sleep health and sleep disorders by working with
affected individuals and families across the country. Believing in the
value of sleep, Project Sleep aims to improve public health by
educating individuals and policymakers about the importance of sleep
health and sleep disorders. Project Sleep will educate and empower
individuals using events, campaigns, and programs to bring people
together and talk about sleep as a pillar of health.
cdc sleep disorders activities
For nearly a decade, CDC has supported the National Healthy Sleep
Awareness Project (NHSAP) with discretionary resources at about
$250,000 annually. Despite the severity and prevalence of sleep-related
health issues, NHSAP represented the only public health activity at CDC
devoted to sleep. This project has been highly successful by leveraging
voluntary contributions from leading sleep centers and organizations to
generate numerous research advancements, awareness campaigns,
professional publications, and peer-reviewed articles.
Despite the overwhelming support for the NHSAP and the request to
continue its core functions through key committee recommendations, CDC
terminated these activities for fiscal year 2019 (effectively halting
sleep-related public health efforts). The fiscal year 2020 House LHHS
Appropriations Bill proposed establishing a line item program for
``Chronic Disease Education and Awareness''. The sleep community is
highly supportive of this program and requests that it be included
again for fiscal year 2021 with an initial investment of $5 million.
Such action will allow organizations to compete for funding and for the
CDC to support timely and meritorious public health efforts.
nih sleep disorders activities
Over recent years, NIH has seen a meaningful infusion of essential
funding. This investment has improved grant funding pay lines, led to
significant scientific advancements, and helped to prepare the next
generation of young investigators. Due to the high quality of the
science, the sleep research portfolio has done well as a result of this
additional funding. In fact, NIH supported research was critical to the
circadian research project that received the 2017 Nobel Prize in
Physiology and Medicine. However, while the sleep portfolio overall is
strong, one area of potential improvement is investment in individual
sleep disorders. The research portfolios for specific conditions at
NIH, including Restless Legs Syndrome, circadian rhythm disorders, and
Narcolepsy, remain relatively modest. The research done in these
portfolios has a direct and sometimes immediate impact on patient
health and wellness.
Recently, the committee reports accompanying the L-HHS
appropriations bills have featured timely recommendations that
emphasize the value and importance of sleep, sleep disorders, and
circadian research. Moving forward, please continue to recognize the
progress made by NCSDR and the need to continue to advance this
research portfolio in a way that capitalizes on emerging opportunities
for patient benefit. Please also recognize the leadership of NINDS on
sleep disorders research activities.
brittany matthews from illinois
One February afternoon during Brittany Matthews' senior year of
high school, she awoke on her bedroom floor to her mom frantically
screaming at her for skipping school for the 20th time that year.
Brittany hadn't moved from the spot on the floor where she was doing
her makeup at 7 am when her mom left for work. However, Brittany was
confused because just a few minutes before this, she had thought she
actually was at school and this ``hypnopompic hallucination''
experience felt just as real as now finding herself still at home. When
the school informed Brittany's parents that she needed to go to court
for her truancy issues and was not likely to graduate on time, Brittany
was sent to live with her dad, who thought he could ``straighten her
out.'' That was one of the last straws in a sequence of events that
finally led Brittany to receiving a diagnosis of narcolepsy at age 19,
which was about 12 years after she began experiencing symptoms at the
young age of 7. Narcolepsy is a misunderstood and under-diagnosed
chronic neurological disorder affecting the brain's ability to regulate
the sleep/wake cycle with a prevalence of 1 in 2,000 people worldwide.
During the 5 years that followed, Brittany struggled in every
aspect of her life until eventually finding a more effective treatment
regimen, which allowed her to re-consider her dream of finishing
college. Last year, Brittany graduated with her Bachelor of Science
degree at the age of 26. Now, she is working full-time and is in the
process of applying for graduate school programs for speech language
pathology. Despite the progress she has made, Brittany still grapples
daily with excessive daytime sleepiness, as well as cataplexy (sudden
muscle weakness brought on by emotions). Advancements in research,
treatments, and awareness are critical to improve the lives of those
living with narcolepsy and other sleep disorders.
[This statement was submitted by Andrew Krystal, MD, MS, President,
Sleep
Research Society.]
______
Prepared Statement of Smith Yvonne deg.
Prepared Statement of Yvonne Smith
Dear Members of the NIMH Senate Committee,
This letter is to appeal on behalf of vulnerable members of our
society, those with serious mental illnesses such as Schizophrenia or
Bi-Polar disease. The population suffering from severe mental illness
is growing and their needs are acute. NIMH has consistently overlooked
this population in its efforts to find cures and treatments. This is
not acceptable.
So I am asking that you direct a portion of the 2021 budget
specifically to address the need for research to find cures for serious
and debilitating mental illness and to mandate that the NIMH pursue a
robust effort to find cures and effective treatments using the specific
budget allocated to these efforts.
Thank you so much for considering my request.
______
Prepared Statement of the Society for Healthcare Epidemiology of
America, the Association for Professionals in Infection Control and
Epidemiology, and the Society of Infectious Diseases Pharmacists
The Society for Healthcare Epidemiology of America (SHEA), the
Association for Professionals in Infection Control and Epidemiology
(APIC), and the Society of Infectious Diseases Pharmacists (SIDP) urge
appropriators to prioritize investments in the following Federal
programs:
------------------------------------------------------------------------
Fiscal Year
LHHS Programs Agency 2021 Funding
Request
------------------------------------------------------------------------
National Healthcare Safety Network..... CDC $25 million
Antibiotic Resistance Solutions CDC $200 million
Initiative............................
Advanced Molecular Detection........... CDC $57 million
Data Modernization..................... CDC $100 million
Patient Safety Research................ AHRQ $100.4 million
Healthcare-Associated Infections....... AHRQ $50.2 million
Combating Antibiotic-Resistant Bacteria AHRQ $13.9 million
Investigator-initiated Research........ AHRQ $73.8 million
Biomedical and Advanced Research and ASPR $230 million
Development Authority.................
------------------------------------------------------------------------
Congress has not appropriated new funding for the above listed
Federal programs for at least 10 years. These programs are critical for
preventing healthcare-associated infections (HAIs) and the spread of
antibiotic resistance (AR). New investments in these programs must be
prioritized to improve the quality of care delivered to every American
and to ensure advancements made possible by medical research and
innovation can be sustained.
Although dedicated prevention and infection control efforts have
helped reduce the number of infections and deaths caused by antibiotic
resistance, the 2019 Antibiotic Resistance Threats in the United States
report, published by the Centers for Disease Control and Prevention
(CDC), concludes that we are now in a post-antibiotic era where some
drugs no longer cure the infections they were designed to treat. In the
United States, 2.8 million antibiotic-resistant infections occur each
year resulting in 35,000 deaths. Suboptimal antibiotic use and
prescribing practices have led to nearly 223,900 C. difficile
infections, of which at least 12,800 people died in 2017.
We urge you to invest $25 million in the National Healthcare Safety
Network (NHSN). Although significant progress has been made in
preventing some HAIs, about one in 31 hospitalized patients (3.2
percent) develops at least one HAI. NHSN collects data on antibiotic
prescribing and the prevalence of HAIs. The NHSN is also continuing its
efforts to implement the antibiotic use and resistance module in
hospitals, which would help monitor the use of certain antibiotics and
the appearance of multidrug-resistant organisms in facilities. This
funding includes providing technical support to more 65,000 users
representing about 22,000 healthcare facilities across the continuum of
care. There have been no new investments in the NHSN for at least 10
years despite the exponential expansion of its utilization since its
inception. Increased funding is critical to ensure CDC's continued
efforts toward eliminating HAIs and optimizing antibiotic prescribing
practices.
We urge you to invest $200 million in the Antibiotic Resistance
Solutions Initiative (ARSI). To combat the post-antibiotic era in which
we now find ourselves, aggressive strategies must be adopted to make
meaningful progress against the threat of AR. The ARSI supports 50
state health departments, six large city health departments, and Puerto
Rico to detect, respond, and contain antibiotic-resistant pathogens.
Increasing investments in ARSI would enable them to sustainably expand
epidemiology, laboratory, and diagnostics capacity. The ARSI also
includes the Antibiotic Resistance Lab Network which is comprised of
seven regional labs that monitor and detect organisms that are
resistant to most or all antibiotics.
We urge you to invest $57 million in the Advanced Molecular
Detection (AMD) Initiative. AMD supports collaborative relationships
between academic research institutions and public health to facilitate
the development of new tools that detect disease faster, identify
outbreaks sooner, and protect people from emerging and evolving disease
threats. It informs vaccine and diagnostics development for new and
emerging diseases as well as identify and track AR. Right now, AMD
plays a critical role in the response to the growing global outbreak of
COVID-19. An increased investment in AMD will empower state and local
health departments with the ability to quickly develop targeted
prevention and control strategies during an outbreak caused by emerging
pathogen.
We urge you to invest $100 million in Public Health Data and IT
Modernization. Congress recognized that our nation's public health data
and infrastructure was dangerously antiquated by appropriating $50
million in new investments in fiscal year 2020. This new investment
allows CDC to support state, local, tribal, and territorial health
departments to begin the process of moving away from sluggish, manual,
paper-based data collection to seamless, automated IT systems as well
as recruit and retain skilled data scientists to use them. However in
order to fully meet the current needs of our nation's public health
data infrastructure, Congress will need to invest $100 million every
year for the next 10 years to ensure public health professionals are
consistently able to get ahead and stay ahead of emerging and urgent
HAI and AR threats. These sustained investments will also allow
policymakers to make better decisions informed by the expertise of the
public health workforce and enabled by strong data and health
information systems.
We urge you to invest $100.4 million for the Agency for Healthcare
Research and Quality's (AHRQ's) patient safety and research portfolio.
Specifically, we are seeking $50.2 million for research and
preventative strategies for healthcare-associated infections, $13.9
million for research and strategies to combat antibiotic resistant
bacteria, and $73.8 million to support investigator-initiated research
grants. AHRQ is the only Federal agency that funds research to study
the most efficient way to deliver healthcare while also improving the
quality of patient care and outcomes across the healthcare continuum.
Much of this research is conducted by leading medical investigators at
academic centers and other institutions of research across the country.
Congress has prioritized medical research investments for treatment and
cures over the last several years. While we commend these investments
in innovation, Congress must also prioritize research in discovering
the best methods for preventing HAIs and AR to ensure a safe
environment for delivering treatments and cures. AHRQ also provides
tools and training to implement research findings for the everyday care
of patients.
We urge you to invest $230 million for Broad Spectrum
Antimicrobials and CARB-X at the Biomedical Advanced Research and
Development Authority (BARDA). The BARDA Broad Spectrum Antimicrobials
program and CARB-X, programs within the office of the Assistant
Secretary for Preparedness and Response (ASPR), have demonstrated that
successful development of new FDA approved antibiotics is possible.
Without this investment, modern medical advances that have become
standard practice, such as chemotherapy and organ transplantation which
can only be sustained by the availability of antibiotics, may become
unavailable due to the high risk of infection.
The importance of investing in preparing for and responding to
emerging infectious disease threats has been highlighted in the ongoing
COVID-19 pandemic. The challenges we are facing today with the growing
prevalence in AR will get worse without new investments. Preventing
infections, improving antibiotic use, detecting threats, and
implementing interventions are essential to ensuring public health. The
societies thank you for this opportunity to submit testimony on behalf
of clinicians and researchers who champion infection prevention and
antibiotic resistance.
______
Prepared Statement of the Society for Maternal-Fetal Medicine
On behalf of the Society for Maternal-Fetal Medicine (SMFM), I am
pleased to submit testimony in support of the important work related to
women's and infants' health being conducted at the U.S. Department of
Health and Human Services for fiscal year 2021. SMFM urges Congress to
ensure that the Centers for Medicare and Medicaid Services (CMS),
Centers for Disease Control and Prevention (CDC), National Institutes
of Health (NIH), Health Resources and Services Administration (HRSA)
and Agency for Healthcare Research and Quality (AHRQ) are adequately
funded in fiscal year 2021. Specifically, SMFM urges the Committee to
support a total of $44.7 billion for the NIH, with $1.7 billion of that
total to fund the Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD), $8.3 billion for the CDC,
including $76 million for the Safe Motherhood Initiative, $8.8 billion
for the HRSA, including $715 million for the Title V Maternal and Child
Health Services Block Grant, $189 million for the National Center for
Health Statistics (NCHS), $471 million for AHRQ, and continued,
sustained, broad support for the U.S. Department of Health and Human
Services and programs relevant to pregnant and post-partum people and
their children.
Established in 1977, SMFM is the national voice for clinicians and
researchers with expertise in high-risk pregnancies. A non-profit
association representing more than 5,000 individuals, the core of
SMFM's membership is comprised of maternal-fetal medicine (MFM)
subspecialists. MFM subspecialists are obstetricians with an additional
3 years of formal education and who are board certified in maternal-
fetal medicine, making them highly qualified experts and leaders in the
care of complicated pregnancies. Additionally, SMFM welcomes physicians
in related disciplines, nurses, genetic counselors, ultrasound
technicians, MFM administrators, and other individuals working towards
optimizing the care of women with high-risk pregnancies.
SMFM members see the most at-risk and complex patients, with the
goal of optimizing outcomes for pregnant people and their children.
national institutes of health/nichd
The Eunice Kennedy Shriver National Institute for Child Health and
Human Development (NICHD)'s investment in maternal and child health
outcomes is essential to understanding the rising maternal mortality
and severe morbidity rates and to optimize maternal and child health.
Task Force Specific to Pregnant Women and Lactating Women (PRGLAC):
SMFM urges Congress to continue its strong support for the PRGLAC Task
Force, housed at NICHD. PRGLAC submitted its report to the Secretary in
the fall of 2018 with 15 recommendations on including pregnant and
breastfeeding people in clinical trials and broad research initiatives
and is now in the midst of creating its implementation plan, which is
expected in the summer of 2020. SMFM urges Congress to continue to
support the implementation of the PRGLAC recommendations. It is
essential that Congress support broader inclusion of pregnant and
lactating people in research, so that lifesaving interventions and
treatments can be addressed for this population.
Maternal-Fetal Medicine Units Network (MFMU): SMFM urges continued
strong support of the MFMU and ask that Congress allocate $30 million
to support the Network's continued work. Established in 1986 to achieve
a greater understanding and pursue development of effective treatments
for the prevention of preterm births, and reduce low birth weight
infants, fetal growth abnormalities, fetal mortality and medical
complications during pregnancy the MFMU is a critical resource to
addressing the nation's growing maternal health crisis. We hope that
the NICHD will leverage the MFMU to build on its success by ensuring
its highly efficient structure of multicenter collaborative research.
The MFMU has a strong history of changing and improving clinical
practice and obstetric management, improving outcomes of pregnant
people and babies in the United States, and is extremely successful, as
25.6 percent of all publications from the network are cited in clinical
practice guidelines. These guidelines are relied upon by Medicaid and
Medicare programs to define evidence-based services covered under the
plans. The work of the network is even more urgent given the increase
in maternal mortality and severe morbidity in the US. We urge Congress
to ensure stable and sustained funding and infrastructure for the MFMU,
and to ensure that any proposed change in the funding mechanism or
structure for the MFMU not compromise the ability of the network to
remain nimble and directly address the changing landscape of women's
health, including to reduce health disparities.
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. 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. $32.5 billion annually. Great strides are being made through
NICHD-supported research to address the complex situations faced by
mothers and their babies. One of the most successful approaches for
testing research questions is the NICHD research networks which allow
researchers from across the country to collaborate and coordinate their
work to change the way we think about pregnancy complications and
change medical practice across the country. These networks deal with
different aspects of pregnancy the problem of preterm birth and its
consequence.
centers for disease control and prevention (cdc)
The CDC's Division of Reproductive Health (DRH) as well as the
National Center for Birth Defects and Developmental Disabilities
(NCBDDD) are doing important work related to pregnancy. The data
collection efforts related to pregnancy outcomes, maternal mortality
and medications in pregnancy must continue. The support from CDC to
states related to data collection and especially maternal mortality
review committees will go a long way toward tackling this growing
public health problem. According to the NCHS, the maternal mortality
rate in 2018 was 17.4 deaths per 100,000 live births and racial
disparities persisted with a maternal mortality rate of 37.1 per
100,000 live births among non-Hispanic black women compared to 14.7
among non-Hispanic white women. SMFM fully supports Congress' attention
to reducing maternal mortality through CDC's Safe Motherhood
Initiative, supporting the highest possible allocation for this work.
We ask Congress to allocate $30 million for the maternal mortality
review committees (MMRCs) and their continued work. Funding for
perinatal quality collaboratives (PQCs) and other initiatives that
would investigate and transparently report on maternal mortality causes
while reducing health disparities are essential in tackling our
nation's rising maternal mortality rates. We also ask Congress to
allocate $100 million for the CDC's Surveillance for Emerging Threats
to Moms and Babies initiative.
health resources and services administration (hrsa)
The work of HRSA is critical to maternal and child health. HRSA's
initiatives reduce infant mortality, improve maternal health and
wellbeing, and serve more than 50 million people through the MCH block
grant. The MCH block grant is critical to ensure that women and their
children have access to quality care. These funds provide and ensure
access to comprehensive prenatal and postnatal care to women--
especially low income and at-risk pregnant people. The Title V MCH
Block Grant programs save Federal and State Governments money by
ensuring delivery of preventive services to avoid more costly chronic
conditions later in life. Additionally, HRSA's family planning
initiatives ensure access to comprehensive family planning and
preventive health services for more than 4 million people, thereby
reducing unintended pregnancy rates. Finally, HRSA's support for the
Alliance for Innovation in Maternal Health Care (AIM) reduces maternal
mortality through implementation of care bundles at the state and
institutional level. These bundles help reduce maternal mortality
through quality improvement in various areas including postpartum
hemorrhage and hypertension. We encourage Congress' support for this
important program that will help reduce maternal mortality nationally.
agency for healthcare research and quality (ahrq)
Projects conducted at the Agency for Healthcare Research and
Quality (AHRQ) are critical to ensuring that research is translated
from bench to bedside through comprehensive implementation in the
everyday practice of medicine. Unfortunately, over the past decade,
AHRQ's existence has been under threat. AHRQ is the only Federal agency
that funds research on ``real-life'' patients--those with comorbidities
and co-existing conditions, including high-risk pregnant people. In
2000, an estimated 60 million Americans had multiple chronic
conditions. By 2020, an estimated 81 million people will have multiple
chronic conditions, and the costs of their care will consume 80 percent
of publicly funded health insurance programs, such as Medicare and
Medicaid. SMFM hosted a workshop in February 2020 on implementation
practices in maternal mortality. AHRQ's support in ensuring widespread
uptake among providers, public health officials, health systems and
states is essential to ensuring that best practices and guidance is
implemented broadly to reduce maternal mortality and severe maternal
morbidity.
Prioritizing Maternal Health During COVID-19: The COVID-19 pandemic
has exposed the existing inequities and gaps within our healthcare
system for people across the country, including pregnant people. It is
now more important than ever to ensure that pregnant and lactating
people are being included in clinical research related to COVID-19 and
vaccine and therapeutic development. We urge HHS to prioritize and
adequately fund efforts for maternal health that aim to reduce maternal
mortality and severe morbidity during and after the pandemic.
conclusion
With your support of vital HHS programs, researchers, clinicians
and patients can continue to peel away the layers of complex problems
of pregnancy that have such devastating consequences and truly improve
the health and wellbeing of mothers and babies.
[This statement was submitted by Dr. Judette Louis, MD, MPH,
President,
Society for Maternal-Fetal Medicine.]
______
Prepared Statement of the Society for Neuroscience
Mr. Chairman and members of the Subcommittee, I am Barry Everitt,
President of the Society for Neuroscience (SfN) and it is my honour to
present this testimony on behalf of the Society in strong support of at
least $44.7 billion, a $3.0 billion increase over fiscal year 2020, in
funding for the National Institutes of Health (NIH) for fiscal year
2021, including the release of the 21st Century Cures funding. As both
a researcher and as a Professor in the Department of Psychology at
Cambridge University, I understand the critical importance of Federal
funding for neuroscience research in the United States.
My own research focuses on the neural and psychological basis of
drug addiction and is dedicated to understanding the maladaptive
engagement of the learning, memory, and motivational mechanisms that
underlie compulsive drug use. Drug abuse and addiction are critical
issues in my country as in yours, having devastating consequences at
the individual, family, and society levels. My research group has made
significant advances in showing that structural and neurochemical
changes in the brain associated with behavioral impulsivity confer a
major risk on the vulnerability to develop cocaine addiction. We have
also demonstrated the neural circuit basis of the transition from
recreational to the compulsive use of opioids, stimulants and alcohol,
revealing commonalities as well as differences in the neural basis of
addiction to these drugs. This understanding has opened the door to the
development of novel pharmacological and psychological treatments for
addiction that may promote and maintain abstinence from drug use. For
example, we have shown that a novel opioid receptor antagonist greatly
decreases opioid, cocaine, and alcohol use in animal models, as well as
showing its efficacy and safety in experimental studies in humans. We
have further revealed that reducing the impact of maladaptive drug
memories can promote abstinence from drug use, as well as being
effective in the treatment of anxiety disorders and post-traumatic
stress disorder (PTSD). The NIH, especially NIDA and NIAAA, supports
the great majority of the global research on addiction and its
treatment and this is a shining example of how governmental funding for
research in the US leads the world and inspires related and
collaborative research internationally on this major brain disorder.
SfN believes strongly in the research continuum: basic science
leads to clinical innovations, which lead to translational uses that
impact the public's health. Basic science is the foundation upon which
all health advances are built. However, basic research depends on
reliable, sustained funding from the Federal Government. SfN is very
grateful to Congress for its appropriations and increases for NIH over
the last 5 years. Growing the NIH budget over $11 billion in that
period is exactly the kind of sustained effort that is needed, and your
continued support will pay dividends for years to come.
SfN stands with the more than 335 organizations and institutions in
the biomedical research community supporting an increase in NIH funding
of at least $3.0 billion above the final fiscal year 2020 level,
including the release of the 21st Century Cures funding. This increase
is consistent with those provided by this committee for the past few
years and provides certainty to the field of science, allowing for the
exploitation of more scientific opportunity, more training of the next
generation of scientists and more improvements in the public's health.
Equally as important as providing a reliable increase in funding
for biomedical research is also ensuring that funding is approved
before the end of the fiscal year. Your success in 2018 in completing
appropriations prior to the start of the fiscal year was a tremendous
benefit to research. Continuing Resolutions have significant
consequences on research, including restricting NIH's ability to fund
grants. For some of our members, this means waiting for a final
decision to be made on funding before knowing if their perfectly scored
grant would in fact be realized, or operating a lab with 90 percent of
the awarded funding until appropriations are final. All of this has
real and negative impacts on research and all of the positive benefits
that research provides in this country. Meeting the example you set in
2018 would be another substantial benefit to science.
I would also like to express my and the Society's appreciation for
your support of the Brain Research through Advancing Innovative
Neurotechnologies (BRAIN) Initiative. While only one part of the
research landscape in neuroscience, the BRAIN Initiative has been
critical in promoting future discoveries across neuroscience and
related scientific disciplines (see an example below). By including
funding in 21st Century Cures--and note that it is only part of the
funding that the BRAIN Initiative will require--Congress helped
maintain the momentum of this endeavor. Note however, using those funds
to supplant regular appropriations would be counterproductive. There is
no substitute for robust, sustained, and predictable funding for NIH.
The deeper our grasp of basic science, the more successful those
focused on clinical and translational research will be. We use a wide
range of experimental and animal models that are not used elsewhere in
the research pipeline. These opportunities create discoveries--
sometimes unexpected discoveries--that expand knowledge of biological
processes, often at the molecular level. This level of discovery
reveals new targets for research to treat all kinds of brain disorders
that affect millions of people in the United States and beyond.
As the leading scientific society dealing with the brain and the
central nervous system, SfN hosts one of the largest annual scientific
meetings and publishes two highly-rated scientific journals where
scientific discoveries are put on display. Some recent, exciting
advancements include the following:
Decoding Speech From the Brain
The BRAIN Initiative has been key for developing new technologies
that may one day be used in the clinic. For patients suffering from a
stroke and other neurological disorders, the loss of speech due to
paralysis in the muscles in their face and neck can be devastating and
leaves few ways to communicate quickly or easily. While there are
devices that allow the use of head or eye movements to produce speech,
these currently rely on choosing individual words or letters one at a
time and are consequently very slow. Researchers hoping to close this
communication gap recorded the brain activity of volunteers when
speaking, including their muscle movements associated with speech. They
were then able to use machine learning techniques to decode these brain
signals, creating simulated movements of the vocal track that could be
turned into synthesized speech. Testers asked to transcribe these
sentences were able to accurately determine the phrases more than half
of the time. While further refinement and testing is needed before this
technology can be used with patients, it provides a path towards
restoring speech those who have lost the ability.
Generating a Library of New Molecules
The discovery of new molecules and compounds is critical to
developing new drugs to treat mental illnesses and other neurological
disorders. To facilitate this, scientists funded by NIH have created an
expanding virtual library of what will soon be 1 billion new molecules
that can be tested for compatibility with specific receptors in the
brain. Using this expansive library, researchers were able to model how
each molecule would interact with the receptor they were interested in
blocking and then choose the most likely candidates to test in the lab.
Through this method, they were able to generate six new molecules that
interacted specifically with a dopamine receptor type linked to
schizophrenia, ADHD, Parkinson's disease, and other neurological
conditions. The creation of this extensive, publicly available library
will allow researchers around the world to expand their search for new
treatments.
summary and conclusion
NIH funding is not only critical for the future of biomedical
research and for training researchers at the bench, but is also a key
economic driver of science in the United States through funding
universities and research organizations across the country. For this
nation to remain a leader in biomedical research, Congress must
continue to support basic research that fuels discoveries as well as
the economy.
To reiterate, the Society for Neuroscience strongly supports the
appropriation of at least $44.7 billion for the National Institutes of
Health for fiscal year 2021, including the release of the 21st Century
Cures Act funding. Like the Subcommittee, we also strongly support the
appropriation of this funding in a timely manner, one that avoids
delays in approving new research grants or causes reductions in funding
for already approved research funding.
Thank you for your strong and continued support and I look forward
to working with you to ensure that research remains central to the
economy and remains a priority of the Congress. The trinity created
among Congress, the NIH, and the scientific research community has
created great benefits for the United States, its people, and those
suffering from diseases and disorders. As an international researcher,
I also see clearly the global impact of your funding of the NIH. On
behalf of the Society for Neuroscience, I urge you to continue it.
[This statement was submitted by Barry Everitt, Sc.D., F.R.S.,
President, Society for Neuroscience.]
______
Prepared Statement of the Society for Women's Health Research
On behalf of the Society for Women's Health Research (SWHR), I am
pleased to submit testimony to the Subcommittee on Labor, Health and
Human Services, and Education, and Related Agencies. We will highlight
important work related to women's health being conducted at the U.S.
Department of Health and Human Services (HHS) for fiscal year 2021.
With that in mind, SWHR urges Congress to ensure the Centers for
Medicare and Medicaid Services (CMS), Centers for Disease Control and
Prevention (CDC), National Institutes of Health (NIH), Health Resources
and Services Administration (HRSA) and Agency for Healthcare Research
and Quality (AHRQ) are adequately funded in fiscal year 2021.
We specifically urge the Committee to support a total of $44.7
billion for the NIH, including proportional increases to fund the
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD) and Office of Research on Women's Health (ORWH). We
support at least $8.3 billion in funding for the CDC; $8.8 billion for
HRSA, including at least $715 million for the Title V Maternal and
Child Health (MCH) Services Block Grant; and $471 million for AHRQ. We
encourage continued, sustained, broad support for HHS and programs
relevant to women's health and women's health research.
Founded in 1990, SWHR is the thought leader in promoting research
on biological sex differences in disease and improving women's health
through science, policy, and education. An appropriately funded, robust
Federal research agenda that is committed to furthering women's health
research is critical for the U.S. to address gaps in knowledge and
achieve equity in healthcare for women.
national institutes of health (nih)
The NIH is America's premier medical research agency and the
largest source of funding for biomedical and behavioral research in the
world. As such, its public health mission is vital to promote the
overall health and well-being of Americans by fostering creative
discoveries and innovative research, training and supporting
researchers to ensure continued scientific progress, and expanding the
scientific and medical knowledge base.
Multiple initiatives within the NIH are aimed at improving the
health of women. The agency released its Trans-NIH Strategic Plan for
Women's Health Research in April 2019, which laid out broad agency
goals to complement its more targeted women's health programs. The
NIH's emphasis on improving standard research methodologies to better
address sex and gender and funding relevant women's health research
makes continued strong support of this agency fundamental to supporting
women's health.
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD)
Housed within the NIH, the NICHD has achieved extraordinary feats
in research on women's health throughout the lifecycle. The NICHD
conducts critical and timely studies that support the health of women
and children--such as the recently launched study analyzing the effects
of the COVID-19 pandemic on pregnancy and delivery nationwide. It is
only with adequate resources that the NICHD can build upon new and
existing initiatives to address knowledge gaps and identify solutions
to benefit women, children, and families throughout the U.S. Several of
these initiatives are detailed below.
Reproductive Sciences: The NICHD's reproductive biology research is
vital in improving treatment options for serious gynecologic
conditions. Research on many of these conditions is broadly underfunded
in proportion to their significant burden on millions of women. For
example, more than 11 percent of reproductive-aged women are living
with endometriosis, and more than 80 percent of African American women
and almost 70 percent of white women will develop uterine fibroids at
some point in their lifetime. Despite the prevalence of these diseases
and their potentially severe effects on women, their families, and
society, a clear understanding of the basic biology behind these
conditions is lacking, resulting in delayed diagnosis and limited
treatment options. Given the history of limited funding allocated to
research on these conditions, it is imperative that the NICHD receive
robust funding to continue and expand upon this essential work.
Task Force on Research Specific to Pregnant Women and Lactating
Women (PRGLAC): The NICHD is leading the field in supporting inclusion
of pregnant and lactating women in clinical trials. Pregnant women
historically have been excluded from research--even in studies that
would advance knowledge of medical conditions and treatments in
pregnancy. The PRGLAC task force is now in the second phase of its
efforts to develop a strategy to implement 15 recommendations outlined
in its mandated report to Congress and HHS. The NICHD must have
sufficient resources for PRGLAC to continue its important work in this
area.
PregSource: The NICHD's PregSource initiative allows pregnant
women to track health data from gestation to early infancy and access
evidence-based information about normal and abnormal pregnancy
experiences. This program encourages researchers to use aggregated data
and recruit pregnant and postpartum women in clinical trials. It is
making important headway in eliminating knowledge gaps and imbalances
in care for these understudied patient populations.
Maternal Mortality: The NICHD's Pregnancy and Perinatology Branch
plays a pivotal role in supporting research to improve the health of
women before, during, and after pregnancy. Its work is central in
continuing to reduce the number of preterm births and pregnancy and
delivery complications, and in ensuring the long-term health of mothers
and their children. Approximately 10 percent of births in the US are
preterm, and rates are much higher in some minority populations. The
2018 US maternal mortality rate was 17.4 deaths for every 100,000 live
births--meaning the US is faring much worse than comparatively wealthy
countries. Research conducted in these areas by the NICHD and other
agencies will be crucial in limiting the number of pregnancy-related
complications and deaths in the US.
Office of Research on Women's Health (ORWH)
As the NIH focal point for coordinating women's health research,
the ORWH ensures women are appropriately represented in biomedical and
behavioral research supported by the NIH. SWHR has long supported the
idea that studying, analyzing, and reporting on sex differences should
be standard practice across all research. It is well-known that sex
differences exist at all levels: cellular, molecular, and systems.
Furthermore, it is understood that these differences affect research
outcomes in a variety of significant ways.
In 2015, the NIH announced a policy (NOT-OD-15-102) to factor sex
as a biological variable (SABV) into research designs, analyses, and
reporting for NIH-funded vertebrate animal and human studies. The ORWH
leads collaborations across the NIH to implement this policy and
develop research programs such as Building Interdisciplinary Research
Careers in Women's Health (BIRCWH), an initiative that aims to increase
the number and skills of investigators who conduct research on sex and
gender influences on health and disease. The Specialized Centers of
Research Excellence (SCORE), another signature ORWH program, is
designed to expedite the development and application of new knowledge
to human diseases that affect women, to learn more about the etiology
of these diseases, and to foster improved approaches to treatment and/
or prevention. The ORWH needs adequate funding to continue these
initiatives and to support scientists across the country who are
conducting groundbreaking research on sex differences.
National Institute on Minority Health and Health Disparities (NIMHD)
The NIMHD serves as the leader on scientific research initiatives
dedicated to improving minority health and reducing health
disparities--differences in the incidence and outcome of health
conditions among specific populations defined by race or ethnicity, sex
and gender, disability status, geographic location, or other
sociodemographic classifications. The NIMHD invests in critical
research on minority health and health disparities. Its work informs
practice and policy to increase the scientific community's focus on
equally important non-biological factors such as socioeconomics,
discrimination, culture, and environment in relation to health
disparities.
centers for disease control and prevention (cdc)
The CDC's Division of Reproductive Health (DRH) and its goals of
improving women's health from menarche to menopause; improving
pregnancy health and care; and improving fetal, newborn, and infant
health are areas of fundamental importance to women and their families.
The DRH's work to address issues of chronic disease among women of
reproductive age and its data collection efforts related to pregnancy
outcomes, maternal mortality, and medications in pregnancy must
continue. Funding for maternal mortality review committees (MMRCs),
perinatal quality collaboratives (PQCs), and other initiatives that
investigate and transparently report on maternal mortality causes while
reducing health disparities are essential in tackling our nation's
rising maternal mortality rates.
Additionally, the CDC's work will be vital to continued disease
monitoring and prevention during the novel coronavirus outbreak.
Studying sex and gender differences in COVID-19 infection rates and
outcomes will help us to figure out why the virus is affecting men more
severely and to understand how we can better improve our responses to
future pandemics. Increasing CDC funding for pandemic response will
improve the agency's ability to collect reliable, consistent data about
COVID-19, including sex and gender differences in deaths, symptoms,
risk factors, and virus exposure.
health resources and services administration (hrsa)
The work of HRSA is crucial to women's health. HRSA's initiatives
reduce infant mortality and improve maternal health and wellbeing
through its support of pregnant women, mothers, and their families. The
Title V Maternal and Child Health (MCH) Block Grant is specifically
tailored to address the needs of pregnant women and their families by
providing access to comprehensive prenatal and postnatal care to
women--especially low-income and at-risk pregnant women. HRSA support
saves Federal and State Governments money by ensuring delivery of
preventive services to avoid more costly chronic conditions later in
life.
Agency for Healthcare Research and Quality (AHRQ)
AHRQ ensures that research is translated from bench to bedside
through comprehensive implementation in the everyday practice of
medicine. AHRQ is the only Federal agency that funds research on
``real-life'' patients--including women with comorbidities and co-
existing conditions and high-risk pregnant women. Approximately 38
percent of women have a least one diagnosed chronic disease, as
compared to 30 percent of men, making this a topic of particular
relevance to women's health, as individuals with complex comorbidities
are typically excluded from research studies. Budget cuts in recent
years have led to termination of various disease programs and
portfolios, limiting the impact of AHRQ's important work. Increasing
AHRQ's funding will lead to better care for women and for all
Americans.
conclusion
In conclusion, I would like to thank the Chair, Ranking Member, and
the Committee for their support for medical and health services
research and their commitment to the health of the nation. Thank you in
advance for consideration of this HHS fiscal year 2021 funding request
and the rationale behind it. If you have questions, please contact
Melissa Laitner, PhD, MPH, Director of Science Policy, at
[email protected].
[This statement was submitted by Kathryn G. Schubert, President &
CEO,
Society for Women's Health Research.]
______
Prepared Statement of Texas Families and Friends for Choice
Chairman Blunt, Ranking Member Murray, and Committee Members,
Thank you for your service and for affording families the
opportunity to present testimony.
interest and request of texas families and friends for choice
I am Debra Wallace of Red Rock, Texas and mother of Justin Wallace,
aged 39, who is severely autistic and profoundly communicatively and
behaviorally impaired. I am submitting this testimony not only on
behalf of my child, but for all residents of the Texas state centers
and their families, who view those same centers as a safe and
supportive community that is uniquely theirs. The Texas Families and
Friends for Choice (TFFC) is comprised of those guardians who choose to
place their loved in one of our thirteen (13) Texas centers.
Justin lived at home for 18 years with me, my husband and his four
siblings. All therapies were attempted, and doctors were consulted to
help our precious child. When our autistic little boy morphed into a
strong young man, we realized our greatest fear; we were no longer
physically capable of managing his care and safety. Initially, we were
pushed to place him in a group home situation, but the outcomes for
those individuals with a high level of need in ``community'' homes were
often troubling and even tragic.
Today, he happily resides at the Austin State Supported Living
Center, where he participates in activities, and, like many other
residents, works at the sheltered workshop for his weekly paycheck.
Like the many members of TFFC, we chose to place our severely disabled
child in a facility that would keep him safe and provide a community
that would truly understand his needs. Unlike the understaffed and
isolating group homes, the Intermediate Care Facility (ICF) staff meet
our severely disabled loved ones where they are, rather than forcing
them into a world that overwhelms and misunderstands them. The centers
provide twenty four (24) hour medical care, field trips, computer,
swimming, gardening, holiday events, choir, music therapy and so much
more.
After years of struggle and fighting for our children, families
believed we had found the best life for them. But that was not to be.
The funds that have flowed from the Federal Government have created a
battlefield in many states, closing many facilities, denying IDD people
their safe havens or even their lives. Families are bankrupting
themselves in order to oppose the skewed ideology of ``community
first'' that is being funded by the Federal Government. Therefore, TFFC
is requesting relief from the Department of Health and Human Services
(HHS) programs and policies which undermine Texas ICF centers and
attempt to deny guardians their right to chose the best program/
placement for their loved ones.
hhs dd act programs in texas
As a parent I have witnessed first hand the propaganda used against
the ICF centers and the families that support them by recipients of DD
Act funds. Health and Human Services (HHS) through its grants to
programs created under the Developmental Disabilities Assistance and
Bill of Rights Act (Public Law 106-402--the DD Act) has been
responsible for many of the groups intent on closing Texas' larger
residential centers for persons with cognitive deficits and other
developmental disabilities.
Health and Human Services (HHS) through its grants to programs
created under the Developmental Disabilities Assistance and Bill of
Rights Act (Public Law 106-402--the DD Act) has been responsible for
many of the groups intent on closing Texas' larger residential centers
for persons with cognitive deficits and other developmental
disabilities. The DD Act programs are: (1) State Councils on
Developmental Disabilities, (2) Protection and Advocacy (P&A) systems,
(3) National Network of University Centers for Excellence in
Developmental Disabilities Education, Research and Service (UCEDD)
programs and (4) Projects of National Significance (PNS).
There have been no Congressional hearings on the DD Act in over 20
years. It was last reauthorized in 2000 for a period of 7 years. Why
does Congress continue to fund programs without opportunity for
families adversely affected to provide testimony? How will this
subcommittee protect Justin and his peers from destructive policies and
activities promoted and carried out by those who are on the Federal
payroll? Each legislative session, the Arc, the Protection and Advocacy
group, Disability Rights, and the Coalition for Texans with
Disabilities have testified that our life-saving centers should be
closed, forcing our most vulnerable loved ones into unstable and
treacherous situations. In fact, during a 2014-2015 attempt to close
centers in Texas by HHS, fifty (50) IDD men were evicted from the
Austin State Supported Living Center, and subsequently a minimum of
twenty percent of them died within a short span. One resident, who was
placed there by his parents, had lived at the center for fifty years
due to a severe seizure disorder. Following the death of his parents,
his guardianship was given to an agency who clearly had a conflict of
interest, as it was a community group home provider. He passed away two
weeks after his move. His family's wishes were ignored, because of an
aggressive push from these federally funded ideologues. Often, TFFC
families must drive across our vast state to counter the ``advocates''
testimony and attempt to halt closures and save lives. As there is no
agency funded to defend these facilities against closures, families
have to find ways to mount a legal defense on their own. Advocacy
groups do not protect those who move into the perfect mythological
community, as it would deny their very purpose for existence.
Families have also witnessed the testimony of ``advocates'' to
limit or sunset guardianships. After many years of loving, sacrificing
for, and fighting for a beloved child, families hardly need a
professional advocate who has a ``one size fits all'' outcome in mind
to take control of their child's/sibling life. Guardians are under
siege in Texas, and I have witnessed suggestions to legislators that
guardianships be ``sunsetted''. What better way to expedite the closing
of care facilities and eliminate choice than to vacate guardianships?
Again, the agency pushing this strategy, is partially funded by the
Texas Council on Developmental Disabilities (TCDD).
The Texas Advocates, who are funded by the Texas Council on
Developmental Disabilities, made an initial visit to the Austin SSLC in
February of 2019. I attended the meetings their director and grant
writer had set up for residents of the facility. It was evident that
the objective of the program was to persuade residents of the facility
to leave and live in a group home setting. During their meeting, the
mentors instructed the peer advocates to get permission from the
residents to participate in the program, and if the resident was
incapable of responding, they could state that a blink was consent. If
this was challenged by the guardian, a hearing could be set up to
override the guardian's decision. When I asked for a copy of the grant,
everyone ceased talking. The grant writer would not respond to me.
Later in the conversation, the mentor reminded the peer advocates that
there would be a scheduled deinstitutionalization rally on the steps of
the Texas Capitol in March. In the next session that same day, I
witnessed two severely disabled elderly women wheeled in. It was
inappropriate, as they were unable to answer questions or play games.
They were both suffered from severe cerebral palsy and IDD and had been
forced to come to the meeting on that cold, wet February afternoon.
Over the next few months, I witnessed this repeatedly. I complained to
the Human Rights officer and never received a response. One young man,
who came in later and stated that he did not want to leave the center
was pressured by the group and the mentors. Guardians were openly
criticized as being obstacles to success on a regular basis. Funding
for this program comes from the TCDD.
The Arc has openly stated that Money Follows the Person funds would
be used to assist in closing facilities. They testify and pressure
legislators to close centers in Texas. Employees have been known to
mock family members and coach their advocates to tell families that
they are selfish for placing loved ones in a care facility rather than
keeping them home (not always possible), or that they are taking funds
from the community programs. Meanwhile, they do not assist desperate
families, like my own, in placing their loved ones who could never
thrive in a group home, into facilities. Last night I listened to a
desperate single mother who is in her sixties, plead for help in
placing her three hundred (300) pound 35 year old, violent, self
injurious, severely autistic son into a facility. The Arc nor
Disability Rights will assist her.
request
We respectfully request you consider report language in the fiscal
year 2021 LHHS spending bill barring Federal funds from incentivizing
states to close their specialized facilities for persons unable to care
for themselves. Suggested Report Language for fiscal year 2021 Spending
Bill, Attachment 2.
Respectfully submitted.
[This statement was submitted by Debra Wallace, Texas Families and
Friends for Choice.]
______
Prepared Statement of the Tourette Association of America
Dear Chairman Blunt, Ranking Member Murray and Members of the
Subcommittee:
The Tourette Association of America (TAA) would like to take this
opportunity to thank the members of the Subcommittee for the
opportunity to submit written testimony and for considering our request
for funding for fiscal year 2021. The Centers for Disease Control and
Prevention (CDC) play a pivotal role in educating the public. To that
end, the Tourette Syndrome Public Health Education and Research Program
at the CDC is critically important to the TS and Tic Disorder
community. We respectfully request that you continue funding the
enacted level $2 million appropriation for the program in fiscal year
2021 Labor, Health and Human Services (LHHS), Education and Related
Agencies Appropriations. The program on Tourette Syndrome is
administered within the National Center on Birth Defects and
Developmental Disabilities (NCBDDD) at the CDC, in partnership with the
TAA. This program was established by Congress in the Children's Health
Act of 2000 (Public Law 106-310 Title 23) and is the only such program
that receives Federal funding for Tourette Syndrome (TS) public health
education. With your support at the previously enacted level of $2
million, CDC can ensure critically necessary progress continues in the
areas of public education, research and diagnosis for TS and Tic
Disorders.
The TAA is the premier national non-profit organization working to
make life better for all people affected by TS and Tic Disorders. We
have served in this capacity for 46 years. Tics are involuntary,
repetitive movements and vocalizations. They are the defining feature
of a group of childhood-onset, neurodevelopmental conditions known
collectively as Tic Disorders and individually as Tourette Syndrome,
Chronic Tic Disorder (Motor or Vocal Type), and Provisional Tic
Disorder. People with TS and Tic Disorders often have substantial
healthcare costs across their lifespan for healthcare visits, special
educational services, medication, and psychological and behavioral
counseling. In a recent survey conducted by the TAA (2018 TAA Impact
Survey: https://tourette.org/research-medical/impact-survey/), 63
percent of parents struggle to cover the high costs of services for
their child such as counseling, appointments and tutoring; 34 percent
of parents report they lost their job or they are not able to work as
often due to the increased caregiver duties of having a child living
with TS; and, 18 percent of parents are not able to afford medications
and/or desired medical care for their child.
The CDC Tourette Syndrome Website (https://www.cdc.gov/ncbddd/
tourette/data.html) on data and statistics states that data suggests
roughly 50 percent of children and teens with TS are not diagnosed.
Studies including children with both with diagnosed and undiagnosed TS
have estimated that 1 out of every 162 children (0.6 percent) have TS.
However, these numbers do not include children with Chronic or
Provisional Tic Disorders. The estimated combined total of all school-
aged children with TS or another related Tic Disorder is approximately
1-in-100. Factoring in lifelong prevalence, we estimate 1 million
adults and children are living with Tourette Syndrome or another Tic
Disorder in the United States today. Diagnosis is often complicated.
Among children diagnosed with TS, 86 percent have been diagnosed with
at least one additional mental, behavioral, or developmental condition
according to the CDC website. These co-occurring conditions include
Attention Deficit-Hyperactivity Disorder (ADHD), Obsessive Compulsive
Disorder (OCD), Autism, Oppositional Defiance Disorder, anxiety,
depression, learning difficulties among others and can significantly
impact the lives of those affected by TS. In fact, in TAA's 2018 Impact
Survey, 42 percent of children felt that dealing co-occurring
conditions was one of the biggest challenges in managing TS. In
addition, 32 percent of children and 51 percent of adults have
considered suicide or participated in self-harming behaviors. This
underscores the need to increase the diagnosis rate so physicians,
teachers and parents can ensure that adequate support services are in
place. The CDC TS Program works to ensure primary care, family doctors
or pediatricians are equipped with the additional knowledge necessary
either to diagnose or to refer a patient for optimal treatment.
Education professionals often do not receive detailed instruction
on how to assess and accommodate students who may have TS and Tic
Disorders. A study published in the Journal of Developmental &
Behavioral Pediatrics and written in partnership between the CDC and
the Tourette Association of America, ``Impact of Tourette Syndrome on
School Measures in a Nationally Representative Sample'', found children
with Tourette were more likely to have an individualized IEP, have a
parent contacted about school problems and have incomplete homework as
compared to children without Tourette or a Tic Disorder. Additionally,
most children with Tourette Syndrome had other mental, behavioral, or
emotional disorders or learning and language disorders. In TAA's 2018
Impact Survey, 83 percent of children felt that TS negatively impacted
their school experience and education and 69 percent of parents noted
their child having an individualized education plan (IEP) or 504 plan
in place at their school. Educators spend a significant amount of time
with their students providing more opportunities to assess symptoms and
behavior over a longer period of time. By increasing their knowledge
base and understanding of Tourette Syndrome, Tic Disorders and
associated co-morbidities, educators can refer students for medical
assessment and can also better serve the needs of this population whose
challenges are unique to the disorder. Educators can then begin to work
more closely with medical providers to develop effective,
individualized education plans.
TS and Tic Disorders are greatly misunderstood and often suffer
from misinformation and stigma. For example, coprolalia, the
involuntary utterance of obscene and socially unacceptable words and
phrases, is an extreme and rare symptom often sensationalized by the
media. Less than 10 percent of those diagnosed have this symptom, it is
not required for diagnosis, and does not persist in many cases. The CDC
TS Public Health, Education and Research Program provides important
information on symptoms/diagnostic criteria on their website and
through the outreach program educating the public and parents on
Tourette Syndrome and Tic Disorders to ensure a better understanding
which can lead to better diagnosis, earlier treatment and a better
understanding.
Delayed diagnosis or the lack of diagnosis can increase healthcare
costs, increase education costs and delay important treatment and
therapy for the patient. Comprehensive Behavior Intervention for Tics
(CBIT) is a non-medicated treatment consisting of three important
components: training the patient to be more aware of his or her tics
and the urge to tic; training patients to do competing behavior when
they feel the urge to tic; and, making changes to day-to-day activities
in ways that can be helpful in reducing tics. CBIT is now recognized as
a first line treatment by the American Academy of Neurology: https://
www.aan.com/Guidelines/Home/GuidelineDetail/958. The CDC Tourette
Syndrome Public Health, Education and Research Program strives to
increase the understanding and awareness among these critically
important medical and education professionals to increase the
percentage of school aged children with TS who are diagnosed, improve
the timeframe from symptoms to diagnosis and educate them about
treatment options like CBIT.
We appreciate the opportunity to submit testimony and appreciate
your thoughtful consideration of our request. TAA urges you to provide
continued funding for fiscal year 2021 for the Tourette Syndrome Public
Health Education and Research Program at CDC's National Center for
Birth Defects and Developmental Disabilities at the previously enacted
level of $2 million.
______
Prepared Statement of the Trauma Coalition
As you consider Labor Health and Human Services appropriations for
fiscal year fiscal year (2021), the Trauma Coalition, a broad group of
organizations representing the nations frontline trauma providers,
writes to ask the Committee to provide $11.5 million in funding for the
Military and Civilian Partnership for the Trauma Readiness Grant
Program.
In 2016, the National Academies of Science, Engineering, and
Medicine (NASEM) released a report titled, ``A National Trauma Care
System: Integrating Military and Civilian Trauma Systems to Achieve
Zero Preventable Deaths After Injury.'' This report finds that one of
four military trauma deaths and one of five civilian trauma deaths
could be prevented if advances in trauma care reach all injured
patients. In the report, the National Academies recommended that the
United States adopt an overall aim for trauma care of ``zero
preventable deaths after injury,'' and sets forth elements of system
redesign that would provide military personnel with real-world training
and experience at civilian trauma centers. This training has the dual
benefit of maintaining military surgical battle readiness between wars
while at the same time improving civilian access to trauma care. The
report concludes that military and civilian integration is critical to
saving these lives both on the battlefield and at home, preserving the
hard-won lessons of war, and maintaining the nation's readiness and
homeland security.
Section 204, of S. 1379, the Pandemic and All-Hazards Preparedness
and Advancing Innovation Act of 2019 (PAHPAI), known as the MISSION
ZERO Act was signed into law June 24, 2019 (Public Law No: 116-22).
MISSION ZERO takes the recommendations of the NASEM report to create a
U.S. Department of Health and Human Services (HHS) grant program to
cover the administrative costs of embedding military trauma
professionals in civilian trauma centers. These partnerships will allow
military trauma care teams and providers to gain experience treating
critically injured patients and increase readiness for when these units
are deployed. Similarly, best practices from the battlefield are
brought home to further advance trauma care and provide greater
civilian access.
When it comes to trauma care, a symbiotic military/civilian
partnership of training, education, and memorializing this knowledge
and skill has long existed. By facilitating the implementation of
military-civilian trauma partnerships and growing and strengthening
this collaboration, this program will preserve lessons learned from the
battlefield, translate those lessons to civilian care, and ensure
service members maintain their readiness to deploy in the future.
We ask you to fully fund these lifesaving grants and include $11.5
million for the Military and Civilian Partnership for the Trauma
Readiness Grant Program. This funding will allow military and civilian
trauma professionals and hospitals to harness the benefits of this
unprecedented and innovative program.
Our organizations stand ready to work with you to support this
critical effort. Thank you for your consideration.
American Academy of Orthopaedic Surgeons
American Association of Neurological Surgeons
American Burn Association
American College of Emergency Physicians
American College of Surgeons
American Society of Plastic Surgeons
American Trauma Society
Congress of Neurological Surgeons
Eastern Association for the Surgery of Trauma
Emergency Nurses Association
National Trauma Institute
The American Association for the Surgery of Trauma
Trauma Center Association of America
Society of Trauma Nurses
______
Prepared Statement of the Treatment Advocacy Center
The Treatment Advocacy Center appreciates the opportunity to
provide written testimony on the National Institute of Health fiscal
year 2021 budget appropriations.
The Treatment Advocacy Center is a national nonprofit dedicated
exclusively to eliminating barriers to the timely and effective
treatment of serious mental illnesses such as schizophrenia and bipolar
disorder. Our organization promotes laws, policies and practices for
the delivery of psychiatric care and supports the development of
treatments for and research into factors of serious mental illness that
have the potential for reducing suffering and improving lives of
individuals living with these conditions.
The National Institute of Mental Health (NIMH) is the main Federal
Government agency for research into mental illness. The NIMH was
authorized through the passage of the National Mental Health Act in
1946 to better help individuals with mental health disorders through
better diagnosis and treatments. With a budget of almost $2 billion in
2020, the NIMH conducts research and funds outside investigators to
better understand mental illness and develop new treatments to reduce
the burden these disorders have on individuals.
Unfortunately, the NIMH has a recent history of ignoring those with
the most severe mental illnesses. As Treatment Advocacy Center Founder
Dr. E. Fuller Torrey wrote in Psychiatric Times earlier this month:
Congress awarded the National Institute of Mental Health an
additional $98 million as part of the National Institutes of Health
budget resolution in December 2019, which brings the NIMH budget to
just under $2 billion and represents a 35 percent increase since 2015,
one of the largest increases in the history of the NIMH. Yet, during
the 5 years from 2015 through 2019, NIMH funded a total of 2 new drug
treatment trials for schizophrenia and bipolar disorder, according to
clinicaltrials.gov. This contrasts with the 5-year period from 2006
through 2010 when NIMH funded 48 such trials. NIMH has thus almost
entirely given up its role of evaluating drugs for the treatment of 2
disorders (emphasis added).
In December 2019, the NIMH released a draft of their five-year
strategic plan for public comment. They reported receiving more than
6,000 responses over the winter holidays, including from our
organization identifying concrete examples of research initiatives the
NIMH could be pursuing today to help people with serious mental illness
recover and live better lives. Despite this robust response, NIMH made
no substantive changes to the research goals or objectives in the final
version released to the public earlier this week.
The NIMH research goals for 2020-2025 heighten the existing
imbalance in NIMH research. In doing so, they offer little hope for new
or better treatments for individuals who are currently afflicted with a
mental illness during their lifetime, especially a serious mental
illness. This failure is inexcusable given the large increase in
research funding given to NIMH in recent years.
Future NIMH funding must be used to correct the existing imbalance,
not worsen it, especially now that the COVID-19 pandemic has upended
the mental health treatment system and will likely result in an
exacerbation of symptoms in people currently affected and an increase
in serious mental illnesses among Americans. Those with the most severe
forms of mental illness deserve to be prioritized.
Thank you for your consideration of this request.
Sincerely,
E. Fuller Torrey, MD, Founder of the Treatment Advocacy Center and
Associate Director for Research, Stanley Medical Research Institute
Michael B. Knable, DO, Board President, Treatment Advocacy Center
and
Medical Director, Clearview Communities
John Snook, Executive Director, Treatment Advocacy Center, snookj@
treatmentadvocacycenter.org
______
Prepared Statement of Trust for America's Health
Trust for America's Health (TFAH) is pleased to submit this
testimony on the fiscal year 2021 appropriations bill. TFAH is a non-
profit, non-partisan organization that promotes optimal health for
every person and community. Right now, communities across the country
are overwhelmed with responding to the Coronavirus Disease 2019 (COVID-
19) pandemic, while also responding to long-standing issues like
chronic diseases, substance misuse and suicide epidemics, health
disparities, and environmental threats after years of underfunding of
the public health system. While the United States spends an estimated
$3.6 trillion annually on health, less than 3 percent of that spending
is directed toward public health and prevention.\1\ By investing in the
Centers for Disease Control and Prevention (CDC) and other public
health programs, we can make critical investments for our public health
system, which is facing unprecedented challenges. It is important to
note that TFAH's recommendations are for modest increases to public
health programs, given congressional budget caps. However, the COVID-19
pandemic is demonstrating the dire price we are paying for neglecting
the public health infrastructure and prevention of disease.
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\1\ The Impact of Chronic Underfunding on America's Public Health
System: Trends, Risks, and Recommendations, 2020. Washington, DC: Trust
for America's Health. February, 2020. https://www.tfah.org/report-
details/publichealthfunding2020/.
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TFAH believes bold action toward a significant funding increase is
needed for CDC, state, territorial, tribal, and local public health
programs. Health departments are responding to COVID-19 using archaic
surveillance methods, such as paper and fax,\2,3\ and with depleted
workforce \4\ that are the result of years of insufficient funding.
TFAH's most recent report, The Impact of Chronic Underfunding on
America's Public Health System, finds that health threats are
increasing, while public health budgets remain stagnant.\5\ Given the
devastation of COVID-19 on communities' health, as well as state and
local budgets, we urge Congress to work toward long-term, sustainable
investments in health departments' infrastructure and workforce. Public
health experts have estimated a $4.5 billion annual shortfall for
state, territorial, tribal, and local public health infrastructure.\6\
Such an investment would help ensure every community is served by a
comprehensive public health system.
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\2\ King, M. Black doctors blast 'woefully anemic' data on minority
coronavirus cases. Politico. April 20, 2020. https://www.politico.com/
news/2020/04/20/minority-cases-coronavirus-197203.
\3\ Written Testimony of Sharon M. Watkins, PhD before House
Committee on Science, Space and Technology: Hearing on Fighting Flu,
Saving Lives: Vaccine Science and Innovation. November 20, 2019.
https://science.house.gov/imo/media/doc/Watkins%20Testimony.pdf.
\4\ New Workforce Survey: Public Health Turnover Could Pose Threat
to Community Health. De Beaumont Foundation. January 14, 2019. https://
www.debeaumont.org/news/2019/new-workforce-survey-public-health-
turnover-could-pose-threat-to-community-health/.
\5\ The Impact of Chronic Underfunding of America's Public Health
System, Trust for America's Health 2020.
\6\ Developing a Financing System to Support Public Health
Infrastructure. Public Health Leadership Forum, 2019. https://
www.resolve.ngo/docs/phlf_developingafinancingsystemtosupport
publichealth636869439688663025.pdf.
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In addition, we support the proposal advanced in a letter led by
former Senators Tom Daschle, Bill Frist and former CDC Director Tom
Frieden to congressional leadership calling for creation of a Health
Defense Operations (HDO) budget designation that would exempt certain
health security budget lines from the Budget Control Act spending
caps.\7\ Such a designation is needed to get out of the cycle of
disinvestment in public health, followed by emergency supplemental
funding, followed again by erosion of funds. Health security is
national security, so funding for protection of Americans against
biosecurity threats is critical to our recovery and resilience.
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\7\ Letter to congressional leadership on Health Defense Operations
budget designation. May 5, 2020. In preventepidemics.org. https://
preventepidemics.org/wp-content/uploads/2020/05/Health-Defense-
Operations-Letter-to-Congress_05.05.20.pdf.
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For fiscal year 2021, TFAH also urges the Committee to support
programs within CDC and the Public Health and Social Services Emergency
Fund (PHSSEF):
Emergency Preparedness: The COVID-19 outbreak has demonstrated that
it is not enough to deliver short-term, supplemental funding after a
disaster occurs; a proper response requires training, plans and systems
that can only be established with consistent, ongoing funds. The Public
Health Emergency Preparedness (PHEP) cooperative agreement, the main
Federal program that ensures health departments protect Americans from
the effects of health emergencies, is a cornerstone of the nation's
health security. PHEP grants support 62 state, territory, and local
grantees to develop core public health capabilities, including in areas
of public health laboratory testing, health surveillance and
epidemiology, community resilience, countermeasures and mitigation,
incident management, and information management. Unfortunately, funding
for PHEP has been cut by a third since fiscal year 2003. TFAH
recommends at least $824 million for the PHEP (CDC), the level
authorized in 2006.
The pandemic is also demonstrating the impact of failing to invest
in comprehensive readiness and surge capacity of the healthcare
delivery system. Funding for the Hospital Preparedness Program (HPP),
administered by the Assistant Secretary for Preparedness and Response,
has been cut in half since fiscal year 2003. HPP provides critical
funding and technical assistance to healthcare coalitions (HCCs) across
the country to meet the disaster healthcare needs of communities. There
are 360 HCCs, comprised of public health agencies, hospitals, emergency
management and others, that develop and implement healthcare and
medical readiness; healthcare and medical response coordination;
continuity of healthcare services delivery; and medical surge. TFAH
recommends at least $474 million for HPP (PHSSEF), the level authorized
in 2006.
Environmental Health: To effectively and efficiently address public
health challenges, data must incorporate environmental impacts on
health. Since CDC's National Environmental Public Health Tracking
Network began, grantees have taken over 400 data-driven actions to
improve health. Data includes asthma, drinking water quality, lead
poisoning, flood vulnerability, and community design. State and local
health departments use this data to conduct targeted interventions in
communities with environmental health concerns. Currently, 25 states
and one city are funded to participate in the Tracking Network. With a
$1.44 return in healthcare savings for every dollar invested, the
Tracking Network is a cost-effective program that examines and combats
harmful environmental factors.\8\ TFAH recommends at least $40 million
for National Environmental Public Health Tracking Network (CDC), which
would enable at least three additional states to join the network.
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\8\ Return on Investment of Nationwide Health Tracking, Washington,
DC: Public Health Foundation, 2001.
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Obesity and Chronic Disease Prevention: In 2017-2018, 42.4 percent
of adults were obese.\9\ Yet, funding for CDC's obesity prevention
efforts only equal to about 31 cents per person, even though obesity
accounts for nearly 21 percent of U.S. healthcare spending.\10\ During
the COVID-19 pandemic, obesity has been identified as one of the major
risk factors for severe outcomes.\11\ To adequately address obesity and
chronic disease, we must invest in preventive and culturally
appropriate strategies. CDC's Division of Nutrition, Physical Activity
and Obesity (DNPAO) works to decrease obesity and chronic disease in
communities across the U.S. DNPAO supports healthy eating, active
living, and obesity prevention by creating healthy child care centers,
hospitals, schools, and worksites; building capacity of state health
departments and national organizations; and, conducting research,
surveillance and evaluation studies. DNPAO's new initiative, Active
People, Healthy Nation, aims to help 27 million Americans become more
physically active by 2027. DNPAO only has enough money to implement its
State Physical Activity and Nutrition Programs (SPAN) in 16 states.
TFAH recommends at least $125 million for DNPAO (CDC) to fund every
state for its SPAN work and continue implementing Active People,
Healthy Nation strategies.
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\9\ Hales CM et al. Prevalence of Obesity and Severe Obesity Among
Adults: United States, 2017-2018. NCHS Data Brief No. 360, Feb 2020.
https://www.cdc.gov/nchs/data/databriefs/db360-h.pdf.
\10\ J. Cawley and C. Meyerhoefer, ``The Medical Care Costs of
Obesity: An Instrumental Variables Approach,'' Journal of Health
Economics 31, no. 1 (2012): 219-30, doi: 10.1016/
j.jhealeco.2011.10.003.
\11\ Coronavirus Disease 2019 (COVID-19): Groups at Higher Risk for
Severe Illness.
CDC, 2020. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-
precautions/groups-at-higher-risk.html.
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Additionally, the Racial and Ethnic Approaches to Community Health
(REACH) program, within DNPAO, works in 31 communities across the
country. It supports innovative, community-based approaches to develop
and implement evidence-based practices, empower communities, and reduce
racial and ethnic health disparities. As we are seeing the affect that
underlying health disparities are having on COVID-19 patients, we urge
renewed investment in programs such as REACH that promote health
equity. TFAH recommends at least $76.95 million for REACH (CDC) to
restore funds historically diverted from core REACH programs.
Healthy Outcomes in Schools: CDC's Division of Adolescent and
School Health (DASH) provides evidence-based health promotion and
disease prevention education for less than $10 per student. Through
school-based surveillance, data collection, and skills development,
DASH collaborates with state and local education agencies to increase
health surveillance and services, promote protective factors, and
reduce risky behaviors. DASH programs reach approximately 2 million of
the 26 million middle and high school students. TFAH recommends at
least $100 million for DASH (CDC) to expand its work to 20 percent of
all middle and high school students.
Substance Use Epidemic: Substance misuse is a public health
epidemic experienced by too many communities across the country. From
2009-2018, 530,893 Americans have died from drug- related causes.\12\
Increased funding and flexibility for the Opioid Overdose Prevention
and Surveillance program at CDC would expand prescription drug
monitoring programs and surveillance; strengthen evidence-based
prevention efforts; and strengthen CDC's surveillance systems to
translate data into action by educating consumers and equipping health
departments with resources to promote prevention. We urge you to
prioritize primary prevention of substance misuse and to allow
flexibility to broadly prevent substance misuse, not solely opioid
misuse. TFAH recommends at least $650 million for Opioid Overdose
Prevention and Surveillance (CDC) to expand and support innovative
prevention activities in states.
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\12\ WONDER Data, CDC. https://wonder.cdc.gov/.
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New Initiative: Age-Friendly Public Health: Every day 10,000
Americans turn 65 years of age, yet there have been limited
collaborations between the public health and aging sectors. The COVID-
19 outbreak shows how vital this collaboration could be. Public health
interventions play a valuable role in optimizing the health and well-
being of older adults by prolonging their independence, reducing their
use of expensive healthcare services, coordinating existing multi-
sector efforts and identifying gap areas, as well as disseminating and
implementing evidence-based policies. We recommend the Committee fund a
program to administer and evaluate a healthy aging grant program to
support state and local health departments to promote and address the
public health needs of older adults, and collaborate with partners in
the aging sector. TFAH recommends at least $50 million to develop Age-
Friendly Public Health at CDC and support grants to states and
localities.
New Initiative: Social Determinants of Health: Social and economic
conditions such as housing, employment, food security, and education
have a major influence on individual and community health.\13\ These
Social Determinants of Health (SDOH) are receiving increased attention.
Public health departments are uniquely situated to build these
collaborations across sectors, identify SDOH priorities in communities,
and help identify strategies that promote health. Currently most public
health departments lack funding and tools to support such cross-sector
efforts and are limited by disease-specific Federal funding. We
recommend the Committee fund CDC to support local and state public
health agencies to convene across sectors, gather data, identify
priorities, establish plans, and take steps to address unmet non-
medical social needs. Recently, Rep. Nanette Diaz Barragan introduced a
bill, the Improving Social Determinants of Health Act (H.R. 6561) that
would authorize such a program, with endorsements from nearly 160
organizations.\14\ TFAH recommends at least $50 million to develop a
Social Determinants of Health Program (CDC) and enable grants to states
and localities.
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\13\ Taylor, L et.al, ``Leveraging the Social Determinants of
Health: What Works?'' Yale Global Health Leadership Institute and the
Blue Cross and Blue Shield Foundation of Massachusetts, June 2015.
\14\ The Improving Social Determinants of Health Act of 2020 (H.R.
6561) Background. In Trust for America's Health. https://www.tfah.org/
wp-content/uploads/2020/05/SDOH-bill-fact-sheet.pdf.
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Conclusion: TFAH appreciates the opportunity to present this
testimony to the Committee. By restoring previous budget cuts and
expanding prevention activities, we will reinforce our ability to
protect and improve the lives of communities nationwide. Thank you.
[This statement was submitted by John Auerbach, President & CEO,
Trust for America's Health.]
______
Prepared Statement of the U.S. Hereditary Angioedema Association
summary of fiscal year 2021 recommendations
_______________________________________________________________________
--Provide the National Institutes of Health (NIH) with at least a $3
billion increase in discretionary funding for fiscal year 2021
to bring overall agency funding up to a minimum of $44.7
billion annually.
--Continue to encourage advancement and expansion of the hereditary
angioedema research portfolio at NIH (including advancing
treatment options and diagnostic tools for HAE with normal
C1-Inhibitor), as well as research efforts focused on rare
conditions more broadly, through timely committee
recommendations.
--Please provide proportional funding increases for NIH's various
Institutes and Centers, most notably; the National
Institute of Allergy and Infectious Diseases (NIAID), the
National Centers for Advancing Translational Sciences
(NCATS), and the National Heart, Lung, and Blood Institute
(NHLBI)
--Provide the Centers for Disease Control and Prevention (CDC) with
at least a $600 million increase in discretionary funding for
fiscal year 2021 to bring overall agency funding up to a
minimum of $8.3 billion annually.
--Encourage the Centers for Medicare and Medicaid Services (CMS) to
prevent discrimination in health coverage by ensuring rare
disease patients do not face arbitrary restrictions when
seeking charitable assistance to maintain access to life-
sustaining care and therapy and to prevent from being steered
into Federal need-based and illness-based programs that they
would not otherwise qualify for while properly managing their
illness (building on committee recommendations included in the
Committee Report accompanying the fiscal year 2020 House LHHS
Appropriations Bill).
_______________________________________________________________________
Chairman Blunt, Ranking Member Murray, and distinguished members of
the subcommittee, thank you for the opportunity to present the views of
the U.S. Hereditary Angioedema Association (U.S. HAEA) on funding and
related policy items for NIH, CDC, and CMS during consideration of
appropriations for fiscal year 2021. First and foremost, thank you for
supporting these programs in fiscal year 2020. It is our hope that this
invest will continue for fiscal year 2021 to ensure that meaningful
progress can continue in specific, promising areas.
about u.s. haea
U.S. HAEA is a patient-driven organization comprised of affected
individuals and their families. In this regard, we would primarily like
to recognize this Subcommittee for its leadership and commitment to
providing medical research and public health programs with notable
funding increases for fiscal year 2020. This investment will have a
tangible positive impact for patients by significantly improving
scientific inquiry and public health activities.
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.
about hereditary angioedema
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.
a research success story
There was a time not long ago that HAE was a debilitating, and
often life-ending, chronic disease. In addition to the serious health
impacts, affected individuals suffered with trauma, anxiety, and PTSD
stemming from torturous attacks (and the uncertainty of when the next
attack might occur). Due to advancements in medical research, HAE
patients now have access to life-altering and life-sustaining
medications. Properly medically managing the disease now allows many
the freedom to work productively, live independently, and thrive.
While we are appreciative of the scientific progress, much more can
be done. There is no cure of HAE and treatment is highly
individualized. More needs to be learned about the underlying disease
mechanisms and successful treatment often involves personalized care
and a customized treatment regimen prepared (using trial and error) by
a leading physician expert.
NIH has a modest, but meaningful HAE research portfolio. Recent
annual investments will facilitate growth in this portfolio and have
led to important new scientific projects. The ongoing research at NIH
(and complimentary research through the Department of Defense Peer-
Reviewed Medical Research Program) will lead to a time when HAE
patients can move beyond their disease. However, a key question that
remains is how much of this investment is going to rare and ultra-rare
disease research programs, particularly in-light of the ``big ticket''
items that are often now the focus of annual research appropriations.
the importance of proper health coverage and access
The HAE community first became aware of the fact that the Centers
for Medicare and Medicaid Services (CMS) had allowed private insurers
offering marketplace plans to deny coverage to individuals receiving
charitable assistance in 2015 when more than a dozen HAE patients in
Louisiana received notices that their coverage was being cancelled due
to the fact someone else had helped them pay their premiums. Since that
time, the practice has become pervasive and HAE patients are regularly
informed that they will lose coverage if they receive any charitable
assistance, that they may be committing fraud, and that they may face
legal action if they accept assistance. This dynamic has effectively
become a back door to pre-existing condition discrimination that is
implemented to steer HAE patients into tax-payer funded healthcare.
Moreover, the threat now stretches beyond just marketplace plans (to
Medigap plans and COBRA) due to the inability to address this issue
when it first began jeopardizing health for patients with no
alternatives.
Many HAE patients properly manage their illness when they have
proper access to healthcare and treatment. HAE patients would typically
not qualify for need-based or health-based government programs due to
the life-sustaining nature of their treatment. If, however, proper
coverage is lost, an HAE patient may have to endure a life-threatening
experience of waiting while they spend down to qualify for Medicaid or
become sick enough to apply for disability.
US HAEA has joined with other patient-driven organizations
experiencing the harm of current pre-existing condition discrimination
facilitated by barriers to charitable assistance and the related
practice of a restrictive co-pay accumulator to form the ad hoc group,
United for Charitable Assistance (UCA). We join with UCA and all
stakeholders in asking this subcommittee to once again highlight these
rare-disease challenges for CMS and request the current barriers are
resolved to protect patients that have no other reasonable options to
maintain coverage.
We thank the Subcommittee for including meaningful language through
the fiscal year 2020 appropriations process asking CMS to show
leadership in addressing these barriers. We hope Congress will continue
to work with patient stakeholders to end coverage scrutiny and payment
discrimination moving forward.
[This statement was submitted by Anthony J. Castaldo, President and
CEO,
U.S. Hereditary Angioedema Association.]
______
Prepared Statement of the United States Workforce Associations
Dear Chairman Blunt and Ranking Member Murray:
The undersigned organizations make up the United States Workforce
Association (USWA), a collaborative effort of local workforce boards,
businesses, educational institutions, and organizations involved in
workforce and economic development activities across the country. These
organizations are directly involved in the implementation of the
bipartisan Workforce Innovation and Opportunity Act (WIOA) of 2014,
specifically promoting the successful execution by local workforce
boards of the law to serve businesses, employers, and job--and career-
seekers. With the country facing unprecedented demand for unemployment
insurance and possible economic recession within the COVID-19 outbreak,
the employer-led, local workforce development system must have the
Federal resources necessary to provide businesses with talent to begin
the recovery. Adequate Federal funding would ensure the system is
poised to address these community needs.
As the Senate Appropriations Committee considers the fiscal year
2021 Labor-HHS Appropriations Bill, we urge you to support further
Federal investment into WIOA and fully fund the law beyond its fiscal
year 2020 authorized levels. Appropriated levels have fallen short of
authorized levels specifically in Title I accounts at the Department of
Labor (Adult Employment and Training Services, Youth Workforce
Investment Activities, and Dislocated Worker Employment and Training
Services). An expanded Federal investment across WIOA programs leads to
more job training, education, skills development and innovative, proven
practices like industry-based sector partnerships, career pathways, and
apprenticeships. These strategies will need to be implemented
seamlessly following the COVID-19 outbreak.
As our country grapples with the response to COVID-19, local
leaders are engaged directly with businesses to help keep individuals
employed. We are also working with the mass waves of unemployed
individuals to help them stay connected to the workforce and evaluate
other opportunities if they have been laid off. Emergency
appropriations are greatly needed to address this unprecedented health,
economic, and social destabilization but an increased Federal
investment will also address these funding concerns.
The fiscal year 2021 Labor, Health and Human Services, Education,
and Related Agencies Appropriations bill must fully fund all Titles I,
II, III, and IV at a minimum to the level authorized by the Workforce
Innovation and Opportunity Act (WIOA).
The funding levels we are requesting in the fiscal year 2021 Labor,
HHS, Education Appropriations Bill are listed below:
Title I--Department of Labor
--At least $899.987 million for Adult Employment and Training
Services,
--At least $963.837 million for Youth Workforce Investment
Activities, and
--At least $1.436 billion for Dislocated Worker Employment and
Training Services
Title II--Department of Education
--$678.640 million for Adult Education
Title III--Department of Labor
--$667,000,000 for Wagner-Peyser (fiscal year 2020 Enacted)
Title IV--Department of Education
--$3,610,040,000 for Vocational Rehabilitation Services (fiscal year
2020 Enacted)
fiscal year 2021 administration budget proposal language
We also wanted to highlight concerning language contained in the
fiscal year 2021 Department of Labor Budget Proposal that would give
Governors more authority to re-designate and consolidate local
workforce boards. The budget proposal language would waive protections
given to local control by circumventing Section 106 of the Workforce
Innovation and Opportunity Act (WIOA). Congress recognized that local
economic conditions are best addressed at the local level when WIOA was
passed in 2014. That local control is critical when dealing with
employers and other stakeholders as we can address economic issues with
flexible resources and innovative solutions. We oppose the language
included in the budget and encourage you to further support local
control within the Federal workforce system.
This training, support and business partnership is vital to our
country's economic prosperity. For further information, please contact
Chris Andresen.
Sincerely.
______
Prepared Statement of VOR
Thank you for the opportunity to provide outside witness testimony
for the record to the Senate Appropriations, Subcommittee on Labor,
HHS, Education, and Related Agencies regarding the fiscal year 2021
Budget for the Department of Health and Human Services (DHHS). This
testimony does not include any funding request.
VOR submits this testimony as a request for language in the fiscal
year 2021 Labor, HHS, Education and Related Agencies appropriations
bill \1\ that:
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\1\ Submitted in March 26, 2020 email from Caroline Lahrmann to
Senator Blunt's staff, Dan Burgess and Caitlin Wilson.
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--Expressly prohibits the use of appropriations by a Protection and
Advocacy (P&A) System to bring a lawsuit against a Medicaid
licensed and certified intermediate care facility for
individuals with intellectual disabilities (ICF/IID), unless
the affected individuals and their legal guardians have been
provided reasonable notice of the lawsuit.
--Expressly prohibits states from using Money Follows the Person
(MFP) funds or the resulting Federal Matching Assistance
Percentages (FMAP) to override beneficiary choice and be used
by a state to finance and abet the closure of an ICF/IID home
and the resulting transfer of its residents, or to incentivize
private providers to close or reduce the number of beds in
their ICF/IID facilities.
introduction
VOR is a national nonprofit organization advocating for high
quality care in a full continuum of residential options and human
rights for all people with intellectual and developmental disabilities
(I/DD).
It has been twenty years since the Developmental Disabilities
Assistance and Bill of Rights Act (DD Act) was last reauthorized.
During that time, the Administration for Community Living (ACL) through
its agency, the Administration on Intellectual and Developmental
Disabilities (AIDD), and their state-based DD Act programs, especially
Protection & Advocacy (P&A) Systems for Individuals with Developmental
Disabilities, have engaged in activities designed to close intermediate
care facilities for individuals with intellectual disabilities (ICFs/
IID). This activity has occurred against the wishes of the vast
majority of legal guardians of the residents, disregarding the plain
language of the Americans with Disabilities Act (ADA) and the Supreme
Court's Olmstead decision. Too often the consequences have been
disastrous for the residents, resulting in abuse, neglect and even
death. Since the last DD Act reauthorization expired 13 years ago,
these programs have been able to continue to ignore the DD Act and the
Supreme Court only through the appropriations process. To remedy this
problem VOR makes the above referenced language requests for the Labor,
HHS Appropriations Bill and Report.
the olmstead decision, medicaid law, and the dd act protect choice
based on need
HHS-funded P&A Systems cite the landmark U.S. Supreme Court
decision, Olmstead v L.C. (1999) \2\ as justification for their
position to close HHS-funded ICF/IID homes. These Federal agencies
misrepresent and misapply the Olmstead decision's requirements. The
Supreme Court is clear in its holding that the ADA requires individual
choice before community placement can be imposed and recognizes the
need for specialized care:
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\2\ The full Supreme Court Ruling in Olmstead is available for
download at: https://
supreme.justia.com/cases/Federal/us/527/581/.
``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.''
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[Olmstead v. L.C. 527 U.S. 581, 601-602 (1999)]
``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.' '' [Olmstead, 605]
(quoting VOR's Amici Curiae brief) \3\
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\3\ https://www.vor.net/legislative-voice/legislator-toolkit/dd-
act-reauthorization/item/
vor-olmstead-amicus-brief.
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Likewise, Medicaid law and regulations require 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)]
The DD Act,\4\ which authorizes funding for P&A Systems, supports
residential choice and recognizes that individuals and their families
are in the best position to make care decisions:
---------------------------------------------------------------------------
\4\ The DD Act is available for download at: https://acl.gov/sites/
default/files/about-acl/2016-12/dd_act_2000.pdf.
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``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)]
protection & advocacy class action lawsuits
Protection & Advocacy (P&A) Systems are a DD Act program charged to
protect and advocate the rights of individuals with developmental
disabilities. [42 U.S.C. Sec. 10543] Lawsuits have been a favorite tool
of P&As. P&As have filed more than 15 class action lawsuits seeking
closure (not relating to conditions of care) over the objections of
residents and their families.
In 2014, for example, Disability Rights Ohio (DRO), the State's
P&A, cited Olmstead when it threatened \5\ and later filed a class
action against Ohio's ICF/IID program over the widespread objections of
ICF/IID families. Families filed over 21,000 hardcopy petition
signatures with the Ohio General Assembly objecting to DRO's threats
and policy proposals, including closing and downsizing ICF/IID
facilities. The threat of litigation alone led to the closing of two
state-run ICFs/IID and hundreds of private ICF/IID beds. Despite state
concessions, DRO still filed a class action on March 31, 2016 against
the state without notifying families of individuals who DRO sought to
include as class members. Eventually, ICF/IID families who learned of
the suit intervened in the action. The Court ordered ICF/IID families'
intervention and eventually dramatically narrowed the class to protect
the interests of ICF/IID residents and those individuals who may want
an ICF/IID placement in the future. In its Order on intervention, the
Court noted that the rights of ICF/IID residents in the litigation
``were not protected until the Guardians filed their Motion to
Intervene.'' (Ball v. Kasich 2:16-cv-282, Opinion and Order, July 25,
2017, Doc #261, pp 17-18.) The Court's statement highlights the
importance of VOR's language request, to provide notice to families of
P&A litigation so that they can act to protect the rights of their
severely disabled loved ones.
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\5\ July 1, 2014 DRO letter to state of Ohio: https://www.vor.net/
images/stories/pdf/DROLetterGovernorKasich.pdf.
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money follows the person
MFP was passed in 2005 as part of the Deficit Reduction Act, the
primary goal being to rebalance state service systems toward home and
community-based services (HCBS), rather than institutional care.\6\ For
the I/DD population, this goal has been accomplished. Today, Home &
Community Based Services (HCBS) represent approximately 54 percent of
the total Federal Medicaid I/DD budget; ICFs/IID represent only 17
percent.\7\ As the goal of the program has been realized, MFP has now
become hijacked by ideological extremists as a means to close all
institutional care for individuals with I/DD. In December 2019, the CEO
of the ARC stated, ``We applaud elected officials who understand the
value of MFP, core to our mission to advance community living and close
all institutions.'' \8\ (Emphasis added.) P&As play a key role in this
effort, creating the environment for litigation-wary states to close
ICFs/IID. Then, MFP furthers states' ability to implement the resulting
closings. As such, a program that expressly honored choice \9\
consistent with Olmstead, has lost its way and is being misused to
override the choice of I/DD beneficiaries to their life-sustaining ICF/
IID homes. VOR families have experienced states' misuse of MFP in two
ways: (1) Using MFP and its enhanced FMAP to help finance whole
closures of state-run ICFs/IID and the resulting transfers of
residents; (2) Using MFP's enhanced FMAP to incentivize private
providers to close their ICFs/IID and transfer residents with MFP
funds. Here are a few examples:
---------------------------------------------------------------------------
\6\ Public Law 109-171 Sec. 6071(a)(1).
\7\ https://stateofthestates.org/wp-content/uploads/documents/
UnitedStates.pdf.
\8\ https://thearc.org/huge-victory-for-community-living-for-
people-with-disabilities-agreement-in-congress-to-commit-to-money-
follows-the-person-program/.
\9\ Public Law 109-171 Sec. 6071 (a)(2).
---------------------------------------------------------------------------
Ohio: MFP was used to help finance closings of two state-run ICFs/
IID in 2015 affecting about 200 persons; families passionately opposed
the closures in the state legislature. MFP's enhanced FMAP was used to
financially incentivize private providers to close ICFs/IID and
transfer residents.
Pennsylvania: In 2017, MFP was used to help finance the closing of
Hamburg, a state-run ICF/IID, affecting 74 residents. Closures of two
more state centers were announced in 2019. Families of the centers have
filed a Federal lawsuit to halt these closures.
Virginia: Deaths increased by 70% \10\ when the state closed
several of its Training Centers (state run ICFs/IID) in response to DOJ
litigation. Four of five centers closed, affecting approximately 1,000
residents. Families opposed the closures by intervening in the
litigation to protect their loved ones' interests. MFP was used to help
transfer displaced residents to community settings.
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\10\ Robert Anthony, PhD. Study of Mortality Rates Connected to
Virginia Training Centers
Closures: https://www.vor.net/get-help/more-resources/item/mortality-
studies.
---------------------------------------------------------------------------
Illinois: Moved to close two state run ICFs/IID, Jacksonville and
Murray, in 2012. The Chicago Tribune reported \11\ that an ``auction''
was held to find new homes for residents of Jacksonville. ``A state
official read aloud medical histories of residents...prompting group
home officials to raise their hands for desired picks.'' Beneficiary
choice was not considered when making the decision to close the
centers. In fact, families of Murray filed a Federal lawsuit to halt
the closing of Murray and were successful in keeping Murray open. The
Tribune reported that state officials promised an independent and safe
life for residents in community settings, ``but those promises obscured
evidence found in the state's own investigative files that revealed
many group homes were underfunded, understaffed and dangerously
unprepared for the new arrivals with complex needs.''
---------------------------------------------------------------------------
\11\ https://www.chicagotribune.com/investigations/ct-group-home-
investigations-cila-met-2016
1229-htmlstory.html.
---------------------------------------------------------------------------
deinstitutionalization efforts persist despite widespread abuse,
neglect, & deaths
ACL/AIDD and their state-based programs persist in their
ideological devotion to community placement despite reports:
--of an extraordinary death rate of nearly 16 percent in Georgia \12\
---------------------------------------------------------------------------
\12\ Augusta Chronicle, August 26, 2019 https://
www.augustachronicle.com/news/20190826/
report-deaths-lack-of-housing-plague-georgia-system-for-disabled-
mentally-ill.
---------------------------------------------------------------------------
--deaths increased by 70 percent for individuals moved from ICFs/IID
to the community in Virginia \13\
---------------------------------------------------------------------------
\13\ Robert Anthony, PhD. Op Cit.
---------------------------------------------------------------------------
--1,200 ``unnatural and unknown'' deaths in New York \14\
---------------------------------------------------------------------------
\14\ New York Times series, Abused and Used, 2011-2012 http://
archive.nytimes.com/www.nytimes.com/interactive/nyregion/abused-and-
used-series-page.html.
---------------------------------------------------------------------------
--a risk of mortality in community settings of up to 88 percent in
California \15\
---------------------------------------------------------------------------
\15\ Mortality of Persons With Developmental Disabilities After
Transfer Into Community Care: A 1996 Update, Robert Shavell and David
Strauss https://www.ncbi.nlm.nih.gov/pubmed/10207577.
---------------------------------------------------------------------------
--more than 100 deaths in Connecticut \16\
---------------------------------------------------------------------------
\16\ Abuse, Neglect Cited As Factors In Deaths Of Dozens of
Developmentally Disabled
In State Care https://www.courant.com/news/connecticut/group-home-
deaths/hc-dds-deaths-0303-
20130302-story.html.
---------------------------------------------------------------------------
--hundreds of deaths in the District of Columbia \17\
---------------------------------------------------------------------------
\17\ ``Invisible Lives: Residents Languish; Profiteers Flourish,''
March 15, 1999, https://www.washingtonpost.com/wp-srv/local/daily/
march99/grouphome15_full.htm; and ``Invisible Deaths,'' December 5,
1999, https://www.washingtonpost.com/wp-srv/local/invisible/
deaths5.htm.
---------------------------------------------------------------------------
--a Chicago Tribune series on widespread abuse and neglect in
Illinois' community system \18\
---------------------------------------------------------------------------
\18\ Chicago Tribune, ``Suffering in Secret,'' three-part series
beginning November 2016 https://www.chicagotribune.com/investigations/
ct-group-home-investigations-cila-met-20161117-htmlstory.html.
---------------------------------------------------------------------------
plus many more reports of abuse, neglect and death across the
majority of all states.\19\ Sadly, such results, when beneficiary
choice and need are overridden, are not surprising.
---------------------------------------------------------------------------
\19\ VOR Abuse and Neglect Document https://www.vor.net/get-help/
more-resources.
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conclusion and solution
Reauthorization of the DD Act is the appropriate place for a
comprehensive review of HHS activities to determine if the programs
they fund, such as P&A Systems, are operating within the letter and
spirit of relevant law. As the DD Act programs continue to be funded
through the appropriations process, VOR believes it is necessary and
proper to require the programs to take actions to protect
beneficiaries' rights.
VOR's requests build on previous actions by this Committee. In
fiscal year 2016, 2018, and 2019, the Omnibus Appropriations Act
required that P&As provide affected individuals and their families with
notice of any class action that a P&A would initiate on their behalf.
We request that the Committee continue this requirement. The fiscal
year 2016 appropriations also included language that ``strongly urged
[HHS] to continue to factor the needs and desire of patients, their
families, caregivers, and other stakeholders, as well as the need to
provide proper settings for care, into its enforcement of the
Developmental Disabilities Act.'' Nearly identical language was also
included in the fiscal year 2017 Commerce, Justice Appropriations. VOR
is unaware that HHS followed the laws and requests the Committee to
require HHS to submit reports to Congress with respect to each of these
areas so the Congress can start the process of determining whether and/
or how HHS is meeting its obligations to respect the right of choice
and make sure proper care is provided for those who leave ICFs/IID.
[This statement was submitted by Hugo Dwyer, Executive Director,
VOR.]
______
Prepared Statement of the Western Governors' Association
Chairman Blunt, Ranking Member Murray, and Members of the
Subcommittee, the Western Governors' Association (WGA) appreciates the
opportunity to provide written testimony on the appropriations and
activities of the Federal agencies under the Subcommittee's
jurisdiction, including the Departments of Labor (DOL), Health and
Human Services (HHS), and Education (ED). WGA is an independent
organization representing the Governors of the 22 westernmost states
and territories. The Association is an instrument of the Governors for
bipartisan policy development, information-sharing and collective
action on issues of critical importance to the western United States.
Western states are aligning education to workforce needs in an
effort to create economic opportunities for westerners and support
growing economies. DOL and ED programs have a significant effect on how
states address challenges related to skills gaps, unemployment and
educational attainment. Western Governors understand the importance of
working closely with the Federal Government to ensure that Federal and
state investments in education and employment training support shared
goals.
Career and technical education (CTE) provides students with
opportunities to explore careers and participate in programs of study
designed around specific professions. CTE programs are funded through
the Carl D. Perkins Career and Technical Education Act (Perkins Act).
States distribute Perkins Act funds to school districts, community or
technical colleges, and other local recipients. Western Governors
encourage Congress to recognize that Governors and states are in the
best position to determine how to use Federal CTE funding to meet the
needs of their economies. Adequate funding of Perkins State Grants is
essential to ensure that CTE programs align with statewide visions for
education and workforce development.
Western Governors understand the importance of work-based learning
programs to help jobseekers obtain experience and training for in-
demand occupations while earning money. Western Governors support the
expansion of work-based learning programs, including federally
registered apprenticeship programs. These are important tools to
address skills gaps in specific sectors in western states. While
apprenticeships have been traditionally used in the building trades,
western states are leading the way in expanding registered
apprenticeship opportunities to new sectors, including healthcare and
information technology. Western Governors encourage Congress to support
and incentivize state-, local-, and industry-led partnerships to create
and scale apprenticeship programs through increased appropriations. New
Federal investments in apprenticeships should align with existing
efforts to foster a coherent system with minimal duplication at the
Federal, state and local levels.
DOL funding for workforce development through the Workforce
Innovation and Opportunity Act (WIOA) supports economic growth and job
creation in the states. Western Governors request that the 15 percent
reserve for statewide activities be maintained in appropriations under
WIOA. This funding allows Governors to be flexible and innovative in
addressing state needs.
Expanding education and training programs for cybersecurity is
especially important to Western Governors. A skilled cyber workforce is
imperative to protect critical infrastructure, which includes a vast
array of potential targets. These include: the nation's electric grid;
energy resource supply and delivery chains; finance, communications,
and election systems; and a panoply of public, private, military and
industrial systems.
Despite efforts by Western Governors to address the shortage of
qualified healthcare workers in our states, significant challenges
remain. Governors urge the Federal Government to examine and implement
programs to ensure states have an adequate healthcare workforce--
including positions in primary care, behavioral and oral health as well
as other in-demand specialties--prepared to serve diverse populations
in urban, suburban and rural communities. Understanding that
significant disparities remain in access and treatment for many
populations, Governors support efforts to increase the diversity of the
healthcare workforce to improve health outcomes for all.
Western Governors also support efforts to improve the quality and
quantity of behavioral health services, as these are essential to
reducing suicide rates and treating a range of behavioral health
conditions, including substance use disorder. The ten states with the
highest suicide rates in the nation are all in the West. Western states
are also among those with the highest overall rates of substance use
disorder, especially for youth between the ages of 12-17. Western
Governors recognize and support efforts at the Federal, state and local
levels to promote the integration of physical and behavioral health
services. The Governors encourage Congress and the Administration to
support states' integration efforts and encourage healthcare providers
to better incorporate behavioral and physical medicine into their
practice of care.
Western Governors recognize that it is an enormous challenge to
judiciously balance competing funding needs throughout the Federal
Government, and appreciate the difficulty of the decisions this
Subcommittee must make. The foregoing recommendations are offered in a
spirit of cooperation and respect. WGA is prepared to assist you as the
Subcommittee discharges its critical and challenging responsibilities.
[This statement was submitted by James D. Ogsbury, Executive
Director, Western Governors' Association.]
______
Prepared Statement of the Women First Research Coalition
The members of the Women First Research Coalition (WFRC) thank the
Subcommittee on Labor, Health and Human Services, and Education, and
Related Agencies for the opportunity to submit the following outside
witness testimony for the fiscal year 2021 appropriations in support of
increasing the amount of women's health research conducted by the
National Institutes of Health (NIH). To support and facilitate research
in women's health at the NIH, we ask that you consider our report
language on ``Women's Health Research Priorities.'' Additionally, we
ask that you consider adding emergency provisions to fund research at
NIH related to COVID-19, including projects that examine the virus as
it relates to conditions only or predominantly occurring in women.
WFRC is a coalition comprised of the nation's leading professional
medical and research organizations specializing in women's health. Our
coalition was formed to address pressing challenges in women's health
research and we are dedicated to raising awareness among Federal
policymakers, Executive Branch officials and the public about the need
for sustained and strengthened investment in women's health research,
the prioritization of research in conditions that are specific to women
or those conditions that may present differently in women than men,
advance an equitable and appropriate investment in women's health
research that improves the health outcomes of women, and ensure an
adequate women's research workforce.
Prioritize Women's Health Research at the NIH
The NIH has made significant advances in understanding how sex and
gender differences influence certain diseases and conditions as women
now account for roughly half of all participants in NIH-sponsored
clinical trials.\1\ However, there remain significant gaps in our
understanding of women's unique health conditions despite women
accounting for over half of the United States population.
Unfortunately, the implications of these gaps are clear: our country is
currently in the midst of a maternal mortality crisis; cervical cancer
survival rates have stagnated since the mid-1970s; vaginal mesh
procedures that were not studied in clinical trials require regulatory
action from the FDA; \2\ and there are significant gaps in our
understanding of women's fertility and hormonal functions.\3,4\
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\1\ https://orwh.od.nih.gov/sex-gender/nih-policy-sex-biological-
variable.
\2\ https://www.fda.gov/medical-devices/implants-and-prosthetics/
urogynecologic-surgical-mesh-implants.
\3\ MacDorman MF, Declercq E, Cabral H, Morton C. Recent Increases
in the U.S. Maternal Mortality Rate: Disentangling Trends From
Measurement Issues. Obstet Gynecol. 2016;128(3):447-55.
\4\ Jemal A, Ward EM, Johnson CJ, et al. Annual report to the
nation on the status of cancer, 284 1975-2014, featuring survival. J
Natl Cancer Inst. 2017;109.
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There are a number of examples of areas in women's health research
where additional study is urgently needed. Those provided here are
illustrative of the gaps in our understanding of common women's health
conditions. The benefits of cervical cancer prevention are well known,
and yet new discovery in this area as well as widespread implementation
of known approaches to prevention, such as the HPV vaccine, is not
optimal. Research to help understand barriers to screening programs,
discover new approaches to screening, and wider implementation of known
strategies is needed. There also remain large disparities in genetic
testing, access to care, and other aspects of providing care for women
with cervical, endometrial, and other gynecologic cancers. Enhancing
our understanding of these at a much deeper level would help facilitate
strategies for overcoming disparities.
Another example--one in three women who have given birth suffer
from pelvic organ prolapse, a condition that occurs when the pelvic
floor muscles and connective tissue supporting the pelvic organs
(bladder, uterus and cervix, vagina, and rectum) weaken or tear and can
no longer support these organs. Over 50 percent of women aged 65 and
older suffer from urinary incontinence. More research is needed to
improve prevention and treatment strategies for these and other
urogynecologic conditions that affect millions of American women.
These significant health concerns are increasing at a time when NIH
funding for women's health research remains disproportionately low,
particularly for research in obstetrics and gynecology, in comparison
to other areas of research. It is critical that Federal policymakers
prioritize funding to support research related to the full range of
women's health issues. An increased investment in women's health
research will improve the health outcomes of women and ensure a
sufficient workforce of physician-scientists to improve their health
through research and clinical care.
NIH Offices, Institutes, and Centers, including but not limited to
the Office of Research on Women's Health (ORWH), the Eunice Kennedy
Shriver National Institute of Child Health and Human Development, the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) and the National Cancer Institute (NCI), are responsible for
important research in women's health that has transformed medicine and
improved the health outcomes of women today. To continue its promising
multicenter research, the NIH should develop a plan to prioritize
research in conditions specific to women and those that may present
differently in women than men. An equitable investment in women's
health research is critical to improving the health outcomes of women
and ensuring the future of research and discovery in this critical
field.
fiscal year 2021 report language request
National Institutes of Health Office of the Director
Women's Health Research Priorities.--The Committee is concerned
that funding for women's health research specifically related to
obstetrics and gynecology remains disproportionately lower than other
areas of research at the NIH. We believe more focus on this research is
required to address the rising maternal morbidity and mortality rates;
rising rates of chronic debilitating conditions in women; and stagnant
cervical cancer survival rates. The Committee encourages the NIH to
convene a consensus conference to include representatives from the
Office of Research on Women's Health (ORWH), the Eunice Kennedy Shriver
National Institute of Child Health and Human Development, and the
National Cancer Institute, as well as any other relevant NIH Institutes
and Centers and public stakeholders, to evaluate research currently
underway related to women's health. As part of the consensus
conference, NIH shall submit a report in the fiscal year 2022
Congressional Justification that identifies priority areas for
additional study to advance women's health research, including
reproductive sciences.
Funding to Support Research Related to COVID-19
WFRC recognizes and appreciates the actions already taken by
Congress to address the COVID-19 public health emergency, including
providing funding to NIH. Early data show that the virus manifests
itself differently in women than in men, and has serious effects beyond
those on the respiratory system. The NIH must prioritize research to
gain a better understanding of how and why this is happening. In recent
years, the NIH has done significant work to gain an understanding of
sex as a biological variable and of the role of sex must be examined as
it relates to COVID-19 infection, disease progression, and the
development of effective therapeutics. All COVID-19 related studies
must enroll participants that are balanced by gender.
It is critical that we also study the effects of COVID-19 on
conditions that are unique to or predominantly occur in women, such as
pregnancy. While limited data suggest that the outcome of COVID-19
during pregnancy is not worse than that of non-pregnant women, the
clinical experience of influenza, SARS and MERS infections indicates
that severe respiratory infections may worsen during pregnancy, which
could exacerbate morbidity and mortality during gestation. Poorly
justified concerns about the safety of medications and vaccines during
pregnancy have already led to the exclusion of pregnant women from
almost all pertinent COVID-19 clinical trial, including vaccine trials.
While the emerging reports do not find a significant effect of COVID-19
infection on the newborn, it remains to be determined whether the child
is affected in the long-term. Every attempt should be made, based on
sound scientific and clinical data, to include pregnant women in
clinical trials designed to prevent COVID-19, mitigate its severity,
and gain a better understanding of the virus. While most medical fields
have the ability to continue caring for their patients by telehealth or
to postpone elective procedures, pregnant women still require in-person
care in the clinics or hospitals in certain circumstances.
The COVID-19 pandemic has also drastically disrupted care for women
seeking fertility and contractive services and those with chronic
disease like cancer and benign gynecological disease. Moreover, we may
see an increase in gynecologic cancers, such as cervical and
endometrial cancers due to patients postponing or forgoing screenings
out of fear of exposure to the virus. These disruptions in care are
expected to continue for a significant period of time, and therefore it
is important to understand and mitigate the effect of COVID-19. We need
evidence as to how best to provide care for conditions specific to
women during the COVID-19 pandemic and future pandemics.
fiscal year 2021 funding request
To address the COVID-19 pandemic, we must devote research to
prevent, treat, and understand the deadly virus. We ask that the
Subcommittee on Labor, Health and Human Services, and Education, and
Related Agencies consider emergency funding for research (and all
related costs) dedicated to COVID-19 at the NIH, and prioritize
research on its effect on conditions that affect only women, such as
pregnancy, breast and ovarian cancer, benign gynecologic disease, and
delays in fertility and contraceptive services.
______
Prepared Statement of YMCA of the USA
Thank you, Chairman Blunt and Ranking Member Murray, for the
opportunity to provide testimony on behalf of our nation's 2,700 YMCAs
and the 22 million individuals--including eight million youth--we serve
annually. Every day, Ys work to address critical social issues that
affect our nation, nurturing the potential of every child and making
our communities healthier by preventing chronic disease and decreasing
disparities among minority populations.
As President and CEO of YMCA of the USA (Y-USA), I believe that our
country has never needed the YMCA more than it does now. With the
impact of COVID-19 changing nearly every aspect of daily life, I submit
this testimony in support of the attached programs, which the Y
leverages to ensure our communities are strong, safe and secure in a
time of great need.
The Y has been serving communities across the country for nearly
170 years--through both prosperous and challenging times. We have
weathered world wars, other pandemics, economic recessions and great
social and geopolitical upheaval. So, we know the Y will survive this
crisis. But we cannot thrive without partnerships and support.
Even with facilities closed, Ys are continuing to find ways to help
those in need by providing emergency child care for essential workers,
feeding programs for children without access to school meals, emergency
shelter for those experiencing homelessness, check-ins for seniors
facing isolation, blood drives, and holistic health and wellness
support for all ages. Many of these programs are supported by Federal
appropriations under your committee's jurisdiction.
As the nation's largest nonprofit provider of child care, we know
that child care is a backbone of the nation's economic recovery efforts
and essential to our health and public health infrastructure; parents
need safe, reliable child care to return to work. The Y is an
experienced community provider of quality care, with more than 1,400
early learning sites, 7,300 before- and after-school program sites, and
2,000 summer enrichment and learning programs, prior to COVID-19. Many
of these programs serve vulnerable children and families and leverage
Head Start, Child Care and Development Block Grant (CCDBG) and 21st
Century Community Learning Centers (21st CCLC) funding to ensure that
kids are safe, healthy, engaged and on a path to lifelong success.
With school and child care closures, out-of-school time--
traditionally thought of as the before- and after-school hours and
summer months--is now all the time. This crisis has underlined how
critical child care is for working families and how child care programs
help prepare young children for school and complement what children
learn in school. I am proud of the Y's ability to respond to community
needs during this crisis by transitioning from traditional child care
programs to operating more than 1,100 emergency child care sites for
essential personnel, more than 1,100 emergency feeding sites and
offering virtual youth development programming. Continuing to invest in
child care will help the Y ensure that young children and school-aged
children alike thrive.
We also know that COVID-19 has put stress on families who are
attempting to navigate new safety protocols, school closures, uncertain
child care, job losses, social isolation and barriers to support
services, which, unfortunately, lead to an increased risk of child
abuse and neglect. This impact is magnified since teachers, child care
providers and other adults trained in identifying and reporting abuse,
like those at the Y, have not been able to offer in-person services.
Strengthening the system to face these challenges will require
increased efforts across the entire child welfare continuum, which
depends on increased Federal funding. This includes increasing funds
for Child Abuse Prevention and Treatment Act (CAPTA) Titles I and II,
which enable states and community-service organizations, like our
YMCAs, to increase abuse prevention through locally driven services
that are essential to building healthy and thriving communities.
As the pandemic continues to adversely affect the physical health
of millions, the Y also continues to be a leading voice on health and
well-being. Over the past decade, the Y has driven innovation in
prevention and control of chronic disease in partnership with the CDC
to save lives and reduce healthcare spending. During this pandemic, our
nation is seeing that investing in chronic disease prevention programs
and evidence-based health interventions has never been more critical to
help mitigate the impacts of other diseases, especially among certain
racial and ethnic populations that have been disproportionately
affected by COVID-19. The CDC has supported the Y to scale evidence-
based initiatives such as the National Diabetes Prevention Program;
hypertension and blood pressure monitoring programs; comprehensive
cancer programs; and arthritis control, falls prevention and weight
management programs, among others, to save lives.
According to the CDC, older adults and individuals with serious
underlying medical conditions are likely to be at higher risk of severe
illness from COVID-19. Six out of ten adults in the United States have
at least one chronic disease and four out of ten have more than one.
This means people living with diabetes, hypertension, obesity, lung
disease and cancer are at a higher risk of becoming critically ill if
they contract COVID-19. Our evidence-based health intervention
programs, supported through the CDC's Center for Chronic Disease
Prevention and Health Promotion, prevent and help people better manage
these conditions. During the COVID-19 pandemic, most of our YMCAs have
moved their in-person evidence-based programs to virtual platforms and
have seen incredible uptake and retention rates. Ys have also placed
tens of thousands of check-in calls with seniors and other at-risk
populations to provide support, wellness and connection during this
time of isolation.
We are also acutely aware of growing unforeseen challenges arising
from the nation's aggressive, though necessary, COVID-19 response.
Recent data from Florida has shown that childhood drowning deaths in
the state have increased more than 100 percent during the months when
stay-at-home orders have been in place, with anecdotal data pointing to
drownings resulting from at-home working parents being overly tasked
and unable to monitor their children full-time. With summer
approaching, and stay-at-home orders remaining in place, funding for
drowning prevention programs and data collection at CDC's Injury Center
has never been more critical.
While no one is certain what the future holds, we do know that the
path forward for many of our Ys and the communities they serve will be
extremely challenging. The Y is ready to meet that challenge head-on.
We hope that you will take into consideration the accompanying fiscal
year 2021 Labor, Health and Human Services, Education and Related
Agencies appropriations requests for programs that fund many of these
vital services our communities rely on.
Thank you for your consideration of these requests; they will be
critical in ensuring the Y can help communities across the nation
survive and thrive during and beyond this trying time. We hope you will
be able to visit some of our Ys, when the time is appropriate, and see
firsthand the powerful impact these programs have on the lives of
individuals, children and families in our communities.
[This statement was submitted by Kevin Washington, President and
CEO, YMCA of the USA.]
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